Tuesday, July 28, 2009

Roar! Shhh.

One of Quinn's favorite books is How Loud is a Lion. We read it A LOT. This morning, when he got up at his usual earlier-than-should-be-legal hour, I put him back in his crib with some books and told him that mommy and daddy needed some rest. We heard some babbling sounds, and then, about twenty minutes later, we heard a very cute and unmistakeable "ROAR!" and then "Shhhh!" - the end of How Loud is a Lion.

Sunday, July 26, 2009

Happy Birthday Sarah!

LSFX readers please wish Sarah, my lovely wife and LSFX co-author, a
most happy birthday! She is a super wife, super mommy, and deserves
much praise on her special day.

[I sent this from my iPhone, so please excuse any excessive brevity or
typographical errors.]
--Zachary Drake

Tuesday, July 21, 2009

July 22 is Fragile X Awareness Day

In honor of Fragile X Awareness Day, please ask your U.S. representative to co-sponsor House Resolution 611: Supporting the Goals and Ideals of Fragile X Awareness Day. This bill will strongly urge health professionals to learn about, test, for, and support individuals and families affected by Fragile X Syndrome. Readers of this blog probably don't need a reminder about how important this is. But for anyone happening upon our blog for the first time today, some quick notes. Fragile X Syndrome is the most common genetic cause of intellectual disability. About 1 in 3600 males and 1 in 4000 females are affected. So it is rare, but not that rare. Our son has a classic textbook case, yet we were told my numerous specialists that he was "fine/would grow out of it" and "showed no evidence of having a syndrome". After a stressful year involving expensive doctor visits, an MRI, a chromosomal analysis, metabolic function tests, and other evaluations, my son took a relatively simple $300 blood test that showed he had Fragile X Syndrome. Given how well his symptoms match the disorder, it is sad and surprising that it took so long to get a diagnosis. House Resolution 611 is a step in the right direction. Awareness is very much needed. Click here to take action. It takes just a minute.

Appetite for Destruction

Quinn's physical abilities seem to be growing by the second, and he has an appetite for destruction. On Thursday, within an hour of my coming home from work, he had dumped out the kitty litter, poured Kitty's water into her food bowl, spilling both water and wet food in the kitchen, and dragged potting soil from outside through the house. I know much of this is normal toddler parenting, but it is exhausting nonetheless!

Dressing him at times has also become a feat requiring strength, humor, and ingenuity. When he is not in the mood to get dressed, he pulls hair, writhes laughing maniacally on the floor, bites, and kicks. Saying "no" firmly and taking attention away (like a mini time out) only seems to bring on more giggles. Occasionally he'll have a tearful moment, only to break into writhing giggling again. I'm pretty sure he doesn't understand that these behaviors are not funny. Sometimes the only thing we can do is sing or make faces to distract him from his agenda of destruction so that he'll allow us to clothe him.

I don't think he puts on any of these performances at school, because they usually talk about how wonderful and angelic he is. I'm grateful for this, because we love his school and wouldn't want him kicked out. I really hope this is just a phase.

Sunday, July 12, 2009

Update: bits and pieces from the weekend

- We gave Quinn a haircut tonight. Last haircut was at least two months ago. Now I remember why we kept putting it off. We tried to make it fun. We set him up in a chair with a movie and chocolate chips. We sang, we said comforting things, we made silly faces. But Quinn was traumatized anyway, and let us know with his wounded look, sobs, and screams. Makes me want to let him grow dreads. But the haircut was much needed, and he looks pretty cute. I'll post a pic tomorrow.
- Today Quinn experienced two of his favorite things: trains and dogs. It seems he likes these things better from afar. He cried on the commuter train and got totally overwhelmed and anxious at the dog park.
- I'm trying to walk more. In honor of my upcoming birthday, my body seems to be storing extra pounds. I really don't enjoy exercise, though walking is okay. Anyway, I was wiped out last night, but just before sunset I convinced myself to put on my sneakers and get outside. I was greeted by an unusually warm night (nights here, even in summer, tend to be brisk), and three rainbows. I'm taking it as a sign that it's worth it to get out, even when I'm tired.
- Quinn blew bubbles for the first time in the bath tonight. It was awesome. He's been working on blowing in speech therapy. He was really proud of himself, but couldn't repeat the feat.
- Quinn is signing a lot (same few signs - more, help, open), but still not really talking. I think he might have said "mama" today. I'm still not sure though if he was babbling or if he really meant it. That's what I'd like him to give me for my birthday.
- I'm really p*@#%! that we need to go through a three-hour evaluation to get the "status two" designation (e.g. continuing services from the Regional Center for people over age 3, which will include case management, respite, and other stuff). Quinn has a file at least a foot high, and has been evaluated by people with enough degrees to start their own university.
- I wish kindly strangers would stop asking my basically non-verbal child questions. It's weird and awkward for all involved. I guess it's time to order these cards (scroll down).
- What are you all doing for Fragile X Awareness Day, July 22?

Thursday, July 2, 2009

A wonderful present

Last night I came home to a new laptop, with which I am writing this post! My old computer was slow, possibly virus ridden, and very old and being a desktop, not at all portable. I've been looking for a computer on and off for many months, but felt overwhelmed by the choices and expense. So coming home to a fast, thin, light awesome laptop with a picture of us on the desktop is like a dream come true. Thank you so much, my wonderful husband!

Life is good on the bus

Quinn's awesome school is a on a campus with lots of programs for folks with developmental disabilities. Every morning when we drop him off, vans are pulling in full of people going to day activities on the campus. As we've noted on this blog before, one thing Quinn has in common with many boy toddlers his age (we are always very happy to be "normal" - a way to bond with other parents) is his love of transportation vehicles. So when he sees the vans dropping people off, he is VERY excited.

The other day I was dropping him, which I don't usually get to do because I'm often off to work before his school begins at 9. But the other day I had the pleasure of doing the drop off. As soon as we got out of the car, one of these vans pulled up, and Quinn, absolutely delighted, made joyful utterances and started waving. On this particular day, all of the other people on the van, the adults with developmental disabilities, started waving, too.

For a moment, Quinn and these adults were looking very happy as they seemed to take one another in. And in that moment, I almost heard a voice (not really - don't worry no voice-hearing going on here) say, "Don't worry, Mom. Quinn is going to go to a campus like this one someday when he's big, and he will love it! He'll hang out with friends, swim, do art, and learn job skills. And he'll wave at cute little boys."

I have to admit, sometimes when I see the adults with developmental disabilities at this campus, I feel a pang of anxiety or grief, thinking, "Will Quinn be like that when he is grown-up?" And I know he will. I just do.

I still think he will be "like that". But for some reason on that day, I realized that is totally ok. I think he he will have an enriching, fun, happy life. It may not be the life I expected, but I think he will be absolutely fine with it, and I will be happy seeing him happy, riding the van to wherever he may be going.

The Roller Coaster Goes On

I'm feeling pretty good today, if somewhat jittery. Quinn went to sleep later last night, but still woke up at 5 am! Not fair! My cough is still here, but it doesn't hurt my pulled muscle as much. I'm still finding relatively small things kinda overwhelming.

I was very proud of the surprise I got for Sarah yesterday. I'll let her talk about it if she wants to.