Thursday, May 31, 2012

unusual attachments

Tate with his beloved duck named Boris.
One of the signs of autism is an unusual attachment to inanimate objects.  Tate began this at a very young age.  These objects come and go and sometimes come again.  Often, the attachments are video/television related.  One of the first objects I remember Tate attaching himself to was a Blue’s Clues notebook.  He loved the show so I got him a little plastic notebook that came with a crayon.  I had no idea what I had started.  Tate carried the notebook with him everywhere and he slept with it.  If the crayon was separated from the notebook he became inconsolable.  The crayon broke and I replaced it with a similar one but he couldn’t stop thinking about the broken one.  When Tate woke in the mornings, if the notebook was not right beside him, there was panic.  If Tate laid the notebook down and couldn’t remember where he left it, the whole family searched madly until it was found because Tate seemed to be in physical pain.  The notebook became too big of a burden for us to bear.  The Behavior Consultant I have relied on so heavily, advised me to take the notebook away and I threw the notebook out.  We went “cold turkey.”  It took about three days for Tate to accept it but it was gone and our lives became so much easier.  I think if we found a plastic, toy notebook like that today, he’d pick it up and hang on tight.  The pull of the notebook was that strong.  Any small spiral notebook is still very appealing to Tate and I am careful to watch for the obsession to begin.  I make those little notebooks disappear if I see an attachment forming.  I’ve hidden and discarded many over the years.

There have been numerous attachments to objects since that first notebook.  Toy Story toys were very appealing to Tate and he was very attached to a Woody doll for a while.  The doll became a real problem because Tate wanted the hat to stay on the doll’s head at all times.  Tate couldn’t sleep much at night for a while because every time he laid the doll down, the hat would come off its head.  Tate wanted Woody next to him on his pillow (with the hat on) but the hat couldn’t stay on in that position.  Tate would stay awake, to hold the hat on Woody’s head.  I finally had to take Woody away at night and make a rule that Woody could not “sleep” in Tate’s room.  That took days for him to accept.  When we saw Toy Story 3, we were in the theater.  There is a scene in the movie and Woody actually loses his hat for a while.  When Woody lost his hat, I thought “Oh no!  This is going to be a problem.”  It was.  I was empathetic as Tate stopped enjoying the movie and worried about Woody without his hat.  I feared Woody would go on to do Toy Story 4 hatless and leave me with a miserable little boy for years to come, but Woody recovered his hat so Tate and I were spared.       

In that same Toy Story sequel, Buzz spoke in Spanish and Tate became very insistent that his own Buzz should be able to speak Spanish.  He couldn’t let it go.  These kinds of thing become so important to him that he thinks of little else.  If I had been able to find a Buzz that spoke Spanish I probably would have bought it for him.  Most of Tate’s toys do not become obsessions.  Most of Tate’s toys are rarely played with at all.  He likes toys but he likes them to sit on a shelf so he can admire them.   Tate likes to organize his toys into groups.  Some of the groupings make sense to me but some do not.  His cars might all be in a box together but his Star Wars toys might be mixed in with other boxes of toys he “organizes.”  If I try to rearrange things it bothers him and he will often “fix” the “mess” I make when I try to organize.  Tate thinks in this same “unorganized organization” as well.  Temple Grandin explains it well in one of her books.  One memory or thought triggers another and soon Tate is thinking about something that is totally unrelated to the topic at hand.  Because the movies and videos are so appealing to Tate, most of his thoughts come back to a movie scene or character.  This kind of unorganized thinking makes it very hard for Tate to learn.  This is why Tate cannot learn from lectures.  Besides getting lost in all the language that he cannot process quickly enough, he is distracted by all his own thoughts.    

Sometimes Tate becomes attached to things other than toys.  Getting new shoes was something I always dreaded when Tate was younger.  He would carry around the old ones, while he wore the new ones.  He had to “mourn” the loss for a day or two.  Trading our Suburban for a van a few years back was pretty hard on Tate.  Getting new bedroom furniture was a very hard thing.  Tate has blankets and pillow cases that have become very important to him as well.  He has the "pet" rock named Rocky that has been very important to him.  Sometimes Rocky is a big part of our life and then we don’t see him again for a while but he always seems to resurface.  Tate has had attachments to sunglasses before and that attachment had to be nixed.  He wanted to wear the sunglasses, even inside, so it was hard for Tate to see.  One of the longest attachments Tate has ever had is to his watch and his hat.  Tate cannot tell time but he loves his watch.  He couldn’t buckle a watchband for a long time so I found a Velcro band.  The watch even quit working and Tate still wore it.  However, a few months back, he traded it for a new watch, with a strap that buckles and he learned to buckle it.  I was shocked he would even consider a new watch but he did.  There was a time when trading his old watch for a new one would have caused days of anguish.  Tate is so attached to his hat that some people have never seen him without it on.  Hats have always had a tremendous pull for Tate.  He had a fedora he loved when he was little but it was not age appropriate so we hid that one and he chose to wear a black news-boy hat.  Tate wore it until it was falling apart.  Each time a hat becomes worn or stinky, and it is time to trade for a new hat, I warn Tate for a few days prior.  When we actually trade, it can be very stressful for a few days afterward.  It is much like a small child giving up a blanket or a pacifier.   

