School Drop Off

Nick is at a nearby elementary that is not our home school. One of the 5th graders who's on safety patrol lives in our neighborhood and knows Nick from the pool. Whenever P is on duty when we drop Nick off she makes it a point to come to the car to help him out. This morning she was there and as soon as Nick saw P he had the biggest smile on his face that lasted until he walked into school and I could no longer see him.

It just made my day!

31 for 21

O.K., going to try again this year to commit to 31 posts in the month of October for DS awareness month. Since I haven't blogged in 6 months, don't hold out much hope.

Nick turned 9 a few weeks ago, hard to believe how the time has flown. It is amazing how "normal" or "typical" our family is. Nick is a typical baby brother, he figures out the right buttons irritate his brother & sister the most. Loves to wrestle with his brother (or anyone for that matter). He can pretty much take care of his personal needs.

Katie Beckett

Nick is eligible for, and has so far been approved for a Katie Beckett (or Deeming) waiver, which helps pay some of the bills that our insurance won't cover. It is essentially medicaid for disabled children who's parents make too much money to be covered by medicaid.

When Nick was in early intervention it paid the co-pays for therapy which were substantial, at one point about $800 per month. Since he's started school, the therapies are done at school and we aren't billed. We did use it for extra PT the first year Nick was in school and for his orthotics which our insurance didn't cover.

Every year there is an annual review, which freaks me out more than any thing else, I don't find taxes anywhere as, um, taxing. And every year I debate whether to apply for it.

Anyway, the review papers came the last day of school. Of course, Nick was late for his annual physical and his doctor had retired. Plus, I didn't have a current copy of his IEP. I managed to get everything, doctor visit included done and sent everything off in the mail this morning. Then came home and realized I forgot a copy of Nick's insurance card. Argh!

What a Difference a Year Makes

Yesterday, Nick had an appointment to be casted for a new pair of SMOs. He did really well, protesting a bit but not screaming the entire time. The orthotist remembered us from last year and commented on how much Nick had grown and how well he was walking. It's hard to believe it's only been a year that he's been walking. There was a time when I wondered if he would ever walk, now, I almost can't remember him not walking.

This time last year, Nick was starting to but 2 & 3 word phrases together. But, the words were one syllable or one syllable of a longer word and the phrases were often echos. Now, he's putting together real sentences with multiple syllable words. The other night in the bath he said "Go way, no wash my hair." He's also started to answer questions about things that happened. We're not quite to being able to ask him about his day but, occasionally, he'll tell us about something big that happened at school. And he actually answered a question in circle time at school.

Last year we were working on potty training but not seeing much success. Now, he mostly goes on demand and stays dry as long as we put him on the potty. Now, he can undress himself. The other day he pulled down his pants & pullup and peed on the potty all his own.

Self help skills are coming along, he has mastered a fork and spoon and eats cereal with a minimum of mess. He drinks from an open cup without spilling. Undresses himself, of course, I often find him naked in the bath tub! He knows to cover his mouth when he coughs and mostly to use tissues to wipe his nose.

When you have a child with delays, it's hard to see progress. Perhaps we need to take a longer view more often.

He is Down Syndrome - not

When I first heard of people first language, it seemed a too politically correct. However, the further we get into this journey the more it makes sense.

This morning, I talked with a gentleman with an older child with DS. He said "my daughter is Down Syndrome." And then talked about someone else who "is Down Syndrome." It bothered me, a lot.

Driving home, I got to thinking about people first language and how someone isn't a label and that they are so much more than a label. Nick isn't Down Syndrome, he's Nick. But, I'm also guilty of not using people first language. Nate has a friend who's bipolar, or rather has bipolar disorder. We have another friend who is dyslexic, or rather has dyslexia. Both of these children are so much more than their disorders or disabilities.

Start of 31 for 21

Tried to post every day in October last year in honor of Nation Down Syndrome month and didn't succeed. Maybe this year will be different.

October 1 is a special day for us because Nicky came home from the hospital after 13 days in the NICU on October 1st, 2002. So, now it's been six years!

I love Nick's school

I don't know what the future will bring for Nicky's education, but right now I just love his school. He's in an inclusion pre-K class, something I didn't think would be possible a few years ago. Tonight was curriculum night. Nicky has been sick since the weekend so he hasn't been in school. All his teachers wanted to know how he was doing and said what a delight he's been so far. I had so much anxiety about this placement and in the first two weeks has done well. He's been writing the letters N, I & K. He's learned their routines and is starting to use the potty regularly. And they are ok with the pull-ups.

Down Syndrome Awareness Month

Did you know that October is Down Syndrome Awareness Month?
It is. In honor of it I signed my family up for the Atlanta Buddy Walk.

Oh, and what's with the button? Trish over at Unringing the Bell has issued a challenge to bloggers to blog every day in October in honor of Down Syndrome Awareness. I'll try. We'll see if I make it.

Encounters

We went out to dinner tonight to Smokey Bones. As we were walking in another family was coming out. After our kids had tromped in and theirs had tromped out there was that awkward moment when the adults try to figure out who should go next. The father paused a second too long. I looked up and in his arms was a beautiful little girl with DS. He was looking at Nicky and I understood why. A look of recognition passed between us and the moment was broken.

I never know what to say when I encounter another family with a child with DS. Certainly, I don't want to be wrong but I always feel I should say something, or something more.

As we were walking out we ran into a family we know from the kids' school. They have twin daughters in M.E.'s class and a son with DS who's almost 14. We chatted a few minutes and drove home. On the way home it hit me that 30 or so years ago, all three of these children might well have been in an institution. So good to be living now.