Wednesday, August 28, 2013

Get the hell back to school


Like many special ed kids, Ryan gets extended school year (ESY) to prevent regression. The ESY kids get a week or two off at the end of June, then have an abbreviated school day for the next month, and then have another two-week break before the regular school year begins.

Even though the time off from school is relatively brief, it highlights how much Ryan needs ESY. The weeks without the structure of school or the benefits of therapies are painful. Behavior regresses by months. Since Ryan is at an age now where he has friends who can read and could conceivably read this blog, I'll just say the last two weeks have been really messy. And stressful. And provided me with lots of aggression to take out on the track.

Ryan loves school. He has been pretty much begging to go to school for days. Every day he has asked, "Is today Wednesday? Can I go on the bus?" Well, today was finally Wednesday. You've never seen a child get dressed as quickly as Ryan threw on his clothes this morning. He marched around the front yard with his backpack on for 20 minutes before the bus was even scheduled to arrive. And after school, he volunteered "My first day of school was fun!"

First day of 3rd grade. Be still my heart.

I, for one, celebrated the first day of school with a long morning nap and a leisurely afternoon walk. Because surviving the break between ESY and school totally earns you a day off.

Sunday, August 25, 2013

A Real Friend

Ryan's new friends aren't just playmates. They're real friends. The kind of friends every person should hope to have someday.

Stu brought Ryan to the playground yesterday, and my friend Dee happened to be there with Ryan's buddies Gio and Lovie and their friends. While Stu was pushing Ryan, Lovie, and Lovie's friend Sally on the tire swing, Ryan asked Stu to stop pushing so he could get off. Sally started making fun of how Ryan talks. Then, immediately and totally unprompted, Lovie snapped at her, "You need to stop saying that because it's mean." And Sally shut her nasty mouth.

While my heart breaks to think of all the Sallys Ryan will meet down the road, I'm so comforted to imagine there may also be some Lovies.

Friday, August 9, 2013

Ryan's Friends, and a chicken

Ryan suddenly has friends.

My friend and teammate Dee has five kids, two large dogs, and 18 chickens; there's a lot going on at her house. Ryan loves going over there to hold the silkie chicken and to be part of the joyous chaos that is a large household.
Silkie chickens look like little llamas.
And he has had a couple of playdates with the two youngest kids. At their invitation.

Absorb that. Typical kids are inviting Ryan to play with them.

Gio is almost 7 and refers to Ryan as "Silly Ryan," to distinguish him from the other Ryans he knows. "He's so funny!" Gio gushes. "He makes me laugh."

Gio and Ryan splash around together in the pool at the Y, along with Gio's 5-year-old sister Lovie. Gio enjoys picking Ryan up in the water and carrying him around the shallow end. Lovie likes to play Marco Polo, and doesn't mind that Ryan needs my help to follow the rules. Both of them can swim well, but they don't care that Ryan can't. Lovie even tried to teach Ryan how to jump into the pool from the side, and didn't seem at all frustrated that her lesson didn't take.

Ryan seems to enjoy their company, and refers to them as "Miss Dee's friends, Gio and Evy." He frequently asks if we can go to their house to "see the chickens," but while we're there he's perfectly open to playing with the humans as well.

These are the most open, accepting children we've met in the last year.

Gio once said Silly Ryan is his best friend.

Pardon me, there's something in my eye.

Monday, August 5, 2013

Neurofeedback Therapy Update #4, or How I Know The Wires Are Hooked Up

I don't know if we've seen real benefits from NT yet, but I can say definitively that the electrodes the nurse connects to Ryan's head do stimulate his brain in some way.

I know this because the nurse found Ryan's Reset button.

After a week or more of what I thought was clear progress, Nurse Brainley announced she was going to start treating a different section of Ryan's brain - the P4, for those following along at home. This bit has something to do with socialization, so I was instructed to make note of whether Ryan became more or less interactive.

Answer: he instantly regressed by several months.

Suddenly, there were meltdowns in places we hadn't seen meltdowns since the winter. All at once, Ryan was declaring the single word "Tummy!" instead of "My tummy hurts/I'm hungry/There's something wrong somewhere and I'm going to localize the problem in my tummy."

And then the nurse went back to poking the previous region of Ryan's brain, and everything was fine again.

Don't mess with the reset button.