Wednesday, March 6, 2013

"How is He Doing?"

People ask me all the time how Dean is doing - in general, in school, medically. The question is completely fine, but I'm never really sure what it means to that person, or to me, for that matter. Is it about how complicated or simple his medical issues are right now? Is it to what degree is he acting like a typical kid? Is Dean just getting through a day at school ok, or is he learning a lot, making a lot of friends? Or is it even how I feel about it all and not an objective question at all?

So I answer differently each time. And each time, I'm so incredibly grateful for someone asking, because it's a brave question. The answers might not be what they want to hear. Or what I want to acknowledge out loud. Or we might all be completely blown away at how far Dean has come.

Medical: Dean takes medications for anemia, B12 deficiency, narcolepsy/cataplexy, hypothyroidism, growth hormone deficiency, allergies (5 of them! And that's our family, not PWS :)), and he wears a bipap at night for obstructive sleep apnea. That's a lot for such a little person. It's fairly par for the course for someone with PWS, and of course in the back of my mind, I'm always (always) pondering the higher risk of sudden (and unknown) death in people with PWS. I can't given Dean a medication for that. Sometimes I feel like we have a good handle on all this and sometimes I'm not sure. The medical issues are also what makes it most difficult to get away for vacation, nights out, etc. But today, he's ok.

School: Dean LOVES school. Both of them. He's excited to see his friends and I can successfully use getting to see them as motivation for him to comply with getting ready in the morning. :) His teachers tell me that for the most part, he complies with school routines and is well aware of everything going on in the classroom. He is playful and engaging, even though he sometimes gets a little stuck on a certain activity (like books). Preschool has been fantastic for Dean, and each setting (typical and special needs) has been great for him for different reasons. He is well loved at both schools by kids and staff alike and is just part of the team. He has learned his colors, shapes, and knows how to read and spell (?!?!) his name. His teacher regularly tells me accomplishments that are hard to believe, but then I test him myself and they're true. Haha. :)

Overall: Dean is a busy almost-four-year-old boy. He is in tune with his environment and for the most part understands what we say. Dean has therapies five days a week and takes everything like a champ. His fine motor skills and expressive speech are quite poor, but they are coming along in their own time (today he did all 20 of his sound cards the first time! Yesterday, he took off his shoes, braces, and socks all by himself!). His behavior in general is definitely a little (ok, a lot) abnormal (very loud, makes strange noises, etc.), but people for the most part are so accepting. I love love love Dean's little quirks. He is so flipping cute, although Dean can also be quite the little punk that three-year-olds tend to be! He loves to tease Mommy and Daddy, and lately, his brothers as well. But he loves so many people so deeply. He hugs people everywhere we go and he is very loyal to his family.

And as hard as it is sometimes and as much as people will say that he is lucky to have us, we are so crazy lucky to have Dean as our son. I am proud to be his mommy. :)


Unknown said...

And he is so stinkin' cute! Miss seeing you all!

Janet Gulley said...

I NEED to see your boys!! AJ still loves to look at pictures and talks about them a lot.