We took Little Bug on the local Santa Train, thinking that this would be a better way for him to meet Santa. While he didn’t cry or yell, he did banish Santa to the other side of the train. Santa was permitted to sit next to him briefly for a picture- a very tense picture in which Little Bug appears to be attempting to will Santa to move with his glare of doom.
That night, Little Bug decided he wanted to write Santa a note. He first had to scour the magazines in the house for the picture of the toy he wanted. Then he taped it to a piece of paper and wrote his name at the bottom. Yep, wrote his name. Not necessarily in a linear fashion, but all 6 letters are there clear as day.
Next, he instructed me to write the letter. I started with Dear Santa-, however Little Bug felt that we should address him by his first and last name. So, we wrote Dear Santa Claus. Next, Little Bug instructed me to write “I want Hiro and Sodor Steamworks.” This was to be followed by “PSTUV” and then signed by Daddy Nick and Daddy Blake. Little Bug then took over the letter and drew a picture. When asked what the picture and PSTUV where for, he replied, “A supise for my daddies!”
Thursday, December 10, 2009
Spelling
Little Bug has become fascinated with spelling recently. He stands at the fridge for hours ordering and reordering his letters. Not stimming, but trying to make a word. He will yell out the letters and I will tell him if it is or isn’t a word. So far, he has spelled Up, Dog, and Nice on the fridge.
Orally, he can now spell Up, Dog, and his name from memory. He has begun to beg Nick and I how to spell our names and then works through the finger spelling of them over and over. If he gets it wrong, he asks us to spell our names and then begins to try some more.
Orally, he can now spell Up, Dog, and his name from memory. He has begun to beg Nick and I how to spell our names and then works through the finger spelling of them over and over. If he gets it wrong, he asks us to spell our names and then begins to try some more.
School Conference
Well, we had another parent teacher conference last week and it went amazingly well. His teacher said that she is amazed at his progress- he is now able to share with another child without prompting from an adult for 10 minutes. She didn’t expect him to be as comfortable as he is until his second year in the program.
She impressed us by going to an Autism conference at our local children’s hospital. We spent time talking about the spectrum and the differences between each kind of Autism and how basically every person with Autism is unique. We also discussed the possible changes that the DSM V might contain and how that would affect diagnoses and as well as school eligibility.
Finally, she told Nick and I a few things that we didn’t expect to hear. First, that Little Bug is the best behaved child in the class and she uses him as a peer model for all the other kids- including the peer models. She looks to him as a little leader in the class. She also stated that he is making progress on all his goals and well on his way to meeting some already. Nick and I thought it would take a lot longer than it has for him to make this progress. Finally, she said that except for the speech delay- his MLU is 2.2 and the typical range is 5 for his age group- she doesn’t feel that he qualifies for special education. She is glad that they are only evaluated every 3 years as she is afraid he would be denied next year and she wants to keep him in her class. We do too. He is flourishing there and learning a ton- letter recognition of the whole alphabet, counting to 39, and vital social skills.
She impressed us by going to an Autism conference at our local children’s hospital. We spent time talking about the spectrum and the differences between each kind of Autism and how basically every person with Autism is unique. We also discussed the possible changes that the DSM V might contain and how that would affect diagnoses and as well as school eligibility.
Finally, she told Nick and I a few things that we didn’t expect to hear. First, that Little Bug is the best behaved child in the class and she uses him as a peer model for all the other kids- including the peer models. She looks to him as a little leader in the class. She also stated that he is making progress on all his goals and well on his way to meeting some already. Nick and I thought it would take a lot longer than it has for him to make this progress. Finally, she said that except for the speech delay- his MLU is 2.2 and the typical range is 5 for his age group- she doesn’t feel that he qualifies for special education. She is glad that they are only evaluated every 3 years as she is afraid he would be denied next year and she wants to keep him in her class. We do too. He is flourishing there and learning a ton- letter recognition of the whole alphabet, counting to 39, and vital social skills.
Tuesday, December 1, 2009
It's holiday time again...
And this year is going to be fun. Little Bug has decided that he believes in Santa. This is huge. He is willing to accept the reality of an idea. Don't get him wrong- he isn't going to sit with him or hug him, but he will write him a letter or talk to him. Whenever Little Bug sees his dream toy, he says, "I'ma talk to Santa.".
Last year, the Christmas tree had to be tied to the wall and we had to fight Little Bug away from the light. This year, he has embraced it. Literally. When we put the tree up, he walked over to it and put his arms around it. "I love you fee." He gave it a hug and a kiss. He decorated it with fervor- directing where all the ornaments should go and what colors can be next to each other. The bottom half of our tree is regemented- same shapes with same shapes and same colors with same colors.
Little Bug has also decided that messy crafts are okay. He is able to tolerate paint on his hands as well as glitter, flour, sugar, and dirt. He still has a hard time with sticky stuff, but we have been able to do a ton of crafts. He has made four different kinds of ornaments, felt presents, and a paper chain for Christmas.
Nick and I are so excited. Its like a brand new experience. Last year was a bit hellish at times- he couldn't tolerate the family events and we didn't get to see many of our friends. This year is turning out different. He did amazing at a small Thanksgiving- he only needed 3 breaks in 4 hours. He was able to play with J and E this weekend for about 5 hours and only needed about 6 breaks. What's more exciting is that this year, he understands and is excited. Last year, there wasn't any understanding or excitement.
Last year, the Christmas tree had to be tied to the wall and we had to fight Little Bug away from the light. This year, he has embraced it. Literally. When we put the tree up, he walked over to it and put his arms around it. "I love you fee." He gave it a hug and a kiss. He decorated it with fervor- directing where all the ornaments should go and what colors can be next to each other. The bottom half of our tree is regemented- same shapes with same shapes and same colors with same colors.
Little Bug has also decided that messy crafts are okay. He is able to tolerate paint on his hands as well as glitter, flour, sugar, and dirt. He still has a hard time with sticky stuff, but we have been able to do a ton of crafts. He has made four different kinds of ornaments, felt presents, and a paper chain for Christmas.
Nick and I are so excited. Its like a brand new experience. Last year was a bit hellish at times- he couldn't tolerate the family events and we didn't get to see many of our friends. This year is turning out different. He did amazing at a small Thanksgiving- he only needed 3 breaks in 4 hours. He was able to play with J and E this weekend for about 5 hours and only needed about 6 breaks. What's more exciting is that this year, he understands and is excited. Last year, there wasn't any understanding or excitement.
Thursday, November 19, 2009
Wednesday, November 18, 2009
A short essay
Recently our family was asked to submit a short write up about Little Bug's biggest accomplishment and how Early Intervention has helped him. I expected this to be easy- I would know what it was and get it done. It was incredibly difficult for many reasons.
The first I struggled with is that it is hard to make people see the amazing in the struggles and accomplishments our children have. For example, Little Bug took his shirt off for the first time ever last night. That's huge! He has to sequence the events in order to get it off. He had to use motor planning in order to ensure that his arms, torso, neckm and head all worked towards that common goal. To most people, it would be assumed that our children can do this. We know that isn't always so.
Secondly, it was hard to pick out his biggest. We had a hard time looking at all the work that he has done and picking one part. How do you pick out the most amazing change? I know that no matter what our situations are, our children are constantly moving forward.
Lastly, we really wanted to make sure that we gave credit. While Nick and I work hard to help Little Bug achieve his highest, we have had a lot of help.
I would like to share our essay with you.
“Woooo-wooo! Hi, Thomas!” Little Bug said. He drove Percy past the shed so that he could say hello to Thomas. He then drove Percy to the freight yard in order to pick up a mail car. “Let’s go get Thomas!”
He lined up his trains and then began to count, “One, two, three, four, five, six, seven, eight, nine, TEN!”
We used to count the words Little Bug had. Each one is a gift that is treasured. Each word is met with exultation. Each word is a foot hold on a mountain getting us one step closer to Lennon’s highest potential- whatever that may be.
Little Bug was diagnosed with Autism and severe speech delays in July of 2008. At that time, he had 10 word approximations- Da (dad), la (water), go, ca-ca (car), Yu (yes), bu (bus), bo (boat), no, pu (puppy), fish. He never played functionally; instead he spun wheels, lined things up, and rolled cars back and forth. He couldn’t tell us if he was hurt, scared, tired, or hungry. Every day was plagued by uncertainty for us.
We were recommended to contact EI by our Primary Care Physician. Through our FRC, we were connected with the Birth to Three Development Center School. Little Bug was assigned a play group, a one on one Therapist, as well as an Occupational Therapist. When he first started, he tried to bite the therapists and other children. He would hide from his FRC and his therapists when they came to the house. Out of an hour of therapy, up to half would be spent getting him to work up to them. It paid off.
With them, he flourished. Every week, they would challenge his repetitive behavior- moving cars out of line so that they would be driven. Stacking blocks were made into bridges. Trains were used to make deliveries rather than spinning wheels. They broke down playing into sequential steps and made it click for him.
They endlessly strove for personal contact between Lennon and everyone else. They taught us how to get him to look at us. They hid toys around the room so that he would look and point to request. Nick and I were challenged to make every interaction an opportunity to teach Little Bug a skill- saying hello when someone greets you, pointing to what you want, making a car pretend to drive, tolerating bathing and dressing, and a million other tasks that are assumed to be achieved but that we knew were not guaranteed.
We have lost count of words. Little Bug says so many that we can’t keep track. He plays- really plays with trains, cars, puzzles, and us. He says hello to his peers and is learning to share. Nick and I have learned to be the kind of parents Little Bug needs because of Birth to Three and our FRC. They have given Nick and I the tools to begin to do this independently. They have given us future resources for help.
His therapists and FRC will always be dear to our hearts. Their dedication, talent, and love for our family is amazing. They do things that people find impossible. They deal with families who are suffering and struggling. They deal with children who can be aggressive and have meltdowns that last for hours. They treasure rewards that other people would overlook- the joys of seeing a family succeed, messy hugs, and sticky kisses. We will always be grateful for what they have done for us.
The first I struggled with is that it is hard to make people see the amazing in the struggles and accomplishments our children have. For example, Little Bug took his shirt off for the first time ever last night. That's huge! He has to sequence the events in order to get it off. He had to use motor planning in order to ensure that his arms, torso, neckm and head all worked towards that common goal. To most people, it would be assumed that our children can do this. We know that isn't always so.
Secondly, it was hard to pick out his biggest. We had a hard time looking at all the work that he has done and picking one part. How do you pick out the most amazing change? I know that no matter what our situations are, our children are constantly moving forward.
Lastly, we really wanted to make sure that we gave credit. While Nick and I work hard to help Little Bug achieve his highest, we have had a lot of help.
I would like to share our essay with you.
“Woooo-wooo! Hi, Thomas!” Little Bug said. He drove Percy past the shed so that he could say hello to Thomas. He then drove Percy to the freight yard in order to pick up a mail car. “Let’s go get Thomas!”
He lined up his trains and then began to count, “One, two, three, four, five, six, seven, eight, nine, TEN!”
We used to count the words Little Bug had. Each one is a gift that is treasured. Each word is met with exultation. Each word is a foot hold on a mountain getting us one step closer to Lennon’s highest potential- whatever that may be.
Little Bug was diagnosed with Autism and severe speech delays in July of 2008. At that time, he had 10 word approximations- Da (dad), la (water), go, ca-ca (car), Yu (yes), bu (bus), bo (boat), no, pu (puppy), fish. He never played functionally; instead he spun wheels, lined things up, and rolled cars back and forth. He couldn’t tell us if he was hurt, scared, tired, or hungry. Every day was plagued by uncertainty for us.
We were recommended to contact EI by our Primary Care Physician. Through our FRC, we were connected with the Birth to Three Development Center School. Little Bug was assigned a play group, a one on one Therapist, as well as an Occupational Therapist. When he first started, he tried to bite the therapists and other children. He would hide from his FRC and his therapists when they came to the house. Out of an hour of therapy, up to half would be spent getting him to work up to them. It paid off.
With them, he flourished. Every week, they would challenge his repetitive behavior- moving cars out of line so that they would be driven. Stacking blocks were made into bridges. Trains were used to make deliveries rather than spinning wheels. They broke down playing into sequential steps and made it click for him.
They endlessly strove for personal contact between Lennon and everyone else. They taught us how to get him to look at us. They hid toys around the room so that he would look and point to request. Nick and I were challenged to make every interaction an opportunity to teach Little Bug a skill- saying hello when someone greets you, pointing to what you want, making a car pretend to drive, tolerating bathing and dressing, and a million other tasks that are assumed to be achieved but that we knew were not guaranteed.
We have lost count of words. Little Bug says so many that we can’t keep track. He plays- really plays with trains, cars, puzzles, and us. He says hello to his peers and is learning to share. Nick and I have learned to be the kind of parents Little Bug needs because of Birth to Three and our FRC. They have given Nick and I the tools to begin to do this independently. They have given us future resources for help.
His therapists and FRC will always be dear to our hearts. Their dedication, talent, and love for our family is amazing. They do things that people find impossible. They deal with families who are suffering and struggling. They deal with children who can be aggressive and have meltdowns that last for hours. They treasure rewards that other people would overlook- the joys of seeing a family succeed, messy hugs, and sticky kisses. We will always be grateful for what they have done for us.
Tuesday, November 10, 2009
Words
Its is raining wonderful and glorious words at our house and I wanted to share some:
hullabaloo
delicious
wonderful
awesome
flamingo
beautiful
amazing
great
Correct use of I, you, me, etc.
his/her
His speech is blossoming. Sentences are running out of him faster than I can keep track. He now comes up to you and says, "I want to talk." He then will pick a random topic- snow, frocidols (crocodiles to you), the dog, the school bus, and talk about them.
He can now answer questions like- What do you do when it is cold? What is a bed for?
hullabaloo
delicious
wonderful
awesome
flamingo
beautiful
amazing
great
Correct use of I, you, me, etc.
his/her
His speech is blossoming. Sentences are running out of him faster than I can keep track. He now comes up to you and says, "I want to talk." He then will pick a random topic- snow, frocidols (crocodiles to you), the dog, the school bus, and talk about them.
He can now answer questions like- What do you do when it is cold? What is a bed for?
What makes you special?
Little Bug, Nick and I have been having lots of conversations regarding boys and girls and moms and dads. It started last Wednesday when Little Bug looked at me at dinner and said, "MOMMY!"
I didn't get upset. I didn't get angry. I simply asked, "What do you mean?"
"...says you are a girl." Interesting. Apparently, someone has taken it upon themselves to discuss with Little Bug who really is a daddy and who isn't.
Now, I am not naive- I know that Little Bug and I will talk about this a lot- to the point of making me crazy. I know that he may hate me for a while when he gets older and his friends give him shit. I know that he will always know, above all else, Nick and I love him more than our own lives and that is what matters. I believe that he will accept it and be proud of having two daddies- even if one is a special daddy.
What I do mind is that someone took it upon themselves to get into this with my son. While he has told us who said this, they deny it. It's a tricky situation.
But I digress and want to get back to the really cool part of all this mess. As I said, we have been talking about daddies and mommies and parts etc. I explained to him that I was born a girl, but am a boy. Whether he understands that at 3, I don't know, but I want to be honest with him. Regardless, he seemed unphased and went back to calling me Daddy Blake.
Yesterday, he brought it up again. He began counting the number of boys and girls in our house. He stated, "4 boys- you, me, Fink, Nick. 1 girl- you."
I looked at him and asked, "Am I a special boy?" I asked this hoping that it would ease us back into the whole transgender thing.
Little Bug looked at me and beamed, "Yes! Me special too!"
"I know you are, bug. You will always be special and amazing to Daddy Nick and I. What makes me special?"
He looked at me and beamed again. "Because I love you."
I am happy to special that way above all others.
I didn't get upset. I didn't get angry. I simply asked, "What do you mean?"
"...says you are a girl." Interesting. Apparently, someone has taken it upon themselves to discuss with Little Bug who really is a daddy and who isn't.
Now, I am not naive- I know that Little Bug and I will talk about this a lot- to the point of making me crazy. I know that he may hate me for a while when he gets older and his friends give him shit. I know that he will always know, above all else, Nick and I love him more than our own lives and that is what matters. I believe that he will accept it and be proud of having two daddies- even if one is a special daddy.
What I do mind is that someone took it upon themselves to get into this with my son. While he has told us who said this, they deny it. It's a tricky situation.
But I digress and want to get back to the really cool part of all this mess. As I said, we have been talking about daddies and mommies and parts etc. I explained to him that I was born a girl, but am a boy. Whether he understands that at 3, I don't know, but I want to be honest with him. Regardless, he seemed unphased and went back to calling me Daddy Blake.
Yesterday, he brought it up again. He began counting the number of boys and girls in our house. He stated, "4 boys- you, me, Fink, Nick. 1 girl- you."
I looked at him and asked, "Am I a special boy?" I asked this hoping that it would ease us back into the whole transgender thing.
Little Bug looked at me and beamed, "Yes! Me special too!"
"I know you are, bug. You will always be special and amazing to Daddy Nick and I. What makes me special?"
He looked at me and beamed again. "Because I love you."
I am happy to special that way above all others.
