So, back maybe 6 months ago, it was determined that the Padawan, having been diagnosed with autism and ADHD, also had something called a peripheral motor disfunction.
All I was told at the time was that this meant his brain wasn’t “speaking” to various parts of his body. Specifically, I had been told that his brain couldn’t feel his abdomen/pelvic region or his hands.
A specialist was recommended, and she wasn’t covered by insurance. It took a long time to afford it, but we finally got to take him to the first appointment/evaluation two weeks ago.
After spending an hour with him and taking him through various exercises, everything from writing his name, to copying pictures to throwing balls and standing on one foot, she had a clear idea of what was going on.
She told me he is highly intelligent but suffering with overactive muscles (constant tension, even when in a state of rest) and compensating for the lack of control through his behaviors. This constant state of tension creates such a major distraction in the brain, to the point where his mind is using more of it’s available resource and energy helping him function through the basic, mundane tasks of his day than most people.
She explained how he switches off certain parts of awareness to focus on something, so that his energy can be siphoned to the topic of interest. This is why he can’t do many things that come naturally to others. For example – he cannot yet hold a writing utensil with the “pinching” method for more than a few moments. This is why, she said, occupational therapy was unsuccessful. His problem isn’t in the motor function itself, the problem is in how the brain speaks to the muscle groups due to the tension and lack of awareness of that specific part of the body.
He has become highly creative and has an accelerated level of creativity and imagination for his age. She said this is, in part at least, because his brain has learned to compensate for his lack of awareness by switching from right to left brain dominance when needed. This is also why he has no left/right awareness or dominance. Meaning, he switches from his left to his right hand indiscriminately and often confuses left from right. This is also why he has a hard time throwing balls or frisbees or catching ANYthing, no matter how close he is to it. This is why he has difficulty reading, writing or processing any written concepts of any kind.
Everything that he is learning, he’s having to learn through what she called a “splintered pathway” of understanding. She explained it this way because it’s not a direct path – not a straight line from stimulus to understanding. She said it’s more like a lightening bolt, with many, sharp points along the way and at each point, there is an opportunity for the information to be lost, changed, or forgotten. Every time the information reaches a point on the lightening bolt, it has to be redirected back on track, so there are literally hundreds of opportunities for the data to be lost along the way!
It’s like having to race through your busiest day full of commitments to a bunch of different people, after having not slept in 3 days, and feeling like if you don’t do everything perfectly, the world will literally end. She said… that’s how he is living every day of his life.
She believes this is why he has no short-term memory, why he is literally the poster-child for ADHD in almost every way, and why he still has pee/poop accidents when he is overwhelmed or hyper-focused on something like playing with friends, watching a movie he’s super into, or playing a video game. She believes most of his behaviors, his lack of control, his impulsive and compulsiveness, his anger and violent outbursts and emotional meltdowns… it’s all stemming from this inability to keep it all together, all the time, and still do things like walk, breathe, eat, listen to people, and basically, just… live.
Now, he may have no short-term memory, but he has tremendous long-term memory! He can remember places he hasn’t been since he was two and three years of age. He can remember soundtracks for movies he saw 1 time. He can remember exactly what you said last week when you got mad and used that word you shouldn’t have used in front of him. I still don’t entirely understand that…
Anyway, to be able to focus on and process what he’s doing when given a task like riding a bike, writing his name or even playing with a friend, he is simultaneously filtering out all the white noise, tension and conflict of stimulus. Information has to be routed in a different way to make it all the way into his brain and since it may be lost along the way, the creative side of his brain often fills in the gaps…. which is why it’s considered “forgetfulness” or it’s assumed he just isn’t paying attention. He IS paying attention and if you say, “hey, did you hear me when I just told you to do this thing I asked you to do?” he will say, “well, yeah…” so it gets super frustrating because yes, he heard you. No, he didn’t forget. No, he didn’t do what you asked. And yes, he’s upset, too, becuase he doesn’t know why he didn’t just do what you wanted.
As a parent, this typically means the kid is being defiant and not listening, not following directions or not complying.
This may not actually be true in his case, so that makes life as a parent… frustrating. (Is there a word that means frustrating at levels like the intensity of the white, hot sun burning your eyes out of their sockets? That’s the level of frustrating this is.)
He often gets angry at “his brain” for being stupid or making the wrong choice when he really did want to do the right thing. It’s heartbreaking when he has a meltdown after being repremaded after the 10th time for not listening and he just breaks, screaming at his “dumb brain” for being evil and making bad decisions.
Yes, this is something he has actually said… many times. He has said, “mom, I am a good guy, but my brain is evil and it makes me do the thing you didn’t want me to do”.
Now, after this, I think I understand what he means by this.
