Archive for January, 2012

Relaunch of the Babyracer Etsy Store

Back in 2008 I first started this blog as a craft blog connected with my babyracer etsy store. I was trying to adjust to life staying at home with an infant out on our ranch where I was very isolated. I mean really isolated. And I’d always loved doing crafts, so I started crafting, posting things on etsy, and doing the blog along side. The focus of the blog shifted when Lu was diagnosed and I didn’t feel like I could spend time on crafting. But now I’ve decided to reopen my etsy store to try to help raise money to get Tallulah’s Autism Service Dog. 
My kids have a lot of cute clothes and they seem to grow out of them so very quickly. I saved all of Lu’s clothes because we knew we wanted at least one more baby, and even though we put aside thoughts of a third child after Lu’s diagnosis, I still saved all of Myffy’s baby clothes too.
Which is a good thing because I’ve decided to make my new project upcycling all of the best, cutest and least worn clothes into fun new pieces for other kids to enjoy. I’m trying to do it with only the craft supplies and the clothes that I already have so I won’t be putting any money into it that could be going to the dog, and any money we get out of it will go to the dog. And we’ll all be saving the planet a tiny bit by reusing clothes that still have a lot of good wear in them.
I wouldn’t have imagined that I would be able to find the time to do this project, but the upside of Lu’s recent incessant sleeplessness has been that I have had this strange time in the middle of the night during which I can’t really do anything that requires real thought (like my taxes say) but I have found a real meditative solace in sitting beside her stitching while she colors and plays in the dead of night. The pictures shown are some of the projects from these nights.
It’s kind of a slow process day by day, but I hope you will check out the store and come back again from time to time to see what else I have been able to get in there. I’ll try to keep putting more and more items in as I find the time and come up with new little designs. Everything that has been upcycled is in the upcycled section. Thanks for looking and thank you for your support!

Disneyland and the Dog

Stew finished branding the short-age calves early today and picked Lu up from school. When he got home he called out to me and seemed so sad as I came down the stairs from my office. He told me that he got to the classroom a little early and that the kids were still in circle time. All of the kids except for Lu. (She was at the back of the classroom with her aide.) And they were talking about Disneyland. He teared up a little. I asked him what was wrong and he told me that he hadn’t realized until today Lu was the only kid in the class who couldn’t talk.

I had to stop and think for a minute. I tend to not think of Lu as being completely non-verbal because she has a certain set of words that she can and does say, but the idea of an in-depth conversation about the coolest aspects of Disneyland is definitely way beyond her capabilities. She doesn’t even know what Disneyland is. Requesting toys, movies, bath and bed are the basic functional extent of her vocab. But I knew what Stew meant. I’ve had those moments myself. Lots of them over the past couple of years. Sometimes we both get so caught up in her world, in how hard she works and how much she does and how far she has come that it’s a shock to see what just naturally happens with so many other children her age. I didn’t want to say there-there and pat him on the shoulder, or remind him of how far she has come or any of the other things that popped into my mind at first. Instead I decided just to talk about Disneyland.

When I was a kid I loved Disneyland. No, wait, I LOVED Disneyland. Especially Mr. Toad’s Wild Ride. The first time I went on that I really thought that I was driving the car and crashing into everything. It was definitely a magical place for the 5 year old me. But the idea of taking our kids to Disneyland has been beyond impossible. Until now…

Why you might ask? Because of Booth.

Booth is the fantastic and amazing big black German Shepherd that we met for Lu through Arizona Goldens. Arizona Goldens trains and places service dogs. Seeing-eye dogs, hearing dogs, wheelchair assistance dogs, and (most importantly for us) Autism Service dogs. I fully intend to write a post completely dedicated to him and our fundraising efforts to get him for Lu next, maybe even tomorrow or the next day, with photos and everything, but for now let it suffice to say that the possibility of his presence in Lu’s life and all of our lives makes the idea of traveling somewhere actually seem possible again.