Tuesday, November 3, 2009
New Skills
This has been an amazing week for our family. We have gotten to see some truly amazing things come from Little Bug. For example, we were at Hama and Bumpa’s and were able to show him how he does simple subtraction. I asked him how many pumpkins you would have if you had three pumpkins and took away 1 pumpkin. He didn’t even blink before saying, “2 punkins!”
Later, Bumpa and Little Bug were drawing on their chalkboard and Bumpa was trying to get him to spell his name. That didn’t take much work. Bumpa started with L and paused. Little Bug looked at him and said E…N…N…O…N. Hama and Bumpa were just amazed. So were Nick and I- we had no idea that he could do this.
His drawing skills are blooming as well. This week he has drawn the following- a jellyfish, a recognizable happy face- eyes (with pupils) nose, mouth, teeth, ears; and a correctly drawn pumpkin.
Finally, he impressed the hell out of his teacher and us yesterday. At the end of their day, the staff in his classroom goes around to each child and asks them what they did today. When his teacher asked Little Bug, he said, “I played outside with my friends- J, M, and L. It was fun and they make me happy.” First of all, those are the longest unprompted sentences that I can think of. But more importantly and impressively, he spoke about feelings and friends- something that he almost never does.
Later, Bumpa and Little Bug were drawing on their chalkboard and Bumpa was trying to get him to spell his name. That didn’t take much work. Bumpa started with L and paused. Little Bug looked at him and said E…N…N…O…N. Hama and Bumpa were just amazed. So were Nick and I- we had no idea that he could do this.
His drawing skills are blooming as well. This week he has drawn the following- a jellyfish, a recognizable happy face- eyes (with pupils) nose, mouth, teeth, ears; and a correctly drawn pumpkin.
Finally, he impressed the hell out of his teacher and us yesterday. At the end of their day, the staff in his classroom goes around to each child and asks them what they did today. When his teacher asked Little Bug, he said, “I played outside with my friends- J, M, and L. It was fun and they make me happy.” First of all, those are the longest unprompted sentences that I can think of. But more importantly and impressively, he spoke about feelings and friends- something that he almost never does.
Want Potty Feet Pease!
Little Bug had a huge break through this weekend- voluntarily putting on his Thomas the Tank Engine costume in order to go trick or treating. We tried asking him and that didn’t go well. Nick and I had already decided we weren’t going to make it an issue, because at that point, it would be for us and not him.
Well, it took 3 trick-or-treaters before he changed his mind. You could see his little brain turning it over again and again- ridiculous outfits and saying tick or feet gets me candy… I can do that. As soon as he broke this down, he grabbed his costume and but bolted out the door.
We had a great time doing this. He went up to the doors on his own free will. He knocked on the door and, at first said, “TICK OR FEET PEASE!” Gradually, he forgot that you should say trick or treat and began to say, “Want potty feet pease!” Some people wanted to know what the heck he was asking for while others just laughed hysterically and gave him huge handfuls of candy for being cute.
Nick and I had a great time. It was amazing to see him do this. We felt lucky because we were able to witness a huge milestone for our child. Something we weren’t sure would ever happen. Something that we gave up. We are so grateful for this. We are given opportunities to appreciate milestones and events that everyone assumes will always happen.
Well, it took 3 trick-or-treaters before he changed his mind. You could see his little brain turning it over again and again- ridiculous outfits and saying tick or feet gets me candy… I can do that. As soon as he broke this down, he grabbed his costume and but bolted out the door.
We had a great time doing this. He went up to the doors on his own free will. He knocked on the door and, at first said, “TICK OR FEET PEASE!” Gradually, he forgot that you should say trick or treat and began to say, “Want potty feet pease!” Some people wanted to know what the heck he was asking for while others just laughed hysterically and gave him huge handfuls of candy for being cute.
Nick and I had a great time. It was amazing to see him do this. We felt lucky because we were able to witness a huge milestone for our child. Something we weren’t sure would ever happen. Something that we gave up. We are so grateful for this. We are given opportunities to appreciate milestones and events that everyone assumes will always happen.
Wednesday, October 28, 2009
General Chaos
This is my new nickname for Little Bug and how things have been recently. On Thursday, we had to take Little Bug to the Urgent Care because he had a fever and a horrible cough that started on Tuesday. Friday and Saturday were much worse for him- he started to not eat and say that it hurt to drink. Luckily, he is much better and able to go back to school.
Starting last Sunday, Little Bug has begun waking up at 4 or so every morning. Yesterday he woke up at 3:30. As he doesn’t take naps- of his own volition- we have tried having him go to bed earlier- which only results in waking up earlier.
The bright side of this chaos is that he has some wonderful emerging skills. He has learned two new games- “I am…” and “I see…” “I see” is the same as I Spy. “I am” involves picking an animal and either acting it out or telling some details about it. He has become very good at pretending through this game and has begun to do it independently. He will stand on the couch and flap his arms and say, “I am a bird!” He will hop on all fours and say, “I am a frog.”
He also demonstrated the concept of wanting- something besides food, water, etc. While this sounds like an annoying thing- the beginning of the I want monster even- it is cool to watch him understand that people have wants besides needs. He doesn’t say “I want (insert toy)” like most kids his age without seeing the toy or touching it. All three year olds who I know immediately begin asking for a toy when they see a commercial or activity in a show. Maybe Little Bug is delayed because we don’t have TV, but I doubt that. He has plenty of advertising aimed at him. Just look at the inserts they put in DVDs for children- stocked full of toys, books, games, etc.
He was watching the new Thomas movie, which now includes commercials for toys at the beginning, which I hate, but I digress. He began to flap and jump when he saw the Spin and Fix Thomas. Well, Little Bug wasn’t done with just wanting. He looked at me and said, “I want that toy. Santa bing it for me on Pissmas.” Not only has he demonstrated an understanding of want, but an understanding of a concept- like Christmas and Santa. I guess we all know what Santa is bringing him on Pissmas.
On Sunday, we carved pumpkins. He did a great job of touching the nasty, stringy gunk in the middle- I think my sensory issues with that showed more than his did. He loved getting to say whether the faces were happy faces or scary faces. That he was willing to allow us to carve the pumpkins at all was huge. Last year, when we attempted to carve pumpkins he lost it. He didn't want the pumpkins to change- they had to stay just the way they were.
On Monday, he asked to sit on the potty. We were excited because he fell off the wagon at home since he has started going to the bathroom on the potty at school. Well, he not only sat on the potty, but he pooped on the potty. While Nick and I were totally surprised, he seemed absolutely shocked. He stood up and pointed at the toilet,yelling, “POOOPPPP!!!”
All in all a chaotic and amazing week.
Starting last Sunday, Little Bug has begun waking up at 4 or so every morning. Yesterday he woke up at 3:30. As he doesn’t take naps- of his own volition- we have tried having him go to bed earlier- which only results in waking up earlier.
The bright side of this chaos is that he has some wonderful emerging skills. He has learned two new games- “I am…” and “I see…” “I see” is the same as I Spy. “I am” involves picking an animal and either acting it out or telling some details about it. He has become very good at pretending through this game and has begun to do it independently. He will stand on the couch and flap his arms and say, “I am a bird!” He will hop on all fours and say, “I am a frog.”
He also demonstrated the concept of wanting- something besides food, water, etc. While this sounds like an annoying thing- the beginning of the I want monster even- it is cool to watch him understand that people have wants besides needs. He doesn’t say “I want (insert toy)” like most kids his age without seeing the toy or touching it. All three year olds who I know immediately begin asking for a toy when they see a commercial or activity in a show. Maybe Little Bug is delayed because we don’t have TV, but I doubt that. He has plenty of advertising aimed at him. Just look at the inserts they put in DVDs for children- stocked full of toys, books, games, etc.
He was watching the new Thomas movie, which now includes commercials for toys at the beginning, which I hate, but I digress. He began to flap and jump when he saw the Spin and Fix Thomas. Well, Little Bug wasn’t done with just wanting. He looked at me and said, “I want that toy. Santa bing it for me on Pissmas.” Not only has he demonstrated an understanding of want, but an understanding of a concept- like Christmas and Santa. I guess we all know what Santa is bringing him on Pissmas.
On Sunday, we carved pumpkins. He did a great job of touching the nasty, stringy gunk in the middle- I think my sensory issues with that showed more than his did. He loved getting to say whether the faces were happy faces or scary faces. That he was willing to allow us to carve the pumpkins at all was huge. Last year, when we attempted to carve pumpkins he lost it. He didn't want the pumpkins to change- they had to stay just the way they were.
On Monday, he asked to sit on the potty. We were excited because he fell off the wagon at home since he has started going to the bathroom on the potty at school. Well, he not only sat on the potty, but he pooped on the potty. While Nick and I were totally surprised, he seemed absolutely shocked. He stood up and pointed at the toilet,yelling, “POOOPPPP!!!”
All in all a chaotic and amazing week.
Wednesday, October 21, 2009
Pica Update
We received the results of the blood work in the mail yesterday- CBC, iron, zinc, and lead levels. We are relieved to know that he doesn’t have lead poisoning. Unfortunately, this debunks our doctor’s hope that rather than being caused because of his developmental disability, it was caused by iron or zinc deficiency. He was hoping this because, in his experience, children who exhibit pica from those deficiencies usually no longer exhibit the behavior once the deficiencies are addressed with a customized supplement. At this point, we have to wait to for our doctor to be in office so that we can talk about appropriate interventions.
We wanted to share some basic information about pica. Pica is a pattern of eating non food items that must persist for longer than a month in order to qualify for a diagnosis. Commonly eaten non food items are:
Clay
Chalk
Soil
Paper
Soap
Glass
Additionally, it includes the persistent eating of things that could be considered food or food ingredients:
Ice
Salt
Flour
Raw Potato
Raw Rice
Raw Noodles
Raw Beans
(items in bold are items that Little Bug eats)
Complications that can arise from pica can include:
Lead poisoning
Bowel problems
Bowel obstructions
Dental injuries
Parasitic infections
Malnutrition
Iron or Zinc deficiencies
At times, having information is overwhelming. It is difficult to read these things and think about our son. The worry we feel about this is only compounded by the limited pain response that Little Bug exhibits. In reviewing the articles provided, we noticed that children with developmental disabilities often exhibit pica for a much more prolonged time. No one understands why this is something that sticks with this group of children longer than other children.
The interventions for pica sound mostly rooted in behavioral interventions.
We wanted to share some basic information about pica. Pica is a pattern of eating non food items that must persist for longer than a month in order to qualify for a diagnosis. Commonly eaten non food items are:
Clay
Chalk
Soil
Paper
Soap
Glass
Additionally, it includes the persistent eating of things that could be considered food or food ingredients:
Ice
Salt
Flour
Raw Potato
Raw Rice
Raw Noodles
Raw Beans
(items in bold are items that Little Bug eats)
Complications that can arise from pica can include:
Lead poisoning
Bowel problems
Bowel obstructions
Dental injuries
Parasitic infections
Malnutrition
Iron or Zinc deficiencies
At times, having information is overwhelming. It is difficult to read these things and think about our son. The worry we feel about this is only compounded by the limited pain response that Little Bug exhibits. In reviewing the articles provided, we noticed that children with developmental disabilities often exhibit pica for a much more prolonged time. No one understands why this is something that sticks with this group of children longer than other children.
The interventions for pica sound mostly rooted in behavioral interventions.
Tuesday, October 20, 2009
Interesting article
Mercury levels similar in kids with, without autism: study
by Jean-Louis Santini Jean-louis Santini – Mon Oct 19, 5:38 pm ET
WASHINGTON (AFP) – Blood levels of mercury are similar in children with autism and in those developing typically, a study released Monday found.
The research at the University of California-Davis, however, does not address whether the heavy metal, known to be able to cause developmental problems in children, plays a role in causing the disorder.
"We looked at blood-mercury levels in children who had autism and children who did not have autism," said lead author Irva Hertz-Picciotto, a professor of environmental and occupational health.
"The bottom line is that blood-mercury levels in both populations were essentially the same. However, this analysis did not address a causal role, because we measured mercury after the diagnosis was made," she added.
Earlier research has shown that mercury can adversely affect development of the nervous system.
The research, published in the journal "Environmental Health Perspectives," is the largest investigation to date on mercury levels in the blood of autistic children.
The study was done as part of the California-based Childhood Autism Risks from Genetics and the Environment (CHARGE) Study, of which Hertz-Picciotto is lead investigator.
CHARGE is a comprehensive epidemiological investigation that seeks to identify factors associated with autism and discover clues to its origins.
Children who took part were aged between 24 and 60 months and diagnosed with autism as well as children with other developmental disorders. Children who developing typically were used as controls.
The study probed sources of mercury in the participants' environments, such as fish consumption, personal-care products (such as nasal sprays or earwax removal products, which may contain mercury) and the types of vaccinations they received, researchers said.
"The study also examined whether children who have dental fillings made of the silver-colored mercury-based amalgam and who grind their teeth or chew gum had higher blood-mercury levels," they added.
"In fact, those children who both chew gum and have amalgams did have higher blood-mercury levels.
"But the consumption of fish -- such as tuna and other ocean fish and freshwater fish -- was far and away the biggest and most significant predictor of blood-mercury levels," they stressed.
The study was carried out on 452 children: 249 were diagnosed as autistic, 143 were deemed to be developing normally and 60 showed retarded development such as Down Syndrome.
"Just as autism is complex, with great variation in severity and presentation, it is highly likely that its causes will be found to be equally complex. It's time to abandon the idea that a single 'smoking gun' will emerge to explain why so many children are developing autism," said Hertz-Picciotto.
"The evidence to date suggests that, without taking account of both genetic susceptibility and environmental factors, the story will remain incomplete," she added.
by Jean-Louis Santini Jean-louis Santini – Mon Oct 19, 5:38 pm ET
WASHINGTON (AFP) – Blood levels of mercury are similar in children with autism and in those developing typically, a study released Monday found.
The research at the University of California-Davis, however, does not address whether the heavy metal, known to be able to cause developmental problems in children, plays a role in causing the disorder.
"We looked at blood-mercury levels in children who had autism and children who did not have autism," said lead author Irva Hertz-Picciotto, a professor of environmental and occupational health.
"The bottom line is that blood-mercury levels in both populations were essentially the same. However, this analysis did not address a causal role, because we measured mercury after the diagnosis was made," she added.
Earlier research has shown that mercury can adversely affect development of the nervous system.
The research, published in the journal "Environmental Health Perspectives," is the largest investigation to date on mercury levels in the blood of autistic children.
The study was done as part of the California-based Childhood Autism Risks from Genetics and the Environment (CHARGE) Study, of which Hertz-Picciotto is lead investigator.
CHARGE is a comprehensive epidemiological investigation that seeks to identify factors associated with autism and discover clues to its origins.
Children who took part were aged between 24 and 60 months and diagnosed with autism as well as children with other developmental disorders. Children who developing typically were used as controls.
The study probed sources of mercury in the participants' environments, such as fish consumption, personal-care products (such as nasal sprays or earwax removal products, which may contain mercury) and the types of vaccinations they received, researchers said.
"The study also examined whether children who have dental fillings made of the silver-colored mercury-based amalgam and who grind their teeth or chew gum had higher blood-mercury levels," they added.
"In fact, those children who both chew gum and have amalgams did have higher blood-mercury levels.
"But the consumption of fish -- such as tuna and other ocean fish and freshwater fish -- was far and away the biggest and most significant predictor of blood-mercury levels," they stressed.
The study was carried out on 452 children: 249 were diagnosed as autistic, 143 were deemed to be developing normally and 60 showed retarded development such as Down Syndrome.
"Just as autism is complex, with great variation in severity and presentation, it is highly likely that its causes will be found to be equally complex. It's time to abandon the idea that a single 'smoking gun' will emerge to explain why so many children are developing autism," said Hertz-Picciotto.
"The evidence to date suggests that, without taking account of both genetic susceptibility and environmental factors, the story will remain incomplete," she added.
Fallen off the wagon....
Well, Little Bug has fallen off the potty training wagon- at home that is. He is back to avoiding it and creating quite a fiasco when asked about. At school, however, he loves to go potty. His teacher says that he has asked to go everyday and goes every time he asks.
We are unsure how to handle this. On one hand, there is the desperate want from the parents to not have to buy diapers. To not have to deal with the judgment in public over having him in diapers still. It is amazing what people feel okay saying. Yesterday, I was called a "lazy parent" because my son still wore diapers. I looked at the person and said, "You have no idea what my life is like. Go judge someone else."
On the other hand, we don't know what we are doing. Every time we push him, he goes back. Every time we think we have it figured out, it goes awry. At this point, we still think that giving him time is the best.
Little Bug and tried an experiment the other night as I wanted to know if he could recognize the need to go to the bathroom and the sensation of wetness. I let him put on his big boy underwear and hang out. He peed in them and didn't acknowledge it. He didn't acknowledge that they were wet or that he had to pee. Given this, maybe we are putting the cart before the horse and rushing him. I know I'm not an expert, but to me, it seems that a child should have an understanding of the sensation of wet versus dry and the need to pee or poop.
If anyone has tips or suggestions, please pass them our way.
We are unsure how to handle this. On one hand, there is the desperate want from the parents to not have to buy diapers. To not have to deal with the judgment in public over having him in diapers still. It is amazing what people feel okay saying. Yesterday, I was called a "lazy parent" because my son still wore diapers. I looked at the person and said, "You have no idea what my life is like. Go judge someone else."
