27 October 2011

And then there are days when the clouds part, the fog clears and there is a defined path visible. It may not be a long path, at least the visible part, but there is definitely something there.

Today, is one of those days.

Julia has today and tomorrow off. Fall break. Today is all about therapy. We were at the clinic at 11. Julia for therapy and me for my quarterly meeting with our team psychologist. Then, Marilyn at 1:30; back to clinic for more therapy at 3 until 6 when we go to 3 gaits for riding. Tomorrow is a wee bit slower.

It is good to be out of the house today. Ed is doing the second and, I hope, last sanding of the kitchen ceiling and walls. It took the second mudding a really long time to dry, but after almost 48 hours of running fans, it was ready to sand this morning. I covered as much as I could with plastic, made sure all the upstairs doors were closed tightly, Ed put up a plastic curtain between the kitchen and the rest of the house and he started his work. We slipped out of the house just as he started. His aim was to finish the sanding and clean up to be ready to begin painting tomorrow. He is expecting to work on cabinets next week. I’ve heard from the sink, faucet, and range hood people and those things have been shipped. With paint on the wall and a cabinet or two in, I should be able to choose my countertop.

Oh, to have a kitchen sink and a stove again! Realistically, 3-4 more weeks, but maybe 3.

And I’ve been noticing that Julia says, “Oh, man!!” when she gets frustrated. I had no idea where that came from. I don’t say it. I asked at school and no one there specifically says it. And I didn’t think it was part of any of our favorite movies or her latest fav tv show, Dinosaur King. I was on the phone yesterday with Mary, and she said it! In the same exact tone as Julia does. I laughed at her and explained. Now, she can’t wait to hear Julia say it. And I can’t wait to hear them both say it together!!

Now to the revelations.

In Wisconsin, the state will pay for intensive autism therapy for three years and then offers to pay a certain amount of money for non-intensive therapy. Julia’s third year of state supported therapy ends in July of 2012. On private insurance (at least at present), a child can get 4 years of intensive. Julia has been on the state’s dime since David died but I can switch her to my insurance (which is David’s state health plan that I pay for myself) and get the fourth year of intensive therapy. It is a lot of money to include her on my plan (she gets medicaid through the state because of her intensive therapy slot -- I could explain this but does anyone really want to know?) but I decided that I would do it if her therapy team thought it was a good idea. Talking to our psychologist was the final team member to weigh in -- team is in a general sense and includes school teachers and our attachment therapists, as well as our IDS lead therapist -- and she agrees that for Julia another year would be very beneficial. We can all point to great gains that she has made over this past year. We can also see issues to work on, especially socially which Julia may be just beginning to open up to. So, over the next few months I will explore the financial end and talk to my insurance carrier to see how we will set up the transfer.

Then, we talked about Julia and school. The thought of having Julia repeat fourth grade has been clanging around in my brain for two months now. I listen to and watch Julia’s utter delight when she can do some of the same work as her class. She is learning cursive with her class and is doing a modified version of a report on animals that the entire class is doing. Julia’s reading is also spring ahead, still by leaps and bounds. Her decoding gets better every day and even her comprehension is coming along. There is a parent-teacher meeting next month and I will check with them, but it seems to me that she may complete the third grade reading curriculum by the end of this year -- the end of fourth grade. Giving her the possibility of catching up comprehension-wise with another year in fourth grade, it could mean that Julia could be in a class reading group in fifth grade instead of reading with a special ed teacher all of the time. It would probably be the lowest reading group and Julia may still need some one-on-one teaching, but she would so enjoy reading with her peers.

I don’t know if this will ever happen with math, but I see the possibility of getting through first grade math this year. She is enjoying working on math right now. No, she is not leaping or bounding but she is counting and knows when addition or subtraction is appropriate in story problems. This is leaps beyond last year but still far behind her peers.

Julia is already a year behind her age peers, being 10 and 11 in 4th grade, instead of 9 and 10. So, retaining her in fourth grade would make her 2 years older than most kids in her class. I understand that this could be a problem during puberty but Julia’s understanding, awareness, and maturity is so far behind the kids in her class now, that I am nervous thinking about middle school in a year and a half. I’ve heard the argument that it could mean that she will be able to drive when she is a freshman in high school, but who knows if Julia will ever drive.

Another year in a school that she loves and feels very safe in with people who love her and are teaching her so well, seems like a win-win to me. And if she never comes to a greater understanding of the world around her or if she never matures socially sufficiently to make and maintain friendship by herself, what does it matter if she is a year or two behind her age peers.

Most parents have some idea of the path their child will take by this age. Certainly, David and I could tell with Cheshire. We had no idea of what she would do, but there was an excellent chance that she would go to college and take up some professional career. We knew that much in fourth grade. When Cheshire was a youngster, there were saving plans to prepay college tuition to a particular school, usually the big state schools, when a child was young thereby locking in the cost of tuition. A genius plan if you could predict where in the world your child would go. We certainly were not ready to make that guess. That determination seems so far out of the realm that we never even considered it.

With Julia, her very future is as uncertain to me today as the choice of college was when Cheshire was in fourth grade. In the best of all worlds, she will continue developing and maturing and learning. She will catch up academically sufficient to one day leave the special ed world behind and learn to survive socially in a complex world. She will go to art school or study dinosaurs or birds in college. Right now her world in expanding and her abilities increasing -- a number of years behind her age peers but at her own pace and in her own time. If her current trajectory continues, i could make the same assumptions about her life that i once made about Cheshire’s. But kids with cognitive delays like Julia’s can also plateau. Some of them do ok for awhile in school, some work on a steady trajectory gaining ground for years but then they stop. Of course, they don’t stop completely. Maybe it just slows down. Maybe there is good decoding in reading but the comprehension piece never comes in, and reading beyond a very preliminary level is never possible. Maybe basic reading and math are learned but more theoretical studies, like algebra and geometry, remain out of her reach.

And there is no one, no test, no research, nothing that would say, that other similarly situated children got this far, but there is a good chance that you child will too. Each day is a surprise and each fact mastered and embraced is a miracle. The progress of today does not ensure progress tomorrow. This is what parents of kids like Julia have to let go of. And it is not easy. I am learning but it is not easy.

But looking at possibilities and limitations and considering this child here and now, I believe that she will benefit by staying an extra year at Randall.

And so, I will begin that conversation.

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