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.

She sure is ACTIVE!

That daughter of mine is on the go. This morning, after a brief play-period in the block room at Micah's school, I left Sofia playing (with another kid) while I went down the hall to deliver Micah to his classroom. When I got back, Sofia was gone. A frantic search by me and one of the teachers ensued...and then one of the dads found her, in the boys' bathroom, playing with the "water table" (aka the toilet). The teacher and I had LOOKED there, but didn't see her! Oy.

Then I had an ECEC meeting upstairs in the office/sanctuary wing, and she kept wandering off. She figured out how to open the chapel door (we'd tried meeting in there to look her in). She escaped into the sanctuary, where Micah's graduating class was practicing for tomorrow. I found her studying kids' shoes, much to the chagrin of Mrs. K.

She bounced around during a trip to iParty (had to get a pinata for Sam's party), but then she fell asleep, so she was asleep during my whole lunch meeting (MWJDS Adult Ed Committee). I woke her up to pick up Micah and his friend, and she was quite the LITTLE KID at the MWJDS playground. We stayed until after 4pm, because I had Micah's friend and JT, and both their moms came to get them. Now we're home, and the kids are watching the old Batman movie (the Adam West and Burt Ward movie!). Miss Sofia is sort-of wearing one of Micah's pajama shirts (she's got the arms on, but never made it through the neck hole, so it looks like a vest). She's also grimacing repeatedly at me; I'm not sure why.

Yesterday was hellish. I was shaking by the end of the day. It started off as normal as usual - after I dropped off the boys, a quick errand at Target and then off to playgroup. It was the first day of the new session, and La Principessa was totally in control of the room. I think she expected it to be a drop-off group, because she all but ignored me the whole time. When I told her to wash her hands before snack, she walked over to the sink!

I took her home a bit early, because she was viisbly fading, and she did fall asleep in the car. I woke her up when our Developmental Specialist arrived. She revived very quickly, and was a demanding dynamo for the session.

But during the session, Sam's school called 3 times, to tell me he said he wasn't feeling well, but was obviously fine since he was running around on the playground like crazy. He said he couldn't breathe. I think he's just got a bit of post-nasal drip from the pollen, and it's making his throat itch, and he heard another kid "feel sick". I even spoke to nurse at the pediatrician's office, and she agreed with me, he's a hypocondriac. But since he'd gone to the office 3 times, I had them give him Benadryl, and I went in early to pick him up.

When I got to his classroom, I gave him the choice of getting a strep test and missing his therapy session, OR just staying in school. "Uh, I think I'm ok to stay now." Great. So then I had 45 minutes to waste...

Picked him and A. up, had to wait around at the therapist's office because she was running late. Drove A. home, and then made the mistake of calling my mother back on the way to pick up Micah. Mommy dearest once again wants me to fork over more than $100 on a moment's notice, to go in with her and my sister on a gift (this time it's airfare for my grandmother to come up for my uncle's wedding...I'm not sure why my uncle and his kids aren't paying for this one....). When I hesitate, mom makes snide remarks about my "priorities" and about how I "let" my husband manage the money.

It REALLY ticked me off. I'm still really angry. Of course David said we can come up with the money if we need to, but I'm torn between saying "my finances are none of your business" and giving her a list of our "priorities": 3 kids, 2 in private schools, one income which is at the mercy of when the clients pay their bills (so while sometimes we have a real paycheck, sometimes we don't), $60 every time I fill up the minivan with gas just to cart the kids around town (I want a hybrid minivan!), and incredible prices on food and supplies. And yes, we occasionally spend money on treats, like travel, which is really important to us. But we plan for it. I also have to spend a boatload on my uncle's wedding weekend - besides the 10.5 hours round trip in the car with 3 small children, there's a hotel room, food [because I doubt my uncle will have much vegetarian fare for us], a wedding gift for my uncle, a wedding gift for my cousin (her party is the night before), a baby gift for my other cousin, and a dress for me to wear to all of this!

Argh. Ok, I'm done ranting (I think). Anyway, I got home with the kids, and sent Sam to his room to rest. I made dinner, and our mother's helper arrived, so she could feed Sofia. I had to leave for an EI meeting, and David was going out with the neighborhood guys. As I was telling E what time to put the kids to bed, Sam started bouncing a tennis ball around, and it flew right past my face. I walked out.

Tomorrow is Micah's graduation, so we're all going to sleep late, maybe go out for breakfast, and then go to school. After the ceremony there is a brunch, so Sam might not get to his school at all.

(Sofia is carefully playing with some towels, and she's quite funny!).

Oh, the program last night at EI was really interesting, but it scared me. It was about presenting disabilities in the public pre-school and nursery school setting. This mom had started the ICARE program in her town, and it's basically about reading good "about disability" books at age appropriate levels. It was a lovely program, but when I compared it to the incredible diversity unit that we do at MWJDS, I was appalled. The public schools typically get 30 minutes A YEAR to present this information! Yikes!