In Transition
Published January 02, 2009 @ 10:29AM PT
So 2009 is here and it's good bye to all that for 2008; ring in the new (writing here at Change.org) and ring out the old (writing this blog).
Well, maybe not so fast.
The days at the end of the year and at the start of a new one----the holiday season with all of its festivities and social and family gatherings and travel and other excesses, especially of an edible and potable sort---have always tended to be a bit more on the rocky side in our household. Charlie, my 11 1/2 year autistic son, prefers order and the usual routine. (As noted in item #5 of What is autism on this site.) It is the case that, ever since Charlie was a baby, our usual holiday routine has been to travel back to northern California to visit my family in the Bay Area, and 2008 was no different.
But actually there was a big difference. Charlie, who has somehow grown a couple of inches over the past year quite (over my head) and who has definitely entered puberty, seemed more than anxious to be in changed surroundings. He was manifestly distraught.
Charlie did well at family gatherings on Christmas Eve and Christmas Day and then---well, I guess he would have done altogether well if we'd gone back home, but our return trip was not scheduled till 10pm on January 1. From the day after Christmas till the day before New Year's Eve, Charlie was, to understate the matter, on edge, and especially at transition moments---getting out of the car, finishing a meal. Several times he was something more than beside himself and, while there were four adults around---Jim and me and my parents---it often felt as if we could barely hang onto him. (Let's just say we left my parents' house after leaving a few dents.)
My son, who is hyper-aware of his surroundings, does not have a lot of language readily at his disposal; he is, it can be said, minimally verbal. Hence (item #6 on What is autism) he struggles mightily to put needs and thoughts and anything into words. Often, the only way he could tell us the extent of his distress to be unmoored from the sweet familiarity of home in northern New Jersey and the calm order of life in an autism classroom in a huge public middle school, was via his entire body. And, why not, when everything he was experiencing---from the California light to the echoey-ness of my parents' house (it has all hardwood floors) to food that tasted different from what he was used to?
Jim, my husband, and I did what we have done in these years of taking care of Charlie. All plans for seeing friends; for a movie, a dinner out; for random roaming in San Francisco---we put these aside as we launched into what you might call "full advocacy mode." I've spelled out more what I mean by that in my primer on autism advocacy. I describe three stage of advocacy that Jim and I have moved through over our years with Charlie and I note a really difficult, recent chapter in our life, when our school district informed us that we ought consider "temporary residential placement" as an "option."
If you've read my blogging about Charlie over the years---I started writing about him online in June of 2005 in a blog called My Son Has Autism, which was renamed Autismland December of 2005; I started writing more generally about autism, intermixed with accounts of life with Charlie, at Autism Vox in April of 2006----one constant theme is our insistence that Charlie is with us. That, we look to Charlie as our guide in figuring out what he most needs, and that we have learned to shape our lives around him (for the better, I have to say). That, wherever Charlie goes, we're going with him.
As I write in my primer, after hearing about this "temporary residential placement" "option," Jim and I immediately started meeting with the school district and Charlie's teacher and sending out too many emails and reviewing IDEA and Wrightslaw and talking to a lot of people.Things got much better and by the time I visited Charlie in his classroom on December 23rd, he was a very happy student indeed, under the watchful eye of his teacher who told us it had taken her a couple of months to understand Charlie's learning style. We then made the mistake of thinking that that peaceful easiness would transfer for Charlie wherever he was----but no. And so a week on vacation became a very focused week, of sitting with Charlie, showing Charlie a calendar and counting down the days, hiking in the trails and hills above my parents' house for long hours.
During which it occurred to me, yeah, being in the in-between of a transition, of being away from home and school----it feels like wearing shoes too big or too little.