On the other hand, we don't know what we are doing. Every time we push him, he goes back. Every time we think we have it figured out, it goes awry. At this point, we still think that giving him time is the best.
Little Bug and tried an experiment the other night as I wanted to know if he could recognize the need to go to the bathroom and the sensation of wetness. I let him put on his big boy underwear and hang out. He peed in them and didn't acknowledge it. He didn't acknowledge that they were wet or that he had to pee. Given this, maybe we are putting the cart before the horse and rushing him. I know I'm not an expert, but to me, it seems that a child should have an understanding of the sensation of wet versus dry and the need to pee or poop.
If anyone has tips or suggestions, please pass them our way.
Wednesday, October 14, 2009
Conversations
A couple nights ago, Little Bug cuddled up to me in bed. “Daddy Bake?”
“Yes Bug?”
“I swim whale sharks.”
“You want to swim with whale sharks?”
“Yeah… tiger sharks, bee white white sharks, sand tiger sharks, blue sharks, hammer sharks- scawy for me. Just look. Bee hurt me.”
“You’re right; all those sharks could hurt you. Can whale sharks hurt you?”
“NO! No teef!”
“You’re right, they don’t have teeth.”
“You come with me?”
“You want me to go swim with whale sharks with you…. Anytime.”
He rolled over, content in this conversation. He closed his eyes and cuddled in between me and Nick. Within seconds he was asleep.
When Nick and Little Bug come pick me up from the bus stop, I always ask Little Bug about his day. He normally says that he “paid twains” and that’s about it. Sometimes, I get a garbled sentence about his teacher with lots of hand motions. Yesterday, he surprised us all.
“How was your day, Little Bug?”
“I paid twains.”
I rolled my eyes and sighed thinking that this would be the usual end of our conversation. “How was your lunch?”
“I ate. Raidins. Ham. Capcakes.” He frowned furiously. It was obvious that he was really trying to figure something out. “I shared with O. O is my friend. N. too!”
I burst into tears. He has never mentioned friends. He has never mentioned people from his class before. He went to his last school with O and although O was Little Bug’s favorite person to play with, he never talked about him. In fact, they never talked to each other. They would hold hands during Red Light, Green Light, and play next to each other. Apparently, he always holds O’s hand when getting off the bus and going to lunch.
Little Bug has also decided he has a west fiend- which I am assuming is a best friend… our dog Frank. He gave him a hug last night and said, “Frank, you my west fiend.”
“Yes Bug?”
“I swim whale sharks.”
“You want to swim with whale sharks?”
“Yeah… tiger sharks, bee white white sharks, sand tiger sharks, blue sharks, hammer sharks- scawy for me. Just look. Bee hurt me.”
“You’re right; all those sharks could hurt you. Can whale sharks hurt you?”
“NO! No teef!”
“You’re right, they don’t have teeth.”
“You come with me?”
“You want me to go swim with whale sharks with you…. Anytime.”
He rolled over, content in this conversation. He closed his eyes and cuddled in between me and Nick. Within seconds he was asleep.
When Nick and Little Bug come pick me up from the bus stop, I always ask Little Bug about his day. He normally says that he “paid twains” and that’s about it. Sometimes, I get a garbled sentence about his teacher with lots of hand motions. Yesterday, he surprised us all.
“How was your day, Little Bug?”
“I paid twains.”
I rolled my eyes and sighed thinking that this would be the usual end of our conversation. “How was your lunch?”
“I ate. Raidins. Ham. Capcakes.” He frowned furiously. It was obvious that he was really trying to figure something out. “I shared with O. O is my friend. N. too!”
I burst into tears. He has never mentioned friends. He has never mentioned people from his class before. He went to his last school with O and although O was Little Bug’s favorite person to play with, he never talked about him. In fact, they never talked to each other. They would hold hands during Red Light, Green Light, and play next to each other. Apparently, he always holds O’s hand when getting off the bus and going to lunch.
Little Bug has also decided he has a west fiend- which I am assuming is a best friend… our dog Frank. He gave him a hug last night and said, “Frank, you my west fiend.”
Friday, October 9, 2009
His own system
Little Bug has taken over his own potty training. He has developed his own system:
1. Yell, “I WANT POTTY!”
2. Remove Pants
3. Run through the house (allow for several laps)
4. Eventually arrive at bathroom
5. Put step stool in front of toilet- make sure to spend a few minutes positioning it just so.
6. Put potty ring on toilet in a haphazard manner that seems to increase the chance of butt dunkage by 500%.
7. Take off diaper
8. Climb onto toilet
9. Pee
10. Laugh and Clap
11. Run through the house- as these are victory laps, make sure to yell, jump, laugh, and seem pretty damn proud of yourself.
12. Ask for a “potty feet” (potty treat in Little Bug words)
I personally think he has a great system. It involves more steps than I had expected, but hey- we all have our own methods. Nick and I have decided that we aren’t meddling. He obviously felt like he needed to control the situation in order to do it.
In the past three days, he has gone potty on the potty 10 times- twice on Tuesday, 3 times on Wednesday, and 5 times yesterday! All by himself and always when he needs to go. He doesn’t sit on the potty for hours- like he did before. He doesn’t need the incentive toys. He just does through the above system- which in itself can take 5 to 20 minutes- and is done.
1. Yell, “I WANT POTTY!”
2. Remove Pants
3. Run through the house (allow for several laps)
4. Eventually arrive at bathroom
5. Put step stool in front of toilet- make sure to spend a few minutes positioning it just so.
6. Put potty ring on toilet in a haphazard manner that seems to increase the chance of butt dunkage by 500%.
7. Take off diaper
8. Climb onto toilet
9. Pee
10. Laugh and Clap
11. Run through the house- as these are victory laps, make sure to yell, jump, laugh, and seem pretty damn proud of yourself.
12. Ask for a “potty feet” (potty treat in Little Bug words)
I personally think he has a great system. It involves more steps than I had expected, but hey- we all have our own methods. Nick and I have decided that we aren’t meddling. He obviously felt like he needed to control the situation in order to do it.
In the past three days, he has gone potty on the potty 10 times- twice on Tuesday, 3 times on Wednesday, and 5 times yesterday! All by himself and always when he needs to go. He doesn’t sit on the potty for hours- like he did before. He doesn’t need the incentive toys. He just does through the above system- which in itself can take 5 to 20 minutes- and is done.
Thursday, October 8, 2009
Pica
Little Bug has been eaten foreign objects from the time he could roll over. When he was really tiny, he would roll over and pick carpet fuzz off the carpet and eat it. When he could crawl, all bets were off. Anything- and I do mean anything became fair game for eating. Here is just a sampling of some of the bizarre crap our wonderful Little Bug has eaten:
Carpet Fuzz
Grass
Flowers
The pins from a screen door- which he disassembled while Nick was peeing
Paper- towels, TP, notebook, etc.
Sylica Gel
Packing Peanuts
Wheels- off of trains, cars, etc.
Legos
Pieces of my table- we have bite marks to prove it.
No we aren’t bad parents. We don’t abandon him for hours and not watch him. It is a compulsion. He literally cannot stop himself. He can tell me that the pictures I took of his birthday at the zoo should not be eaten, but when I let him look at them, he immediately puts them in his mouth.
Anything and everything is an option for consumption. He has eaten salt, dog food, laminating paper, stickers, tattoos, parts of toys, sticks, leaves, etc. than I can remember.
We are and have been worried about the potential for bowels obstructions and lead poisoning. He plays with lots of toys from goodwill, which ofcourse means toys made who knows when by what standards and where. He loves Thomas the Tank engine, which means he eats a lot of paint of the engines.
His doctor wants to rule out a zinc or iron deficiency as well as anemia, but believes that he has Pica and has diagnosed him as such.
What we do about this, we are a bit lost. We watch him like hawk because in this way he like every 9 month old- if it’s in my hand, it goes in my mouth. We don’t leave things out. He can’t be left alone at all because he eats things. He tries to eat things when we’re there. (We jokingly call it stealing) When there aren’t small things to steal and eat, he goes after big things- like the furniture. No lie, we have several bites out of our table and anyone who has been over has seen it. We have tried the OT solutions- providing a chewie, trying to make sure that he is modulated by given him a more robust sensory diet, providing food choices that are very resistant (carrots, celery, red vines, etc.). It doesn’t matter. He finds a way to eat this stuff.
For example, when I do laundry, he has to come too for obvious reasons. Unfortunately, he has figured out that he can bite the wall in the laundry room as well as the insulation around the door when he can’t get a hold of things like grass, dryer lint, or dryer sheets to try to eat while I am busy. (By the way, I know I make it sound like he plans this and I *know* he doesn’t because regardless of the reaction, he still does it.)
We should find out about his blood work on Monday.
Carpet Fuzz
Grass
Flowers
The pins from a screen door- which he disassembled while Nick was peeing
Paper- towels, TP, notebook, etc.
Sylica Gel
Packing Peanuts
Wheels- off of trains, cars, etc.
Legos
Pieces of my table- we have bite marks to prove it.
No we aren’t bad parents. We don’t abandon him for hours and not watch him. It is a compulsion. He literally cannot stop himself. He can tell me that the pictures I took of his birthday at the zoo should not be eaten, but when I let him look at them, he immediately puts them in his mouth.
Anything and everything is an option for consumption. He has eaten salt, dog food, laminating paper, stickers, tattoos, parts of toys, sticks, leaves, etc. than I can remember.
We are and have been worried about the potential for bowels obstructions and lead poisoning. He plays with lots of toys from goodwill, which ofcourse means toys made who knows when by what standards and where. He loves Thomas the Tank engine, which means he eats a lot of paint of the engines.
His doctor wants to rule out a zinc or iron deficiency as well as anemia, but believes that he has Pica and has diagnosed him as such.
What we do about this, we are a bit lost. We watch him like hawk because in this way he like every 9 month old- if it’s in my hand, it goes in my mouth. We don’t leave things out. He can’t be left alone at all because he eats things. He tries to eat things when we’re there. (We jokingly call it stealing) When there aren’t small things to steal and eat, he goes after big things- like the furniture. No lie, we have several bites out of our table and anyone who has been over has seen it. We have tried the OT solutions- providing a chewie, trying to make sure that he is modulated by given him a more robust sensory diet, providing food choices that are very resistant (carrots, celery, red vines, etc.). It doesn’t matter. He finds a way to eat this stuff.
For example, when I do laundry, he has to come too for obvious reasons. Unfortunately, he has figured out that he can bite the wall in the laundry room as well as the insulation around the door when he can’t get a hold of things like grass, dryer lint, or dryer sheets to try to eat while I am busy. (By the way, I know I make it sound like he plans this and I *know* he doesn’t because regardless of the reaction, he still does it.)
We should find out about his blood work on Monday.
It’s potty time!
The past two days have shown an emerging skill- asking for the potty when needed. We had basically given up on potty training for a while. It seems like when parents get really excited and really want something to happen, that is normally when things seem to fall apart. I think children feel pressured and just can’t perform under the stress of the parent expectation. Even if we don’t tell them that we expect it, I believe that through emotion and subtle facial and tonal cues, they can sense the importance and weight of the expectation.
Like I said, we gave up. It wasn’t worth the tears, the screaming, the self injuring, and stress. It wasn’t worth trying to force him to comply because that’s what you do.
So imagine Nick’s shock when on Tuesday Little Bug walked up and said, “Want to sit on potty.”
Little Bug walked into the bathroom, dragged the stepstool over and put the potty ring in. He then took off his pants and diaper and sat on the potty. Nick was reaching for the basket of incentives- toys only played with on the potty- when Little Bug peed. He clapped for himself and smiled. Flushed the toilet and ran to get a diaper and a potty treat.
He has now repeated this feat 4 more times. Each time he asks, he actually needs to go. He sits on the toilet, pees within seconds of sitting, and gets down.
This is wonderful! We’ll see how long it lasts and how often he can do it in a day without interference. We really don’t want to force him into this.
Apparently at school he has been trying to go potty. It was part of his IEP, however because we weren’t having success at home, the school wasn’t trying. Several times during a class, the teacher and aides will prompt the kids who are either potty trained or actively potty training to go to the bathroom. The little kids all go in and go potty. Little Bug feels that he should be allowed to participate and has been going in with the other kids.
He will now be potty training at school- but only if he wants.
Like I said, we gave up. It wasn’t worth the tears, the screaming, the self injuring, and stress. It wasn’t worth trying to force him to comply because that’s what you do.
So imagine Nick’s shock when on Tuesday Little Bug walked up and said, “Want to sit on potty.”
Little Bug walked into the bathroom, dragged the stepstool over and put the potty ring in. He then took off his pants and diaper and sat on the potty. Nick was reaching for the basket of incentives- toys only played with on the potty- when Little Bug peed. He clapped for himself and smiled. Flushed the toilet and ran to get a diaper and a potty treat.
He has now repeated this feat 4 more times. Each time he asks, he actually needs to go. He sits on the toilet, pees within seconds of sitting, and gets down.
This is wonderful! We’ll see how long it lasts and how often he can do it in a day without interference. We really don’t want to force him into this.
Apparently at school he has been trying to go potty. It was part of his IEP, however because we weren’t having success at home, the school wasn’t trying. Several times during a class, the teacher and aides will prompt the kids who are either potty trained or actively potty training to go to the bathroom. The little kids all go in and go potty. Little Bug feels that he should be allowed to participate and has been going in with the other kids.
He will now be potty training at school- but only if he wants.
I AM A LIAR (at least my son wants you to think so)
During Little Bug’s parent teacher conference, we talked about one of his new behaviors- he gets stuck repeating the following, “I’m Little Bug. I’m three.” He will say this over and over again.
Nick and I have tried to get him to say “What’s your name?” but this never works out because when we prompt him, he tells us his name. During the conference we explained that we think (operative word here) is his attempt to initiate social interaction, unfortunately he can’t ask what someone’s name is.
(If you know anything about foreshadowing and children, you know where I am going here.)
On the way to the doctor’s office, he looked at me in the car and seemed to really think. His little brows furrowed and he frowned. He opened his mouth and would start to speak and stop. I knew that whatever was going to come out was really hard for him.
Finally, he looked at me and said, “What’s your name?”
A huge smile stretched across my face as tears spilled over. “I’m Daddy Blake. What’s your name?”
We continued this game all the way to the doctor’s office. Where he asked for the nurse's name.
I am happy to be this kind of liar.
Nick and I have tried to get him to say “What’s your name?” but this never works out because when we prompt him, he tells us his name. During the conference we explained that we think (operative word here) is his attempt to initiate social interaction, unfortunately he can’t ask what someone’s name is.
(If you know anything about foreshadowing and children, you know where I am going here.)
On the way to the doctor’s office, he looked at me in the car and seemed to really think. His little brows furrowed and he frowned. He opened his mouth and would start to speak and stop. I knew that whatever was going to come out was really hard for him.
Finally, he looked at me and said, “What’s your name?”
A huge smile stretched across my face as tears spilled over. “I’m Daddy Blake. What’s your name?”
We continued this game all the way to the doctor’s office. Where he asked for the nurse's name.
I am happy to be this kind of liar.
Showered in Praise
“Best behaved in the class…” “Extremely intelligent…” “Outgrow the program…” “Academic path…”
We had Little Bug’s first parent teacher conference and were astounded at just how well he is doing. The teacher stated that he is the best behaved in the class. Some of the other children, including the peer models, are “out of control” and at times he helps bring them back to a normal behavior range through his calm, quiet play.
She also stated that he shows a great aptitude for academics and is concerned that he will outgrow the program before he “graduates”. Speaking of graduating, when we wrote his IEP last year, we were told that he would be in this program for 3 years- when he is 3, 4 and 5. He would be expected to start kindergarten when he is 6 because he wouldn’t be ready emotionally or cognitively until then. He teacher explained that she will have a hard time challenging him until he is 5. 6 would be extreme. She feels that we should start looking into the K1 integrated classrooms now in order to find the best set up for him.
She stated that during class, he has demonstrated that he knows letters, the sounds letters make, and at times, possible word recognition. She has been doing “alphabet” cards in which she shows the circle a card that has the letter- capital and lower case- a word with the letter and the sound the letter makes. Little Bug is always first in line for this and always the first to answer.
We gave her some more supports- a picture schedule for sequencing for potty training- and a “choice box” based that I made based off a commenter’s suggestion (THANK YOU, by the way). For his choice box, I took a regular gift box and wrote “Little Bug’s Choice Box” followed by “FIRST” and “THEN”. I explained to the teacher our concern about his perseveration on trains. Basically, you put a couple of pictures of choices from a picture schedule and tell the child that first they can play trains, but in 15 more minutes, they need to make a choice from the choice box. He was incredibly excited for this yesterday and seemed really interested in it.
The conference went amazingly well. We came away with some great suggestions for supporting Little Bug in his letters and writing- Handwriting without Tears for Toddlers- and learned about a new teacher store.
