Monday, March 30, 2009

When the house is ours again

One of my favorite moments at night is when I don't have to put the lock back on the under-the-sink cabinet where our garbage and recycling reside. That means Quinn is in bed (or on his way under his mommy's care) and we may stretch our independent adult wings, if only for a little while.

Friday, March 27, 2009

Time for a transition

So we had our first meeting with the school district folks today. We're not really looking forward to this transition since we feel like we're finally settling into a nice routine, we like all of Quinn's providers, and he is doing really well. But he is 2.5, and so The Transition Must Go On.

The school district folks were nice enough, but it was pretty weird how they kept talking about how Quinn needed to be "assessed" to determine his "needs" before we could even begin to discuss service options. Haven't enough public funds been spent on assessments for our child? We really know quite a lot about his "needs" and have stacks of paper to prove how knowledgeable we are.

Part of what's frustrating is that because Quinn's issues are primarily developmental, not physical (if you ignore the absence of FMR1 protein, hypotonia, macrocephaly, and increased risk for seizures and mitral valve prolapse), people always feel they need to "assess" for themselves. If Quinn had no legs, people would simply say, "Of course he needs some help getting around." But because he has no/little speech and a host of other less visible issues, he always needs to be "assessed". Even though to me not being able to say "mama" at 2.5 years old is as obvious a sign of disability as missing legs. And I'm not minimizing the difficulties of having missing limbs. I just envy the speed and objectivity with which missing limbs can be "assessed".

The hilarious part is that at the end of all these assessments, the conclusion is always the same: "Your child is really delayed." No way! For real?

As I said, the people were very nice. And I get how bureaucracy works. But it really is a PITA and I feel entitled to whine just a little.

Sunday, March 22, 2009

Oh S@#*!

[Written as a screenplay]

Sarah and Zac finish a lovely dinner of broccoli soup, potatoes, and apple walnut salad while Quinn, in the next room, peacefully watches a Baby Einstein film.

Zac: Wonderful soup! I wonder if it was better since we got the broccoli at the Farmer's Market yesterday.

Sarah: Probably. I loved the salad you made.

Zac: What a nice dinner.

Sarah: Yeah. A nice beginning to a relaxing Sunday evening.

The tired, but happy couple look at one another sweetly. From other room: Sound of something tearing.

Sarah: I'll go check on him.

Goes to next room. Sees that Quinn has torn his Dr. Suess book. Again.

Oh, Quinn! Poor Kitty O'Sullivan Krauss! I thought you liked that page!

Suddenly becomes aware of a foul odor. Sniffs.

What's that?

Sees poop laden diaper on floor. Realizes Quinn's legs and belly are covered in s@#*.

Ah, yes, a nice beginning to a relaxing Sunday evening...

Thursday, March 19, 2009

Quinn and Kitty

It's really too bad I don't have a picture to go with this one, but lately Quinn has been really into Kitty. He puts his face right next to hers when she is eating (which Kitty just loves - not!) and makes excited Quinnlike sounds: "UhhhhUhhhh!!!!!" The other day he offered Kitty his pacifier, which she graciously declined. Then he offered it to me. I also declined. Quinn also tries to pet Kitty. I think he remembers my saying "gentle" about 5,000 times a day, but he gets so excited "UhhhhUhhhhh!!!!" that he can't quite be gentle, so he puts his hand on her at first tentatively, and then roughly, and then Kitty runs away. All of these antics are rather exciting because up until recently, Quinn didn't pay any attention to Kitty at all. It's like he suddenly gets it that a living animal walks among us, and he is overjoyed at the fact.

Saturday, March 7, 2009


Zac and I run a casual group for parents of kids with special needs who live in our area. Today, with the nicer weather, we were able to move our group to a small toddler park, and it was wonderful to see our group "take over" the park temporarily. I like the group not only because it's terrific to meet other parents of children with special needs, but also because I like seeing children with special needs just hanging out together in public kid spaces, having fun, laughing, playing. Many thanks to the parents and kids who were able to come today. And to those who weren't able to come - we missed you and hope to see you next month!

Thursday, March 5, 2009

The conspiracy

There seems to be a conspiracy in the Fragile X care community to keep
parents of Fragile X children from meeting adults with Fragile X. I
haven't met a single one so far. Is it just too soul-crushingly awful
for our tender sensibilities or something? We keep getting this BS
schpiel about how "everyone is different" and "you can't predict what
your child will be like". This is true to an extent, of course, but
I'm convinced that someone somewhere decided that new parents of
Fragile X kids should be kept in the dark about what their children
might turn out like (barring a cure or dramatic improvement in
treatment). Of course, I haven't actually gone and sought out a
Fragile X adult on my own, so maybe I'm part of the conspiracy myself.
I do find myself wondering whenever I see a mentally retarded adult
"does that person have Fragile X?", but I've never actually asked. My
ettiquette script repository does not include an item covering this

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