Wednesday, June 21, 2006

I Know that I Don't Know

So, you can see from the updated sidebar that I've named my son's syndrome on this blog. I went back and forth, but I ultimately think it's important to do so in order to help other parents who go searching for information. I realize that this means that my own family will eventually find this blog, but I'm hoping they'll respect my wish to keep this part of my life private.

Some information on D., Sotos syndrome, and the Big Picture.

Sotos Syndrome is an overgrowth syndrome, and the correct spelling does not include an apostrophe. Go ahead, do your Google searches and read what there is to read, if you care. In a nutshell: kids with Sotos are typically born with large heads (check), hypotonia (check), may have jaundice (check), difficulty breathing (check)....

From the National Institute of Neurological disorders and Stroke:

"Sotos syndrome is a rare genetic disorder characterized by excessive physical growth during the first 2 to 3 years of life. The disorder may be accompanied by mild mental retardation, delayed motor, cognitive, and social development, hypotonia (low muscle tone), and speech impairments. Children with Sotos syndrome tend to be large at birth and are often taller, heavier, and have larger heads (macrocrania) than is normal for their age. Symptoms of the disorder, which vary among individuals, include a disportionately large and long head with a slightly protrusive forehead, large hands and feet, hypertelorism (an abnormally increased distance between the eyes), and downslanting eyes. Clumsiness, an awkward gait, and unusual aggressiveness or irritability may also occur. Although most cases of Sotos syndrome occur sporadically, familial cases have also been reported."

I joined a Yahoo! group on the subject, and I've been reading the postings, though I haven't yet posted anything myself. I've noticed several distinct personality types in the group -- and I'm obviously not quoting anyone directly here:

Parents of older children with Sotos. These people have kids in their 20s and 30s, and they say things like, "If you think your kid is going to live independently one day, you are deluding yourself."

Parents of younger children who are showing significant delays. Some of these parents are realistic and say things like, "My 8-year-old just got rid of nighttime diapers and can finally ride a bike! He can say at least 50 words now, and he really enjoys his special ed classes." They recognize that this kid is, well, significantly delayed and they know that they are going to have to care for him always and face tough choices down the road. Other parents post things like, "Now that my daughter is 10, she can say about 200 phrases. We think she will be in a regular classroom next year, and we have no doubt that she will do fine." To me, this seems somewhat unrealistic, but what do I know?

Parents of younger children who have mild delays. They say things like, "My son is 3 and is starting to use 3-word phrases and talking more intelligibly. He seems to fit in well with his preschool class. He still gets speech therapy once/week, and he is much less clumsy now than he used to be."

As I read the posts, I try to keep several things in mind:

  • If we hadn't moved, it's quite likely that we wouldn't have this diagnosis. Our old pediatrician noted D's height at each visit, but hadn't raised any red flags or sent us on for testing. It was only when we moved and got a new pediatrician that we started this whole route of doctors and testing. We were already doing the PT, OT, and speech even before the dx., so we were aware of the delays, but we were also noting how the gaps were closing.

  • Parents of kids who are better off are going to post less. Parents of kids who do really well aren't even going to join these groups.

  • Parents of kids like D. may not even know their kids have Sotos.

All I can do is list D's accomplishments and try to examine them objectively. At 2.5, D. is talking a lot, using 2 and 3-word phrases and combining them. His speech is becoming clearer. He plays nicely with other kids. He can ride a bike. He can pedal forwards, backwards, around corners. I only mention this because his developmental specialist is astounded every time she sees it and keeps telling me that it's a 3-year-old skill at least. He's starting to dress himself. He can follow 2 and 3-part instructions. So what does all that mean?

I don't know.

I know that I don't know a lot. It's the accepting part that I'm having trouble with.


lisa said...

I have a 5 month old daughter who was diagnosed a month ago with infantile spasms (a form of epilepsy). I also joined a Yahoo group and what you've described has been my experience exactly. We have a long road ahead of us before we discover the extent of her developmental delays and cognitive abilities but so far she's doing really well. And then I read about other kids who are not doing so well and I wonder if I'm deluding myself about her future.

Lisa b said...

bang on here.
If only I had found your blog first!

Lisa b said...

I hate the parents of severe kids who tell us our kids will also be severe. Its like they are wishing it upon us.
I hope I don't end up like that

kathy said...

I agree with Lisa. On the infant stroke
I've gone on, I have talked to some bitter
moms who tell me things like "my son
also looked normal for the first 3 months but
after that he showed all sorts of problems.
So don't think that just because your son
appears ok now that things will be ok. You
can do all the PT you want but he will still
end up with issues". Ok, I understand that it's
probably true for a lotta ppl but I still
thought it was very discouraging and mean.
I just can't accept that I am going to be in
the "bad" category. But I have also met
some nice moms whose kids came out bad
but they were still encouraging and said
things like "stop panicking! Your son is
doing well now so he may end up being
one of those kids who come out with
minimal issues". I just want to hear only
good stuff no matter how unrealistic it is cuz
I'm in serious denial.
I want to hear "you will be in that 5 percent
whose kids recover completely". I'm so
delusional. how depressing.