Not long ago Lu hid in the house. This is something she does with some regularity. But this time it was different. It was just me home with the girls, Stew had to stay the night out on the ranch. Lu asked for some cookies so we started to bake. She got bored, wandered off, and as I put the cookie tray into the oven I realized it was quiet. FAR TOO QUIET. Myffy was playing nicely with her Toy Story dolls in the livingroom, and I thought that Lu had headed that way, but where was she now? 10 minutes of looking calling, shouting, yelling, screaming, pleading, begging commenced. I couldn’t find her. I just couldn’t find her. I looked everywhere she normally liked to hide. I checked all of the closets, bathrooms, bedrooms, in cupboards, under sinks, behind toilets, everywhere! I checked and rechecked all of the doors and windows. All locked. She couldn’t have gotten out and locked them behind her. She had to still be somewhere in the house. But I was stumped. What if she found a way to get into the heating ducts? Or some crawlspace I didn’t know about? We only moved into the house in October. Maybe there was something I didn’t know. I started to think about what I would say to the police when I called them and then I heard it, a thump on the bedroom wall. She had to be in the walk-in closet. I’d already looked in there several times, but she was smart and climbed in behind my shoes in the section behind the door swing. The only way I could see her was to close the door and get down onto the floor to look behind the shoes. And there she was, curled up behind my warm wooly slippers.

This happened at home, in a place where she was safe. But what if we had been at Safeway or Target or Disneyland and someone walked between us breaking the grip of our hands? What if she managed to get out of sight for even a second because someone tripped and fell or my attention was momentarily diverted by Myffy falling over or something? What if she hid in a place that was so open and unsafe that I could look for days and never find her? The thought of even trying to navigate an airport with her feeding tube and potty issues (she does great at home, but strange toilets can be scary- I have to always carry her diamond printed princess seat with us for her to ever go in a new toilet) has been beyond us for so long now. But we started talking about it. About bringing the dog. And a respite worker if one of the girls who works with her would want to come. We could stay in the hotel right there at Disneyland so we could leave to go do her feeds and still go back afterwards to see more stuff. And the dog is trained to be tethered to the child. They could be connected  to each other so that she could not get away from him and no one could separate them. If we had the respite worker come too, just to help with hand-offs and potty sits and diaper changes for Myffy and getting meals and everything, we could probably make it work. There was suddenly a very small light at the end of a very long tunnel.

I tried to imagine it from Lu’s perspective. About half of her world is tied up in her movies. All of her longest verbal phrases at this point are echolalia from the scripts of her favorite movies. What would it be like for her to meet some of her favorite characters in person? To get to touch them, hug them, hang out with them for awhile? I have heard that Disneyland is great about giving autism passes so that she wouldn’t have to wait in line. Not that she would be tall enough for any of the rides. But still, just the place would probably be so amazingly magical to her. And if she tried to jump off of the “It’s a Small World” boat because the water looks so inviting, I’m sure that between Booth and us and the respite worker, we could stop that catastrophe from happening. We could keep her in the boat and get to the end of the ride. And if she gets too tired or overwhelmed and needs a break, we could go back to the hotel for awhile. Yeah, I really think we might be able to make this work!

As we went over all of this Stew brought up the fact that Adam Ant is playing in Anaheim, CA on our wedding anniversary, Oct 20, 2012. I’m not sure that we will have raised all of the funds for the new dog by then ($15,000 for the dog and $3,000 for the two weeks of bootcamp to train us and all of the Hab and Respite workers to become handlers for him). Or that we or Lu will all be ready by then. But it gives us something to shoot for. Something to look forward to finally. A fun time for the kids and a bit of fun and crazy for Mom and Dad too if we can swing it. It’s worth a try at least.

