Archive for September, 2010

The best day ever

So I was having a pretty bad day yesterday. Started out with Lu throwing her almost full pediasure chocolate drink with her meds in it onto the floor with a smash, splashing the milkshaky stuff all over her and Myffy and me just when I was about to put them into the car. I didn’t shout directly at her, but I made a bit of a stifled “Aaarrgh” sound. They both had to be bathed, hair had to be washed, clothes had to be rinsed out, new clothes had to be put on, hair brushed, shoes and socks back on, and on, and on.

Then just when I was fastening Myffy into her car seat, Lu made a break for it, squeezed out through the dog door, ran across the porch and out the gate I left open for the dog. I ran, grabbed her and lifted her back through the gate, but left my left heel within the gate swing for just a moment too long. Aaarrgh!!! Much louder this time. It closed and scraped the skin right off the back of my heel, soaking my sock with blood, wetting my shoe. I yelled so loud poor Lu looked really scared this time and started to cry. Then I got them both in the car, strapped into the car seats and went back to the house to get the rest of our stuff. I put Lu’s lunch box and back pack on top of the therapy box (this holds all the binders of data sheets, procedures, toys for procedures, etc.) along with one of the diaper bags and headed to the car. On the way I misstepped on a paving stone, twisted my ankle, collapsed to the ground and threw everything I was holding into the dust. It hurt. I yelled again. And mostly out of frustration, I teared up a bit. Both ankles hurt now. I didn’t know which way to limp. Does it really have to be this hard to leave the house in the morning?

I felt bad for yelling and scaring Lu. I hate it when I do something stupid like that. Her little face looked so frightened. When I dropped her off at school she started crying again. So far this year her drop offs haven’t been too bad. But this day she just didn’t want me to leave her. Myffy was in the stroller and started crying too. I hate leaving her when she’s so upset.

After school Nima came over for a couple of respite hours in the afternoon. I was trying to pay bills, balance checkbooks and upload videos. Lu didn’t like me being upstairs when she was down stairs. She was upset. It just wasn’t working. I came down after a bit, dressed her in her pink tutu swim suit and Nima filled up the kiddie pool in the back yard. Lu said she needed potty (awesome as we’re still working on potty training). I took her. She did. So I said good girl and sang her the potty song. And when we were done washing hands she held her arms out so I knelt down, gave her a big huge hug and said “I love you.”

I say this to Lu a lot. Sometimes she hugs me when I say it. Sometimes she puts her cheek out for a kiss. Sometimes she ignores it completely. The one thing she has never, ever done before is say it back. Yesterday she said it back. Loud and clear enough for Nima to hear it through the open door, Tallulah said “I love you.” My heart swelled up so big I thought it was going to burst.

I wasn’t sure if I would ever hear those words from Lu. It’s one of those things you read about autistic children, that they never say it, never express it, but here she was doing it, saying it, smiling! And I guess you could suggest that she might just have been echoing my words back to me (echolalia is a phase a lot of autistic kids go through as they become verbal), but I don’t really think so. She looked right at me and smiled. Like she knew what it meant. Or at least had an idea. And she didn’t have to say it. She’s not said it so many times before. But whatever the reason, it is what it is. My daughter said she loves me. Oh my little Lu, I love you too.

Myffy’s Milestones!

Being a second child myself I was determined that I would not let my second child’s milestones pass uncelebrated and her childhood pass undocumented. I had the best of intentions to photograph and video and write about and shower her with as much attention as I possibly could without completely abandoning the first child. Unfortunately my plans for raising Myffy, like my plans for raising Lu, have pretty much all been derailed by Lu’s autism. Even though Myffy is with me always, her childhood is being spent in therapies and appointments and strapped into her carseat as we go in between. The only pictures and video I ever manage to take of her are quick, on-the-fly and taken with my phone (the above wonderful picture was taken by my friend Tamlyn Corrs back in May). Yet inspite of all the ways that I feel like she’s being short changed in this deal, Myffy is absolutely thriving.

She is growing in size and strength and skills in a way that seems amazing to me. The only other child I’ve ever watched develop step by step is Lu, and as we now know that wasn’t quite typical development. I guess that knowing Myffy has a 1 in 5 chance of being autistic because she has an autistic sibling (as opposed to the 1 in 110 chance every other child has) I’m watching her development like a hawk. After watching Lu have to painstaking learn every little thing step by step in discrete trials rather than absorbing it from her environment the way typical children do, I actually feel astounded that any of us are able to learn all the things we normally do. The development of little brains is amazing.

And Myffy’s little brian is doing amazing things. Right now she’s approximating Mama, Dada, Nigh-nigh, up, down, more, bath and she’s doing the signs for nurse and more. Every now and then during Lu’s therapy Myff will try to say a word Lu is working on then we all clap and cheer for her and she does the hip-hip-hooray arms! She is a speed crawlyer, a sturdy stander and a competent cruiser. She’s getting really good at comandeering people’s fingers to help her walk around. And her own unique little personality is bursting out in so many ways. She’s getting really opinionated about things, and loud and demanding. And it is awesome.

Yesterday was Myffy’s 1st Birthday Party. It was soooo fun! Myffy was so excited to have so many people around the house all day that she absolutely refused to take a nap and consequently fell asleep during the BBQ, right before cake time, and because we had so many little ones over who needed to head home for their own naps and evening routines, we actually cut the cake without her. Which meant that she missed seeing her name misspelled on her cake. I had called it in to Baskin Robbins and repeated the inscription over and over “M as in Mike, Y as in Yankee, F as in Fred, F as in Fred, Y as in Yankee. Somehow it came out “Happy 1st Birthday! Go Myssy Go!” I’m sure it won’t be the last time her name is misspelled. But I will make sure to either check the cake myself or remind Stew to check the cake when he picks it up from now on. But Myffers didn’t mind. She thought it tasted great. And looked super cute eating it. Thanks to everyone who came over and helped out!

Go Myffy Go!!!

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