It’s been a good, tough week here at Pfamily Headquarters. Very tough, very good. The good news is that Kate’s spinal tap results came back and everything was normal as was her bloodwork. So, after more than $10,000 in medical tests–not hyperbole–we know that 1) She hasn’t had a stroke, 2) she doesn’t have a brain tumor, 3) there isn’t a hole in her heart, 4) she doesn’t have multiple sclerosis, and 4) she probably doesn’t have a neurotransmitter deficiency. This is very, very, very good news because I didn’t want Kate to have any of those things. The only problem is that she still has the tremor and we still don’t know why. This may be no big deal– an ”idiopathic” or unexplained tremor may simply continue–odd, worrisome even, but no ultimate harm done. However, it is too early to tell if/how the tremor will affect her handwriting and other fine motor abilities.
Since November I’ve been intellectually and emotionally consumed with worrying about Kate and the upcoming test or appointment or whatever. Now the tests and appointments are at an end. My anxiety has not yet met it’s end, but I hope it soon will. It would help if Kate’s tremor would lessen or disappear the way a person’s sore throat pain starts to ease as soon as they hear that it’s not strep. Unfortunately, it doesn’t look like that is going to happen–I guess Kate didn’t get the memo.
Aside from my continuing anxiety about Kate, another tough thing about this week was the consecutive 504 appointments I attended at Duncan and Amelia’s schools. (A 504 appointment is a meeting with your child’s school in which you make a plan for dealing with the child’s disability). Duncan’s appointment was for speech therapy. Although I’ve been through the 504 process before, I was disturbed anew when I received the letter to schedule the meeting. I don’t feel like a parent who needs to meet with a special education liaison! I don’t recognize my child as being in the disabled category: someone who “has a mental or physical impairment that substantially limits one or more major life activities.” Nonetheless, Duncan can’t make a few of the sounds six year olds should be able to make. More significantly, he has a whole word stutter. (Have you ever heard of a whole word stutter? Rather than repeating the initial sound, a child with this type of stutter repeats an entire word over and over. Before Duncan, I had never heard of it).
Of course, lots of kids are sent to speech therapy. It’s no big deal. I went to speech therapy as a child, and I say “lllll” very well now, thank you very much. I guess it’s just a little tricky in that I am used to academic tests in which one hopes to be in the 90th or 95th or even 99th percentile, so to hear that Duncan tests at the 12th percentile–it seems so low! But then I remember that this is just his ability to make the ”k” sound–not a measure of his abilities as a whole. However, then I remember the stutter and that seems like it might be a bit bigger of a deal. Will he ever be easy to listen to? The speech therapist says that they will teach him to take a breath and slow down before he speaks. Could that solve it? Waves of worry wash over me and then recede. The tide comes in, it goes out, it comes in again.
The fact that I find receiving these 504 letters, with their mentions of “special education,” disturbing doubtless suggests that I need to adjust my thinking regarding special education. However, recognizing this doesn’t make it so.
Amelia has had a 504 plan for years. Her 504 specifies that she be “accommodated” by being allowed to use a keyboard in class. She types everything because fine motor tasks are a challenge. Her 504 meeting this morning was a bucket of fun. Her good teacher was pressing the district to offer Amelia more “services” because although typing resolves many of her academic-related fine motor issues, the teacher worries that Amelia will have trouble accomplishing important basic life tasks (cutting meat, tieing a shoe, cutting her own fingernails). I understand this concern well, as it mirrors my own, but the notion that playing with putty (my cynical description of occupational therapy) twice a week for twenty minutes will help—-I’m painfully skeptical.
The whole meeting felt like a wound being reopened, poked at, examined. It reminded me that Amelia has real problems that do and will affect her life. They aren’t going to go away. I had wanted to forget that. Just as I’d like for Kate to wake up tomorrow without the tremor and for Duncan to be able to spit out his story on the first telling, I would like to see Amelia’s fine motor problems vanish. I know, I know, if wishes were horses . . . , but couldn’t my kids just be “normal” kids without the issues? Sometimes the unusualness of their respective problems bothers me– as though, if I could somehow meet another three year old with a tremor, or 6 year old with a whole word stutter, or 10 year old who struggled to tie her shoes, everything would be so much better.
What is normality and when does the moniker apply? Are most of us disabled? Do almost all of us face some sort of deficit that leaves us at a level less than the norm? Some issues are bigger than others. I recognize that parents whose children have cerebral palsy or Down syndrome, for example, face difficulties far more daunting than the minor frustrations and disappointments I have faced with my children thus far. Also, from the outside looking in, it appears that some families have it all: they appear smart, athletic, healthy, etc. But I know that none of us will truly escape challenges in this life. And although there are many other sorts of challenges, the challenges we face often arise internally: social deficits, medical problems, mental problems, learning disabilities, etc.
It is likely that to be normal, one must be abnormal in some way. Can we take comfort in the normality of our abnormalities?