We are so proud of him and glad that he wasn’t limited by people’s expectations of what a child with ASD should be. One of the specialists seemed surprised at all the things he could do while having ASD, which I have to admit made me a bit agitated. This person kept saying, "Well, it is shocking that he can do this. Normal ASD kids can't do XXX." (BTW, the whole NORMAL ASD KIDS made me laugh.) I think I said four times the following:
“ASD doesn’t mean that someone should have lower expectations of their potential because of their deficits. It doesn't mean that their obvious skills should be written off or abandoned. It means that they have challenges. Those challenges however do not limit the potential. While we spend time working on the deficits and challenges, we need to embrace the child’s strengths and encourage growth there. Many people on the spectrum, like Temple Grandin, have strongly encouraged this and we believe it.”
The teacher thanked us for our passion about our son, our willingness to help her and be his advocate. She stated she was excited for his abilities and that he was a fresh challenge to her teaching skills.
We had Little Bug’s first parent teacher conference and were astounded at just how well he is doing. The teacher stated that he is the best behaved in the class. Some of the other children, including the peer models, are “out of control” and at times he helps bring them back to a normal behavior range through his calm, quiet play.
She also stated that he shows a great aptitude for academics and is concerned that he will outgrow the program before he “graduates”. Speaking of graduating, when we wrote his IEP last year, we were told that he would be in this program for 3 years- when he is 3, 4 and 5. He would be expected to start kindergarten when he is 6 because he wouldn’t be ready emotionally or cognitively until then. He teacher explained that she will have a hard time challenging him until he is 5. 6 would be extreme. She feels that we should start looking into the K1 integrated classrooms now in order to find the best set up for him.
She stated that during class, he has demonstrated that he knows letters, the sounds letters make, and at times, possible word recognition. She has been doing “alphabet” cards in which she shows the circle a card that has the letter- capital and lower case- a word with the letter and the sound the letter makes. Little Bug is always first in line for this and always the first to answer.
We gave her some more supports- a picture schedule for sequencing for potty training- and a “choice box” based that I made based off a commenter’s suggestion (THANK YOU, by the way). For his choice box, I took a regular gift box and wrote “Little Bug’s Choice Box” followed by “FIRST” and “THEN”. I explained to the teacher our concern about his perseveration on trains. Basically, you put a couple of pictures of choices from a picture schedule and tell the child that first they can play trains, but in 15 more minutes, they need to make a choice from the choice box. He was incredibly excited for this yesterday and seemed really interested in it.
The conference went amazingly well. We came away with some great suggestions for supporting Little Bug in his letters and writing- Handwriting without Tears for Toddlers- and learned about a new teacher store.
We are so proud of him and glad that he wasn’t limited by people’s expectations of what a child with ASD should be. One of the specialists seemed surprised at all the things he could do while having ASD, which I have to admit made me a bit agitated. This person kept saying, "Well, it is shocking that he can do this. Normal ASD kids can't do XXX." (BTW, the whole NORMAL ASD KIDS made me laugh.) I think I said four times the following:
“ASD doesn’t mean that someone should have lower expectations of their potential because of their deficits. It doesn't mean that their obvious skills should be written off or abandoned. It means that they have challenges. Those challenges however do not limit the potential. While we spend time working on the deficits and challenges, we need to embrace the child’s strengths and encourage growth there. Many people on the spectrum, like Temple Grandin, have strongly encouraged this and we believe it.”
The teacher thanked us for our passion about our son, our willingness to help her and be his advocate. She stated she was excited for his abilities and that he was a fresh challenge to her teaching skills.
Tuesday, October 6, 2009
New Autism Study
Autism May Be More Common Than Thought
Survey Shows 1 in 91 Children May Have Autism Spectrum Disorder
By Kathleen Doheny
WebMD Health NewsReviewed by Louise Chang, MD
Oct. 5, 2009 -- About 1% of U.S. children, or about one in 91, may have autism or an autism spectrum disorder, according to two new national surveys.
The new estimate is a dramatic increase from the previously accepted number of one in 150. But experts who discussed the findings of the two new surveys -- one released today and the other due out before year's end -- urged caution in interpreting the new information about the developmental disorders.
A new survey by the CDC found that about 1% of U.S. children are affected by an autism spectrum disorder, says Ileana Arias, PhD, deputy director of the CDC.
No further details were available on the CDC survey, due to be released in full later this year.
What do we do for adults? If 1% of children are diagnosed, what services and resources do we have for the over half a million children who become adults?
Survey Shows 1 in 91 Children May Have Autism Spectrum Disorder
By Kathleen Doheny
WebMD Health NewsReviewed by Louise Chang, MD
Oct. 5, 2009 -- About 1% of U.S. children, or about one in 91, may have autism or an autism spectrum disorder, according to two new national surveys.
The new estimate is a dramatic increase from the previously accepted number of one in 150. But experts who discussed the findings of the two new surveys -- one released today and the other due out before year's end -- urged caution in interpreting the new information about the developmental disorders.
A new survey by the CDC found that about 1% of U.S. children are affected by an autism spectrum disorder, says Ileana Arias, PhD, deputy director of the CDC.
No further details were available on the CDC survey, due to be released in full later this year.
What do we do for adults? If 1% of children are diagnosed, what services and resources do we have for the over half a million children who become adults?
ASL update
I give a lot of credit for Little Bug's language to ASL. ASL is what we turned to between diagnosis and services- those horribly long months on wait list after wait list. His first language understanding was ASL- that was where the first phrases, questions, and comments came from. ASL is what gave him a voice. When asked what languages he speaks, we always add ASL because he still uses it.
We are now using ASL for letters. This weekend, Little Bug learned the alphabet in ASL. I am amazed at how quickly he picked it up. We went through it twice, and now he is randomly saying letters and signing the correct sign.
In other updates, he knows the days of the week. How and where he learned this is beyond me, but he does know them. He looked at Nick and I on Sunday and said, "Ride school bus morrow- Mondy." He was right.
He is having a hard time with stimming again. He has begun to go to his room and open and close the doors on his dresser and yell "Open and Shut! Open and Shut!" over and over again. If something is red, brown, green, or blue (Thomas people know where I'm going), he has to sing the Thomas the Tank Engine theme song.
Biting and hitting are creeping up in instances. It seems like this is his way of modulating himself as he is doing it whenever he is feeling something extreme. For example, he and I were wrestling and goofing off yesterday. I was tickling him and he was laughing hysterically- those belly laughs that shake his body and make everyone in the room laugh as well. Well, he bit my face. I didn't get mad or loud, I just said OW! He immediately apologized and we went back to playing. He later was biting himself because he was laughing.
I am thankful that we will be starting OT in 17 days.
We are now using ASL for letters. This weekend, Little Bug learned the alphabet in ASL. I am amazed at how quickly he picked it up. We went through it twice, and now he is randomly saying letters and signing the correct sign.
In other updates, he knows the days of the week. How and where he learned this is beyond me, but he does know them. He looked at Nick and I on Sunday and said, "Ride school bus morrow- Mondy." He was right.
He is having a hard time with stimming again. He has begun to go to his room and open and close the doors on his dresser and yell "Open and Shut! Open and Shut!" over and over again. If something is red, brown, green, or blue (Thomas people know where I'm going), he has to sing the Thomas the Tank Engine theme song.
Biting and hitting are creeping up in instances. It seems like this is his way of modulating himself as he is doing it whenever he is feeling something extreme. For example, he and I were wrestling and goofing off yesterday. I was tickling him and he was laughing hysterically- those belly laughs that shake his body and make everyone in the room laugh as well. Well, he bit my face. I didn't get mad or loud, I just said OW! He immediately apologized and we went back to playing. He later was biting himself because he was laughing.
I am thankful that we will be starting OT in 17 days.
Expected Outcome
In the reading homework of the studies that most insurance companies use to decide medical eligibility, I was shocked. Over and over again, the words “normal child” was used. The studies regarding therapies such as LOVAS, TEACH, PROMPT, LEAP, etc., it appeared that these therapies were often discouraged because the outcome was not of that of a “normal child”.
I cannot understand. If the assumption is that ASD is a lifelong disability as stated in the studies, why are we expecting an outcome of a “normal child”? Shouldn’t the expected outcome be that of less dependence? A chance to learn skills to be as independent as possible?
Maybe we are weird, but we have pretty much accepted that things will not be normal. With this diagnosis come a different path and set of expectations. While we absolutely still hope and push Little Bug to do his best, we have also changed our expectations. We want him to reach his full potential. We want him to be as independent as possible. We want him to have a life defined on his terms as successful.
It seems like information is missing from these studies. How many families were studied from the time the child was diagnosed into adulthood? Have we verified how many children who received any of the denied therapies were less dependent on adult care? Have we looked at how children grew into adulthood after these therapies and were able to have a job?
I cannot understand. If the assumption is that ASD is a lifelong disability as stated in the studies, why are we expecting an outcome of a “normal child”? Shouldn’t the expected outcome be that of less dependence? A chance to learn skills to be as independent as possible?
Maybe we are weird, but we have pretty much accepted that things will not be normal. With this diagnosis come a different path and set of expectations. While we absolutely still hope and push Little Bug to do his best, we have also changed our expectations. We want him to reach his full potential. We want him to be as independent as possible. We want him to have a life defined on his terms as successful.
It seems like information is missing from these studies. How many families were studied from the time the child was diagnosed into adulthood? Have we verified how many children who received any of the denied therapies were less dependent on adult care? Have we looked at how children grew into adulthood after these therapies and were able to have a job?
Friday, October 2, 2009
HOLY CROW!
I want to be "hopefully cautious" when I blog about this. Little Bug is exhibiting some interesting skills:
-Letter recognition- 19 of them baby!
-Possible word recognition- open, up, no
-Writing- to date, he has written, correctly and untaught- "N" "O" "A" "C"
I don't want to get to excited.... oh, forget! We are thrilled! What we do with these new found skills is a bit beyond us, but we will figure it out.
-Letter recognition- 19 of them baby!
-Possible word recognition- open, up, no
-Writing- to date, he has written, correctly and untaught- "N" "O" "A" "C"
I don't want to get to excited.... oh, forget! We are thrilled! What we do with these new found skills is a bit beyond us, but we will figure it out.
Wednesday, September 30, 2009
Insurance Update
This week, we got a little more bad news and some really good news. The bad- Little Bug's therapy will need to be reviewed every 25 appointments to verify that it is medically necessary. Based on their communication, this will be based off his records as well as clinical criteria- which is about a 25 page document that we need to read and understand.
The good news is that just about everyone involved in this situation messed up. The information provided to us was wrong again. This time, confirmed with multiple people as my company and our insurance company, we were told that he has unlimited visits for OT and speech based on the fact that he has a neuro-developmental clause.
We also found out that the insurance company wasn't paying attention to the fact that Little Bug was diagnosed with ASD. This in turned messed up the billing, which is why several hundred dollars of claims were denied.
This means, that our average monthly health bills will go from $1166.00 to $700.00 a month! This is wonderful!
The good news is that just about everyone involved in this situation messed up. The information provided to us was wrong again. This time, confirmed with multiple people as my company and our insurance company, we were told that he has unlimited visits for OT and speech based on the fact that he has a neuro-developmental clause.
We also found out that the insurance company wasn't paying attention to the fact that Little Bug was diagnosed with ASD. This in turned messed up the billing, which is why several hundred dollars of claims were denied.
This means, that our average monthly health bills will go from $1166.00 to $700.00 a month! This is wonderful!
All by himself
On Monday, I was asked to attend part of the school day with Little Bug in order to make a picture schedule for his teacher. This entailed creating many transitions based on his daily schedule. This also gave me an opportunity to see his class in action.
I was really impressed on the sensory options that were available- sand and water play, play dough, a quiet spot, as well as an indoor fort. I also liked the way the room was set up- lots of options, yet displayed in a way that was not overwhelming.
I was concerned with some of the other things I saw. Little Bug was allowed to play trains for an hour without any interaction encouraged. By the staff, he wasn't prompted to share or have conversations. He wasn't encouraged to pick a new task by anyone but me.
The teacher and I had a discussion about his picture schedule. She stated that she had wanted a picture that says, "I share toys!", however the SLP stated that was a more behavioral approach. I told her I agreed with the SLP. The behavioral approach needed to be consistent as well as direct. For example, you could say, "Little Bug, share a piece of track with L." Once he complies, get excited. Do this over and over again.
I don't know how to nicely explain that the support level in class needs to be stepped up a bit. Little Bug should be directed to make new choices as he will perseverate on the trains all day if you let him- and they do. We get a letter telling us what he did each day; each day, it says I played trains!
I am concerned about our approach. This teacher is kind, patient, flexible, and willing to learn. She has asked for help and opinions. She has been very open in her communication. I want to make sure that we aren't telling her how to run her class, but what our son needs.
I was really impressed on the sensory options that were available- sand and water play, play dough, a quiet spot, as well as an indoor fort. I also liked the way the room was set up- lots of options, yet displayed in a way that was not overwhelming.
I was concerned with some of the other things I saw. Little Bug was allowed to play trains for an hour without any interaction encouraged. By the staff, he wasn't prompted to share or have conversations. He wasn't encouraged to pick a new task by anyone but me.
The teacher and I had a discussion about his picture schedule. She stated that she had wanted a picture that says, "I share toys!", however the SLP stated that was a more behavioral approach. I told her I agreed with the SLP. The behavioral approach needed to be consistent as well as direct. For example, you could say, "Little Bug, share a piece of track with L." Once he complies, get excited. Do this over and over again.
I don't know how to nicely explain that the support level in class needs to be stepped up a bit. Little Bug should be directed to make new choices as he will perseverate on the trains all day if you let him- and they do. We get a letter telling us what he did each day; each day, it says I played trains!
I am concerned about our approach. This teacher is kind, patient, flexible, and willing to learn. She has asked for help and opinions. She has been very open in her communication. I want to make sure that we aren't telling her how to run her class, but what our son needs.
Friday, September 25, 2009
&)#^%*# Insurance
Nick and I were given a nasty surprise in more ways than one from our insurance yesterday. Let me give you a brief outline of our insurance situation.
Our insurance premiums are $400 a month. Our co-pays are as follows:
• Regular doctor appointments: $25.00
• Specialist Appointments: $35.00
• Urgent Care: $75.00
• Emergency Room: $100.00
• Hospital Stay: $300.00
Additionally, we each get 60 visits to short term rehabilitation a year- part of the specialist bucket and cost $35.00 each. Originally, we were told that Little Bug’s OT would be considered short term rehabilitation, but not his speech. We were also told that we would need a referral for each service ($25.00 each appointment) every three months- to be sure he still needs the therapy- from his PCP. Also, they would need confirmation of diagnosis from his neurologist ($35.00 each appointment) as well as updated case information, every 6 months. Just to be able to have therapy, we are looking at $170.00 in co-pays.
We found out yesterday that we were misinformed and his speech is part of his short term rehabilitation visits. This means that we only have enough visits for 6 months a year. The co-pays for these visits total $2,100.00. After the six months, we will have to pay for speech and occupational therapy out of pocket. Our speech therapist’s rate is $145.00 and the OT clinic is $210.00. For a conservative estimate of 20 visits each, that will bring our out of pocket expenses to:
SPEECH: $2,900.00
OT: $4,200.00
Our total therapy costs for speech a year will be $3,950.00. Our total costs for OT a year will be $5,250.00.
One year of medical bills for items solely related to Autism is:
$9,200.00
This doesn’t cover a behaviorist. Even if Little Bug only saw a behaviorist once a month that would be another $1,200.00. If he saw them 4 times a month, $4,800.00. Our total medical bills for Autism would be between $10,400.00 and $14,000.00.
This doesn’t include home therapy supplies. This doesn’t include doctor’s appointment for things that happen because of his Autism- when he hurts himself because he doesn’t seem to feel pain, when he eats glass or like last night, scratches his actual eyeball when self injuring.
Nick and I are lost. We don’t know what to do. We will run out of visits for this plan year in February. Our visits will renew in April, and then run out again in October.
There is one side that wants to say, we need to set reasonable goals and just do the best we can. Fudge a little- every other week appointments for speech and OT to get them covered with more home therapy. Maybe see a behaviorist on a consultant basis only- think, in case of Autism emergency break glass.
The other side of us says that we should sacrifice everything. Give up our jobs, apartment, and current lifestyle, move in with our family who has so graciously offered, and get it done. Again, this is a huge risk. We don’t know what we would qualify for in terms of assistance. We don’t know if Nick would be able to find full time work we are considering moving as it is a severely economically depressed area of Washington. We know that the area is much more conservative and this will create a whole new set of difficulties for Little Bug and our family.
Bottom line, this is with insurance. Total bills, including premiums, co-pays, and out of pocket expenses for just Speech and OT a year is $14,000.00.
I am assuming that this is normal or even low. Most people don’t put these numbers out like this. I know- its taboo to discuss money. But you know what? If people don’t discuss it, it will never change. People need to see the raw numbers. The debt. The choices faced. We are left wondering what enough is. What is enough for us? What do we do for Little Bug? How do we make this right?
I am certain we aren’t the only ones facing this. Unfortunately, I don’t have the answer. I don’t have a solution.
Our insurance premiums are $400 a month. Our co-pays are as follows:
• Regular doctor appointments: $25.00
• Specialist Appointments: $35.00
• Urgent Care: $75.00
• Emergency Room: $100.00
• Hospital Stay: $300.00
Additionally, we each get 60 visits to short term rehabilitation a year- part of the specialist bucket and cost $35.00 each. Originally, we were told that Little Bug’s OT would be considered short term rehabilitation, but not his speech. We were also told that we would need a referral for each service ($25.00 each appointment) every three months- to be sure he still needs the therapy- from his PCP. Also, they would need confirmation of diagnosis from his neurologist ($35.00 each appointment) as well as updated case information, every 6 months. Just to be able to have therapy, we are looking at $170.00 in co-pays.
