An Eventful Week, and More to Come
June 6, 2008 by Kristina Chew, PhD
Filed under Health
Depending on what website you are reading, the past week, the first week of June 2008, will go down as The Week Vaccines Got Green, or David Kirby Went to Parliament and Briefed 1 MP, 4 Lords, and a few others, or a really good autism book was released in the UK, or I did something unusual and interesting on Monday that you’ll be hearing more of, or ……
This past week was Charlie’s last week in elementary school in the lovely stone building he’s been in for the past two years, and with the wonderful, amazing, kindly, supportive [insert superlative adjective here] teacher, therapists, and instructors who’ve been teaching him. Next week is a short week with two half-days after which Charlie has a few days off and then begins Extended School Year at…….the middle school, with a new teacher. Hopefully, some of the instructors (preferably one who’s very tall and runs after Charlie when he rides a bike in the school parking lot) will stay with the class.
Charlie’s teacher makes monthly home visits and this afternoon was the last. On hearing that she would be visiting, Charlie hung around by the door, his shoes still on and not interested in getting his usual after school snack (though he went right to the fridge after his teacher appeared). It was Field Day today—-in the past, this has been a tough event for Charlie as it’s meant (1) total disruption of the usual routine; (2) standing around in a field with the sun beating down; (3) getting a lot of physical prompting to do activities that he could not figure out how to do. This Field Day was very good—-Charlie climbed up a rope, threw water balloons, didn’t mind one bursting on his head.
His teacher and I also went over his progress report and I’m hoping to go visit his class one last time—Charlie’s been learning to go up to each instructor and student in his class, get their attention, and ask to do something together. He’d been doing double-digit addition with a calculator last month but is back to single-digits—-he kept forgetting to input the second number with numbers like 32 and 66. His teacher has been with Charlie for a year and a half and she and I know that, when Charlie starts to get stuck, he tends to just keep making the same mistake despite all efforts and then Major Frustration ensues. So it’s best (as his teacher judged) to step back and work on something that he feels confident in. And after some times passes, Charlie relearns whatever he was having trouble with and even better than before.
We all have not been making a big deal about Charlie’s soon-to-occur change to middle school. His whole class is moving up together (Charlie is the youngest, and the tallest) and he seems to really like the other students a lot. His new teacher has visited his classroom a number of times and she actually already knows Charlie: When we first moved into the town we now live in, she was his teacher for a couple of weeks and she was so helpful and went out of her way to get to know Charlie and strategize his transition. There’ll be lockers in middle school, and a different bus, and an earlier starting time (7.45am—-Charlie currently starts school at 9am). Charlie is in a self-contained classroom so he won’t be switching rooms for different subjects but they’ll be a whole new school geography to learn.
That’s the kind of story I find myself coming back to again and again—-the accounts of kids, of people, living out each small moment of their life, poking out one last drop of ketchup, handing his dad his bike helmet so they can get going for a ride, lining up two black shoes to wear for school tomorrow, making sure the lunchbox is on its shelf in the refrigerator—the details of life with autism, every day in and out.
When Charlie was first diagnosed, one of my biggest questions was simply, what’s it going to be like to live each day with my son who’s so different?.
And I can say that it’s very good, thank you; crazy, hectic, fun, chaotic, exhausting, happy, and this is why it’s not theories of what one particular thing might have caused a child to become autistic that merit the most discussions. Theories and hypotheses and fad treatments will come and go like celebrities and sound bytes, but Charlie’s got a lot of life ahead of him, and the story’s just begun. So rather than focus obsessively about one possible of autism—-vaccines—onward with the further adventures of one great autistic kid.
Kristina, I love the way you have found (and share!) to give Charlie the space and time he needs to learn and grow in his own way, his own time. Celebrating the little moments makes each day an opportunity for joy and wonder and pride.
I watch Nik changing and growing so fast and I wonder what is next. Then I read your stories about Charlie and all the new, wonderful experiences —the bike, the swimming, the kayaking (!!)— and I know that whatever comes along we’ll be fine.
