2/19/11
I worked a little extra today to make up the evaluation I canceled when Oliver was sick a couple of weeks ago. Working with special needs kids makes me wonder constantly how Oliver is going to be when he gets older, and today has been no different. There is no accurate or precise way to determine how he will develop, which drives me crazy. I know from reading people’s stories and the literature that there is absolutely no way to know how things will turn out. It seems like the more the seizures are under control, the better off kids typically are. It seems that the earlier the seizures present, the worse the outcomes. Also, if kids start off with infantile spasms, like Oliver did, their development is generally slower and more abnormal. However, if the spasms are controlled quickly, as Ollie’s were, the better the outcome. We can’t even predict outcomes based on the amount or the location of brain tubers either. Sometimes, kids have very little obvious brain involvement and have horribly uncontrolled seizures, and others have lots of tubers but have few difficulties. Kinda convoluted and confusing. Oliver only has 1 cortical tuber that they have identified so far, but that doesn’t mean that his seizures will always be as well controlled as they are now. Also, more tubers could appear as his brain develops and as he grows. I’d like to tell myself that I should just live in the moment- see Oliver as he is now and deal with problems as they come up. I know that’s frequently-given advice, too, to just deal with things as they come, and don’t worry about what will happen in the future. I don’t really think it’s good advice, though. I think that if I am mentally prepared for upcoming problems, I will be more able to handle them, so I should think through what could happen- both the bad and the good.
Anyway, back to work. I’m a speech therapist, and I work at Children’s Hospital seeing kids for outpatient therapy. Lots of times, I look at my patients and wonder if Oliver will be like them and whether I will be able to handle it on a day-to-day basis. I see my patients’ families’ struggles with behaviors, school, learning, teachers, therapists, and everything, and I wonder what the best ways are to manage all that. The day-to-day stuff is definitely something therapists have no clue about when it comes to special needs kids. Sometimes it’s hard to see what the families are going through because it reminds me of our situation, and it scares me that that will be my future. Other times, I see families struggling, and it reminds me so scarily much of what we have been through; one little 3-year-old guy in particular sticks out in my mind. I saw him for a speech-language evaluation about a month and a half ago. The parents both took work off and came to the eval, which is usually a sign that they are very concerned and very involved. The little guy had significant communication delays and had some behaviors and patterns that made me think of autism. The family WAS very concerned- they volunteered a lot of information about why they were worried. Their story reminded me so much of Jadey’s and my story with getting Oliver diagnosed. Lots of empty reassurances from the pediatrician, comparisons with other kids his age that just didn’t compute no matter how much they tried to justify it, attempts to convince themselves that what they were seeing was just a phase or something the little guy would grow out of, things like that. EVERYTHING that Jadey and I did for weeks and weeks while Oliver was losing his skills. They ended up coming for the speech-language evaluation on their own without a referral from the pediatrician, which is EXACTLY the way Oliver finally ended up seeing a neurologist and getting his diagnosis of TS. I could tell the family was so anxious- scared that they weren’t getting the help their son needed but frightened that I would tell them something that would confirm their fears. Those types of evaluations are always the hardest, especially now. I definitely told them about his language delays, but I wasn’t sure if I should tell them about my suspicion of autism- to actually say the word “autism” to them rather than to be general and tell them to go for “another type of evaluation”. Sometimes families are ready to hear that, and sometimes they need to come to it a little more slowly and will get angry if I tell them specifics. And as a speech pathologist, I can’t diagnose autism, so I only need to say it to them if I think it will help. I had decided not to go into detail about my concerns until the dad asked me specifically why I thought the boy’s language problems were happening. So then I told them I thought he might have autism, but I couldn’t say for sure and would like the boy to see a specialist. Such a hard thing for everyone involved. I know how hard it is on my end to have to say things like that to concerned parents, and now I know what it’s like to be a parent and to hear bad news about my own son. I know Oliver’s situation has made me a more compassionate and understanding therapist, but it also makes my job harder.
Not too long ago, I had another situation that reminded me of our family, but this one scared me more than anything. I had just scheduled a little girl from the wait list and was starting with her in a couple of days. I was the one who had evaluated her, so I knew her already- she was 3 ½, had autism, and was pretty much nonverbal. I was reading through her medical chart before starting with her to refresh my memory, and I saw some visits the family had made to the neurologist a few years previous. It looked like the mother had had a concern that the little girl was making strange, uncontrollable motions with her arms when being put in her high chair. After talking with them about it, the neurology resident told the family that it was probably just a behavioral thing and not a seizure. Later on in the chart, there was a description of some skin manifestations- namely some light-colored areas, or ash leaf spots. Further on in the chart, I saw that the girl had had some genetic testing done to try to find whether there was a reason for her autism and developmental delay. The tests came back negative, and the geneticist made a recommendation to test her for… tuberous sclerosis. When I read that, I froze. To a rightfully paranoid parent like me, strange-looking arm movements sound like infantile spasms, which are something that a neurology resident might easily miss. Ash leaf spots are a major diagnostic feature of tuberous sclerosis. And the TS population has an insanely high incidence of autism or pervasive developmental disorder; somewhere between 25-50% of people with TS are said to be on the spectrum, a much higher percentage than the general population. Of course, in my mind she’s already been diagnosed with TS, and I wonder if this is Ollie’s future. Would this have been his future if we had continued to let his spasms go untreated? Scary.
So it seems that my job has become a lot more personal. I have more of a stock in these families now that I am one of them; I sympathize more with them and understand much more of what they are going through. More than anything though, I am glad that I am in a profession that has given me the knowledge and resources to help Oliver more than I would have otherwise.