We found out yesterday that we were misinformed and his speech is part of his short term rehabilitation visits. This means that we only have enough visits for 6 months a year. The co-pays for these visits total $2,100.00. After the six months, we will have to pay for speech and occupational therapy out of pocket. Our speech therapist’s rate is $145.00 and the OT clinic is $210.00. For a conservative estimate of 20 visits each, that will bring our out of pocket expenses to:
SPEECH: $2,900.00
OT: $4,200.00
Our total therapy costs for speech a year will be $3,950.00. Our total costs for OT a year will be $5,250.00.
One year of medical bills for items solely related to Autism is:
$9,200.00
This doesn’t cover a behaviorist. Even if Little Bug only saw a behaviorist once a month that would be another $1,200.00. If he saw them 4 times a month, $4,800.00. Our total medical bills for Autism would be between $10,400.00 and $14,000.00.
This doesn’t include home therapy supplies. This doesn’t include doctor’s appointment for things that happen because of his Autism- when he hurts himself because he doesn’t seem to feel pain, when he eats glass or like last night, scratches his actual eyeball when self injuring.
Nick and I are lost. We don’t know what to do. We will run out of visits for this plan year in February. Our visits will renew in April, and then run out again in October.
There is one side that wants to say, we need to set reasonable goals and just do the best we can. Fudge a little- every other week appointments for speech and OT to get them covered with more home therapy. Maybe see a behaviorist on a consultant basis only- think, in case of Autism emergency break glass.
The other side of us says that we should sacrifice everything. Give up our jobs, apartment, and current lifestyle, move in with our family who has so graciously offered, and get it done. Again, this is a huge risk. We don’t know what we would qualify for in terms of assistance. We don’t know if Nick would be able to find full time work we are considering moving as it is a severely economically depressed area of Washington. We know that the area is much more conservative and this will create a whole new set of difficulties for Little Bug and our family.
Bottom line, this is with insurance. Total bills, including premiums, co-pays, and out of pocket expenses for just Speech and OT a year is $14,000.00.
I am assuming that this is normal or even low. Most people don’t put these numbers out like this. I know- its taboo to discuss money. But you know what? If people don’t discuss it, it will never change. People need to see the raw numbers. The debt. The choices faced. We are left wondering what enough is. What is enough for us? What do we do for Little Bug? How do we make this right?
I am certain we aren’t the only ones facing this. Unfortunately, I don’t have the answer. I don’t have a solution.
Thursday, September 24, 2009
Bus Update
Little Bug has had a substitute bus driver since Tuesday. Monday was an awful day for the bus- screaming, yelling, hitting, biting, etc. Tuesday onward was a complete 180. He was willing to get on the bus on Tuesday. The bus driver had an aide who helped Little Bug to his seat.
Yesterday, he was jumping up and down with excitement about the bus! Now, to me, this says that the root problem was probably with the bus driver. She is nice and all, but she did speak loudly with an incredibly high sickeningly sweet voice. If she comes back, we are going to try to give her some suggestions about dealing with Little Bug.
One final note about the bus- he saw a school bus last night and said I love the bus. I like Ms. Carla (Ms. Carla is the substitute who was done something amazing.)
Yesterday, he was jumping up and down with excitement about the bus! Now, to me, this says that the root problem was probably with the bus driver. She is nice and all, but she did speak loudly with an incredibly high sickeningly sweet voice. If she comes back, we are going to try to give her some suggestions about dealing with Little Bug.
One final note about the bus- he saw a school bus last night and said I love the bus. I like Ms. Carla (Ms. Carla is the substitute who was done something amazing.)
Wednesday, September 23, 2009
Confessions
This post isn’t really about Little Bug or ASD, although they are featured heavily. It isn’t about getting suggestions or brainstorming, although that is always helpful. It isn’t about health insurance or co-pays, although they are a part of it. It is simply about some things I struggle with and wanted to get out.
Confession- this isn’t getting any easier. I expected that over time, it would. Somehow, I would accept certain things and move forward. I thought that I would be okay with people not understanding by now. I thought that at some point, I would let go of the sorrow I feel when someone brags about something their 2 year old can do. Something I watch Little Bug struggle with and can’t do. At some point, I wouldn’t be jealous for Little Bug.
Confession- money makes me insane. Now that Little Bug is out of the Birth to Three program, we are trying to cover all of the therapies ourselves and with insurance. Our insurance, good insurance, covers Speech and OT with a $35 co-pay visit. In a month, that is $280.00 of just co-pays. It doesn’t cover a behaviorist at all- who we have decided we need because for some behaviors, we are at a loss. The behaviorists I have found through my own research and recommendations from friends and local hospitals start at $100.00 an hour. One was $190.00 an hour. If we go with the cheap one, that’s another $400 in therapy costs a month. A total of $680.00 a month on just therapies. I have a feeling that the above amounts are typical for a family with ASD and probably on the low end because we have insurance. Like Ted Kennedy says, it does feel awful to look at someone you love and know that there is something that could help them, but not be able to afford it. If we try to pay for all of the above therapies, we are $200 short a month. Nick and I are left with the following dilemmas-
Do we save for retirement or pay for Little Bug’s therapy? How do we do either while keeping our heads above financial water?
Confession- I feel guilty a lot. I feel like I should have known what was going on with Little Bug earlier. I was so depressed and felt panicky about him all the time (even if I didn’t let people know it). I feel like I should have listened to myself. I feel like if I don’t spend every waking minute with him, something will go wrong. I feel guilty at times for the growth that Little Bug has made. It seems unfair the way this works out. How some kids progress and others progress differently. It makes my heart ache and tears spring to the surface.
Confession- I hate the term splinter skill. There are lots of people- NT people- who are really good at one thing; in fact, most of us are. This achievement isn’t looked at as an abnormality. It is expected. Yet when people with ASD are good at something, it is called a splinter skill and minimized as though somehow, because they are Autistic, having amazing skills is less amazing.
Confession- I worry insanely for the future. I worry about whether he will be able to work or live on his own. I worry about how to prepare for the worst case scenario. I worry about Nick and I being able to last through this turmoil of split shifts and only seeing each other part of two days a week only for another three years. I worry about what happens when Little Bug is too big for me to make him do anything. Right now, he is too heavy to carry for long and is over three feet tall. What happens when he is over 4 feet tall and 70 pounds?
Confession- his self injuring isn’t stopping. It scares me. It makes me hurt so badly to watch him bite, scratch, hit, and throw his head on the ground. I feel so small. At times, it is all I can do to stay with him and hold him while he thrashes. I hate watching him hurt himself. I hate that there isn’t anything that I can do. This weekend, he hit himself hard enough to bruise his face and hand and cause them both to swell.
Final confession- I realize that the answer lies within us. I realize that I must give myself absolution. I realize that I still need to work on myself in order to make this work. I realize that I can’t worry so much. I realize that I need to listen to Little Bug and be in the moment. I need to stop mourning for things that haven’t happened yet and appreciate what is happening now. I realize that I need to do my best and accept that mistakes will happen. I realize that I have the power to make a difference, in Little Bug’s life and in others. I realize that there is always hope.
What do you realize?
Confession- this isn’t getting any easier. I expected that over time, it would. Somehow, I would accept certain things and move forward. I thought that I would be okay with people not understanding by now. I thought that at some point, I would let go of the sorrow I feel when someone brags about something their 2 year old can do. Something I watch Little Bug struggle with and can’t do. At some point, I wouldn’t be jealous for Little Bug.
Confession- money makes me insane. Now that Little Bug is out of the Birth to Three program, we are trying to cover all of the therapies ourselves and with insurance. Our insurance, good insurance, covers Speech and OT with a $35 co-pay visit. In a month, that is $280.00 of just co-pays. It doesn’t cover a behaviorist at all- who we have decided we need because for some behaviors, we are at a loss. The behaviorists I have found through my own research and recommendations from friends and local hospitals start at $100.00 an hour. One was $190.00 an hour. If we go with the cheap one, that’s another $400 in therapy costs a month. A total of $680.00 a month on just therapies. I have a feeling that the above amounts are typical for a family with ASD and probably on the low end because we have insurance. Like Ted Kennedy says, it does feel awful to look at someone you love and know that there is something that could help them, but not be able to afford it. If we try to pay for all of the above therapies, we are $200 short a month. Nick and I are left with the following dilemmas-
Do we save for retirement or pay for Little Bug’s therapy? How do we do either while keeping our heads above financial water?
Confession- I feel guilty a lot. I feel like I should have known what was going on with Little Bug earlier. I was so depressed and felt panicky about him all the time (even if I didn’t let people know it). I feel like I should have listened to myself. I feel like if I don’t spend every waking minute with him, something will go wrong. I feel guilty at times for the growth that Little Bug has made. It seems unfair the way this works out. How some kids progress and others progress differently. It makes my heart ache and tears spring to the surface.
Confession- I hate the term splinter skill. There are lots of people- NT people- who are really good at one thing; in fact, most of us are. This achievement isn’t looked at as an abnormality. It is expected. Yet when people with ASD are good at something, it is called a splinter skill and minimized as though somehow, because they are Autistic, having amazing skills is less amazing.
Confession- I worry insanely for the future. I worry about whether he will be able to work or live on his own. I worry about how to prepare for the worst case scenario. I worry about Nick and I being able to last through this turmoil of split shifts and only seeing each other part of two days a week only for another three years. I worry about what happens when Little Bug is too big for me to make him do anything. Right now, he is too heavy to carry for long and is over three feet tall. What happens when he is over 4 feet tall and 70 pounds?
Confession- his self injuring isn’t stopping. It scares me. It makes me hurt so badly to watch him bite, scratch, hit, and throw his head on the ground. I feel so small. At times, it is all I can do to stay with him and hold him while he thrashes. I hate watching him hurt himself. I hate that there isn’t anything that I can do. This weekend, he hit himself hard enough to bruise his face and hand and cause them both to swell.
Final confession- I realize that the answer lies within us. I realize that I must give myself absolution. I realize that I still need to work on myself in order to make this work. I realize that I can’t worry so much. I realize that I need to listen to Little Bug and be in the moment. I need to stop mourning for things that haven’t happened yet and appreciate what is happening now. I realize that I need to do my best and accept that mistakes will happen. I realize that I have the power to make a difference, in Little Bug’s life and in others. I realize that there is always hope.
What do you realize?
Tuesday, September 22, 2009
I know you're trying to tell me something!
Little Bug had a really hard time at school yesterday. It all started when he had to ride the bus. This week he has begun to ride it by himself both ways. Apparently, he cried the entire way there and also bit the bus driver when she attempted to buckle him in.
He also had a really hard time with transitions and his teacher has asked that we help make a better picture schedule for him as the one that they have simply isn't working.
When we asked him why he had a bad day, he sai, "On da bus.... lowyang."
We have asked the following questions and are no closer to the answer:
-Is there a person name Logan? NO
- Was someone laughing? NO (laughing is disturbing to him at times)
- Did someone touch you? No
- Did you sit with someone? No
- Was the bus driver nice? Yes...sad...lowyang
We have no idea what he is taking about. We both are somewhat frazzled as we can't figure out what the hell that word means and why it is so scary for him.
He also had a really hard time with transitions and his teacher has asked that we help make a better picture schedule for him as the one that they have simply isn't working.
When we asked him why he had a bad day, he sai, "On da bus.... lowyang."
We have asked the following questions and are no closer to the answer:
-Is there a person name Logan? NO
- Was someone laughing? NO (laughing is disturbing to him at times)
- Did someone touch you? No
- Did you sit with someone? No
- Was the bus driver nice? Yes...sad...lowyang
We have no idea what he is taking about. We both are somewhat frazzled as we can't figure out what the hell that word means and why it is so scary for him.
Thursday, September 17, 2009
First Day of School Part 2
The actual school part went well yesterday. From Little Bug's perspective, it was awesome because he was able to play Thomas and sign Wheels on the bus. He even ate some of his lunch.
From our perspective, it has worked out better than we had ever dreamed. Little Bug doesn't have an aide required by his IEP, but it has ended up that one aide in class is dedicated to him. The aide stays with him through out the activities to encourage social interaction, sharing, and to be an anchor for transitions. This is all because of his teacher. She has learned about ASD and feels that him having an aide is the best approach.
His teacher is AMAZING! We took the time to write a letter with areas that he struggles with and suggestions as well as commonly used signs. She not only read it, but responded with thanks as well as how she implemented our suggestions.
She has gone above and beyond. She and the SLP have created a picture schedule for him. The SLP is hoping that he will not need it based on language growth by the end of the year.
Last night, there was an open house- which Hama and Bumpa came up for. They loved his classroom and his teacher. We loved his teacher. She spent half an hour with us, asking questions, taking feedback, and actually writing things down. She was open minded and asked for help. Being that Little Bug is the first Autistic child she has taught, she was very eager to learn.
I was amazed that she listened to us. I am used to having our concerns down played and minimized. Suggestions ignored because we don't have a degree. Not her. She asked for help in making a support for "How is your engine running?" to help him stay on track with the speed of the class. We taught her how to pick him up when he is aggressive and she took our suggestions on how to create a better quiet spot. Hers was in the middle of the room under a play structure and bright lights.
Needless to say, we are happy and have lots of homework. I am glad to do it. She is willing to learn and try and it is our job to set her up for success and support her. For her, we are creating transition cards, "How's your engine running?", and providing feedback on how we are implementing goals at home. For the SLP, we are providing the sight words that Little Bug recognizes, what goals he has with his SLP, and how we are working on it at home.
There were some bitter sweet moments last night. When we walked into the school, a little guy from his class began yelling, "That's my MAN! I like him! We play trains!" Little Bug didn't even notice or acknowledge it. It took 6 prompts to get him to look up from the patterned tile floor to say hi. A little girl came over and introduced herself to me. She looked at me and said, "I play trains with him. I like him." Again, no acknowledgement from Little Bug. On the bright side, the kids didn't seem phased by his lack of response. They just accepted him for who he is.
I don't know how to say this in a PC way, but it is different seeing him with typical peers. At the last center, most of the kids had Autism and they all ignored each other except for rare spontaneous interaction. It is such a drastic change to see him with NT kids. I never realized completely how delayed his social skills are. How delayed his speech is compared to other kids. Don't get me wrong, he can chatter a mile a minute, but not in the same functional conversational way that these kids do.
From our perspective, it has worked out better than we had ever dreamed. Little Bug doesn't have an aide required by his IEP, but it has ended up that one aide in class is dedicated to him. The aide stays with him through out the activities to encourage social interaction, sharing, and to be an anchor for transitions. This is all because of his teacher. She has learned about ASD and feels that him having an aide is the best approach.
His teacher is AMAZING! We took the time to write a letter with areas that he struggles with and suggestions as well as commonly used signs. She not only read it, but responded with thanks as well as how she implemented our suggestions.
She has gone above and beyond. She and the SLP have created a picture schedule for him. The SLP is hoping that he will not need it based on language growth by the end of the year.
Last night, there was an open house- which Hama and Bumpa came up for. They loved his classroom and his teacher. We loved his teacher. She spent half an hour with us, asking questions, taking feedback, and actually writing things down. She was open minded and asked for help. Being that Little Bug is the first Autistic child she has taught, she was very eager to learn.
I was amazed that she listened to us. I am used to having our concerns down played and minimized. Suggestions ignored because we don't have a degree. Not her. She asked for help in making a support for "How is your engine running?" to help him stay on track with the speed of the class. We taught her how to pick him up when he is aggressive and she took our suggestions on how to create a better quiet spot. Hers was in the middle of the room under a play structure and bright lights.
Needless to say, we are happy and have lots of homework. I am glad to do it. She is willing to learn and try and it is our job to set her up for success and support her. For her, we are creating transition cards, "How's your engine running?", and providing feedback on how we are implementing goals at home. For the SLP, we are providing the sight words that Little Bug recognizes, what goals he has with his SLP, and how we are working on it at home.
There were some bitter sweet moments last night. When we walked into the school, a little guy from his class began yelling, "That's my MAN! I like him! We play trains!" Little Bug didn't even notice or acknowledge it. It took 6 prompts to get him to look up from the patterned tile floor to say hi. A little girl came over and introduced herself to me. She looked at me and said, "I play trains with him. I like him." Again, no acknowledgement from Little Bug. On the bright side, the kids didn't seem phased by his lack of response. They just accepted him for who he is.
I don't know how to say this in a PC way, but it is different seeing him with typical peers. At the last center, most of the kids had Autism and they all ignored each other except for rare spontaneous interaction. It is such a drastic change to see him with NT kids. I never realized completely how delayed his social skills are. How delayed his speech is compared to other kids. Don't get me wrong, he can chatter a mile a minute, but not in the same functional conversational way that these kids do.
Wednesday, September 16, 2009
First Day of School!
Well, it's official- Little Bug is in school. This morning was a bit rocky. In general, he was pretty high strung and resistant to any diviation from routine. He cried about having chocolate milk and not white milk. The wrong kind of cereal sent him into a 15 minute fit. The shower this morning sounded like he was being murdered.