The last time we went hat shopping, Tate chose a ball cap with a Jayhawk on the front. It was the smoothest transition we have had yet.  I told him to pick two so he could have an extra.  I expected him to pick two exactly alike.  I told him he could do that so the next trade would not really be a trade at all.  But he chose two different hats with a Jayhawk on each.  Once in a while, I bring out the second hat and remind him we have it.  Hopefully, the next trade with go as well as the last.  He is really making some progress. 

If you liked this post here is it's "sequel" Shoes

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Thursday, May 17, 2012

Privacy: hiding the diagnosis or hiding from the diagnosis?

I hate privacy laws. The purpose is to keep people safe I suppose, but they do not work that way for my two kids.  Privacy laws keep schools from telling people about my kids’ disabilities. A substitute teacher is not supposed to be told a student has autism. How can that possibly work in the student’s best interest? In an emergency the adult in charge, would assume the student had age appropriate skills to cope. At the very least, the child does not learn as much on the days there is a sub if the sub does not know there is a challenge of some kind for that child. 

Tate in Kindergarten
I did not know this when Tate began school. I assumed all adults who came in contact with Tate, in any capacity, would be informed of his disability and educated a little about autism. That is not how it works due to privacy laws. Only the teachers working directly with Tate or Sydney are supposed to be told about their diagnosis and behavior issues. I had to tell my kids’ librarians, music teachers, P.E. teachers, art teachers, and secretaries about their disabilities myself. I even stopped the janitors at Sydney’s school and explained what her disability was and asked them to step in if they saw her behaving in an inappropriate way. 

Sydney and Tate
This year, I insisted both my kids’ IEPs state that substitute teachers have to be told about my kids’ special needs. It became very important to me after walking into a P.E. class when Tate was in third grade. He was crying, rocking and stimming while his classmates were playing a sort of dodge-ball game. It was chaos. At the front of the room was a substitute teacher who had not been told Tate had a disability. At that point, Tate did not have a support person with him in P.E. either. I was still fighting that battle. I could write volumes about the power struggle that went on over para support, and I probably will (but not today.) It is not quite as urgent that a sub be told about Tate’s disability if he has para support with him. However, I would still like every adult who has any part of educating (or keeping Tate and Sydney safe) to understand there is a language delay and behavior issues that need to be considered. 

We live in a very small town and don’t plan to move in the near future. The more people in town who know about Tate and Sydney and their special needs, the more people I will have watching and helping to keep them safe. They are less likely to be bullied by peers, if the peers and their parents, understand my kids have a disability, as well. 

Sometimes schools do not even show a student’s para the student’s IEP. The para works with the child more than any other person. The RR teacher, the classroom teacher, and the para are part of a team. If the para is not “in the loop” and does not even get a look at the IEP how are they supposed to fully understand the child’s needs and the goals set for that child? I have heard the arguments. First there is the privacy policy argument. And second, paras are not necessarily educated or trained as a teacher. Oh brother! If they were not intelligent adults, able to help educate my child, they would not have been hired. If they are not worthy of reading my kids’ IEP then don’t hire them in the first place. It is not a secret that my kids have an IEP. I want them read by everyone so they can be followed. 

I have asked that Tate’s classmates be educated about autism and the schools have been really cooperative in giving Tate’s classmates age-appropriate information each year. I wish there was a way to share information with Sydney’s classmates about her disability as well but how do you explain alcohol consumption during pregnancy to seven year olds? For now, Sydney knows she is adopted. She knows what that means. She knows what her pills are for and what they do and she knows she feels better and is able to think clearly when she takes her medicine. When the time is right, we will explain to Sydney what ADHD is and what Fetal Alcohol Syndrome is. How fair would it be to keep it from her? 

I know a parent who has a child with high-functioning-autism. The kid is several years older than Tate and has more social skills than Tate, and more language. He has never been told he has autism. Now THAT is a privacy policy. It must be a pretty difficult secret to keep. I have chosen to be very vocal about Tate’s autism. How much damage could be done if he did not know? I wouldn’t want to be present the day he found out he has autism, if he was never educated himself about what autism is. Tate hears the word autism every day and has since he was diagnosed. He does not have an accurate idea of what autism is because he doesn’t have that much language comprehension, but if he did, I would explain it all to him and be happy to. He does know he has something called autism. He sees he is different than his peers and he knows he needs more help than his peers.  He can see them doing lots of things he cannot do and he sees them understanding things when he does not. Writing those last two sentences caused me to stop and think: Tate probably has a pretty good idea of what autism is.

