Posts Tagged by Progress
|May 13, 2013||Posted by Laura under Apraxia Awareness, Celebrations, E|
So often, even with appropriate therapy, progress with Apraxia is slow but steady. The syllables in words have to be learned individually. Then E has to be able to say all of the syllables in the word together. Then in a phrase, then in a sentence, then we have to work on generalizing it into everyday speech. It is exhausting and sometimes it seems like two steps forward and one step back. The thing that saves me is comparing her progress over time; taking videos and then watching them months or even years apart. The progress is absolutely amazing but difficult to see day to day.
I often get caught up in the day to day stresses and frustrations of organizing appointments and getting her to all of her speech and O.T. sessions, keeping her involved in sports and gymnastics, as well as her sister and brother. But when you see the magic of progress it is all worth it.
Yesterday, I sat on our curb watching E ride her bike in the street. Eighteen months ago she could not even pedal. She was so proud of herself when she finally got it and she would ride up and down our sidewalk on her little bike with training wheels desperate to be able to ride like her older sister and neighbors on the street. Five months ago, she begged me to take her training wheels off. I didn’t think she was ready and didn’t want her to be disappointed but she begged and pleaded so I relented. In one day, she taught herself how to balance and ride her bike. She still could not steer but she kept at it and it was not too long before she got that down too. Then they only thing we had left was how to start off. She couldn’t balance the bike in order to begin so she needed me or her dad to get her started with a little push. Pretty soon she figured out on her own that if she started at the top of a driveway, she would get enough momentum to start herself. Then yesterday, she figured out how to start from a flat surface. I watched my daughter in absolute amazement yesterday as she rode her bike up and down our street, starting and stopping by herself, beaming with pride that this summer she can ride with the big kids in the neighborhood.
Learning to talk isn’t like learning to ride a bike. I won’t be able to blink and suddenly have E understood by strangers. But the determination and can-do attitude that E demonstrated while teaching herself to ride a bike is the same thing she needs in order to learn to speak. Watching her ride yesterday left me speechless. This kid has grit like no other. She can do anything she sets her mind to and I’m so glad she’s mine!
|November 30, 2012||Posted by Laura under Diagnosis, E, Special Education, Treatment|
E is losing her occupational therapist at the end of December. She is a victim of school district budget cuts. It is cheaper for the school district to hire independent contractors (read no medical insurance) than to keep their own OTs on staff. E will of course continue to get services but it will be with a different provider.
I’m sad we are losing her as part of our team but resigned to what is happening at the same time. It wasn’t always this way.
There was a time when I knew E had CAS but couldn’t get anyone to diagnose her. I finally found an SLP who diagnosed her and we began therapy with her immediately. I put all of my faith in her. I knew we were in for a marathon and she was going to be the coach – our Mr. Miyagi if you will. Then four months into therapy she decided to stop seeing E because we didn’t fit into her schedule. E continued to see another SLP in the practice but she was not as experienced dealing with CAS. E didn’t really care but I was devastated. Mr. Miyagi had abandoned us.
In reality, it was I and not E who needed a Mr. Miyagi. E was completely dependent on me and I needed someone to tell me what to do. I would do anything I was told, I just needed someone to tell me what I should do.
In the three years since that happened, I have come to the realization that there will be no Mr. Miyagi for me. Instead, I have to be my own Mr. Miyagi. I do the research. I make the treatment plan. I find people to put on our team to help make this happen. The buck stops with me and it’s scary as hell.
Losing that first SLP was the worst. We’ve gone through several more – well, eight to be exact. We’ve found another specialist, one who knows her stuff, one who wants to be on our team. She treats me like an equal. She’s the expert in treating CAS and I’m the expert in E. The two are not synonymous so we have to work together to come up with the treatment plan that works best for her.
I’m really going to miss our OT. She has worked with E for two and half years, longer than anyone else has worked with her in the school district. She’s knows her stuff and she genuinely cares. She’s going to be a real loss to our team. E has come a long way in her sensory processing and fine motor delays journey because of her. I’ll be forever grateful but we must pick up and move on.
We’ll have to wait and see what January has in store for us