4C, 4 Momma, 4D, 4A, and 4B

4C, 4 Momma, 4D, 4A, and 4B
Most of the Four me (and you) fam

Friday, February 3, 2012

"Journey to DX" series: part 5, "the holy grail"

What is going on with my kid? Why does she act like that? What's wrong? Is it my fault? Will she ever go to school? How do I help her?

Many times, a parent who has a child with differences asks some of all of these questions (and more). While that awful "label" business lurks in the background (and I've told you before why that "label" business is so damaging to an ASD child), these parents just want to know. Actually, they need to know.

For many of these parents, a diagnosis explains things. A diagnosis lets the parent know that she's not crazy, it's not her fault, her kid needs help, and she's going to now be able to secure this help (more on this in an upcoming post about IEPs and 504s). A diagnosis lets her shut strangers and family up about her part in her child's behavior. But, I want you to know, if you're just starting your journey, the reality about this "DX is the answer" problem.

For me specifically, I needed to know, for myself, that I hadn't caused 4A's behavior, that I wasn't to blame. I also needed to know how to get it to stop. I vaguely remember having concerns about school and friends and fitting in, but she was only 2 years old at the time. So, my real needs were "please tell me that I didn't cause this" and "please make her stop." Crude, perhaps, but true, nonetheless (and, if you remember, I have vowed to always tell you the truth, even when it ain't pretty).

You may have other concerns, but my suspicion, because I've been there and read a LOT and talked to a LOT of people about this issue, is that you want to know "what it is." You want to know what to call what's going on with your kid. When people ask questions about your child, you want to have a name to call it. You want to shorten that explanatory conversation that you've had a million times by now. You want to be able to throw out one word. Been there. I understand. I know. My heart hurts with yours. Consider yourself virtually hugged.

Diagnoses are helpful. Remember, a diagnosis is what allows supports at school, IEPs and 504s. But, I'm going to tell you something now that may burst your bubble but that I desperately wish someone would have told me. A diagnosis accomplishes very, very little.

Yes, it does salve your hurting heart and soul and confirm that you aren't crazy. That is worth its weight in gold, of course. But, what it does for your child is really not all that much.

I have tried to tell you gently before, and I will try again (perhaps less gently but still with love and compassion) to tell you now, that no one person, no one diagnosis, no one treatment will solve anything. YOU are the only one who can do anything about this. You are your child's advocate. You are your child's case manager.

A diagnosis may, in fact, narrow the range of supports and information at which you should direct your attention. But, a diagnosis does not make your child stop. It actually doesn't help your child do anything. All a diagnosis does is let you sleep at night.

That is not to be trivialized because I have been where you are. But, what I wish I had known was that a diagnosis wasn't the magic pill or secret or thing that got 4A to stop; her condition is neurological; as such, it's continually on-going and ever-present; it never will "stop" in the way that I had wanted or dreamed about back then (although I know now that my thinking back then was really, really flawed).

4A's diagnosis really just confirmed everything that we had already been doing. I remember asking the developmental ped what her Asperger's diagnosis (at age 5 and again age 6) meant that we needed to do. Meaning that I said, "Ok. She has Asperger's (which we suspected and Dr. Steve and Dr. G KNEW). Goody! What does that mean we get to do or try now?" Developmental ped's answer? "Nothing. You're already doing it." Meaning that all of the therapies and interventions and supports and tricks-of-the-trade to manage her symptoms and improve her outcome were already in place (and, for her, had been in place for years).

Now, this makes me realize or admit three things. One, not all families are as lucky as we were. Not all families are able to or capable of or supported enough to start as early as we did. Second, perhaps the doc who diagnoses your child will have another thing or treatment or med to try for your child once the diagnosis is established. Third, not all families are lucky enough to find a Dr. Steve who can teach them how to get inside their child's head to see the world from her perspective and to, consequently, become intuitive where her needs are concerned. I can only share our experience. Please remember that yours will look different.

But, what I hope this helps explain is that while you're waiting for that diagnosis, please don't be seduced into thinking that that word or words will do or solve anything. You should be treating and trying now, while you're waiting. Waiting for a diagnosis to try to figure out how to treat or medicate or help or support is actually quite backwards. You didn't cause this, but you get to fix it. You need to start trying to fix it whether or not you know what "it" is yet. As for what to try, I recommend talking to other parents who have kids like yours. Even if your child doesn't have a diagnosis yet, you can still attend Autism Society of America meetings to get information and find resources (they won't judge you or be mad at you, I promise; they'll want to HELP you). You can still read and ask questions of experienced professionals and research.

As for how to find the "right" docs to help you, you'll have to stay tuned.

2 comments:

  1. I love that I found this blog! My daughter is 7 and was diagnosed with Asperger's just over a year ago. I love your style of writing and it sounds like our girls are a lot alike! Can't wait to read more!

    ReplyDelete
  2. Welcome, Angie! I always love to hear of other Aspie GIRLS!

    ReplyDelete