This is a post explaining how I educate Tate's classmates about autism and how helpful it has been: What is Autism? or Why Does Tate Act That Way?

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Monday, May 14, 2012

What is discrete trial training?

As soon as I discovered that Tate had autism, I began researching treatments. There are so many ideas out there. I wanted to find a treatment that was proven to have results. I wanted a “cure” for autism. I read the book "Let Me Hear Your Voice" by Catherine Maurice. In her book she told of the huge differences between her children before and after the therapy she provided. I wanted recovery for Tate! The only research based treatment I found was called Applied Behavior Analysis (ABA) therapy. This was the same therapy that Maurice had talked about in her book. The initial research was done by Dr. Ivar Lovaas and published in 1987. Lovaas had made great gains with the children he had worked with.  “Best practice” was 25-40 hours a week of discrete trial. Discrete trials are well-defined tasks with a beginning and end. Big tasks are broken down into small steps and are taught systematically. The end goal might be for a child to be able to recognize and match shapes, but it would be broken down into very small pieces. It might start with the child holding a card that had a black circle on a white background. The teacher would give very simple instructions, often just one word like “match.” The child would need to match the card he was holding to a card in front of him. There might be only two cards in front of him at first: one with a square on it and one with the circle that matched. When he mastered that task, a third card would be added to the table, then a forth card, making the task harder. When the child was able to match the circle correctly after five consecutive trials, the task might switch to matching squares. After all the shapes had been mastered, the teacher might introduce matching a blue square to a red square, showing the child that shapes were still shapes, no matter what the color. After switching colors and mastering several shapes in a variety of colors, we might try having the child match a three-dimensional shape, like a square block, to the card with the square or a ball to the card with a circle. There would be many small steps mastered so that the child with autism could see the much bigger picture. All these kinds of things are learned by the typically developing child during his regular play. It doesn’t take hours of sitting with a teacher to learn simple concepts. This discrete trial method of teaching is how Tate learned almost everything. It took many hours and it was tedious. The end results were worth every minute we spent doing these discrete trials. 

In my constant search for ways to help Tate, I read of many therapies that did not have research to back them up. I read about diets, vitamins, use of steroids, holding therapy, animal-based therapies, music therapy, and several other things. I was willing to try almost anything to help Tate, but nothing had research results behind it except the ABA. I do believe some of the other things help some kids. Swimming with dolphins would be a dream for a lot of kids and it might even help a child with autism in some ways but it is not a valid therapy in my mind.  Music therapy would be very valuable to the child that likes music as well. I know it would not have gotten the results we got with ABA and discrete trial though.    

I have had a few people try to convince me to take Tate off milk and wheat. There are about a dozen foods Tate will eat. If I took him off milk and wheat then there would be almost nothing left for him to eat. I know Tate well enough to know he would probably go for days without eating before I gave in and let him have his crackers, bread and milk back. If I really thought the diet would “cure” Tate’s autism then I’d throw out every last cracker and piece of bread in the house. The kids that I know on the diets, still have autism, most of them are lower functioning than Tate. They feel better on the diets and Tate probably would too. If you feel better then you behave better and can learn better, I am sure.  I just do not think the benefits, if any, would outweigh the difficulty in our home. There are few studies I've seen and no real research to back up the diet therapies that I've seen.  

When Tate was waiting to be diagnosed by a professional, I sent out a letter to our relatives and some close friends. We didn’t want to make dozens of phone calls, answering all the same questions over and over. I explained what we were going through.  We had already decided we would be jumping into ABA therapy with both feet. I asked my friends and family to support us in our decision and not to buy into all the theories about “cures” they would hear about. There were no cures and only one research based therapy we were going to use. Immediately, I started hearing back from people with the suggestions I had specifically asked them not to give me. I heard: Tate needed to be going to a chiropractor, begin homeopathic treatments, use vitamins, take him off milk, and sign him up for horse-back riding lessons. Lots of people were just sure the government gave grants and all kinds of money to parents to help kids with autism too. 

I am very happy with the outcome of the early intervention program we provided for Tate. I am confident he benefitted a lot from the things we did. I don’t think I will ever look back and say I should have done anything differently. Had I hoped for a complete “recovery” from autism? Yes. Is it realistic to hope for such a thing? Probably not. Did God answer my prayers for Tate? Absolutely! 

Also by this author: "15 Truths of Parenting Special Needs Kids."

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