Monday, January 9, 2012

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!

1 comment:

Teddy said...

If every kid had awesome parents like you guys! This world would be such a different place.

Sending you love from our village to yours!