May 30, 2010

Bigger Stronger Wiser Kinder

(Note: The first paragraph of the following post was saved as a draft in April, I was too steamed to finish it, and so now that things have cooled down a bit I'm back.)


Since it is Autism Awareness Month, I am going to post more frequently about Autism than normal. I do have a lot to say on the subject so bear with me. We got Gabe's IEP (Individualized Education Plan) today from the school district, it looked okay, they do a pretty good job, with exception to the fact that they referred to Gabe as "Jonathan" TWICE! What the...? That makes me wonder, did they just copy and paste from another child's IEP, or are they thinking of similarities to another child when making Gabe's goals, or have they just lost it? I have read the horror stories of other parents of special needs kids fighting tooth and nail for the best possible services. I had a fight of my own in our last school district who was sorely under-funded and flat out told me biomedical treatment for Autism is just "crazy and doesn't work" and "don't listen to anything Jenny McCarthy has to say". WOW! I am not some aimless follower. I have researched and read, and read, and then read some more. Is everything Jenny M. says gospel? No. And she flat out states that those treatments may not work for everyone, but they worked for her son, so to have her son feel better, to engage, to recover...Why would you not want to share that information. I would/am shouting it from the rooftops. I know certain things have worked for my son, so I'll always be vigilant to improve his life. Both of my child's lives for that matter. It irritates me so that everything has to be so black and white, and the gray is just discarded. Well, that was quite a tangent.

Now May and a little less angry, but still not complacent, I will continue. Gabe's team and I are not on the best terms. We are cordial, and we'll leave it at that. Gabe (or should I say Jonathan) only has one more session left with the school district then we are done for the summer, they only offer summer services to kids they feel will severely backslide. Anyway (teeth grinding). I bumped Gabe's therapy time up in private services instead of fighting the morons in the district for mediocre services. Mean, yes. But when it comes to my kids....you understand I'm sure.

So, I've got to change gears here and flip this post so it ends on a more positive note. When I started this post back in April, my intention was to write about some of the "gold nuggets" I learned at the PACE Immersion workshop back last November. At the final session (parents only) we discussed as a group what we had taken away from the week. I think one of the most powerful messages for me was that as parents of children with special needs, we are in survival mode. Our intuition is broken, because frankly, we are just trying to keep peace in the family, make it through the day, or meal for that matter. Our barometers are going nuts constantly because we are in information overload. So for me to hear that and that I was doing okay was a great comfort. Not only did I learn how to  better parent Gabe, but how to better parent my NT child too. Here's a bit I took from the experience...

-Don't try to control behavior. That will always lead to more stress, more meltdowns, more, more and more. Sometimes, you have to allow the child the chance to work through the situation and as a parent you have to allow the tantrum so you can connect with the child on an emotional level and let them work through their emotions and find comfort and closure.

-Too much information can be paralyzing. Been there, done that. There is so much out there on treatments of Autism, ABA, DIR, RDI, DAN, OT, ST, PT, and SOS!!! Finding a jumping off place can be terrifying. What is the right way? I think the only right way is what works for your child. No child with Autism is alike, so gray is all we know as consistent. It's tough right after diagnosis when you've cried for 72 hours straight, given an apology, a packet of 300 resources (along with a good luck) by a team of experts and expected to line it up, ASAP. After all, it has been pounded into your brain the last 72 hours that early intervention before the age of five makes the greatest impact.

-Don't avoid the chance to connect. That is, connecting during the hugs and tickles, and during the tantrum. With reassurance, or deep pressure, or whatever it takes.

-Let the child tantrum, don't stop it, so they can deprogram and work through the emotion then help heal the trauma. This was a hard, still is a hard lesson. Patience, oh my so much patience. But our hour long tantrums are now down to 5 minutes. It has been a long hard road, but so worth it. And Gabe is learning how to feel and deal with his emotions.

-Talk less, teach less, and initiate less, so there is room for the child to do it. If I'm always labeling and teaching and asking questions, why would Gabe even try? Especially since Gabe has apraxia, it takes him a long time to answer, ask, or even speak. I had to learn to be conscious of that; it took the team telling me I was doing it for me to realize I wasn't giving Gabe the chance.

-Give Gabe what he needs, not what he wants. Enough said.

-Gabe is telling me everything I need to know without saying a word. This always makes me cry because it's true.

-And lastly, as the parent you have to be Bigger, Stronger, Wiser, and Kinder.

Here is the website for PACE place if you're interested.  It was worth it.
http://www.paceplaceinc.com/

14 comments:

  1. I love the t-shirt in the picture! As an SLP, I think it's VERY important to listen to the parent...you're the one who knows your kid the best. I had a grandparent bring in a list of things they wanted to see her grandchild do communication-wise, and, while some things were appropriate, some were too high for him right now. So,we're working on the steps to get him where she wants him to be. I think I was as appreciative as her for bringing in the list as she was of me for looking at it and incorporating their wishes.
    There are guidelines for ESY; I'm sure you could find them on your state's website. As you know, the purpose is to maintain skills over the summer, not for the student to progress. Our usual time for ESY is 1/2 of their usual school time, so if a child receives services 2x/week, he would receive that same service 1x/week. I absolutely HATE to hear about a school team not taking the parent's input seriously.
    Keep fighting for your son: We're in this together!

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  2. Thanks for the encouragement Mary! The school team and I used to get along VERY well, and they were open to my input. But I think as they have been caught in a few unprofessional incidences, the team lead feels more embarrassed than anything and I think that's the reason for the "distance" in the relationship if you will. I'm not giving up anytime soon. Also I just have to say how absolutely fantastic on the most part the people who work with Gabe are. It takes a very special person to help children with disabilities:)

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