Friday, November 24, 2006

Let's Win One for The Boy

I've never thought of myself as the "activist" type, but I am quickly morphing into an activist on behalf of my dear Boy. I'm not Erin Brockovich-ing it yet, but I have found that dealing with The Boy's SPD has changed me. I have always been very protective of my children, but The Boy has made me want to make people understand him, instead of just write him off as weird, obsessive, or just plain misbehaved. And I have found a little extra grace with other children as well. I used to always sigh a little breath of relief when the breakdown in the grocery store was not coming from one of my kids. Now I hear that same screaming and I wonder if the child is tired, hungry, or maybe so overwhelmed by the loud humming of the freezer cases that he just can't cope with anything else. Of course, it could just be a good, old-fashioned tantrum, but I've learned that not everything is what it seems.
I've also learned that we all need a little extra help, and so that is why I am turning to you lovely folks. I need your help to get SPD classified as an actual disorder in the newest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM), which will be coming out in 2011. It is the DSM-V, and it is THE manual for the diagnosis and treatment of emotional and developmental disorders for people of all ages. Go here for an in-depth explanation of the DSM, or go here for a list of the disorders that are included in the current edition, the DSM-IV. Many SPD kids fit into some of the categories listed in the DSM due to some of the symptoms and behaviors of SPD, but the ultimate goal is to get the actual diagnosis of Sensory Processing Disorder and a list of criteria defined in the DSM so that kids can get help as early as possible. Most experts agree that starting therapy before age 7 is ideal, but a lot of kids don't get that lucky. It is very hard to get the right kind of therapy, and to get insurance to pay for that therapy, when SPD is not classified as a disorder in and of itself. I consider it a blessing that The Boy had a speech delay, because it was his speech therapist who first noticed that maybe his "quirks" were something more than personality traits. And I also thank God that we live in Pennsylvania, where The Boy qualifies for state medical assistance based on disability and that the therapy he needs is covered, because not every state has as comprehensive a plan. Our health insurance only covers 30 speech therapy visits for The Boy's entire life, and his monthly speech therapy visits total almost $700, so you can see how grateful we are for the state aid (and that doesn't even take into account his occupational therapy costs).
So what am I asking you to do? I am asking you to go here and to sign the Individual Support Petition for the inclusion of SPD in the DSM-V. You have to print it out and mail it in, and time is of the essence. All of the proposals for inclusion are due in January of 2007 (even though it doesn't come out until 2011), and if we miss this deadline, we have to wait 25 years for the next revision. Since I don't want you to feel uninformed about something you are considering advocating, I've found a place where you can check out the latest SPD research, studies, abstracts, or other SPD sites. (There is also a group petition that I have printed out, and if I happen to see any of you in my daily orbit I may ask you to sign that, so please let me know if you have already visited the site and filled out a petition.)
If you decide this is something you want to do, I want you to know that I thank you so deeply from the bottom of my heart. The Boy would thank you too.


  1. I wish I lived in Pennsylvania . . .

    I can't get any help from the state for my son who has the same disorder, because he doesn't have at least a 50% speech delay. He refuses to eat instead, which is apparently not important to my state as long as he can talk.

  2. Anonymous8:32 AM

    Aimee- I passed the information on to Tom and he is going to try to garner some support for the petition from the faculty of your alma mater. Hope it helps.
    (Got my family to sign too).
    - Mirabella MOM

  3. Tara - thank you so much for all your help! (because I know you have so much time on your hands, right?!?!)
    Hope you guys are well!


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