I receive letters a lot from other moms who are going through what I have been through – and am still going through. Diagnosis, confusion, questioning, school issues – you name it.
But I got one this last week that surprised me.
Remember the Oprah thing? You know, how Oprah had a boy on her show with a mental illness, and because of the way the show was taped/cut it made it seem like this child’s behavior – aggressive, dangerous, and out of control – was all due to Sensory Processing Disorder?
Yeah, that one.
There were so many responses from parents who were terrified that their child’s SPD was going to turn into – that.
But the letter I received was a little different. Here is what it said,
“To be honest when I saw the recent show on Oprah, I was excited about it. I could see my child in the little boy on the show, especially her rages and thought this is so great! Finally I can show my family and friends what SPD is. Then the next day on blogs and forums I started reading about how upset people were about the miss representation of SPD and that the boy clearly had other things going on. This has lead me to be confused when it comes to my child.”
That threw me for a loop.
Why? Because what about families like mine? Those who had a diagnosis of SPD, but clearly there was more going on. What about them?
I am concerned that there are people who need to keep seeking help for their children – even after a diagnosis of Sensory Processing Disorder. And for that reason, I am reprinting my letter back to her.
Her question, “I have read/heard you talk about your son Gabriel, and how his first diagnosis was SPD. And that he later received other diagnosis as well. When you describe him, I recognize lots of the same traits in my child (4 1/2 years old). My Question is; when did you get the other diagnosis or how did you know it wasn’t “just” SPD?”
My response ........
I recently asked on Facebook how stay at home moms of special needs kids would answer the question, 'What do you do all day?' and received some awesome responses!
My favorite was this one, from Jen, who said:
Jen wins the prize for best response to the 'What do you do all day?' question - here's what she wrote: Plain and simple. I put out fires (that makes me a fire fighter), I save the worlds of my boys (that makes me a hero), I have decoded Autism/ SPD/ ADHD (that makes me a translator). I teach my family all that I learn (that makes me a teacher) I cook, bake, decorate (that makes me Martha Stewart), I take care of the dog, cat and fishies (that makes me a vet) I work on the yard and flowers (that makes me a landscape artist) I clean the house (that makes me the maid) I suppose you could otherwise say I am forced to do the impossible each day and you know what...somehow I make it look pretty damn good by the end of the night. Now...if someone was to ask me when the last time I went to the Dentist, Gyno, or other doc beside some Minute Clinic / Urgent care....I don't think I could recall when the last time I took time for myself. I tried it once but clearly it didn't take, LOL.
But then I awoke to an email from my good friend Stark. Raving. Mad. Mom. who took the question I posted and RAN with it! Here's her hilarious response to the question about what she does all day - complete with brass balls image. Awesome.
I also thought, since I asked all of you what you do, I would share a post from me from 10/26/09 where I detailed my day. You can read it here if you have time - because very much like SRMM's post, mine is long - because as every special needs mom knows - there is NEVER a short day.
For those of you who are wondering why I asked, the original question was prompted by me being forced to justify what I do all day to my soon-to-be-ex-husband's attorney.
And now I must go - I'm getting my boys ready for school while Gabe has a full psychotic break over not having milk and Nick is stuck trying to manage his ADHD and get his lunch packed all while Matthew stimms on a TV show and yet somehow I need to get in the shower ... Because I am meeting with a mediator and my soon-to-be-ex-husband in less than 2 hours to go over *just what it is that I do all day* in an attempt to be able to continue stay home with my kids. (Insert swearing) Maybe this calls for a new urban dictionary entry? ;)