If you are interested in helping us raise the funds we need to get Booth for Lula, please go to:

http://www.youcaring.com/fundraiser_details?fundraiser_id=428&url=helptallulahgetanautismservicedog

Any and all help is greatly appreciated. Please repost or send to anyone you think might want to help. And stay tuned for more about Booth! I have so much to say about this amazing and wonderful dog!

Thank you!

Credit where credit is due

I wanted to write a quick post to give some credit where credit is due. I realize in the last post about wanting to get Lu an autism dog I may have sounded disappointed about her progress. And while I do wish that we were able to have conversations right now and that I could communicate things to her like the danger of moving cars and deep swimming pools and strangers and all of the things that give me cause to worry about her safety right now, I still have to look back at where we were two years ago and realize just how far she has come.

Two years ago this month was when Stew and I were finally forced to confront the fact that something was going horribly wrong with Tallulah’s development and had been for nearly a year. We could no longer tell ourselves that all kids develop differently and that talking late wasn’t such a big deal, plenty of people talk late and are ok and that everything would get better when the new baby came. We could no longer let everyone else tell us those things either. We could not delude ourselves anymore. We asked our pediatrician for a referral to the Arizona Early Intervention Program fearing that she may have been going deaf, but with no idea exactly what was going to happen next.

Two years ago Lu made no eye contact, said only 4 or 5 words but only when she felt like it, never upon demand, she did not respond to her own name, she did not seem to hear us when we spoke, she spun, she flapped, she had tantrums daily, sometimes hourly, she actively tried to hurt her sister, sometimes herself, sometimes us, and seemed to be completely out of our reach.

Fast forward to today and I can see a little girl who a generation or two ago probably would have been recommended for institutionalization and probably would have gone through life mute, has now acquired so many of the skills she lost and has gone on to gain so many more. She can now get her most basic needs met through one word requests like potty, hungry, dress, water, horse, car, etc., and can be prompted to put many many words into short sentences now. She repeats relatively long phrases from films and even if she does not yet fully understand what she is saying, I firmly believe that at some point she will. And often she says these movie phrases within a context that kind of makes sense. Like shouting “Ow! Why would you do that?” from How to Train Your Dragon at the top of her lungs when we bring her into the waiting area at the hospital. I can tell you we got plenty of looks for that one. She also plays much more appropriately with her toys now and at times even interacts a little with the other kids at school, and sometimes even with Myffy. She has started to show more interest in other people, including Myffy, Stew and me and a few times has even done things like come up and pat Myffy when she was crying and say “it’s ok, it’s ok” which is what I often say to her when she is crying while I pat her. The other day Stew pretended to cry when something happened and Lu came right up to him and put her hand on him and said “don’t cry” which was pretty amazing. Her tantrums have reduced in number and intensity. Her repetitive behaviors and violence had dramatically decreased. In short she has progressed greatly in every area that has been targeted by her many therapies.

I could go on and on with all of the amazing things that she has learned to do, but it would take a long time and the point of this post is to give some credit to her amazing BCBA, therapists, tutors, Habilitation workers and Respite workers who do so much to help both our girls and us. I won’t name them individually because I didn’t ask permission to publish all of their names, but they are amazing. Every week day at 7am one of the tutors arrives to do one-on-one ABA therapy with Lu. On weekends they arrive at 8am. Lu does therapy 7 days a week, 5 to 5 and a half hours a day, plus preschool three days a week for 2 and a half hours a day with one of the home program tutors as her one-on-one aide in the classroom, plus speech and OT each one hour a day, one day a week. All of this therapy and school adds up to a total of 46.5 hours of per week for Lu (more than an adult’s full time job). And another 15 hours of one-on-one ABA for Myffy plus her hour of speech each week and her 15 hours or preschool each week. Needless to say, a village is helping to raise both of my kids. And without this village who knows where we would be, the kids, our family, us parents, all of our sanity. We owe so much of what we have today to all of these wonderful people who pour in so much time and energy and enthusiasm and love to the work they do with our kids. Thank you all!