We thought that things were getting better because by 8:30, he was playing with his toys. Unfortunately, not. While he voluntarily put on his shoes and harness, waiting for the bus was another story. There was lots of stimming and ear covering; verbalizing and trying to fling himself on the ground.
When the bus showed up, she had us hand him through the door so she could strap him in. Big mistake. His screams could be heard over the bus and soon she was asking for help. He was hitting and pinching his face while flailing and making it near impossible to finish strapping him in. It took the two of us to get him in. The driver asked me to ride with him this morning to make for a better transition.
He seemed to be doing beter once we got to school and he recognized the buildings and the aides. Hopefully, the rest of the day goes better.
Tuesday, September 1, 2009
School Woes
Little Bug has reached a new low when it comes to school. Any mention of school, school bus, new friends, results in NO. We saw a school bus yesterday. He looked at me with tear filled eyes and said. “No bus, daddy. Pease no bus?”
Hopefully this is normal, although he seems to be taking it to an extreme. We took him shopping for shoes yesterday and I stupidly mentioned school. That tanked the whole damn thing. He screamed and cried and stimmed and lashed out at the boxes and his parents.
This weekend, to try to ease the transition, we made a paper chain to count down until school. We thought he might like to pick one of his favorite colors- red or blue- for the first day of school. When I asked him what color should be the first day of school, he looked at me and said, “BLACK”. He *hates* the color black and yet this was the color for the first day of school.
When watching Thomas the Tank Engine, we saw an episode were Thomas had to help the children get to school. He immediately covered his ears, turned off the TV and then put away Thomas.
We have tried taking him to the school in order to make him excited about it as well as talking about other people who go to school. No dice. He isn’t interested in school.
He has also begun to regress and his speech therapist is concerned. He is unable to answer yes or no questions correctly 80% of the time. He has begun to show much more echolalia in his speech.
I need to email the school and tell them that they have a storm brewing. They need to know that he is petrified. They should have some sort of supports on the bus and to get him off of the bus. We also should get a recap of his first day.
Hopefully this is normal, although he seems to be taking it to an extreme. We took him shopping for shoes yesterday and I stupidly mentioned school. That tanked the whole damn thing. He screamed and cried and stimmed and lashed out at the boxes and his parents.
This weekend, to try to ease the transition, we made a paper chain to count down until school. We thought he might like to pick one of his favorite colors- red or blue- for the first day of school. When I asked him what color should be the first day of school, he looked at me and said, “BLACK”. He *hates* the color black and yet this was the color for the first day of school.
When watching Thomas the Tank Engine, we saw an episode were Thomas had to help the children get to school. He immediately covered his ears, turned off the TV and then put away Thomas.
We have tried taking him to the school in order to make him excited about it as well as talking about other people who go to school. No dice. He isn’t interested in school.
He has also begun to regress and his speech therapist is concerned. He is unable to answer yes or no questions correctly 80% of the time. He has begun to show much more echolalia in his speech.
I need to email the school and tell them that they have a storm brewing. They need to know that he is petrified. They should have some sort of supports on the bus and to get him off of the bus. We also should get a recap of his first day.
Tuesday, August 25, 2009
Sleep issues
Not sure if I shared, but when we last saw the wizard (as we like to call Little Bug's neurologist), he diagnosed Little Bug with Sleep Distrubances NOS (Not Otherwise Specified). Basically, this documents that Little Bug still doesn't sleep through the night. That he still has an incredibly difficult time falling asleep.
We have a new wrinkle- sleep walking. He has begun to do things at night that he would *never* normally do. I know, you say, you can't know that. I know that he would normally not trash the house. Last week, I woke up to get ready for work and at first thought we had been burglarized. There was stuff everywhere. Every cupboard in the kitchen was open. Any stitch of fabric in the kitchen and bathroom had been tossed onto the floor. All the coasters and mug rugs the Hama makes were tossed all over the living room.
Last night, Nick and I found out that he has been sneaking food. I had been finding wrappers during the last week and thought that Nick was having a late night snack and just didn't see them. Nope, they were Little Bug. Which explains why when he wakes up at times his face is sticky.
I have found dried beans and spaghetti noodles on the floor. Again, I thought Nick was looking for a snack and didn't see that he had made a mess. But, no it wasn't Nick.
At this point, for his safety, we are going to have to consider all options. He already sleeps with us- heaven help us if he sleeps in his own bed. I worry that he could hurt himself or choke with his midnight eating. As he gets bigger, I worry that he will be able to get out of the house easier- we already have special locks installed and are now figuring out how to adjust the door alarm we bought.
I just want him to be able to sleep. To not wake up looking like he didn't sleep at all. He often carries steamer trunks under his eyes.
We have a new wrinkle- sleep walking. He has begun to do things at night that he would *never* normally do. I know, you say, you can't know that. I know that he would normally not trash the house. Last week, I woke up to get ready for work and at first thought we had been burglarized. There was stuff everywhere. Every cupboard in the kitchen was open. Any stitch of fabric in the kitchen and bathroom had been tossed onto the floor. All the coasters and mug rugs the Hama makes were tossed all over the living room.
Last night, Nick and I found out that he has been sneaking food. I had been finding wrappers during the last week and thought that Nick was having a late night snack and just didn't see them. Nope, they were Little Bug. Which explains why when he wakes up at times his face is sticky.
I have found dried beans and spaghetti noodles on the floor. Again, I thought Nick was looking for a snack and didn't see that he had made a mess. But, no it wasn't Nick.
At this point, for his safety, we are going to have to consider all options. He already sleeps with us- heaven help us if he sleeps in his own bed. I worry that he could hurt himself or choke with his midnight eating. As he gets bigger, I worry that he will be able to get out of the house easier- we already have special locks installed and are now figuring out how to adjust the door alarm we bought.
I just want him to be able to sleep. To not wake up looking like he didn't sleep at all. He often carries steamer trunks under his eyes.
Wednesday, August 19, 2009
Ri Da BUS!
School starts in less than a month. While we aren’t sure how much Little Bug understands about this concept, we do know that it makes him incredibly anxious. His flapping has increased one percent; if his arms were actually wings, we would never see him again. He whirls like a dervish- a tiny, sharky, vocalizing dervish. He has also begun to get aggressive again- verbally and physically.
His anxiety feeds mine. I can see him struggle and yet can’t cross the gap to understand and help process the anxiety. I have begun to make a list of things I need to do in my mind- write a letter to the teacher, get chewie rope, get fidgets for the bus, stock up on diapers for school, get a hold of the transportation department, make school pictures for his picture schedule, start How is your engine running, make a weighted vest, make a lycra tube, etc.
Even though the school is only 6 blocks from our house, Little Bug will be riding the bus. Because of his mad Houdini skills- he can unbuckle his five point harness and get wedged between the seats while the car is going 60 mph on the freeway, he has been sentenced to wear a reverse safety harness. I want it now so that we can get him used to it. Unfortunately, we haven’t had any luck in getting a hold of someone.
It is amazing how the stars line up sometimes and suddenly- kismet. This morning, as I was reading a book about video modeling for children with ASD (more on that later), a woman sat down on the bus and introduced herself. It turns out that she is the director of special education transportation for the Seattle School District.
We started talking about Little Bug, IEPs, and transportation and she offered to help me. She gave me a different phone number from what was listed for the SPEC ED director in Tacoma. Additionally, she is bringing Little Bug a squishy bus as a fidget- apparently on the first day of school in Seattle, all the little guys get one to make the bus ride better.
Its times like these that remind me that my family isn’t alone. That we aren’t the first people to do this and won’t be the last. That by being open, we can make connections and get the help we need. It reminds me to repay the kindness and be that resource for someone else.
His anxiety feeds mine. I can see him struggle and yet can’t cross the gap to understand and help process the anxiety. I have begun to make a list of things I need to do in my mind- write a letter to the teacher, get chewie rope, get fidgets for the bus, stock up on diapers for school, get a hold of the transportation department, make school pictures for his picture schedule, start How is your engine running, make a weighted vest, make a lycra tube, etc.
Even though the school is only 6 blocks from our house, Little Bug will be riding the bus. Because of his mad Houdini skills- he can unbuckle his five point harness and get wedged between the seats while the car is going 60 mph on the freeway, he has been sentenced to wear a reverse safety harness. I want it now so that we can get him used to it. Unfortunately, we haven’t had any luck in getting a hold of someone.
It is amazing how the stars line up sometimes and suddenly- kismet. This morning, as I was reading a book about video modeling for children with ASD (more on that later), a woman sat down on the bus and introduced herself. It turns out that she is the director of special education transportation for the Seattle School District.
We started talking about Little Bug, IEPs, and transportation and she offered to help me. She gave me a different phone number from what was listed for the SPEC ED director in Tacoma. Additionally, she is bringing Little Bug a squishy bus as a fidget- apparently on the first day of school in Seattle, all the little guys get one to make the bus ride better.
Its times like these that remind me that my family isn’t alone. That we aren’t the first people to do this and won’t be the last. That by being open, we can make connections and get the help we need. It reminds me to repay the kindness and be that resource for someone else.
An Interesting Article
This article is written by a dad who's daughter has PDD-NOS. He describes the experience of taking her to the movies for the first time as well as the experience of finding his daughter in the film Ponyo.
http://www.npr.org/templates/story/story.php?storyId=111960817&sc=fb&cc=fp
http://www.npr.org/templates/story/story.php?storyId=111960817&sc=fb&cc=fp
Thursday, August 13, 2009
Your answers only lead to more questions
I have been trying to get Little Bug to tell me what he did during the day. When I get off the bus, I sit in the back seat and ask him about his day. I have found that he cannot tell us what he did in a day. Our conversations go like this:
B: Hey Bug! Did you have a good day?
L: Uhmm, no.
B: What happened today?
L: Rode Fains (trains)
B looks into rear view mirror to see Nick shake his head no, indicating that they didn’t ride trains. : Did you play outside?
L: No, inside
B looks into the mirror again to see Nick shaking his head yes, in fact they did play outside.
This goes on every day. This causes an insane amount of anxiety. We are going to send him off to school and yet not have any way to hear from him what happened. While I want to have faith and hope that the school will do the right thing by him, it breaks my heart that my son will not be able to tell me if something isn’t going well.
Little Bug had his first melt down about school this week. We can tell that he has been upset about something- which we assume is that lack of Birth To Three and the structure that they provide- as he has been flappy, jumpy, extremely quick to emotion and hurting himself more.
He was playing with a school bus on his road rug and Nick and I decided that we could use that time to talk to him about riding the school bus. We told him that he was going to get to ride a bus like that. His face was overtaken with a huge smile.
He looked at us and pointed to the bus, “Daddy Nick and Bake too!”
We told him that we weren’t going to be able to ride the bus, but he would ride it with his friends. He became panicked and threw himself on the ground, crying and hitting his head. He began to yell, “No BUS! NO BUS!” and then bit himself.
I wish we could make this easier for him. Nick and I have decided that we are going to have him ride the bus- even though the school is only 6 blocks away from our house. If he struggles with it or is truly unhappy, we can always withdraw him from it, however he needs to give it a shot.
B: Hey Bug! Did you have a good day?
L: Uhmm, no.
B: What happened today?
L: Rode Fains (trains)
B looks into rear view mirror to see Nick shake his head no, indicating that they didn’t ride trains. : Did you play outside?
L: No, inside
B looks into the mirror again to see Nick shaking his head yes, in fact they did play outside.
This goes on every day. This causes an insane amount of anxiety. We are going to send him off to school and yet not have any way to hear from him what happened. While I want to have faith and hope that the school will do the right thing by him, it breaks my heart that my son will not be able to tell me if something isn’t going well.
Little Bug had his first melt down about school this week. We can tell that he has been upset about something- which we assume is that lack of Birth To Three and the structure that they provide- as he has been flappy, jumpy, extremely quick to emotion and hurting himself more.
He was playing with a school bus on his road rug and Nick and I decided that we could use that time to talk to him about riding the school bus. We told him that he was going to get to ride a bus like that. His face was overtaken with a huge smile.
He looked at us and pointed to the bus, “Daddy Nick and Bake too!”
We told him that we weren’t going to be able to ride the bus, but he would ride it with his friends. He became panicked and threw himself on the ground, crying and hitting his head. He began to yell, “No BUS! NO BUS!” and then bit himself.
I wish we could make this easier for him. Nick and I have decided that we are going to have him ride the bus- even though the school is only 6 blocks away from our house. If he struggles with it or is truly unhappy, we can always withdraw him from it, however he needs to give it a shot.
Monday, August 10, 2009
No MUCUSINGING
Going in public is becoming difficult for Little Bug again. His auditory sensitivity has greatly increased recently. Yesterday, we went to Goodwill- which he normally loves. Once inside, he immediately covered his ears and began to yell, “No MUCUSINGING!!!” (That’s his word for music. Think MUCUS and SINGING mixed together. Fitting when you think about how offense it is to him.)
We were able to calm and soothe him and get him involved in other things- mainly rummaging through the toy bins while only every so often yelling about the music. Our house is a bit muted recently- no music, not as much sporadic laughter, because when he isn’t in the room, causes him to cry real tears, throw himself down and cover his ear, and the TV at an acceptable level per Little Bug.
While I know some people would say that we coddle him too much, I don’t think so. I certainly don’t think this is behavioral as he does it in public and private and to a variety of noises. Given that, I have a hard time imagining myself telling him that he just has to get over it. To me, that seems like telling someone who has a broken leg to stop being a baby and walk already. While it may not be a common or easily understood difficulty, we have to remember that it is very real for him.
I have even tried home therapy- my idea of it anyway. In this, I have Little Bug pick out music and then we put it in together talking about how fun it will be. I turn on the TV and hit PLAY. He immediately covers his ears and starts crying, “Daddy Blake! Pease, no mucusinging! Pease, Daddy Bake?”
I have tried to let him control the volume- all with the above results. We have tried telling him to say hi to the airplanes, but to no real success. He still runs to the bushes and covers his head and ears when he can’t. A car backfired on Thursday night and he literally climbed up me and then assumed the covering the ears position. Fire trucks, motorcycles, loud cars, yelling, clapping, chopping sounds- like at a restaurant, etc. have all become too much for him to bear.
Before we go out, we now have to discuss the noise levels. A trip to anywhere has to debated with regards music, potential for clapping, etc. We weigh Target versus other stores- other stores lose because they have overhead music. Target at times losses because they have those walkie talkies from hell that blare every three and half seconds (they are offensive to Little Bug and were to me when I had to wear them.)
Going out to eat means we have to decide whether we want to eat super early or late. We have to weigh what day of the week it is and whether it is a holiday as that means more noise. When we forget, like on Super Bowl Sunday and go out to eat, the consequences aren’t pretty. $15.00 meals are left uneaten and boxed to go home while I run outside with Little Bug, who is screaming, crying, and covering his ears.
We took him to Pike Place Market thinking that he would love to see the fish thrown. (If you haven't been there, look it up on youtube, but the premise is that you order your sea food, and the fishermen yell and toss the fish that are in the order.) That was a disaster. Little Bug wouldn't stop screaming, strangers wanted to know if we needed help, and Nick and I ended up frazzled and sniping at each other.
For example, my company picnic is coming up, but due to the three different kinds of sports being played- all with laughing, yelling clapping by the happy crowd, as well as several hundred people and children, an extreme motorcycle show, and several bands we aren’t going.
The wait list for Occupational Therapy is 3 to 6 months. I am also trying to research Therapeutic Listening; to see if that will help him. The rub will be if it is or isn’t covered and how much it costs.
We were able to calm and soothe him and get him involved in other things- mainly rummaging through the toy bins while only every so often yelling about the music. Our house is a bit muted recently- no music, not as much sporadic laughter, because when he isn’t in the room, causes him to cry real tears, throw himself down and cover his ear, and the TV at an acceptable level per Little Bug.
While I know some people would say that we coddle him too much, I don’t think so. I certainly don’t think this is behavioral as he does it in public and private and to a variety of noises. Given that, I have a hard time imagining myself telling him that he just has to get over it. To me, that seems like telling someone who has a broken leg to stop being a baby and walk already. While it may not be a common or easily understood difficulty, we have to remember that it is very real for him.
I have even tried home therapy- my idea of it anyway. In this, I have Little Bug pick out music and then we put it in together talking about how fun it will be. I turn on the TV and hit PLAY. He immediately covers his ears and starts crying, “Daddy Blake! Pease, no mucusinging! Pease, Daddy Bake?”
I have tried to let him control the volume- all with the above results. We have tried telling him to say hi to the airplanes, but to no real success. He still runs to the bushes and covers his head and ears when he can’t. A car backfired on Thursday night and he literally climbed up me and then assumed the covering the ears position. Fire trucks, motorcycles, loud cars, yelling, clapping, chopping sounds- like at a restaurant, etc. have all become too much for him to bear.
Before we go out, we now have to discuss the noise levels. A trip to anywhere has to debated with regards music, potential for clapping, etc. We weigh Target versus other stores- other stores lose because they have overhead music. Target at times losses because they have those walkie talkies from hell that blare every three and half seconds (they are offensive to Little Bug and were to me when I had to wear them.)
