sum sum summertime

Well, I'm up so ding-dong early that I thought I might as well write a post.

I've been freaking out, off-and-on, for months about what to do with Henry this summer. He could technically go to Easter Seals' summer camp for one more summer (the program is for kids up to 8 years old). But they have moved to a much-less-convenient location, the new location doesn't have a pool (a major factor in Henry's enjoyment of previous seasons), and I was unsure how much good that program was doing for him. I don't care about working on goals or anything like that in the summer, but I do want Henry to be stimulated and entertained and have fun. And as the oldest kid in that setting, I wasn't sure that he would. And I feared that his undesirable behaviors might gain some ground.

In searching for other summer options, I found that many programs were only offered a few hours a day (I'd call that "morning camp" rather than "day camp", wouldn't you?), and others were more than double the cost of what we had been paying at Easter Seals. Gulp. Not to get all up on my soapbox (ok, maybe just for a second), but what the hell are working parents of disabled kids supposed to do?

Tuesday I visited a potential (expensive) option. More about that next time. Tuesday night I had a little nervous breakdown (summer plans being just one piece of that). Wednesday I called Easter Seals and asked them to send me the registration packet. Last night (Thursday), when I picked Tommy up, L asked if I would like to have Henry come there for the summer. Um, duh? That would only be the perfect option.

Needless to say, I had been hinting around about this for months. L often watches Henry on random days off from school and holiday breaks. But the main concern she had expressed about the summer was their frequent trips to the pool. The smaller kids kind of split their time between the baby pool and the big pool. Sometimes L packs their lunches and even gets them to take naps there, under a tree!!!! (This woman casts some kind of spell over these children.)

Henry wouldn't want to stay that long, and he's way too big for the baby pool. His swimming skills are decent, but not good enough to hang out in the big pool by himself. And his social skills at the pool, um, leave something to be desired. His main ideas of fun interaction at the pool are:

A. Splashing you in the face over and over

B. Chasing you around and trying to dunk you

While other kids might enjoy those activities for a time, Henry needs help knowing when to END the playing. He might not pick up on cues like "Henry, I don't want you to splash me anymore." Ya know?

So, anyway, L's 14-year-old daughter (K), an excellent babysitter herself, had another option fall through, and is willing to be responsible for Henry at least a portion of the week, with L covering the rest! K can help at the pool, the park, the library, etc. AWESOME. I think it will be a relaxed summer for Henry, which he deserves. And Tommy is always excited about having his brother with him.

(And, I can drop both kids off at one spot and maybe get to work on time. Whatever.)

So, let's take a moment to appreciate that things do work out sometimes.

counting our blessings

Let's try to lighten the mood here by documenting some random funny kid stuff.

L had asked me to help out today by picking the kids up from preschool and bringing them to her house. Since 4 and 5-year-olds' lives are pretty boring, this was a BIG DEAL- much discussed ahead of time.

They all got buckled-in and I put in the High School Musical 2 CD to impress them as a cool mom. They opened up the console between the seats and pulled out the treasures in there: some happy meal toys, a portable CD player and a calculator. Then Tommy piped up:

"Guys, my car is really cool. S- look up. See that? See that? That's a hook that you can hang clothes on."

The hilarious part is that the other kids all agreed that the hook for hanging clothes on was a really cool feature. I'm thanking God that none of them said "oh yeah, well my car has a DVD player."

May my son always be this proud of the standard features of our life.

"I did good"

I had to leave work Monday because I was crying. Not just a few tears in my eyes- that happens just about every damn day around here. It was the kind of crying that doesn't seem like it's going to stop anytime soon. So I just ducked out the back door and went home to cry some more and then wash my face.
I don't really want to get into why I was crying- it was just one phone conversation too many about a stressful topic that has been the subject of countless conversations over the past few months.
When I got back to work, my friend said that she had been feeling like her emotions were really "close to the surface" lately. Another work friend told me he had been feeling very emotional over the weekend. So maybe there is something in the air at this time of year. I dunno.
It is the season of weddings (we have 2 in June) and graduations (we hopefully have 2 in June) and thus of new beginnings. I need to get a handle on this emotion thing or I will be bawling my way through the next 6 weeks.
I would like to share something really special that we experienced this weekend, and hopefully somebody out there is still reading.

Saturday Henry had his first Miracle League baseball game. I'm just about the last person you'd catch being all sentimental about a sporting event. But this program is one of the coolest things we've been involved in.

The league is for kids with all sorts of disabilities. Each child is matched up with a "buddy" who helps them play (to whatever degree he or she needs help). Every kid gets a hit and every hit gets on base. Every kid scores a run every time. The final score was 24-24, and something tells me it will be the same next week.

Each player has a nickname, and the announcer plays it up like a real ball game:

Up next for the Marlins is number 1, Hammerin' Henry. Henry hit a single his last time at bat, and has been working on some weight training in the off-season.

If you've been reading here about Henry for any length of time, you know that he's not much into physical activity or, well, anything done outside.

But this was different. Henry fielded just about every ball, with gusto. That's not to say that he actually caught any of them. But he ran and ran and didn't give up. (The kids in the light blue shirts are the buddies. Henry's is the girl in the pink cardigan.)

He was so proud of his two home runs. On the ride home he seemed very dazed- that was a lot of activity and a lot of new stuff to process. But he kept repeating "I did good!"

Also, we had "transitions" lenses put into Henry's glasses, so they turn to sunglasses outside. The sun has always seemed to really bother him, so maybe they are a contributing factor to his enjoyment of baseball. Plus, they make him look really cool.
Another cool aspect of the Miracle League for parents is that we just sit in the stands and watch and cheer. Just like regular proud parents. We chatted with the other grownups around us; parents of both players and buddies.



As a side note, but another contributing factor to my "emotions close to the surface", as we pulled in to the park where these games are held, I realized that I had been there before.
Henry had attended 2 birthday parties here when he was 3 or 4 (pre-diagnosis). Both for kids who were cared for by L also. Both parties went relatively badly- but one stands out in particular. I remember having to carry Henry screaming to the car halfway through the party. He wouldn't leave the gifts alone and of course could not be persuaded that they didn't belong to him.
I remember feeling so frustrated and alone and so sad for Henry because he was missing out on special peer activities.
5 years later, we've both come a long way. My expectations have undoubtedly changed. And Henry's abilities and understanding have brought him far. He listened and followed directions and tried something new that day with bravery and enthusiasm. Yes, the situation had modified rules and expectations. Yes, it was different from the league that other 2nd graders will play in. But it was a success. He did good.

just some recent pictures

Before:
(Not the most flattering picture of me, with that goofy headband in my hair, but I don't have too many photos of me and my boys, so I kinda like it)

After:

And a couple photos from my niece's first communion Sunday. If I could photoshop these two together I'd have one decent picture where everyone's looking at the camera:

(Well, OK. Not EVERYONE. Henry almost never looks at the camera...) Henry is holding a puzzle and Tommy is holding a Batman.