Thursday, January 22, 2009

Maybe we're not just whiners

Sometimes we worry we're just whiners, that raising Quinn is no harder than raising any other kid. But in the past week, our whining has been validated.

First, we got told by our Regional Center social worker that we likely qualify for respite care, more than the minimum amount. This determination was based on an email I sent her in which I described some of Quinn's more challenging behaviors, and the email wasn't that long and I took care not to exaggerate.

Then, on inauguration day, we attended a wonderful breakfast at our church with Quinn and Zac's mother. Quinn had three loving adults looking after him, but we all had to work pretty hard to keep the tantrums at bay and prevent mishaps with, well, everything, from hot cups of coffee to furniture-turned-jungle-gym to other people's belongings. And we had plenty of books and toys for him, but nothing was sufficiently calming or engrossing, so the three of us took turns walking him around in the stroller (missing parts of the ceremony) or letting him play in the entrance area of the church, where there is a fountain he attempts to hurl himself into, an activity he enjoys enormously. Meanwhile, many other children, both younger and older than Quinn, sat quietly in their parents' laps watching the ceremony, or occasionally needed some walking around the room, but in a relatively quiet, safe, and organized fashion.

None of this is to say that Quinn is not delighful, magical, and the apple of our eye. We love him like crazy. But he is indeed a lot of work.


Zachary Drake said...

It's strange not to have a regularly developing child to compare Quinn to. Normal kids seem like freakishly intelligent and well-behaved super-beings to us. But sometimes I do find myself wondering if I'm indulging in too much self-pity, using Quinn's fragile X syndrome as a cover for my own laziness.

It is nice to have external recognition of one's difficult situation. Being a parent of a special needs child isn't a challenge that gets a lot of air time in our culture. How about we take 2% of the cultural material devoted to exploring the romantic challenges faced by young, attractive people and replace it with material about the challenges faced by parents of special needs children!

But who would go see a movie in which Scarlett Johansson does nothing but change dirty diapers and try to get her retarded son to use PECS and not pull down the Christmas tree lights? I don't know if even I would see that movie.

I guess that's why we have this blog: because Hollywood isn't going to tell our stories anytime soon.

Vicki Davis said...

I am so happy to hear you will qualify for Respite Care! You deserve it.

TheXMom said...

Having a special needs child is definitely a lot of work... My friends are always telling me "oh it can't be that bad.. " Come on over to The X Mom and pick up your Honest Scrap Award.

acrosstheuniverse said...

Take time for self-pity, and then jump back in the game. It's okay to feel that very few understand....because very few do. But I do.

We don't hang around with many families with "normal" kids Nick's age, and I'm glad, because it helps me see Nick as Nick and nobody else. His cousin is the same age, and when I see his cousin at family gatherings it stings sometimes...but only for a minute. I love them both for exactly who they are.

Anonymous said...

Hallelujah for justification!

the other lion said...

Respite is AMAZING. Use every single hour. EVERY ONE. Even if you just sit at the library.

You are not a whiner. And typical kids do seem a bit freakish to me, too.

Bjetsey said...

I'm glad that you guys qualify for respite care - I'm sure that you will take full advantage of it! I'm always impressed by how well you do take care of yourselves. And I've never for a minute though you guys were whiners, fwiw. Your honesty and clarity is really valuable.

Vicki Davis said...

You have been given the Honest Scrap Award. Check out the details @ Holly Daze.

Kristiem10 said...

I know what you mean. We have two boys and both have Fragile X, so we don't have typical kids to comare them to. Besides other people's whiz kids, that is. At least they seem brilliant to us.

Good for you for qualifying for respite. I wish we had it.

Anonymous said...

I'm sure he is a lot of work. And I'm sure he's totally worth it, but I'm so glad for you that you'll be getting some respite. Sometimes a breather like that can be life-saving, I'm sure.

And it does help to have a professional validate our concerns, doesn' it?