“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.
Thursday, October 8, 2009
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.
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