Watching It All Go Down
Mama Deb | Wednesday, May 6, 2009 at 2:01AM A year ago my family moved nearly 2000 miles away from our comfort zone; the place where grandparents, aunts, uncles and cousins were no farther than a three-hour drive away. We moved because my other half and I have a wee bit of the gypsy blood pumping through our veins--always have. It was an opportunity to return to a place we'd loved...pre-children. I remember when my other half called to tell me that we could move back to the place where we'd see the ocean every day. My first response? 'Fuck no.' Honest to goodness it was! And yet here I am, one year and nearly three weeks in; wishing I'd not turned my first four-letter word into a three letter word, 'yes.'
If you subtracted from the equation my son, M, then you'd see a family (fairly) blissfully living on the west coast; a family who enjoys driving to the wine country, walking along the beach, and driving into the city. But of course it isn't possible to view this mathematical problem without my sweet soul of a boy, and so the outcome unfortunately equals something different.
I always say that you can't really know a place until you get there. I knew that the town we wanted to move back to didn't have a great reputation for public schooling, but in truth, there aren't many places around here that do. And so, since we had lived here once before, we chose what we believed was the better locale for our quality of life. In that year and nearly three weeks, I have watched my son go from a high-functioning child with an autism spectrum disorder (though I admit that I did not entirely agree with this label when it was given) to a boy who was privately assessed as being 'moderately to severely' autistic.
M was the child people always commented on as being an old soul. I said 'was,' didn't I? I should have said 'is,' but I worry that the old soul is leaving his body. You see, I have turned a bit pessimistic this past year. I have felt like a spectator to my own child. And it's not that I'm just sitting back on the bleachers enjoying a game dog and a cold beer (well, not always at least); but it's that things that are out of my control are playing out before me and I don't have the ability to change them.
I know, I know...we ALWAYS have the ability to change something that isn't right. But I am stuck in a place where I know that he needs to be in a school environement each day as opposed to being at home, and yet seeing that he resists going to that school every single day. It's heart wrenching when your child knows that making a left on a certain street means that you are driving to school. And why does he dislike it there so much? Unfortunately he cannot tell me. I have a very good rapport with all of his aides, teachers and therapists. They all tell me that most of the time he snaps out of it soon after he arrives. I strongly believe that if he could tell me he'd say that the number of transitions and the 10 (or more) authority figures he works with throughout the week are just too much for him to take. I know it would be fore me! I argued this at our latest IEP and was met with documentation of 'progress' and oohing and ahhing over how compliant and sweet-natured my boy is. I told them through tears to not mistake that compliancy and sweetness for him being in a truly appropriate educational setting. I also told them that I fear that because he is not a major behavioral problem to the classroom that he will fly under the radar. He NEEDS a private autism school so very badly. An autism specialist we hired last Fall validated this. But the private autism schools here are upwards of $72,000/year. Who in the world can afford that without the school district's assistance? Damned economy...if only it were so easy as to sell our house without losing our life savings and moving to a better place. (or is it?)
Strangely enough, since the IEP meeting and my voiced concerns of his lack of behavioral problems, my son has started to turn on the aggression and upped the anxiety a good 10 degrees. At 50 lbs. he is already quite strong and has given me (and his aides at school) a run for my money, daily, for several weeks. I am scared for his future (and mine) if we keep going down this same path. I feel him slipping from me each day and I worry that at the age of almost six years he is getting close to that point of no return. I have a couple of cards up my sleeve that I am relentlessly pursuing, but I am unable to keep the optimism I once had that it will all be okay.
The past year and nearly three weeks has taught me just how much life has changed for our family. I have realized that a place can't ever be as great as you hope if it isn't right for your child. I have learned what being a grownup really and truly is. And I have also learned that the love you have for your child can both screw up and enhance the plans you have for your life. I feel the need to add that caveat of 'I wouldn't change it for anything.' It's true, I wouldn't change having Miles for anything. But I will admit-being the unabashedly open book that I am- that there are days when I long for the ability to be spontaneous...to flit and fleet here and there as I please. To take my children to all of those places that I keep trying to take them to like that family (you know the one) without sweat, tears and staring faces. Game dog and a beer, anyone?
Reader Comments (3)
I"m sorry that the move hasn't turned out to be a positive thing for you and M, at least not so much yet. Your last line spoke to me......."To take my children to all of those places that I keep trying to take them to like that family (you know the one) without sweat, tears and staring faces." I completely understand that feeling with my son on the spectrum as well. I'll take that beer and the hot dog too, if you want to send one my way. :)
This post touches my heart. I have been reading your blog some. Maybe it helps a tiny bit to know that many kids, whether special needs have been identified or not, cause the same types of stress, confusion, and heart-ache, combined with love, that yours does Maybe there is no such thing as 'normal' anymore once you are a parent and your child is having troubles. May God Bless I will keep you in my prayers.My brother lives in the Berkeley area and the rest of us are still on the east coast.
Thank you both for your comments and well wishes. They are most appreciated!