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Tuesday, September 15, 2015

The first week of school

Janey has finished her first week of school, and so far, pretty much so good.  The start of school is almost always a good time for her.  She has a honeymoon period every year, where I am sure her teachers think "This is the girl I've heard so much about?  She's a piece of cake!"  Things often start collapsing around mid-October.  I feel like I'm being negative to say these things, but the pattern is pretty unmistakable.  But we do enjoy these early weeks!

The bus comes around early, around 6:30.  Janey's sleep hasn't been perfect.  Last night and 2 nights ago, she woke at 3, never to go back to sleep.  It is amazing how she never seems bothered by that lack of sleep, whereas Tony and I are very much bothered by it.  She seems to wake in the same mood she went to sleep in, and she's been cheerful lately, so she wakes up cheerful and ready to start the day, oblivious to the fact it's dark out and her parents seem oddly unresponsive.

Janey's school runs a little longer this year than last, as they have added 40 minutes to the school day.  She get home on the bus around 3.  So far, she's hopped off the bus in a good mood, which is always nice.  Her first act after getting home is to fling herself on her bed, and the next is to take off her shoes and socks.  Then, she eats.  She eats and eats and eats.  She gets school breakfast and lunch, but she doesn't much like them.  We've tried sending in food, but she never eats that either, and in Boston, school food is free, so we figure she might as not eat free food as paid for food.  But she gets home hungry.  It's amazing how much that girl can put away and still stay slim.  She's gained back the weight she lost being in the hospital, but she's still quite slender, despite eating like a sailor.

The one problem so far this year was a report on Friday that she had hit the bus monitor the day before.  We think the issue was that they put her in a seat next to another kid, not by the window.  Janey loves almost any length of car or bus time, as long as it keeps moving and she can look out the window.  It's a testament to what you can get accustomed to that we didn't get really that upset about the hitting report.  I don't want her hitting anyone, but we have learned as the years go by there isn't a lot we can do to stop it.  We of course tell her over and over that she can't hit people, and she can recite that back with a voice that sounds sincere, but when the urge hits her, she hits.  The best we could do was to tell the bus people that a window seat would be best, and they listened and are now putting her by the window.  I think everyone learns after a while with Janey that it's often a lot easier to modify her surroundings than her behavior.  I feel like this summer, we finally really learned that lesson ourselves.

Janey doesn't tend to learn anything academic at school.  I have pretty much accepted that.  It's not for lack of trying, and of course, who knows what she is picking up and not showing that she is?  If she is happy at school, the truth is I honestly don't care if she learns academics.  What I do care is if she is frustrated trying to learn things she just can't learn.  I have more doubts about ABA all the time, in Janey's particular case.   I don't think it's worked for her, in just looking at what programs she was being taught at the age of 4 and now at 11.  They aren't much different.  She is not motivated by ABA, or by any rewards she is given by it.  If she wants to know how to do something, she learns it near instantly.  I showed her only once or twice how to push the "3" on the TV remote to get it on the right channel for videos.  She shows no sign of knowing which numeral is which under normal circumstances, but boy, does she know that 3.  She knows which song is on which CD in the car, and what order they are in, and the lyrics and tune for every song, I truly think, that she has ever heard.  Those are the things she cares about.  I wish I could make her care about learning to read, or, as I sometimes suspect, make her show that she already CAN read, but, and I am seeing a theme here, you can't make Janey do a lot she doesn't want to do.

So, another school year has started.  It's strange, with Janey the only child home, but otherwise, it feels pretty familiar.  My main hope for the year is no hospitalizations of any kind---that Janey can attend school all year without interruption.  I think that's a reasonable goal.  As the years go by, we become more rooted in reality.  Acceptance isn't just a catch word, it's the only real way to stay sane, I think.  We accept that Janey is who she is.  We try to respect who she is, and work with who she is.  Like with any child, we rejoice in parts of her personality and despair of others.  Trying to change a child, a person, any child, any person, is an exercise in futility.  That's the biggest piece of knowledge being a parent of three very different, very intense, and very cool kids has taught me.  Work with what you have, and love them as they are.


Concernedmother said...

In the last couple of days I've read a good chunk of your blog and I totally get your situation as I'm a mother of a 7-year old girl on the spectrum. I've been in your position and still am most of the time. So please don't get me wrong. I think you should really try the GFCFSF diet for Janey. And mainly stick to it because I think people give up on it way too quickly. For us, the effects of otherwise food is evident immediately in terms of behavior. There are so many things I've found to work or not work with our daughter. The diet is by far the biggest factor. Also these days I seldom go a day without getting our daughter to do some kind of exercise in the morning even if it means jumping on the trampoline. You can also google brain gym exercises. Of course try to incorporate one thing at a time as we only have so much energy to follow through consistently on a daily basis. I'm begging you please for Janey's sake and for the sake of your family. I really want you to get your daughter back. I think with your sons out of the house, it might be easier to stick with the GFCFSF diet. I don't want you to spend tons of money buying ready made GFCFSF foods. You could cook brown rice pasta(trader joes), rice with meat/veggies, buckwheat dishes and use such in place of gluten. As for dairy, yogurt and ghee can be used in plenty. Other than those, stay away from all dairy. Make your own rice milk/almond milk/hemp milk if Janey's into milk. Also let her drink organic bone broth as much as she can. I don't even give my daughter store bought snacks. Even a few m&ms creates havoc in our lives. I can't tell you the night and day difference I've noticed behavior wise. Also remember that it takes a long time for the body to get rid of all the effects of the old foods. I would give myself at least a year with the diet before deciding to drop it. And please by no means am I implying that this is easy to do. But please please please give it a try. I feel your pain. Love!!!

Concernedmother said...

Forgot to mention: there's a form at school you can fill out that mandates the school to provide Janey with the special diet.