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.
Tuesday, August 25, 2009
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.
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