Wednesday, September 15, 2010

Walking for Autism Speaks

Ok, so I know I said I'd be posting whenever I find the time and I haven't been posting at all, but the truth is that I really have had very little time to spare. A quick recap of the past few months: therapy, appointments, driving to and from therapy and appointments, getting trained to do therapy, interviewing other people to train for therapy, trying to find respite workers, negotiating with the school district for aides and a PO for our therapist to oversee the in-school program, changing hab and respite providers, looking for more respite workers, meetings with DDD and CFSS, videoing therapy, uploading videos of therapy, talking to tech support about uploading videos... I should probably stop there. I know it sounds like I'm complaining, and maybe I am just a little, but I realize all the time that while I'm working hard, Lu is working even harder. She is such a little trooper and has so little unstructured time for a 3 year old.

But with a little bit of time that I know we'll find somewhere the fam and I have decided to do the Walk Now for Autism Speaks. I've got a fundraising page at

If you're able to help out please donate there or I have a tab on my facebook page too. We all really appreciate any support you can give. This money will not be impacting Tallulah's life directly at the moment, but it does go to research for the cause and cure for autism.

I've heard a lot of different opinions about using the term "cure" in reference to autism because I know a lot of people on the high functioning side of the spectrum do not like the idea of being cured, however for those on the lower end of the spectrum, particularly those who are non-verbal and require constant care, the word cure does not sound like such a terrible thing. Even if the research just turns up newer and better ways to get an earlier diagnosis this will help countless children get proper early intervention, earlier than before which can completely change the course of their lives. So whatever the terminology and whatever the politics, more research needs to be done, and your donations will help.

On a personal note, after six months of intensive (and I mean INTENSIVE, close to 40 hours a week of grueling, drills in Discrete Trial Training ABA and hours and hours Pivotal Response Teaching) therapy Tallulah has started school! She is in an integrated preschool program at Cromer Elementary School and her lovely new teacher is Mrs. Kylie Good.

I was excited and really scared about her starting school. What would it be like for her? Would she like the other kids? Would they like her? Would she even notice they were there? She's come so far in the last six months with all kinds of things, like labeling, IDing, learning to request things she wants, following simple one step directions, and so many other things. And it is a half special needs preschool. I felt pretty sure her newly acquired skill set would land her somewhere in the middle of the special needs group anyway. At least that's what I thought.

I'll be honest, the first week of school was rough. Lu's full time one-on-one aide did not get back from Argentina in time to start school with her so I went with her as her aide for the first week. At the end of the first day I managed to very calmly walk Lu out of the school and through the parking lot to the car where I fastened her into her car seat, got in, started the car, and then broke down and cried quietly while she watched the Fox and the Hound in the back seat. I thought "this isn't going to work" and "she's just not ready". I felt that hard rock that seems to represent her autism form again in my chest making it hard to breathe. Breathe. Swallow. Breathe.

I know that I should never compare her to any other kids anywhere, let alone in her class, half of whom are typical peers, but I just couldn't help it. All the other kids were speaking for a start and speaking in sentences too. Talking and learning about the days of the week, the months of the year, and the weather outside, all things that Lu has not concept of yet. The other children followed directions. Sat quietly when told to wait or stood quietly when put in a line. They were able to tell the teacher their favorite food and color. Lu knows the names of some foods, and she knows the names of some colors, but the word 'favorite' doesn't mean anything to her right now and she won't name a food or color without seeing at least a picture of it. No other child had a tantrum all day. Lu had 11. I won't go into it all, but it was rough. Really rough. But the second day came. It was better. Then the third. And by the third day I started to have hope.

The next week her aide went with her. I did too the first day, but then slipped out the next day. And the next. And this week her therapist Kristen Gaisford came back from Nevada to check up on Lu's school program and made several small but very important modifications. She showed the aide and the teacher how to modify the materials and the language so that Lu could participate in learning something about what the other kids were learning, but at her own level and her own speed. She started to succeed. She enjoyed it. And now I really think that school is going to help. Especially the social aspect of it. I feel like her ABA therapy can teach her a lot of skills, but being one-on-one with an adult, it can't teach her to be interested in other kids. It can't teach her to want to make friends or to make one. Oh please let her make one. Maybe not right away, but please some day.

Today was picture day at school. I admit it, I fussed her. I french-braided the front of her hair (something that would have been impossible just a few months ago), put the back in pig tails and put her in a really pretty dress. She looked so cute. I'm excited to see how they turn out. I put the last really cute photo I have of her at the top of this post. You can't see it but I was tickling her on the floor while a friend took the shot to try to get her both smiling and looking at the camera. She doesn't really like cameras, but I really want pictures of her. Sometimes secretly tickling while the picture being taken is the only way. But like other things, this too seems to be getting better.

She's working so hard. She's doing so well. I love her so much.

We'll be doing the Walk Now for Autism Speaks on Halloween morning in Phoenix. I think I'll go ahead and get costumes the girls can do the walk in. Hopefully they will like dressing up. We didn't really do Halloween last year because Myffy had just been born, and the year before I dressed Lu up as a pumpkin but the costume was itchy and she didn't really like it or wear it very long. This is probably the first year she will remember. I wonder what kind of costume she would like. This is the kind of question I can't wait for her to be able to answer. Some day I will ask her "What do you want to be for Halloween" and she will look me right in the eye and say "a princess" or "a cowgirl" or "Buzz Lightyear" or something. And it will be great. It will be so great!

Thank you so much for your support.
Jen, Stew, Myffy and Lu


Teddy said...

I love this post; I cried. What a lucky girl to have such great parents!

nommi said...

ditto what teddy said. jen, your courage and stew's (and lu's) is exemplary. what commitment and love! we love you guys. we'll make a donation to the walk for sure. -nommi, mike and theo