As she was explaining all of this to me, it suddenly reminded me of Jurassic Park. Remember when they had dino DNA that had gaps in it and they filled it in with frog DNA? Well, this is like that, except the DNA strand is the message being sent to the brain that says “mom just asked me to stop yelling for no reason”. That message is rolling along on its way to the brain and at every turn, it’s losing some pieces, creating gaps in the message. That’s when his creative brain kicks in to fill in those empty spaces! Instead of frog DNA, the gaps are filled in with things like Minecraft TNT, Star Wars battle scenes, the soundtrack from Moana or just an image of Rocket the Raccoon with a giant gun screaming at the top of his lungs. All of which roll around in there with the original request to stop yelling and results in, “mom said I should harness my inner Rocket and go find the biggest gun in my room and run around the house screaming with it!”
It also made me think of what happens when we walk through a door and forget what we’re doing once we step into the other room. That’s him – all the time, with every single thing he’s doing in his day, but instead of wondering what he was supposed to do, his creative brain fills in the gaps with some random thing he likes and the original purpose is completely lost. “I was looking for green socks” turns into “I was looking for something that is green and goes on my foot… Things that go on my foot… Oh! I bet I could put this shoe on my head and walk around without it falling off- let me try that 5 times in a row for no reason whatsoever!”
So, obviously, this is making normal life 10 times harder, (for everyone) making mundane tasks less intuitive and taking twice the energy and effort for him than it would for anyone else… JUST to understand what is going on around him.
As you can imagine, school has been a challenge. We are nearing the end of our first year of homeschool and while I feel he has gained a great deal of skills, he’s not at the level he should be by the end of kindergarten. That really IS okay though, I mean, that is why we chose to do independent homeschool in the first place. His Educational Behavior Therapist told me, almost a year ago, to go slowly, only 3-4 days a week at most, 3 hours max a day, or I’d likely lose him completely and he wouldn’t remember any of it anyway.
Well, the therapist we saw the other day gave me some insight as to why this may be the case:
We already know from his evaluation last year that his primary method of communication is NOT verbal, even though he literally talks nonstop. Talking is not the same as communicating. He communicates with his whole body, through metaphor, through songs, though his hands and feet, through eye rolls and head turns, in addition to the words he says. His is a total-body communicator and you really have to pay attention to get the entire story.
So, with learning, She told me with anything that has to do with language; writing, reading or even math… if it’s on paper and has to be processed visually or a writing utensil is required, it’s not that it’s entirely worthless to teach him, but he may not retain the full concept at all until his brain has a clear pathway to get from A-to-Z.
(I have learned this already and much of our work is done on the computer because of it.)
She said that he will be able to memorize things through repetition so he can commit them to long-term memory, but he’s not really going to have a true understanding until his body and his brain learn to work together.
The effort being exerted through a constant state of tension is taking up like 80% of his brain power with only 20% left to learn with.
She said the fact that he can sound out small words, knows letter names, sounds, can count to 40, knows both 2D and 3D shapes and some basic math shows how intelligent he really is because he has learned all of this over all the noise he has to try and filter through his brain to get it locked in there.
It’s not all hard, though – He is great at creative thinking things! He likes history, science, he’s amazing at the physics puzzles in the game Portal 2, he can understand mathematic concepts and makes up stories, creating recipes in the kitchen, builds entire worlds, empires and battles with his blocks and small toys. He can make anything fun, any interaction a game and every minute of his life, if he is given the freedom to do so, can be turned into an epic journey.
So, the “treatment” to help increase his brain/body awareness is daily exercises. She gave me a bunch of them to do, and we have to do them two times daily; once before he gets out of bed in the morning and before he goes to bed at night. It’s changed our daily process and we are adjusting to this, but so far, it’s been going pretty well.
She even said it’s likely that after a year of this work, if we are super diligent about it and don’t slack off on getting it done, his test results may be entirely different.
She said not to get our hopes up becuase every child is different, but after focusing on this for at least a year, not only should he make significant progress in all areas of his life, but even his diagnosis may change.
Interestingly, she said over 80% of her patients are c-section babies (he was breech and taken via C-Section at 36 1/2 weeks after my water broke). She explained that the experience of the contractions manipulating and pressing against the body as it moves out of the birth canal brings a type of brain and body awareness that cannot be accomplished by any other means. Without it, sometimes children are left without that connection to having ever been triggered the “on” switch.
Clearly, this isn’t the ONLY cause of a deficiency like this, as she does have patients who were born naturally. She said birth trauma, illnesses and other factors can come into play, as well. It’s all still a fairly new science, so the “why” is still out there.
So, yeah – lots of stuff going on. There is a lot to process and many things to work through. I’m hoping this puts us one step closer to helping him feel that he truly has control over his life, his body and his future. I’ll update you on our situation as new situations arise.
If you have any questions or can share a similar story, please don’t hesitate to respond in the comments. I’d love to hear from you!