Pain? Disability? Hardship?

I just read an interesting article in last week's Newsweek, about Holly Robinson Peete and the widow of Brandon Tartikoff. The article is part of a series about women and power. In this article, there is an emphasis on the hardships and pain that both women have faced: Tartikoff's husband died of cancer and her daughter suffered brain damage from a car accident, Robinson-Peete's father (Gordon from Sesame Street!) died of Parkinson's and her son has autism.

The article made me wonder, though, about the words we use to describe life. Is it a hardship that my daughter has Down syndrome? Do I feel pain because one son has dyslexia? Are Micah's food allergies a "disability" to him?

I spend so much time looking at all the positive things about my kids - how incredible they all are, what their unique talents and personalities are, how they handle their individual lives - that I sort of get pushed back when I hear the "sad" words applied.

I'm NOT sad that Sofia has Down syndrome. I'm thankful that she is able to do so much and that she is so much fun to be with, and I consider myself so lucky to have been included in this special world of T21.

I'm less positive about Sam's dyslexia, because of his personality. This will always be a challenge to him, and he gets so anxious about everything. So I worry about him. But I wouldn't trade his creativity for anything.

I fear for Micah's health, if he eats something he is allergic to, but I also know how to deal with it - a few weeks ago he accidentally ate some crackers with sesame, so I gave him Benadryl and watched him carefully for 2 hours, but the few hives that appeared quickly went away. And I am so impressed with how he handles it himself. He's very cautious (usually!) and very clear about what he can and cannot eat. He's calm, and neither panics if he's near something he can't eat nor gets overly jealous about it.

So I don't consider that our family has received an unusual amount of "pain" or "hardship". Ours is just more concrete, more definable, than others. We have a loving family, the monetary means to live the way we want, the resources to get our children the best education and health care available, and the community to feel comfortable and at ease with ourselves.

It will be interesting to see how the Transition from Early Intervention to public preschool goes. My online friend A recently wrote on our discussion board about getting her daughter's eval, and how it's difficult, because in every-day life, we are so accustomed to focusing on what our kids CAN do. Having to evaluate my daughter in terms of what she CANNOT do, or what she IS DEFICIENT in, requires a big mental shift. And, as A stated, it's absolutely necessary to define the deficiencies, because otherwise our kids would not be eligible for services!

Ok, enough musings. Sofia is sound asleep (yes, she fell asleep...in the car...at noon today, but only because we were out shopping all morning) and I should do some homework. I bought bth boys little MP3 players - it will be a birthday present for Micah and a treat for Sam, so don't tell! They were really cheap - 1 Gig for $25, little clips to attach. Should be fun. They'll be great for our trip to Israel in December.

Early Intervention Conference

Greetings from the Early Intervention Consortium! As a Parent Contact, I was invited to attend this terrific conference. I got here a little late (had to drop the boys at school first; my parents are watching Sofia and picking up the boys after school).

The keynote speaker was very good, but some of what he said saddens me. Basically, by "labeling" someone with a diagnosis (dyslexia, Down syndrome), we segregate them from the rest of the community. And it made me sad for what the future might bring for Sofia. But at the same time I realize how hard I fought to actually GET a label for Sam (dyslexia), while I fight to NOT label Sofia with T21.

The first workshop I went to was about the Parent Leadership Project, which is how I'm here. The second was an excellent workshop on Advocacy. I had drinks with J, another DS mom, and then we had a nice Parent dinner (M from our playgroup is here also, with the baby). Now I'm in the room, rooming with another DS mom.

It's been really nice to meet everyone, and I feel like I'm learning alot about the resources that we have and how to fight for our children's rights. And it's just nice to not be home!

Fine-tuning this thing

I'm still trying to figure out the content filters and "crawlers" for that thing on the side, but I think I at least understand how it works. So now I'll talk a lot about how all our Special Needs have been so important in bringing me to this point.

Down syndrome: When Sofia was born, 26 months ago, we were already prepared for her diagnosis. Trisomy 21, an extra chromosome on the 21st pair. But being involved in the Down syndrome community has been an incredible learning experience for me these past 2 years. In the "virtual" world of the Internet, I've "met" so many people with such varied experiences and backgrounds. In real life, my life has been incredibly enriched by all the amazing people who help me provide Sofia with the best possible education.

Food Allergies: While Micah's food allergies have not provided us with nearly as much fun and amazement as Sofia's DS, dealing with food allergies has been an empowering experience for me. He's up to 12 foods:

• Tree nuts
• Peanuts
• Sesame
  
• Soy
• Grapefruit
• Apple
• Mint
• Zucchini
• Yellow Squash
  
• Sea Bass
• Haddock
• Black Bean

Plus he's allergic to Penicillin. I found a wonderful site to order "taggies" for him, from a place called "Letters 'n' Wood" (link is to the right). Micah's tag is customized, and says "Severe Allergies/Penicillin/All Nuts/Sesame/Others". He pins it to his shoulder each morning, and is proud to show it off to people. He is a very responsible little fellow, and very cautious about what he eats.

Dyslexia: Sam was diagnosed with a "Specific Reading Disability in the English Language Arts", which in another state would be called dyslexia. Right now he is making terrific progress, thanks to the amount of time and energy his school has put into his education. They use the Wysnia-Kapp method for reading.

Crohn's Disease: My dear husband has suffered from Crohn's since he was a teenager. It gets worse when he's very stressed (which is quite often), and when the seasons change.

Skin Cancer: Yup, that's mine. I had a malignant melanoma in situ right after we got married. Now I slather on the sunscreen, and go for screenings every 6 months (more often if I see something that worries me). I'm just coming out of my sun-phobia, after 8 years, and learning how to live in the light. This summer it will be interesting to see how I handle the pool club.