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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?
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8 Responses to “Normal”
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Definitely normal to have problems. Your kids certainly have some real ones, and I would never want to minimize your concerns for them as a parent. The older my kids get, the more real some of their challenges (some more obvious than others) seem. My idea is that as a parent, we are here to help them weather their challenges and discover their individual strengths (the flip side). I guess that’s obvious. Isn’t parenting harder than you ever thought it would be?
I know that each of your children is brilliant and talented, and while we can’t ignore the hard things, it does help me sometimes to focus instead on the good ones. Obvious again. This whole comment seems a little glib (perhaps that’s one of my challenges) but I want you to know that you’re not alone. Oh, and we’re so glad that Kate’s tests have eliminated the scariest possibilities.
Oh, I’m so sorry for all the stuff you’ve had to deal with! Each of us has our own challenges, it’s true, but sometimes it seems like some people get more than their fair share doled out to them. So are you done with Kate’s doctor’s appointments for a while or are you going to keep looking for an answer? Have you tried any non-speech-therapy things for the stuttering? I’ve heard that singing lessons or reciting poetry for some reason help. I believe I remember hearing that James Earl Jones had a terrible stutter as a child, and overcame it through drama lessons. Just keep plowing through–you’ve got a great husband and loving family to help you out. It’ll get better!
I’m a big fan of the whole Pclan. That’s all I have to say about that.
As one who knows the Pclan and has seen you and your kids in action, I never knew ANY of this drama was happening! I am, admittedly, oblivious, and moreso now than usual, but “Normal” is indeed overrated, and an illusion. I am glad all Kates tests have come back negative for the real scary stuff, and pray that the tremor will stop in time. As for the rest, make some garlicy pasta, and one of your great molten chocolate cupcakes (In the ramikins) that we dream about and relax! You have everything you need to be content! You ARE a blessed woman, and you pass those blessings on to us!
After reading the comments here and those that I have received by e-mail, I fear that the original version of this post may mislead people who don’t know my children or who don’t get to see them regularly. I have tried to revise it a little, but let me be explicit: in most respects my kids are doing great. We are fortunate in that the various challenges they face are just one element of their lives, not their entire lives. I believe that people who see them at school, at church, and in the neighborhood probably see them as more or less normal, happy kids. That is part of the point I am trying to make. Challenges and differences from the norm are part of being normal.
This post wasn’t meant to be a tale of woe about our children. What I am trying (but failing) to express is the wear and tear of the frustration that results from some of their challenges. However, all in all, we know how blessed we are. Our kids are great and we are so thankful for them. Also, despite their smaller and larger challenges, our kids are very blessed to have the lives they do. They are growing into unique and interesting people with special talents. I think I will take this as an opportunity to brag about them for a minute because I don’t want anyone to think that I don’t see that they are wonderful and greatly blessed.
Amelia is in a gifted program, and while it has been a terrible struggle for her, she is there because she is gifted. She had one of the highest scores in the district to qualify for the program. She is an articulate young lady with a vocabulary that surpasses most highschoolers. Some of her most notable characteristics are her intellectual curiosity (she was born to be a professor or a scientist)–she wants to understand everything–and her persistence. I know that she will go far in life because she doesn’t give up. She is motivated to achieve and works hard to accomplish the high goals she sets for herself.
Duncan is strikingly handsome with his blue, blue eyes and ready smile. He has a wonderful ability to joy in life. I find that I am a happier person just because I spend time with him. He is a hard worker. One of the most notable things about him is high degree of creativity. This manifests itself in two ways: first, he is very imaginative and can entertain himself for hours in his make believe world. Second, he is an artist in the tradition of Walter Wick. He has a tremendous ability to reimagine ordinary objects in new ways. I can’t wait to see what he will do with his life.
Kate just turned three, so I don’t know as much about the person she will be as I do with the others. I do know this: she is a wonderful, pleasant, sweet child. I would have missed out so much if I had decided not to have another baby! She likes to make faces and she is really cute. Her recent mode of locomotion has been almost exclusively jumping and skipping. She likes people and is thrilled to be alive.
Thanks to everyone for your concern about Kate. Robin–I don’t think there will be any more doctor appointments for a while. As far as I can tell, we’ve pretty much exhausted their investigative resources. Unfortunately, we’re back to exactly where we were in October, except 1) the insurance company has $10,000 less 2) a bunch of awful things have been ruled out and 3) her tremor now occurs more frequently and is more pronounced. Her neurologist is going to monitor where she’s at in four months, but I don’t think there is any plan for what to do next other than watch and wait.
I just have to say again what another poster said. Normal is an illusion. It is hard to remember that in our lives, but we should–me included. Thanks for sharing your experiences via blog– it is helpful to me
Hi Pmom! I meant to comment on this post earlier, but it got away from me … As an abnormal person myself (being full of every sort of oddness) and someone who knows few people who are even outwardly normal, I do tend to think normality is not the norm. I’m always seeing crazy statistics – like 1% of the population is sociopathic. 1% – that’s a LOT of sociopaths! And something like 3% borderline personality disorder (or was that manic-depressive?) and a third of women suffering from clinical depression. It goes on and on, and when you add it all up, it seems that with mental illness alone your chances of meeting a fully “normal” person on any chance encounter are considerably lower than 50-50. And then there are all the other sorts of bodily illnesses and handicaps, and then there are all the possibilities of being made weird from external causes like a weird environment or contact with weird people … or the chance of injury or physical or mental trauma … or maybe you live in a war-torn or disaster-ridden or poverty-stricken country, and wish you could just be “normal” like the people in peaceful, prosperous Western countries. Yes, normal is rare. Show me a normal person and I will gawk at them.
I don’t mean to minimize the pain of worrying that one or one’s loved ones are abnormal. I know that is hard, no matter how many comforting statistics anyone cites. Just glad to hear that Kate didn’t have bad results from the tests.
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