Thursday, December 31, 2015

Chelsea's Story

This blog is written for the purpose of (hopefully) informing people about SATB2-Associated Syndrome, Childhood Apraxia of Speech/ Global Apraxia, and seizures as we try to figure this out ourselves! My daughter has these disorders, and this is our journey to find her voice.

Chelsea at age 4 1/2
This is Chelsea’s story/ milestones up to present: At birth, she seemed totally normal to me, just a little small. We had some difficulty with feeding; she struggled to latch and would frequently gag on the milk, but I discounted it, thinking that this was normal- everyone said that they had trouble with feeding their baby at first anyway. I didn’t think too much of it when she spit up either, since it was supposed to be “normal”. Even though she would spit up violently through her nose and mouth, I would suction it out and continue with learning how to be a first time mom.

Chelsea hit all of her milestones late. She didn’t smile for nearly 2 months, batted at toys around 7-8 months, and even at 10 months- 1 year old, couldn’t sit independently or crawl. It was about then that my husband and I sought out an evaluation from early intervention. Guilty confession: I almost expected them to come and tell me that I was over-reacting, that Chelsea was perfect and I had no reason to worry. But after the evaluation, they began her with physical therapy every other week, and had a developmental specialist visit once a month also.

We hit physical therapy with determination. I was a young, stay at home, first time mom, and I was resolved to help my sweet daughter as much as I could, and I had the time and energy. We did home practice 2 hours every day of physical therapy. To teach Chelsea to crawl, I wrapped a thin towel around her torso, held it in my teeth to keep her tummy up, and moved her knees with my own, and her hands with mine. Doing this for 2 hours every day for about 3 months, and then she learned to crawl on her own.  Same procedure for pulling to stand, learning to sit to fall, and learning to walk.

Because Miss C has global apraxia (though at the time I didn’t know it), I have to create muscle memory for her before she can carry out a motor plan on her own. I tracked it for crawling and again for learning the sound “ba”, and it is roughly 10,000 repetitions of me doing an action for her until she gets it.

She began walking at 20-22 months, still unsteady, but walking! And that was a HUGE blessing, since her brother was born when she was 23 months. Right when Chelsea turned 2, we had her speech evaluated as well. Up to this point, she could only say “da” over and over. Never once had I heard “mama” or “Baba” or anything. Zero. The speech therapist from our early intervention program started with her right away. We also began learning ASL in earnest. I began trying to teach Chelsea the signs for “more” and “milk” by using hand over hand when she wanted those things, time and time and time again.

The early intervention program also sent out an occupational therapist to help with her weight gain, and we got to do a fun horseback riding therapy session each week, which terrified Chelsea for the first 2-3 weeks, then she loved. I coach gymnastics part time, and so began bringing Chelsea to my preschool classes once or twice a week to coach the Mommy and Me class, which seemed to benefit her tremendously.

At 2 years and 9 months, she said her first word- Mama!!! I can’t even begin to describe how elated I felt. It was right about this time that we decided to take the plunge and have Chelsea go to private speech therapy 2-3 times a week, even though the cost made us choke at first. We hunted around, interviewed several speech therapists, and selected one.

When Chelsea turned 3, we made that famous leap- the transition from early intervention to the school district! Now, I am an open book, and people can ask me just about anything they want and I have no issues with answering. So it drove me NUTS how I would try to find out what other kids were getting in their IEPs, and no one wanted to say. So service-wise: Chelsea got 3 days of preschool a week from March-May that first school year, and 4 days a week since then. She receives 70 minutes weekly of 1:1 speech, 30 minutes 1:1 OT weekly, and 30 minutes APE with her class weekly. I also recently fought again and her entire team is being trained in apraxia. I will post a lot about IEPs, I want parents to advocate for their kids, and you find out that school districts either won’t tell you things or don’t know themselves and stick to “one size fits all” programs like they are glued.

3 years 4 months, she had 23 words and 5 animal sounds. This was after summer speech camps, my own “preschool” that I do with my kids at home, private therapy, and everything else that we did (horseback, gymnastics, home practice, etc).

At 4 years old, Chelsea had had 50ish words, and I threw her a party, because you need a party if you work as hard as Chelsea does! She did T-ball, visited Nancy Kaufman in Michigan for a week, did a summer camp in Houston, and private therapy out the wazoo.

Before someone says that we have oodles of money to do all this stuff with, let me head you off. No, we don’t. We are not poor, but we sure aren't rich by any stretch either. My stellar husband works 80 hours a week at 2 jobs, I research grants and scholarships, and we live on nothing. We eat, sleep, and do therapy (and yes, I make it very fun- I’m not a drill sergeant) in our tiny basement apartment. We just know where our priorities are, and our daughter being able to communicate and be functional is way more important than vacations, a big house, new cars, nice clothes, or just about anything else.  

We finally got genetic testing last month, so we are very, very new to this diagnosis, and it is a very rare genetic disorder.

Now at 4 years 9 months has over 100 words (I haven’t even fully counted), and adding in word approximations with the sign, has more than 600 words that she can communicate! She can run, jump, is the best-behaved in classes, knows her ABCs and numbers up to 11, can do 5-8 piece puzzles independently, and is the sweetest girl ever as long as her little brother isn’t teasing her. She works so, so hard every day to communicate and I could not be more proud to be her mommy!
 Update: At 5 years old, she is mostly potty trained, speaks over 150 words, and has roughly 650-700 signs. She has started recognizing sight words as well!