The boys missed us. Upsets, aggressions, and behaviors are up, as our therapists would report from their careful data! But hugs and cuddles are up, too!
I think it will take awhile to ponder and process everything I learned at the conference. A huge burst of information taken in over a period of four long days! Thankfully I took notes and for the most part can read my own scribble.
One of the sessions I went to struck me with a bit of panic. The speaker commented that when our children are small we are so concerned with language and sensory issues, we make fine motor skills a lower priority. Eeeeek, that's me! We should actually have them use a pen/pencil/crayon of some sort every day. Write, color, draw, scribble, whatever, just so long as they are learning how to hold a writing utensil properly. She said many of us think (yep, including me) that our kids can just use keyboards, they won't have to learn to write by hand. The truth is, holding a pencil and having the control to make a line on a paper purposefully is an important developmental skill. A skill they should be working on every single day.
In this same session there was a video of a boy who looked exactly my boys' age, being shown flashcards with words and pictures on them; for example, it would say "SUN" and then there'd be a picture of the sun. That boy knew every word.
Then the cards were flipped over and on the opposite side there was just the word -- no pictures. Well, that boy became agitated and downright angry, trying to grab the cards out of the therapist's hands. She held firm and eventually he said the words as she flipped through the cards. He still knew each of those words without seeing the picture -- he just wanted to see the picture. He continued to be annoyed that she wouldn't turn the cards over, but he read through the whole stack.
Here's a statistic I hadn't heard before -- if you know 200 words by sight, you can read. Simple, first-reader books, obviously, but you can read! I thought, I bet AJ is well on his way to knowing 200 words.
I searched online a bit but couldn't find any free flashcards that were exactly what I wanted, so I'm making my own in MS Publisher. Now, I just have to score a laminating machine.....
The other session I found helpful was the one on talking to your children's fellow classmates at school about Fragile X. It's very important to me that my kids find acceptance and even friendship from their peers. I'm going to talk to Zack & AJ's kindergarten class about them, and I need to be exceptionally prepared. Before I go in there I'm going to know almost word for word what I'm going to say. And I need to be prepared for tough questions. Like, why does Zack bite?
Holly Roos gave such great pointers and sample things to say. You begin by talking about what kinds of toys the boys like that other kids like, too. Like firetrucks. Who likes playing with a firetruck? All the kids, boys at least, will say they like that. Then I'll talk about how some firetrucks have lights and sirens and do all kinds of things like that. Some trucks don't have the lights and sirens, some of them require that YOU make the sirens sounds while you play with it. But those are still fun to play with, right?
Here is where I hope the kids say "YES!" Because then I compare Zack & AJ and other kids with autism to the trucks that don't make noises or have lights. You have to play with them a different way, because they don't work like the others.
Another really eye-opening session I attended was about participating in clinical trials. They reviewed the different phases, what happens in each, how long they might last, and what they look for in test participants. They discussed placebo medications, how they work, and why it's just as important to the study for some kids to be on the placebo as to be on the actual trial drug.
I thought it was interesting that they do sometimes prefer to test the more severely affected patients, in hopes they'll see the most dramatic results from those patients. At the same time, the more severely affected patients can't report results as accurately, and the study relies more on the caregivers to report results. It had not even occurred to me that there were patients participating in studies who can report personally how they are doing!
Finally, it was pointed out that we should consider carefully why we are participating in the study. Is our motivation simply to help our children, or do we honestly want to advance the research? Apparently there are occasions where a study participant's parent will pull them from one study in order to participate in another study they think might offer more dramatic help for their child. They understand why parents might do that, but it obviously hurts the process and prolongs the length of an already years-long drug testing trials.
Fragile X – 6th Form and Bus Passes
1 week ago