This is not a post on dyslexia, which is often misinterpreted as mixed up letters, although if dyslexia is in your mix of alphabet letters that follow you or your family around, maybe you'll still find something valuable here.
I will often say "and whatever other alphabet letters follow him around" about The Critter or Younger Critter. These alphabet letters are, of course, the jargon we sped'ers must know and embrace to help our kiddos. Ours go something like this: HG/GAD/ASD/ADHD/LD-WE/SPD/mTBI in no particular order. (There's a list of these at the bottom with some interesting links) That is a looooong string of letters for any kiddo to be carrying around, let alone understand, accept and leverage in a world that can, at times, barely be accepting of even ONE of those. Some may say, well really the ASD encompasses all of that...and I might agree if you're reading the DSM-V or any other textbook, but that's not where we live. We live in a world that still forgets that not all ASD peeps are non-verbal and that even while we are (finally) starting to assume that SPD is a big hurdle for ASD peeps, we forget that HG peeps are also more likely than not to have SPD. Oh, and do NOT get me started on trying to accurately diagnose all of these alphabet letters when there are no medical diagnostic tests for them! THAT is a completely different post that may never be written and only the march of time and medical progress will sort out.
I suppose this post is more about our need to "sort" even a single critter into each separate bucket of alphabet letters. Oh, The Critter told a joke to the class after the teacher told him not to, that must be behavioral. Oh, The Critter wasn't able to work in class today, that must be behavioral. Oh, The Critter wasn't able to do warm-ups in PE today, that must be behavioral. Every time I get a call, email, text on something The Critter or Younger Critter wasn't able to do, I feel like I need to know WHY and not just why like neurotypical parents know why, but the specific trigger and what we missed in the framework of supports/accommodations/rewards/consequences/etc. that could have presented it. I find myself putting on my kaleidoscope viewer of all these alphabet letters jumbled together and trying desperately to twist and turn the event and perspectives in my mind so that it can be seen through a single color in that kaleidoscope, a single set of alphabet letters and then placed in a neat little bucket in the row of buckets. Despite those efforts and time spent on those efforts(less time now than in the past), life simply doesn't work that way. Not only does life not work that way, it doesn't work that way for ANYONE - not even those without these fun letters following them around. I can't for a minute say that The Critter told that joke because he is a typical 7th grader or because the asynchronous development from the HG makes him socially awkward or because when the teacher said NO, his ADHD prevented that information from getting to his brain and stopping him. I can't say that his inability to do work in a class was the anxiety or the dysgraphia or that he didn't see value in the work because the HG makes so much grade level work excruciatingly boring. I can't say that he couldn't do warm-ups in PE because they made his vestibular and proprioceptive senses go bonkers...Even if I TALK TALK TALK to The Critter to help me twist and turn that kaleidoscope to just the right set of alphabet letters(which he loves about as much as any 7th grader), I often simply end up admitting defeat at determining exactly WHY and even whether a behavior is common or not among boys his age. I admit defeat and concede the win to his letters. However, admitting defeat in one battle can often allow us to focus on the areas that really matter. So finally, after all of that searching through the kaleidoscope, I put it down and simply go back to knowing that behavior is communication.
Once the kaleidoscope is down, I can see The Critter just as he is far better. While we may all know that you must love the person in front of you, not the person you want them to be, it is so HARD as a parent, let alone when all those damn, bouncy alphabet letters keep moving around between you and them. I am simultaneously advocate, therapist, parent and ally. Once I see The Critter just as he is, those incidents of misbehavior can be handled better. I can advocate for tweaking accommodations. I can parent through rewards and consequences. I can listen to him rage about why doing the work, doing warm-ups and not telling the jokes are so hard as his ally and then hug him. I can ask him for ways he can overcome these hurdles and advise him and teach him as his therapist. Hopefully, after all those hats get cycled through, I can help him put down his own kaleidoscope of his alphabet letters and teach him to love and embrace who he is, in all its intensity, magnificence and magic, so he may one day share it instead of hide it. It will be a long road, but it certainly will not be boring.
Here's the list of acronyms mentioned and maybe a few more for good measure:
HG - Highly Gifted
PG - Profoundly Gifted
GAD - Generalized Anxiety Disorder(social/situational/everything causes anxiety)
ASD - Autism Spectrum Disorder (a constellation disorder)
ADHD- Attention Deficit Hyperactivity(maybe) Disorder
LD-WE - Learning Disability of Written Expression (in our case Working Memory subtype of dysgraphia, which is a LOT more than just handwriting) www.handwriting-solutions.com
SPD - Sensory Processing Disorder (at LEAST 8 senses and peeps can be hyper or hypo responsive and then either be seeking or avoiding for each one) www.sensory-processing-disorder.com is a great starting point and This is Gabriel is a great kid's book
vestibular sense - sense of balance and motion
proprioceptive sense - sense of where you are in space and relational to other objects
interoceptive sense - sense of internal body needs - hunger, too hot, too cold, need to pee or poop
DSM-V - Diagnostic Schedule of Medicine release 5 https://www.psychologytoday.com/blog/side-effects/201305/the-nimh-withdraws-support-dsm-5
VPD - Visual Processing Disorder (diagnosed by a developmental optometrist) www.covd.org
APD - Auditory Processing Disorder (diagnosed by a developmental audiologist)
mTBI - minor Traumatic Brain Injury aka at least a concussion (TWO of these are in The Critter's past, one far more severe than the other and not handled well at the time - preceded the need to go searching for alphabet letters) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3208826/
PCS - Post Concussive Syndrome (lasting effects of multiple areas of behavior and cognition after a concussion even if no impact is seen via MRI)
PANS - Pediatric Acute-onset Neuropsychiatric Syndrome
PANDAS - Same as PANS but specifically related to Strep infections http://www.pandasnetwork.org/understanding-pandaspans/what-is-pans/
Dr. Selz looks at what I have been calling the alphabet as a pie chart. Here's his great post on this:
http://shutdownlearner.com/whats-in-your-childs-pie-chart/
No comments:
Post a Comment