Going out to eat means we have to decide whether we want to eat super early or late. We have to weigh what day of the week it is and whether it is a holiday as that means more noise. When we forget, like on Super Bowl Sunday and go out to eat, the consequences aren’t pretty. $15.00 meals are left uneaten and boxed to go home while I run outside with Little Bug, who is screaming, crying, and covering his ears.
We took him to Pike Place Market thinking that he would love to see the fish thrown. (If you haven't been there, look it up on youtube, but the premise is that you order your sea food, and the fishermen yell and toss the fish that are in the order.) That was a disaster. Little Bug wouldn't stop screaming, strangers wanted to know if we needed help, and Nick and I ended up frazzled and sniping at each other.
For example, my company picnic is coming up, but due to the three different kinds of sports being played- all with laughing, yelling clapping by the happy crowd, as well as several hundred people and children, an extreme motorcycle show, and several bands we aren’t going.
The wait list for Occupational Therapy is 3 to 6 months. I am also trying to research Therapeutic Listening; to see if that will help him. The rub will be if it is or isn’t covered and how much it costs.
Friday, August 7, 2009
An Interesting Letter
Let me tell you, our adventures with our insurance company our never boring. They are full of interesting correspondence- back and forths about Speech Therapy, Face lifts, and OT and whether they are *really* needed.
Yesterday took the cake. In June, my neck was broken by Little Bug. I was taking a bath and he wanted to get in. So, with no intent of harm, he jumped over the side of the bathtub and landed on my upper chest, driving my neck into the edge of the bathtub. The force of this jump caused a small fracture in one of my vertebrae.
I went to the urgent care and received x rays and some pain medication. I went over the cause of the injury several times. It was clearly documented that it was a harmless accident and not a big deal.
Imagine my surprise yesterday when I received a letter from my insurance company stating that they had reviewed my injury and had asked a law group to review my claim to see if “another party involved in the accident should be held responsible for your accident and help pay for your medical costs.” They provided several forms that needed to be filled out in order to avoid “complication with your claims”.
I appreciate in this situation; it was probably a miscommunication on the part of the doctors and insurance company- in that they didn’t communicate as the record of the claim filed reflects that this was an accident in my own home while taking a bath.
I thought of the families with older autistic children who had injured someone- people who are considered adults. There have been several articles surrounding the subject of adults with Autism who have hurt someone. Would an adult child with Autism have been held accountable? When we first meandered onto this path called Autism, I would have thought no, of course not! After reading about people being arrested at the age of seven at school for biting a teacher, held in federal prison for killing their parent, and more examples than I can provide, I know these things are no longer let go.
I have to admit that I am scared for when Little Bug goes to school as he self injures and injures others when he isn’t understood or lacks a way to communicate his needs. The little girl who was arrested- over a tussle about a sweatshirt which ended in her kicking and biting a teacher- was in Washington.
Often times, the reaction to behavior can be extreme- like arresting a 7 year old or seeing if a 3 year old can be legally held responsible for an accident. Another example is found in the video link below- be warned, it is extreme.
http://www.cnn.com/video/#/video/us/2009/07/10/boudreau.behind.school.walls.cnn?iref=videosearch
Yesterday took the cake. In June, my neck was broken by Little Bug. I was taking a bath and he wanted to get in. So, with no intent of harm, he jumped over the side of the bathtub and landed on my upper chest, driving my neck into the edge of the bathtub. The force of this jump caused a small fracture in one of my vertebrae.
I went to the urgent care and received x rays and some pain medication. I went over the cause of the injury several times. It was clearly documented that it was a harmless accident and not a big deal.
Imagine my surprise yesterday when I received a letter from my insurance company stating that they had reviewed my injury and had asked a law group to review my claim to see if “another party involved in the accident should be held responsible for your accident and help pay for your medical costs.” They provided several forms that needed to be filled out in order to avoid “complication with your claims”.
I appreciate in this situation; it was probably a miscommunication on the part of the doctors and insurance company- in that they didn’t communicate as the record of the claim filed reflects that this was an accident in my own home while taking a bath.
I thought of the families with older autistic children who had injured someone- people who are considered adults. There have been several articles surrounding the subject of adults with Autism who have hurt someone. Would an adult child with Autism have been held accountable? When we first meandered onto this path called Autism, I would have thought no, of course not! After reading about people being arrested at the age of seven at school for biting a teacher, held in federal prison for killing their parent, and more examples than I can provide, I know these things are no longer let go.
I have to admit that I am scared for when Little Bug goes to school as he self injures and injures others when he isn’t understood or lacks a way to communicate his needs. The little girl who was arrested- over a tussle about a sweatshirt which ended in her kicking and biting a teacher- was in Washington.
Often times, the reaction to behavior can be extreme- like arresting a 7 year old or seeing if a 3 year old can be legally held responsible for an accident. Another example is found in the video link below- be warned, it is extreme.
http://www.cnn.com/video/#/video/us/2009/07/10/boudreau.behind.school.walls.cnn?iref=videosearch
Wednesday, August 5, 2009
On the Wait Again
We received contact from a local hospital and their therapy clinic. They are highly focused on OT and more specifically, Sensory Modulation Disorder. This Disorder isn't in the DSM so it is an undiagnosed but suspected disorder.
Unfortunately, this means another wait period of 3 to 6 months. The nice thing about this situation is that we have ample time to create better goals for Little Bug. Our last goals were focused on bathing, dressing, not biting himself or others.
This time, our goals are going to be more focused around the following:
1. Sensing HOT versus COLD.
2. Sensing and identifying pain.
3. Sensing and identifying bodily sensations- hunger, thirst, heat, etc.
You may think these goals seem basic- they are. They are also incredibly difficult for Little Bug. He will touch items that are burning hot and have no reaction. He played in ice on his birthday until his little fingers were bright red and felt frozen to everyone else. Didn't bother him. He can have a fever of 102 and up and yet act no different.
How anyone would go about meeting those goals is beyond me. What I do know is that we need to do it. Our hope is that the more he learns to modulate his system, he will be able to do the things above.
Unfortunately, this means another wait period of 3 to 6 months. The nice thing about this situation is that we have ample time to create better goals for Little Bug. Our last goals were focused on bathing, dressing, not biting himself or others.
This time, our goals are going to be more focused around the following:
1. Sensing HOT versus COLD.
2. Sensing and identifying pain.
3. Sensing and identifying bodily sensations- hunger, thirst, heat, etc.
You may think these goals seem basic- they are. They are also incredibly difficult for Little Bug. He will touch items that are burning hot and have no reaction. He played in ice on his birthday until his little fingers were bright red and felt frozen to everyone else. Didn't bother him. He can have a fever of 102 and up and yet act no different.
How anyone would go about meeting those goals is beyond me. What I do know is that we need to do it. Our hope is that the more he learns to modulate his system, he will be able to do the things above.
Friday, July 31, 2009
Yeah, I'm a lurker
I love to read the ASD blogs, but rarely comment on them. While most people are more outgoing online, I clam up (except here in my own little world).
I do have to acknowledge what I think is an amazing post:
http://www.blogher.com/worst-parenting-day-ever
I read the parent blog http://www.squidalicious.com/ often. I like this blog because it usually gives my perspective a good kick in the butt.
I do have to acknowledge what I think is an amazing post:
http://www.blogher.com/worst-parenting-day-ever
I read the parent blog http://www.squidalicious.com/ often. I like this blog because it usually gives my perspective a good kick in the butt.
103
That was this weeks high point. This has been a really rough week for everyone involved, but especially Little Bug.
See, we will in WASHINGTON. We are not equipped for this as most homes and some businesses don't have air conditioning. Ours would be one of those homes.
Little Bug didn't notice the heat. We are pretty sure based that he can't really modulate temperature. For example, on his birthday, he sat and played in a bucket of ice. While that seems normal, he played with it until his fingers barely moved. It didn't bother him. In fact, he was more upset about not being allowed to play in the ice than anything else.
What Little Bug has noticed this week is a complete change in his routine. Nick is on vacation. He isn't allowed to play outside in the afternoons- way too hot. He is being nagged, reminded, prompted, and prodded into drinking water. None of the food he normally eats is being served- too hot to cook. He isn't allowed to wear anything he wants.
For the most part, he did well until yesterday. He hit his breaking point. He is tired. He is covered in heat rash. He wants to play outside. He doesn't like the food. He is sick and tired of being yelled at for trying to climb out our windows. (Side Note- I mean that literally. We don't normally open the windows as he will push the screen out and try to get out. With it being over 100, we had to suck it up and do it. He has made several escape attempts.)
Fortunately for him, we are going to Hama and Bumpa's. There won't be yelling because with the marine fog, the low will be in the 50s and the high will be in the 70s. He will get to see two of his *favorite* people in the whole wide world and his second favorite dog.
See, we will in WASHINGTON. We are not equipped for this as most homes and some businesses don't have air conditioning. Ours would be one of those homes.
Little Bug didn't notice the heat. We are pretty sure based that he can't really modulate temperature. For example, on his birthday, he sat and played in a bucket of ice. While that seems normal, he played with it until his fingers barely moved. It didn't bother him. In fact, he was more upset about not being allowed to play in the ice than anything else.
What Little Bug has noticed this week is a complete change in his routine. Nick is on vacation. He isn't allowed to play outside in the afternoons- way too hot. He is being nagged, reminded, prompted, and prodded into drinking water. None of the food he normally eats is being served- too hot to cook. He isn't allowed to wear anything he wants.
For the most part, he did well until yesterday. He hit his breaking point. He is tired. He is covered in heat rash. He wants to play outside. He doesn't like the food. He is sick and tired of being yelled at for trying to climb out our windows. (Side Note- I mean that literally. We don't normally open the windows as he will push the screen out and try to get out. With it being over 100, we had to suck it up and do it. He has made several escape attempts.)
Fortunately for him, we are going to Hama and Bumpa's. There won't be yelling because with the marine fog, the low will be in the 50s and the high will be in the 70s. He will get to see two of his *favorite* people in the whole wide world and his second favorite dog.
Wednesday, July 29, 2009
Parents and Self Advocates
Recently in the NY Times, two perspectives were provided of a life with Autism. One was that of a parent and the other of a self advocate. These perspectives were provided in response to the following study-
http://www.sciencedaily.com/releases/2009/07/090708153233.htm
An excerpt:
“"Both groups of women are dealing with children who need high levels of care-giving. But there is something about autism that is making a difference and adding stress and psychological distress to these mothers," said Annette Estes, lead author of a new study and associate director of the UW Autism Center.
Surprisingly, the research also found no link between a child's decreased daily living skills and increased parental stress and psychological distress.
"This finding was counterintuitive," said Estes, who is also a research assistant professor of psychiatry and behavioral sciences. "If a child has more needs in getting dressed and in other daily living skills, that means the parents are working harder and seemingly would be under stress. But it is not the hard work that is stressing the mothers. Our findings really pointed to the behavior problems that can occur with autism. Children with autism had significantly higher levels of problem behaviors than children with developmental delay."
These behavior problems included such things as irritability, agitation, crying, inappropriate speech and not being able to follow rules.
For this study parental stress was defined as being the stress directly related to a person's role as a parent and parenting a child with a disability. Psychological distress is more general stress, such as that experienced by a person who is nervous about her job or life in general but may or may not be confident about her parenting.”
The parent’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/the-unvarnished-reality-of-autism/
The mother states that she despises euphemisms like “tantrum” or “crying”. She gives examples of her reality with her son.
The self advocate’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/autism-from-the-inside-looking-out/
The self advocate gives suggestions regarding behaviors and insight into the behaviors. She also describes how reading the mother’s perspective made her feel.
I have read the comments on the articles that include these posts. Often, a line is drawn in the sand and people are choosing sides. I believe that both perspectives are valid as they are the authors’ experiences. I struggle with the idea that a line has to be drawn in the sand over these posts and a side chosen. I think that these items show two very valid and real sides of the emotional coin that is ASD.
I understand when the mother states that often the reality of raising a child with ASD is varnished over to make it more palatable to the masses. I too hate when I talk about something that is hard for Little Bug and its results, only to receive a reply of “all kids have tantrums” or “all kids do X.” While I appreciate that the person saying it may be trying to either make me feel more secure in a situation I am having difficulty with or truly not understand, usually I feel isolated.
When this happens, I feel like people *don’t* understand. They don’t understand that some of the “tantrums” Little Bug has at times last a couple hours and are uncontrollable tornadoes of emotion and physical injury. To me, that isn’t a tantrum. To me, it is a crisis in which I worry about my child injuring himself or others.
I laughed when I read the words “irritability and agitation” in the study. Little Bug has an acute need for sameness. All the bottles in the shower must be placed on the same shelf every time and labels must face out. If they aren’t that way, he will refuse to get in the bathtub. While this may seem minor to you or be described as being “irritable”, it is crippling to him. He becomes incredibly “agitated” by loud noises- trucks, motorcycles, and airplanes. By agitated, I mean that he covers his head, hides under something and screams. To him, it seems to appear that there is some kind of imminent attack.
I disagree that our life is a nightmare. I believe that it has nightmarish moments- like when he tried to eat glass, tries to break out of the house because he sees something he wants outside, or when he has a fever of 102 but cannot tell me what is wrong because he doesn’t feel pain and lacks the verbal skills to understand what I am asking.
I wish that I could better identify with the self advocate. I have found myself reading more books written *by* people with ASD rather than parents. I want to know what drives the behaviors and feelings. I want to help.
I love my son deeply and fiercely. I can’t change the fact that he has Autism. I am not ashamed of him. I also am not ashamed of my feelings. I fully intend to have Little Bug read this blog. I know that he may be hurt by some things and enjoy others. I know that regardless, he will know that it was written with love and concern. Most of all, I know that I will listen to his experiences and feelings- even if I don’t like them or feel hurt by them. I will because they are real and valid.
http://www.sciencedaily.com/releases/2009/07/090708153233.htm
An excerpt:
“"Both groups of women are dealing with children who need high levels of care-giving. But there is something about autism that is making a difference and adding stress and psychological distress to these mothers," said Annette Estes, lead author of a new study and associate director of the UW Autism Center.
Surprisingly, the research also found no link between a child's decreased daily living skills and increased parental stress and psychological distress.
"This finding was counterintuitive," said Estes, who is also a research assistant professor of psychiatry and behavioral sciences. "If a child has more needs in getting dressed and in other daily living skills, that means the parents are working harder and seemingly would be under stress. But it is not the hard work that is stressing the mothers. Our findings really pointed to the behavior problems that can occur with autism. Children with autism had significantly higher levels of problem behaviors than children with developmental delay."
These behavior problems included such things as irritability, agitation, crying, inappropriate speech and not being able to follow rules.
For this study parental stress was defined as being the stress directly related to a person's role as a parent and parenting a child with a disability. Psychological distress is more general stress, such as that experienced by a person who is nervous about her job or life in general but may or may not be confident about her parenting.”
The parent’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/the-unvarnished-reality-of-autism/
The mother states that she despises euphemisms like “tantrum” or “crying”. She gives examples of her reality with her son.
The self advocate’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/autism-from-the-inside-looking-out/
The self advocate gives suggestions regarding behaviors and insight into the behaviors. She also describes how reading the mother’s perspective made her feel.
I have read the comments on the articles that include these posts. Often, a line is drawn in the sand and people are choosing sides. I believe that both perspectives are valid as they are the authors’ experiences. I struggle with the idea that a line has to be drawn in the sand over these posts and a side chosen. I think that these items show two very valid and real sides of the emotional coin that is ASD.
I understand when the mother states that often the reality of raising a child with ASD is varnished over to make it more palatable to the masses. I too hate when I talk about something that is hard for Little Bug and its results, only to receive a reply of “all kids have tantrums” or “all kids do X.” While I appreciate that the person saying it may be trying to either make me feel more secure in a situation I am having difficulty with or truly not understand, usually I feel isolated.
When this happens, I feel like people *don’t* understand. They don’t understand that some of the “tantrums” Little Bug has at times last a couple hours and are uncontrollable tornadoes of emotion and physical injury. To me, that isn’t a tantrum. To me, it is a crisis in which I worry about my child injuring himself or others.
I laughed when I read the words “irritability and agitation” in the study. Little Bug has an acute need for sameness. All the bottles in the shower must be placed on the same shelf every time and labels must face out. If they aren’t that way, he will refuse to get in the bathtub. While this may seem minor to you or be described as being “irritable”, it is crippling to him. He becomes incredibly “agitated” by loud noises- trucks, motorcycles, and airplanes. By agitated, I mean that he covers his head, hides under something and screams. To him, it seems to appear that there is some kind of imminent attack.
I disagree that our life is a nightmare. I believe that it has nightmarish moments- like when he tried to eat glass, tries to break out of the house because he sees something he wants outside, or when he has a fever of 102 but cannot tell me what is wrong because he doesn’t feel pain and lacks the verbal skills to understand what I am asking.
I wish that I could better identify with the self advocate. I have found myself reading more books written *by* people with ASD rather than parents. I want to know what drives the behaviors and feelings. I want to help.
I love my son deeply and fiercely. I can’t change the fact that he has Autism. I am not ashamed of him. I also am not ashamed of my feelings. I fully intend to have Little Bug read this blog. I know that he may be hurt by some things and enjoy others. I know that regardless, he will know that it was written with love and concern. Most of all, I know that I will listen to his experiences and feelings- even if I don’t like them or feel hurt by them. I will because they are real and valid.
