Alphabet soup diagnoses are not the all of Jude

2013-10-09 13:02:10 by Sarah Sanford, Mom Blogger, as posted on the inside.akronchildrens.org blog.

Lock 3 shutdown on my hip Lock 3 shutdown on my hip

ASD - A. Struggle. Daily.

SPD - Spectacular. Pain (in the collective). Derriere.

Autism spectrum disorder (ASD) and sensory processing disorder (SPD): Titles, names, a DSM V code, and Judeís reality.

In Judeís diagnostic care and treatment, these phrases have been suggested, written down on his ďpermanent record,Ē mulled over, marinated in, thought about, dissected, discussed and questioned by Team Baby Jude doctors for a few years now. They are terms that Vance and I have come to on our own terms. We are now cool with it. SPD - just another diagnosis. Wait your turn, there is a long line of icd.9 codes to get behind, SPD.

Vance and I both saw lots of signs of Judeís SPD starting in infancy, even though we didnít always understand it. We accept the daily extremes Jude needed and still needs - itís OK to sleep with a weighted blanket. In fact, weighted vests, gloves and compression shirts are awesome, too. For Jude.

Hats and layers getting Jude and a kind enough to participate Jane through a rainy morning. Hats and layers getting Jude and a kind enough to participate Jane through a rainy morning.

Itís ok to use earplugs, a big old stroller to hide out in and a blank stare when you get overwhelmed in a loud crowd. For Jude. Itís the regular to want BIG tastes in food like cinnamon, garlic and hot sauce. For Jude.

That is the sensory part of his life. He is a diagnosed dual registry sensory processing disorder kid, both high and low registry. Some aspects of life and the world assault Judeís senses so violently that you can see him physically react and recoil.

Other parts of life are too subtle for him - it looks like those light touches actually hurt him, too. That is when he seeks very deep input. My collar bone is a sweet spot for him to head bang. Donning knit caps and layers, he will stomp his feet harder than a HBCU Step Team (Historically Black Colleges and Universities). He will beg for a deep, huge bear hugs, complete with elbow and wrist joint compression. This has gotten us through many a meltdown. Dual registry SPD.

ASD

Vance and I get it that this is another documented diagnosis for Jude. And, I guess I believe it. Though, Jude is very far from the stereotypical autism kiddo. He makes eye contact. He has made friends. He has demonstrated the ability to learn. But, he also is ruled by routine - do not take his red cup away or stop him from pouring water back and forth between two red cups when he is focused. Please so not leave a door ajar, a drawer open, or turn off a ceiling fan in his presence.

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Change is incredibly hard for him - cutting his hair, trimming his nails, going from dark to bright lights ... all bad. Really bad. ASD - though less of an obvious diagnosis, we are OK with you too.

Day-to-day life raising a 3-1/2-year-old with both of these (kind of conflicting) disorders - that is when life becomes a tad challenging. Acceptance is the personal parental process part. And as a parent, that level of acceptance can come in waves, or you can walk into it like a buzz saw, out of necessity.

Vance and I are currently in the buzz saw part of accepting and accommodating ASD and SPD because Jude is getting bigger and stronger. His high muscle tone in his core and clearly defined biceps, triceps, pecs and abdominals make him a force with which to contend. He can put up a heck of a battle. What used to be a shutdown is now a massive meltdown. A loud, crying, violent meltdown. His head butts to my chest pack a bigger punch.

His ďsadnessĒ in a crowd is no longer a tear stained cheek with a silent cry. It is a blood curdling set of shrieks that jar folks around us and garner lots of unwanted attention

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He is nowhere near potty trained, which is a much more real issue at 3-1/2-year-olds and 33 lbs than changing a babyís diaper.

The boy who neurologically needed to sleep 16-18 hours per day has flipped a switch. He doesnít even sleep 18 hours in a week. Heís wide freaking awake most of the day and night. We find him meandering around our alarmed, locked home all hours of the night. This means I am back to not sleeping. I'll sleep when I'm dead.

His neuro seizure episodes are fewer and further in between, thankfully, but an episode will erase his gained thought processes and gross motor planning more significantly. The concerned looks and knowing glances from his therapy pros when they canít get him to follow a block pattern he has done oodles of times before are comforting and heartbreaking at the same time.

I donít think any parent is prepared for their kiddos to change the rules of the game. But in our case, when Jude changes rules, he raises the roof! What we need to remind ourselves is that Jude isnít making the rules - he is merely living by the rules that his body chemistry and brain are dictating.

That is where our parental level of acceptance needs to continue to evolve. Summertime activities have been a challenge. He has yet to dip his toe in the big pool. Italian Festival was a bust of a massive outburst and a deep compression shutdown where I held him for 2 hours melting underneath his body heat. The Taste of Akron was a failure, too. Summit County Fair was fair to midland and a play date with darling toddler Collin at our house went well.

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So, we continue to try to find public places he can be comfortable in, environments that work for the whole family where Jane can have some fun, too. We support and accommodate Jude to the very best of our know-how. We will just skip the crowded festivals and make homemade lemonade & funnel cakes.

This is what I think Jude would say to ASD and SPD:

"I recognize that you are a part of my life, and in turn my whole family's life, too. But you are not the all of me. You are just stuff. All you do is give my Mom and Dad a smidge more to struggle with daily. But if they had a choice between the pains in the derriere you have provided and the lessons I teach them, they would still take my alphabet soup of diagnoses any day of the week. Because whether it's CP (cerebral palsy) stuff, CVI (cortical visual impairment) stuff, dysphasia stuff, developmental delay stuff, or just typical 3-year-old stuff, my family loves me and all my stuff.Ē

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