Asperger’s Syndrome: Gumby and Wolverine

Posted by Sallie | 0 comments

Asperger’s Syndrome: a body like Gumby with a mind like Wolverine’s core being

Our son has always had a body he could do weird things with. He pops his jaw in and out of socket. He manipulates his fingers in a way that cracks and pops like wood on a fire. His neck twitches in a way that I sometimes wonder if he hasn’t done a complete 360. I always worry a bit when he says, “Hey, watch this!” because I’m never quite sure what is coming. He’s flexible and weird, but our family likes him like that!

I remember when he was very young and would be going through a new growth spurt. Each time brought on pain and misery for him. He could feel the muscles stretching and twisting. Everyone experiences the same stretching and twisting when they grow, we just don’t usually feel it. Caleb always felt every single bit of it. He would cry in pain. He would miss school. He would stay in bed all day sleeping because he was worn out from the crying. I didn’t know what was wrong with him and the first few times I took him to the doctor, only to be told they had no clue what was wrong and proceed to send him home with crutches. I’m not sure what they thought the crutches would help with but maybe it made them feel better to send him home with something rather than nothing. Hindsight is 20/20 and I now know those growing pains were because of his accompanying sensory issues that are a normal part of life for a kid with Asperger’s Syndrome.

Even with all of Caleb’s special tricks and abilities, his muscles are still very weak. I don’t think that he can’t develop his muscles because he does lift weights with his dad. I think it is probably just more of a mindset, or perhaps a memory of pain, that keeps him from doing more muscular type things. Twisty and bendy Gumby he might be. Sculptured and muscly, not so much.

There is another normal part of life for Asperger’s kids (Aspies, for short), and that is their adamantine attitude. Any mother of boys recognizes the closeness of that word to adamantium, the substance injected into Wolverine, the Marvel character, that adheres to his skeleton and makes it possible for him to have cool things like knife-sharp claws shoot out from between his knuckles. Merriam-Webster (http://www.merriam-webster.com/dictionary/adamantine) gives one definition of adamantine as rigidly firm, or unyielding.

Boy, oh boy, can I relate to that!!

Back when Caleb was about 7 years old, he walked up to a lady with a grocery basket of goods in the store and started taking things out of her basket and putting them to the side. She asked what he thought he was doing, and he told her she had more items than was allowed in that line. We apologized as we tried to hide our laughter from both Caleb and the distraught lady. We didn’t even actually have a diagnosis for Caleb at this point but his rigid interpretation of the rules was evident at a very early age.

At a different time, after his diagnosis, Caleb got into an argument with his AWANA teacher over a picture in his Bible. We had always taught Caleb that everything in the Bible was true and his class happened to be talking about what Satan looked like that night. Caleb began describing Satan from the picture he had in his Bible. Mr. S. told Caleb that was just an artists rendition but that man couldn’t know for sure. Caleb began crying and called his teacher a liar for teaching the boys something wrong. We had to have a long discussion after that about what we meant when we said everything in the Bible was true. It was one of our first lessons as parents in making sure that Caleb comprehended our meaning as well as our words.

Our most recent lesson in Caleb being adamantine in his thought process was this past Sunday. Caleb went with his dad, sister, and I to work on a Habit for Humanity Build Blitz in a neighboring town. There were so many people working that it was hard to find a simple job for Caleb to do that didn’t require too much muscles but was easy enough for him to comprehend. He did things like remove nails from scraps of wood, gather 2×4′s for kick plates for the roofing guys, and put his long arms to good use by handing things from the ground up to the roof.

We came to a lull in the work down on the ground and several folks were asked to carry water and snacks around. Three times I asked Caleb to grab a case of water and three times he said “I know you are telling me to take water around, but do I HAVE to do it? Who else says I have to?” I soon realized that Caleb wasn’t about to budge from asking that question. His arms were crossed. His head was tilted to the left and down and his lips were pursed. A definite adamantine stance for Caleb!

An NT (neurotypical — http://en.wikipedia.org/wiki/Neurotypical) persons first thought would be that my son was being disrespectful. However, as an experienced mom of an Aspie, I know that Caleb was actually asking “Who is the boss at this site, and is that what the boss wants me to do, or would he prefer I do another job?”

I could have argued with Caleb until I was blue in the face. Most NT’s — whether it be teachers, or coaches, or friends — WILL argue because they just don’t understand what is really being said. I knew several people were watching with disbelief registered on their faces and could tell they expected a showdown between the 6’4″ boy and 5’6″mom. I recognized that my only good option was not to continue repeating my answer to Caleb with a “Yes, I said you have to carry it.” but instead to turn around and walk away. A few minutes later I saw Caleb walking around and offering people water from the case he was carrying.

Caleb understood that since there wasn’t a site boss around for him to ask what to do, he might as well do what his mom said to do. Afterall, I am his boss, too!

Aspies don’t have an adamantine attitude simply to make their parents wearing with repetitive commands. They just know the rules and want folks to follow them. Precisely! I suspect Caleb will always have an adamantine mindset in most things. Some things will be worth arguing about…most won’t. The important thing to know is which ones are which!

Sallie is an off-again, on-again homeschooling mom to her 4 children, ranging from elementary to high school. In her writings, she discusses the challenges of homeschooling a child with disabilities and offers insight to those who sometimes feel all alone in a round hole world. Please visit her at Seaside Tales