Tuesday, July 28, 2009
Birthday!!!!
A sharky day. A day filled with new experiences. A day to celebrate the wonderful little boy we have.
Monday, July 27, 2009
Another article regarding Gastrointestinal diseases and ASD
http://news.yahoo.com/s/hsn/20090727/hl_hsn/withautismdietrestrictionsmaydomoreharmthangood
MONDAY, July 27 (HealthDay News) -- Children with autism do not have a higher incidence of gastrointestinal problems than other children, a new study has found.
However, autistic children do have a higher rate of constipation and eating issues, such as eating the same foods over and over, according to the study. But any number of factors, including medication, could cause these issues, the researchers said.
The findings appear in the August issue of Pediatrics.
Dr. Patricia Manning-Courtney, medical director of the Kelly O'Leary Center for Autism Spectrum Disorders at Cincinnati Children's Hospital Medical Center, said that the study is an important one because it was the first to scientifically compare the incidence of gastrointestinal (GI) problems in an autistic population with incidence in children who are developing normally.
Even so, it's unlikely to quell a controversy that has been raging for more than a decade.
"A couple of highly publicized cases of autism and loose stools in the late 1990s led to an impression that children with autism had a higher rate of GI dysfunction," she said. "It wasn't well characterized, but that got the story onto the national scene."
This, in turn, led to theories that diets free of gluten and the milk protein casein might help the problems, along with treatment with the hormone secretin. Some even proposed that problems with the gut might be the cause of autistic symptoms, giving the matter added urgency.
But the evidence in favor of these hypotheses was "fuzzy," Manning-Courtney said.
For the new study, researchers followed 124 children with autism and 248 children without autism until they turned 18.
Gastrointestinal diagnoses were classified into five groups: constipation; diarrhea; abdominal bloating, discomfort or irritability; gastroesophageal reflux or vomiting; and feeding issues or selectivity (people with autism often stick with the same food choices and have other "ritualistic tendencies" in eating).
The frequency of GI symptoms was about 77 percent in the autism group and 72 percent among the others, not considered a statistically significant difference.
However, almost 34 percent of the autistic children, compared with nearly 18 percent of the others, had constipation. Feeding issues were present in about 24 percent of the autistic children and 16 percent of those who weren't autistic, the study authors found.
Those differences could stem from what the researchers called neurobehavioral issues connected with autism, such as the ritualistic practices, they said.
"Many patients with autism insist on eating the same thing and might not consume enough fiber," said the study's lead author, Dr. Samar H. Ibrahim, a fellow in gastroenterology and instructor in pediatrics at the Mayo Clinic. "We think this may be contributing to the constipation."
Medications that autistic children take can also interfere with appetite and eating.
"In our study, around 50 percent of children were on stimulant medications, and those might affect appetite and might have something to do with issues with food," Ibrahim said.
Keith A. Young, vice chairman for research in the psychiatry and behavioral science department at Texas A&M Health Science Center College of Medicine, said he thought "the really interesting thing they found was that there wasn't any indication of celiac disease."
In the group studied, the researchers found just one case. A possible link between celiac disease and autism was proposed as far back as 1961.
"The only difference [between the two groups] was the constipation, which they kind of dismiss," Young said. "And I tend to agree with their conclusion that constipation might be related to the dietary habits of autistic kids."
The constipation and feeding difficulties identified in the study, though, are not the symptoms that people have been buzzing about, Manning-Courtney pointed out. It's mostly been about diarrhea and loose stools.
But the study was a small one and did not rely on rigorous, comprehensive diagnoses of autism for the participants, so it may just stir the pot for people on both sides of the debate.
The researchers, however, are urging parents away from restrictive diets.
"Patients with autism should be investigated the same way as normal patients when they have GI symptoms," Ibrahim said. "And doctors should do a thorough investigation before labeling them with any GI disorder because the overall incidence of any GI disorder did not differ from that of the overall population."
Manning-Courtney concurred. "For me, this study lends support to the recommendation I make to a lot of families that there is no evidence to support restricted diets," she said. "They're dangerous and risky. You have to think long and hard before you, as a parent, make that choice."
MONDAY, July 27 (HealthDay News) -- Children with autism do not have a higher incidence of gastrointestinal problems than other children, a new study has found.
However, autistic children do have a higher rate of constipation and eating issues, such as eating the same foods over and over, according to the study. But any number of factors, including medication, could cause these issues, the researchers said.
The findings appear in the August issue of Pediatrics.
Dr. Patricia Manning-Courtney, medical director of the Kelly O'Leary Center for Autism Spectrum Disorders at Cincinnati Children's Hospital Medical Center, said that the study is an important one because it was the first to scientifically compare the incidence of gastrointestinal (GI) problems in an autistic population with incidence in children who are developing normally.
Even so, it's unlikely to quell a controversy that has been raging for more than a decade.
"A couple of highly publicized cases of autism and loose stools in the late 1990s led to an impression that children with autism had a higher rate of GI dysfunction," she said. "It wasn't well characterized, but that got the story onto the national scene."
This, in turn, led to theories that diets free of gluten and the milk protein casein might help the problems, along with treatment with the hormone secretin. Some even proposed that problems with the gut might be the cause of autistic symptoms, giving the matter added urgency.
But the evidence in favor of these hypotheses was "fuzzy," Manning-Courtney said.
For the new study, researchers followed 124 children with autism and 248 children without autism until they turned 18.
Gastrointestinal diagnoses were classified into five groups: constipation; diarrhea; abdominal bloating, discomfort or irritability; gastroesophageal reflux or vomiting; and feeding issues or selectivity (people with autism often stick with the same food choices and have other "ritualistic tendencies" in eating).
The frequency of GI symptoms was about 77 percent in the autism group and 72 percent among the others, not considered a statistically significant difference.
However, almost 34 percent of the autistic children, compared with nearly 18 percent of the others, had constipation. Feeding issues were present in about 24 percent of the autistic children and 16 percent of those who weren't autistic, the study authors found.
Those differences could stem from what the researchers called neurobehavioral issues connected with autism, such as the ritualistic practices, they said.
"Many patients with autism insist on eating the same thing and might not consume enough fiber," said the study's lead author, Dr. Samar H. Ibrahim, a fellow in gastroenterology and instructor in pediatrics at the Mayo Clinic. "We think this may be contributing to the constipation."
Medications that autistic children take can also interfere with appetite and eating.
"In our study, around 50 percent of children were on stimulant medications, and those might affect appetite and might have something to do with issues with food," Ibrahim said.
Keith A. Young, vice chairman for research in the psychiatry and behavioral science department at Texas A&M Health Science Center College of Medicine, said he thought "the really interesting thing they found was that there wasn't any indication of celiac disease."
In the group studied, the researchers found just one case. A possible link between celiac disease and autism was proposed as far back as 1961.
"The only difference [between the two groups] was the constipation, which they kind of dismiss," Young said. "And I tend to agree with their conclusion that constipation might be related to the dietary habits of autistic kids."
The constipation and feeding difficulties identified in the study, though, are not the symptoms that people have been buzzing about, Manning-Courtney pointed out. It's mostly been about diarrhea and loose stools.
But the study was a small one and did not rely on rigorous, comprehensive diagnoses of autism for the participants, so it may just stir the pot for people on both sides of the debate.
The researchers, however, are urging parents away from restrictive diets.
"Patients with autism should be investigated the same way as normal patients when they have GI symptoms," Ibrahim said. "And doctors should do a thorough investigation before labeling them with any GI disorder because the overall incidence of any GI disorder did not differ from that of the overall population."
Manning-Courtney concurred. "For me, this study lends support to the recommendation I make to a lot of families that there is no evidence to support restricted diets," she said. "They're dangerous and risky. You have to think long and hard before you, as a parent, make that choice."
Gastrointestinal diseases and ASD
A new study regarding the above is out and demonstrates the following:
Autism not tied to bowel movement patterns
Thu Jul 23, 2009 3:12am IST Email | Print | Share| Single Page[-] Text [+] By David Douglas
NEW YORK (Reuters Health) - Despite some reports to the contrary, children with autistic spectrum disorders do not have bowel movement patterns that suggest gastrointestinal problems, UK researchers report.
Autistic spectrum disorders are a group of developmental conditions that hinder people's ability to communicate and build relationships. Previous studies, though inconclusive, "have described gastrointestinal symptoms in children with autism," Dr. Alan Emonds, of the Center for Child and Adolescent Health, Bristol, and colleagues note in their study in the journal Archives of Disease in Childhood.
However, based on their results, "The bowel habits of young children with autistic spectrum disorder, in general, are no different from the rest of population," Emond told Reuters Health.
Emond's team came to this conclusion after studying data from 78 children recognized as having autistic spectrum disorders and 12,906 other children without such disorders.
During the first three and a half years of life, there were no major differences between the groups in such factors as stool color, consistency, the frequency of diarrhea or constipation, and of stomach pain.
There were some children who began to have more stools per day at 30 months of age, but that "may be a secondary phenomenon related to differences in diet," the authors note.
Nevertheless, Emond noted that some older children with autistic spectrum disorders do have bowel symptoms. "It is not clear whether these symptoms are due to dietary changes or abnormalities in intestinal function associated with autism. Further research is needed."
SOURCE: Archives of Disease in Childhood, July 2009.
© Thomson Reuters 2009 All rights reserved
When reviewing this on msnbc.com, the video showed their head medical specialist stating that this means special diets do no good. While I don't necessarily agree with all of the Bio Medical interventions- chelation for example, others, like fish oil and the GFCF diet seem rather harmless.
My question is to whether from the study above, you can invalidate the experience many parents go through? While I don't think it is a cure all and firmly believe that intensive early intervention helps the most, does it hurt to try this diet or oil?
By the way, Little Bug's birthday was this Saturday and as soon as I have the pictures, you'll get a post.
Autism not tied to bowel movement patterns
Thu Jul 23, 2009 3:12am IST Email | Print | Share| Single Page[-] Text [+] By David Douglas
NEW YORK (Reuters Health) - Despite some reports to the contrary, children with autistic spectrum disorders do not have bowel movement patterns that suggest gastrointestinal problems, UK researchers report.
Autistic spectrum disorders are a group of developmental conditions that hinder people's ability to communicate and build relationships. Previous studies, though inconclusive, "have described gastrointestinal symptoms in children with autism," Dr. Alan Emonds, of the Center for Child and Adolescent Health, Bristol, and colleagues note in their study in the journal Archives of Disease in Childhood.
However, based on their results, "The bowel habits of young children with autistic spectrum disorder, in general, are no different from the rest of population," Emond told Reuters Health.
Emond's team came to this conclusion after studying data from 78 children recognized as having autistic spectrum disorders and 12,906 other children without such disorders.
During the first three and a half years of life, there were no major differences between the groups in such factors as stool color, consistency, the frequency of diarrhea or constipation, and of stomach pain.
There were some children who began to have more stools per day at 30 months of age, but that "may be a secondary phenomenon related to differences in diet," the authors note.
Nevertheless, Emond noted that some older children with autistic spectrum disorders do have bowel symptoms. "It is not clear whether these symptoms are due to dietary changes or abnormalities in intestinal function associated with autism. Further research is needed."
SOURCE: Archives of Disease in Childhood, July 2009.
© Thomson Reuters 2009 All rights reserved
When reviewing this on msnbc.com, the video showed their head medical specialist stating that this means special diets do no good. While I don't necessarily agree with all of the Bio Medical interventions- chelation for example, others, like fish oil and the GFCF diet seem rather harmless.
My question is to whether from the study above, you can invalidate the experience many parents go through? While I don't think it is a cure all and firmly believe that intensive early intervention helps the most, does it hurt to try this diet or oil?
By the way, Little Bug's birthday was this Saturday and as soon as I have the pictures, you'll get a post.
Thursday, July 23, 2009
Little Bug's Superhuman Feats of Oral and Gastro Intestinal Wonderment!
Yesterday was like any other day. Any other day in which your child can't distinguish food items from non food items at 2 years and 362 days of age. In the past month alone, he has eaten, attempted to eat, or mouthed the following items:
Velcro*
Playdough*
Raw beans*
The plastic ring from a milk jug
The faucet on the bathtub
Paper clip
Rubber band
Matchbox car wheels*
House Keys
Yarn*
Sticks
Rocks*
Sand*
The kitchen Table
The living room table
The coffee table
Baby wipes*
Soap*
(the items with astericks next to them were successfully consumed.)
Yesterday far exceeded all previous performances. We were in the yard playing with our neighbor's daughter. In the time it took me to turn around to say hello to our neightbor, Little Bug found a piece of glass that was 2 inches long and BEGAN TO EAT IT!
I rushed over to him, which means that he tried to swallow it as that is what he does, and tackled him to the ground and forced his mouth open in order to get the glass out. My poor neighbor is standing there as I force Little Bug to keep his mouth open so that I can see if there are any shatters of glass. (There weren't, just several cuts along the sides of his mouth.)
She looked at me and shook her head. "But that was glass! He didn't cry? Can't he feel it?"
I tried to explain that we don't know. Her response was to look at Little Bug and say, " You will be the best side show performer ever!"
We are lost and don't know what to do about this. While I understand that *nothing* happened, what could have happened plagues me. Please, if you have any ideas, send them our way.
Velcro*
Playdough*
Raw beans*
The plastic ring from a milk jug
The faucet on the bathtub
Paper clip
Rubber band
Matchbox car wheels*
House Keys
Yarn*
Sticks
Rocks*
Sand*
The kitchen Table
The living room table
The coffee table
Baby wipes*
Soap*
(the items with astericks next to them were successfully consumed.)
Yesterday far exceeded all previous performances. We were in the yard playing with our neighbor's daughter. In the time it took me to turn around to say hello to our neightbor, Little Bug found a piece of glass that was 2 inches long and BEGAN TO EAT IT!
I rushed over to him, which means that he tried to swallow it as that is what he does, and tackled him to the ground and forced his mouth open in order to get the glass out. My poor neighbor is standing there as I force Little Bug to keep his mouth open so that I can see if there are any shatters of glass. (There weren't, just several cuts along the sides of his mouth.)
She looked at me and shook her head. "But that was glass! He didn't cry? Can't he feel it?"
I tried to explain that we don't know. Her response was to look at Little Bug and say, " You will be the best side show performer ever!"
We are lost and don't know what to do about this. While I understand that *nothing* happened, what could have happened plagues me. Please, if you have any ideas, send them our way.
Wednesday, July 22, 2009
Book Review
I have gotten back into the swing of ASD research and wanted to share some of my experiences.
The first book is "Daniel Isn't Talking" by Marti Leimbach. It is a fictional account of one mother's trip down diagnosis lane. I found this book to be comforting. It speaks honestly to the fears, worries, and greif that I went through. The difficulty that the main character- Melanie- had pre-diagnosis, the waiting for something to go wrong, knowing something was wrong but not really "knowing" it, was familiar.
The second book is called "Autism Life Skills" by Chantal Sicile Kira. I found this book to be informative as it provided a nice insight into the what people *on* the spectrum want. So often we speak for our children and write the books ourselves. We speak from our experiences and view point. While most of the items on this list are common sense, the perspective provided and the why's and how's were interesting.
I did find it a bit overwhelming emotionally. Reviewing items such as abuse prevention, living situations, and employment are difficult to digest. This will be a book that I keep on my shelf and refer back to.
Recently, I have found myself back at that point where the ASD diagnosis is painful. Most days, it is okay, however like any grief cycle- which most of us go through- you come full circle and find yourself experiencing the same difficutlies. As a person who has lost three parents, I can tell you that it doesn't go away per se, it just gets easier. The times when it hurts gets further and further apart.
Right now, it is raw again. Maybe because of it is the anniversary or because of the books of nerves from taking the training wheels off. Regardless, I have found that trying to look at the long term- like the material above- is overwhelming.
The first book is "Daniel Isn't Talking" by Marti Leimbach. It is a fictional account of one mother's trip down diagnosis lane. I found this book to be comforting. It speaks honestly to the fears, worries, and greif that I went through. The difficulty that the main character- Melanie- had pre-diagnosis, the waiting for something to go wrong, knowing something was wrong but not really "knowing" it, was familiar.
The second book is called "Autism Life Skills" by Chantal Sicile Kira. I found this book to be informative as it provided a nice insight into the what people *on* the spectrum want. So often we speak for our children and write the books ourselves. We speak from our experiences and view point. While most of the items on this list are common sense, the perspective provided and the why's and how's were interesting.
I did find it a bit overwhelming emotionally. Reviewing items such as abuse prevention, living situations, and employment are difficult to digest. This will be a book that I keep on my shelf and refer back to.
Recently, I have found myself back at that point where the ASD diagnosis is painful. Most days, it is okay, however like any grief cycle- which most of us go through- you come full circle and find yourself experiencing the same difficutlies. As a person who has lost three parents, I can tell you that it doesn't go away per se, it just gets easier. The times when it hurts gets further and further apart.
Right now, it is raw again. Maybe because of it is the anniversary or because of the books of nerves from taking the training wheels off. Regardless, I have found that trying to look at the long term- like the material above- is overwhelming.
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