Quinn in the ball pit

Quinn loves these, as you can see. This is the free ballpit in the Emeryville Public Market. We'd been before, but Holly's Mom reminded us that it was there with her recent blog post, so we went for a visit yesterday. Lots of fun.

You don't ask, you don't get

This is one of my father's favorite sayings. (And though my mother doesn't say it, she follows it, too.) I scoff sometimes when he invokes it if what's at stake seems trivial to me (I'm not asking for the $5 anyone owes me if it the time it will take me to get it is worth more to me than the cash.) But last week, what was at stake was significant, and I was glad to have had this mantra drilled into my head throughout my childhood.

As LSFX readers may recall, we had a great IEP in which we were offered everything we wanted: an intensive, specialized half-day preschool program, PT, OT, ST, etc. However, we are moving very soon (the house is almost done - more on that in another post!), and we had this IEP in our current school district, which is in the same SELPA as our new school district, so everything is supposed to transfer pretty smoothly.

However, when I called the new school district a couple of weeks ago to let them know we were on our way and find out about the preschool options, I was told that "all that was available" was a 2.5-hour per day general special education preschool. I was miffed, but wasn't sure what I could do.

I started to investigate our options - private school, inter-district transfer, etc. Then I decided to call the new school district back and politely nudge just a bit more:

I'm a little concerned that the preschool program we discussed last time we spoke would not be appropriate for my son. I'm considering private preschool and some other options. Could we move up our scheduled meeting to discuss the options?

We don't know even know what your son's needs and goals are.

Yes, we do, we have an IEP and a half-day, intensive program is what we signed and agreed to.

Well, actually, we do have a half-day intensive, specialized preschool program. Let's meet a week earlier and you can visit it at that time to see if it would be a good fit.

That would be great, thanks! Quinn's been doing so well in his current intensive half-day early intervention program, I just want to make sure he continues to progress.

!!!!

The first time I spoke with this person, this second option was never brought up. Who knows if Quinn will end up going to this program (though it sounds good), but I am much relieved, and reminded how powerful it can be simply to ask. You don't ask, you don't get.

Duchess: The Cutest Dog

This is Duchess, my parents' cute little Bichon. Please vote for her in the "cutest dog" competition. It's not just for vanity - the winners get cash!

Go Quinn!

So, back in April, I posted about how I was "grateful and a little depressed". Grateful for the fabulous new school we enrolled Quinn in, and depressed about the evaluation recently completed by that school, showing, among other depressing things, that Quinn's cognitive level was only around 8 months old. I just got a new eval today, and all I can say is GO QUINN! And GO EARLY INTERVENTION TEAM! This new one shows Quinn's cognitive level as 18 months. What a dramatic difference. We've noticed it at home, but of course hadn't put a developmental age on it. I am really proud of my little superstar and all the work he's done. The report notes what a good student he is, and how much he loves to be praised for a job well done.

It looks like language is still lagging behind, at 10 months, but based on these results, I feel more confident that he will continue to progress...as long as we can keep him in an educational setting that suits him. That's a story for another post. Despite our terrific IEP process, we're facing some hurdles with finding an appropriate pre-school program for our little man.

One Year After the Diagnosis

It's been about one year since we learned that Quinn has Fragile X Syndrome. It feels like we've lived a lifetime since the day we got that call. I feel proud that we've made it with our sanity (mostly) intact. We both have a few new wrinkles and some battle scars, but we've passed through what might arguably be the most challenging phase of this journey. Quinn's diagnosis has opened up unexpected opportunities. To love, unconditionally, an adorable, happy little person. To see the delight on his face when he uses his hard-earned pointing abilities to ask for things and to show us doggies and trucks. To appreciate the miracle of human development. To meet (in real life and online) strong, smart, funny, wise, patient, inspiring people. To revisit high school genetics and biology lessons. To learn a new vocabulary. To reflect on our values. To experience deep gratitude for the people who have supported us. To join the movement for increased access to resources and opportunities for people with fragile x and other disabilities. To feel strong as a family, as a couple, and as individuals. We are probably not done grieving, but it's good to remember that we're still here, laughing, crying, loving, and being.