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.
Wednesday, October 28, 2009
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.
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