I've been in a transition of my own. In starting to blog here at Change.org, I have decided that I won't be blogging any more at Autism Vox, which I created the name for and have been writing for almost two years and over 3400 posts worth. Life being rather full (in addition to having an overload of classes to teach at my college and a new administrative duty, as noted here), I can only write one blog at a time and, through our struggles to get Charlie the education and services he needs today and will need throughout his life, advocacy has always been the key issue for me. I will be writing on Autism Vox up to next week; as of today, I will be mainly blogging Change.org. I'm very excited about it, and I have a great, great co-blogger, Dora. But change is always well, change, it's new, it's different, it takes getting used to.
We are back home in Jersey now (after a very Jersey re-entry which involved someone, not us, saying "I only visit here, everything here is a pain in the [rhymes with bass as in the fish]"). From the time we got to the San Francisco airport, Charlie pulled on his old blue backpack, kissed my mom and hugged my dad, and, after we'd cleared security, walked ahead of Jim and me to our gate. He was all smiles once we reached Newark Airport; munched a piece of crumb cake (unfindable in the Bay Area) on NJ Transit; and fell asleep on the couch after running into his room and checking out his CD collection and the (empty) refrigerator.
Me, I'm still adjusting, but I think I'm starting to feel a lot more at home.
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Comments (9)
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Author
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.
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End the Perpetuation of Pity
221 People
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End the Perpetuation of Pity
Bless you for starting up this needed blog.although I dont have an autistic child,I do music therapy with both children and adults.They are all different,yet alike in their need for sameness and order.I spent NYE talking with a mom of a grow autistic boy and how many of the diagnoses and treatments are all wrong.
I teach a 13 yr old piano with PDD,and have for 5 years.He also is hyperactive.IN the beginning when I fist started with him,he couldn't attend for 5 minutes,so we just did improv and I let him lead the way.Now he is on a third grade piano book and plays in a recital twice a year.He has a gifted talent and I love working with him and seeing him grow.
Good lluck with all that you do.You are a good parent and a good advocate! we need more like you!
HEather Koelle,MT-BC
Posted by Heather Koelle on 01/02/2009 @ 12:27PM PT
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Yay Kritina! Things will work out well, good for you for moving to a broader arena.
I'll coninue to chime in with my views of adolescence and music. Take care in your new web home.
Posted by Linda Sullivan on 01/02/2009 @ 01:56PM PT
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Arghh! Kristina! Sorry for the typo.
Posted by Linda Sullivan on 01/02/2009 @ 01:59PM PT
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@Heather Koelle,Thanks so much for your kind words! My son has been taking piano for the past 2 years----we had a great teacher but he moved to another state. I've still been working on piano and also cello with him----still at a very beginning level, but it's always a joy to hear the music (and see how much he enjoys making it!).
Posted by Kristina Chew on 01/02/2009 @ 01:59PM PT
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@Linda,Believe it or not I was thinking of you as I wrote my comment! Please chime in as much as ever!
Posted by Kristina Chew on 01/02/2009 @ 02:00PM PT
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So good to see you transition this quickly.
Posted by M M on 01/02/2009 @ 05:28PM PT
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I was worried to find you were ending Autism Vox. (I guess I don't like change, either!)
I'm glad to find you here. My own Charlie has made incredible strides in the last few years, but adolescence cannot be underestimated as a, ahem, challenge.
Blessings to you and your Charlie xo
Posted by Sister Wolf on 01/03/2009 @ 08:21PM PT
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It's not the easiest of transitions---can one be blog-sick?
Adolescence, I suspect ' still be writing about it----Charlie's only 11 1/2 so there's quite a few more years ahead!
Posted by Kristina Chew on 01/03/2009 @ 08:47PM PT
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Kristina,
Great blog!
Your son is 11 1/2 and he's already taller than you?! oh,oh! lol.
I've been the tallest in my class since 2nd grade. Last seat, last row- Catholic school style!
formerly a Boston person- spoke to my family the other day- wishing they could send some thin crust pizza to Alaska!
(only north-east people will understand the pizza comment :) )
Posted by Scott White on 01/04/2009 @ 03:31AM PT
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