Teachers Don’t Always Know Everything

When D. was in 3rd grade, we wanted to have him tested for autism.  We had all the paper work ready to go to Easter Seals except for the one D’s teacher was supposed to complete.  She did not want to complete the paperwork.  We told her that we saw signs of autism and that we wanted to have D. tested.  Her pat answer was “Well I don’t see it.”  Thankfully he had a different teacher for 4th grade.  She was a bit of a drill sergeant with D, and he needed it in her classroom.  In 5th grade he had an awesome teacher (His 4th grade teacher had retired at the end of D’s 4th grade year after a 41-year career with the school district).  When we went to his IEP meeting at the end of the year, the IEP team had in fact decided that D. is on the autism spectrum.

D. had had a seizure back in 2004, and test results showed he had abnormal brain activity.  He’d also been diagnosed with ADHD back when he was in Early Childhood Education.  Those of you who have done your homework know that autism ADHD, and epilepsy occur together all too often.  Medicines which make ADHD better run the risk of making epilepsy worse, and vice versa.  We didn’t want to get into the vicious cycle of adding one medicine to counteract side effects of another medicine, which would make the first medicine less effective, and basically had told the school they were just going to have to do the best they could.

When D. started 6th grade (in 2011) , we decided that it would probably be appropriate to put him on some sort of medication for his ADHD.  Went to his primary care doctor, expecting to walk out of there with a prescription for ADHD.  As Dr. K. was looking at D’s medical history, he decided that we needed to see a cardiologist (D has a heart murmur) and a neurologist before putting him on ADHD medicine.  We were shocked, because D had been seizure free since 2004.

The heart murmur turned out to be completely innocent.  The neurologist diagnosed D. with Benign Rolandic Epilepsy.  He said “If you’re child is going to have epilepsy, this is the kind to have because many of these kids only ever have one seizure.  Those who have more usually only have them in their sleep or when transitioning between asleep and awake.”  Also this form of epilepsy tends to go away during puberty.  He gave us clearance to put him on ADHD medicine, and said “Oh, by the way, I could tell within 15 seconds of meeting your son that he is on the autism spectrum.”

Back to the primary care Dr. we went, but did some homework before we went to see what ADHD medicine might be suitable for D, especially since we did not want to run the risk of him having another seizure.  There are two medicines for ADHD that do not carry an increased risk of seizures.  One is Intuniv, and the other is Stratterra.  The Stratterra caries the risk of heart problems, and the Intuniv does not, so we went with the Intuniv because it has the least bad side effects.  While D. is still not at grade level, he is able to focus during school and has not had any seizures as a result of this medicine.  We are very pleased with how it is working.

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A Temple Grandin Quote

“In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.”
— Temple Grandin (Thinking in Pictures, Expanded Edition: My Life with Autism)

Go do Something Other than Video Games

Most kids start getting into video games at a very young age.  Not D.  He would play occasionally, but most of the time there were other things he’d rather be doing.  We’d had a console for a few years and he never really showed much interest in it, even when we were willing to play a video game with him.  We attributed it to his autism.

About a year ago his grandparents on his mom’s side got each of the kids a 3DS.  Something changed.  He started playing more video games.  We saw this as a more neurotypical behavior, and, unlike most parents with neurotypical kids, we encouraged it.  He even started playing more game console type games, and has taken a real interest in Super Mario Bros.  He’s even saved money to buy his own games instead of blowing it on silly things that he will play with at most once or twice.

Today is Christmas, and his big sister M got him a game he’d been asking for for quite some time.  When he realized what it was, he was so happy he tackled her and gave her a great big hug.  How cool is that?

Autism Diagnosis: Share it or keep it secret?

My son, D, has had an IEP since before Kindergarten. At the end of his Elementary School years, the school changed the reason for the IEP from developmental delay + ADHD to Autism (the ADHD is still there though). Since the IEP change, he has finally begun to grow academically. However, other staff at the school were not allowed (by school policy) to know that D has autism, only that he has an IEP. We did not know this.

He's Autistic, not a TV, I can't just turn him down 'cause he's too loud for you.

So very very true…

D’s older sister, M, witnessed a member of the school’s staff threatening him with disciplinary action if he didn’t stop stimming. She told us about it. Needless to say, this did not sit well with Papa Bear (fotodad) and Mama Bear. Our philosophy is “If you’re gonna mess with Brother or Sister Bear, you’d better be prepared to deal with Mama and Papa Bear.”

We were livid when M told us about it. We requested (requested is probably too weak a word, more like demanded) a meeting to revise D’s IEP. The school complied with our request, and brought in the staff member and his supervisor as well. We explained that if D is being too loud, all anyone has to do is tell him to turn down the volume, not threaten him with disciplinary action for stimming. That would be like punishing the football team’s star quarterback because he broke his leg during a game. In addition, we gave the school permission to share D’s autism diagnosis with any school faculty or staff that work with him or deal with him on a daily basis. So far, the problems with this particular staff member have stopped, and we’re almost halfway through the new school year.

In my opinion, it is better to share the autism diagnosis with people that work with your child than to keep it a secret. There may be techniques that the staff at your child’s school can employ that will help him to do better. It may avoid problems as well.

Dad, can we go Home now?

D. has always been a homebody.  Back when he was a cub scout, we went to cub scout day camp every day for five days.  At the end of that week, he didn’t want to go anywhere.  Home is safe and comfortable to him.  During the holidays there are several family get-togethers and he is happy to be home when they are over.  Fortunately we never have more than one in a day so they are spaced out and it makes things easier for him.

E at The Third Glance is an autistic adult.  She has written a series of articles on how she copes with the holidays. D. doesn’t have the same issues that E has, but there are similarities.  You can read E’s coping strategies here.

Mashed Potatoes, Lima Beans, and Pears: Textures and Autism

I’ve never liked lima beans.  They taste just awful and have an odd texture.  Pears would actually be halfway decent if it weren’t for their texture, which in my mind is similar to that of lima beans.  Yuck!

My son, on the other hand, absolutely hates mashed potatoes.  In the beginning, he would only form of potatoes he would eat was french fries.  All other forms of potatoes were only grudgingly eaten because he didn’t like them (and we would only put a spoonful or so on his plate, and he had to eat them).  We can now get him to eat Au Gratin potatoes and Julienne style potatoes, which he has learned to like, but he still won’t eat more than a bite or two of mashed potatoes.  I tend not to push the mashed potatoes as much now because there are lots of other foods that he does like.

Haircuts are another dislike of his.  Something about the cut hair getting on his skin really irritates him.  Fortunately his mom usually gives him the haircut.  When he was younger, he would have a meltdown and would cry and say through his tears how itchy the hair was.  We’ve gotten around this by wrapping a towel snugly around his neck to keep the hair from going down his shirt, but invariably when removing the towel a few hairs would go down his shirt and he would start complaining again (though not a full meltdown) about how itchy he felt.

Our solution to the itchy problem? Immediately after the haircut, send him to the shower.  The water rinses the hair off of him, and he is no longer itchy.