Sending sunshine and good wishes to you. Oh, and I hope that whatever you did on Monday won’t be fodder for some newspaper crime beat! (wink)
I love your awesome attitude and point of view. It’s extremely refreshing.
Good luck to Charlie in his new school.
All of Charlie’s friends are “moving up” and so is Charlie. Not only will he accept and adapt to the new school he is ready.
Sounds like you are all well prepared for MS. How many hours is ESY and for how long? Was the teacher coming to the home written into the previous IEPs? If they start school at 9 AM what time do they get out? Wow I had no idea schools still started that late. The new MS I want to go to is 8:30 – 3:30 but teachers are voting on new hours due to long driving commutes and getting home late in PM.
School is out here on the 19th for Matt and Nick finished all his already. School starts in Sep.
It seems like you are in a great school district. Does the district offer a placement at IEP and every single classmate got the same recommendation? Is it based on family location or something else?
FYI – The new 1500 post is not coming up when clicking from the right column and it will not take comments. I think it might have to do with the period in the title.
Anyway, I wanted to mention that I got the summer 2008 issue of Autim Spectrum Quarterly and have been reading a column – Straight talk on autism, this issue the title is On Recovery, page 39 by Barry Prizant, Ph.D., CCC-SLP (co-author of Scerts model).
Here is a snipet:
“The Downside of Recovery
At this point, we must consider the potential deterimental effects of overly focusing on the destination of recovery, as opposed to focusing on the journey of progress.”
The article goes is on pgs 39-42
ASquarterly dot com
“…crazy, hectic, fun, chaotic, exhausting, happy…” and more! I agree completely.
Ijust got an unusual email request from some guy who is a lead singer in a band that will be performing for autism speaks in NY and before that some private concert. His request to me thru my website – to donate toys.
I am a single parent to two kids in CA and write about our experiences and some band member comes across my site and thinks would donate anything toward Autism Speaks. Wow that is funny. Now have to think of a cordial response.
5 for Fighting? Have been getting lots of emails about Walks for Autism all ’round Jersey….. Thanks for noting that article; I agree about the “downside” of recovery.
The 1500 post is fixed!
Charlie’s started school at 9am for the past 2 years—I’d rather it be earlier as it means I can’t get to work too early, but the 3pm dismissal has been helpful. I think a 7.45 start would actually work better with his sleep pattern — I hope!
ESY is 9am – 1pm for 6 weeks. We’ve never had to ask for ESY; home visits are part of the program (they don’t occur in the summer, though). Most kids in the autism program qualify for ESY which also includes speech and OT; I’m not as sure for kids with an Asperger’s diagnosis.
I do know that, in our previous district, a family with a child with Asperger’s gets nothing in the summer. And, in that district, ESY was 8.30-12.30 for 4 weeks.
Thank you, Synesthesia…….Niksmom, me mentioned in a crime beat, perish the thought!
Here the ESY is for four weeks at four hours per day. That is why we always do camp which is six weeks at six hours per day and way more fun.
The group is Vanilla Fudge. I compared the name of the person to something I found online and it is the same person. I will respond tomorrow.
I got the June/July 2008 issue of Spectrum Publications today in the mail. The cover is hideous once again. This time it is black and white with some male in a locked cage who looks naked. No idea what this symbolizes and cannot find anything yet in the mag.
But while browsing through I came across a great letter n page 11 from a reader who is identified as (plain old mother of a child with autism). Her title of letter to the editor:
McCarthy’s not my spokesperson
Here is a snipet from her long letter (no reply from editor)
“Why do you only have celebrity pictures on your covers? What about the parents who are working night and day with their children?”
“I hate to be the one to let Ms. McCarthy know that everything in her book that she “did” with her son has already been written before by people who have been studying and researching for years on the subject.”
On page 39 they have a photo of the communication device I bought for Matthew in their technology showcase.
FYI – the cover photo is at their website – spectrum publications dot com. I will be letting my subscription expire without renewing.
I had meant to do this last week–I wanted to congratulate Charlie on “graduating” elementary school. I hope the transition goes smoothly. Best of luck with the new teacher/school. I know with your & your husband’s love and guidance, Charlie will continue to have successes. Congratulations!