Yearly Archives: 2012
|December 1, 2012||Posted by Laura under E|
As E has continued to improve we’ve noticed she seems to have more control over one side of her face than the other. When she’s frustrated, whining, or trying to smile on command she scrunches up her face and eyes unevenly. Sometimes it even seems like she’s talking more from the one side of her mouth than the other – kind of like a person who has had a stroke. She doesn’t do it when she’s talking or smiling or crying without thinking. It seems to be only when she’s cognizant of trying to control her face and mouth.
According to ASHA’s CAS Technical Report causes of CAS fall into three categories: known genetic and metabolic syndromes, strokes and trauma (sometimes intrauterine), and idiopathic. As far as we know, E’s CAS is idiopathic. In reality, we think it’s probably genetic or inherited. We have several family members with some similar symptoms, although nowhere as severe. We’ve never spent much time concerned about the exact cause. As long as the cause doesn’t change the treatment, it’s not something I really need to know and in any case may not be something I can know until more research is done.
But watching E contort her face when trying to plead to stay up longer has led my husband and I to talk further about the cause of E’s CAS. We could put her through genetic testing. Although expensive, I think it only involves a blood test and is not invasive. Or we could take her to a neurologist and get an MRI to see if she has had a stroke we are unaware of – maybe a stroke at or before birth. If either of these tests were positive, would it change her treatment plan? If both of these tests were negative would we have done anything other than waste quite a bit of money on a wild goose chase?
Pondering our options also make me concerned about E’s reaction to all of this. She’s not a toddler anymore who won’t remember the visits to endless doctors. She’s five. She has a very good memory and she is very aware that she has CAS. She knows that she’s the only one among her siblings and friends who has to go to speech and occupational therapy and counseling. She knows she’s the only one still using training wheels when all of the other neighborhood kids can ride bikes without them. She knows she talks funny and that most people have a hard time understanding her.
But does she also know how beautiful she is, inside and out? Strangers always comment on her beautiful eyes and hair. Those of us that know her see how kind she is to both her sister and her brother. When we tell them no to something, she’s the one that takes up their defense and tries to convince us to relent while they cry. Does she know how smart and clever she is? At times, her vocabulary amazes me. I’m constantly surprised by the words she can already read by sight. Does she truly know how proud of her we are? She tries new things that are hard for her on a daily basis – softball, soccer, swimming, and gymnastics. And she doesn’t give up, just like she doesn’t give up with her speech.
I don’t want E to ever feel less than, to feel broken. Would finding a cause make her feel that way? If she knew that she was born with a specific genetic mutation that caused it, how would she feel? If she knew that something during or before her birth was responsible would that make it any better?
The more I think about it, I think that these are questions that only E can answer when she gets older. If she decides that she would like to try to find out the cause then we would certainly support her in doing so. If she doesn’t want to know then we’re okay with that too. It will be her decision to make. We don’t need to know because she is perfect just as she is.
|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