Lately we have been tiptoeing around a new diagnosis. Frankly it’s driving me crazy because I keep getting dismissed.
You know how you know “something” is not quite right, call it your “mommy gut” kicking in. But all around you doctors and therapists purse their lips together and shake their heads. They have been shaking their heads about this one for about 2 years.
Finally this week his OT is admitting, well he “might” have a “slight” problem. To me thats like being “a little pregnant”…either you are or you are not. There is no room for middle ground.
Ah, but there is.
When it comes to SPD there appears to be a lot of grey. I am not good at dealing with grey. I want to know who to call and how to solve this new problem. Stop it. Reverse it. Or at the very least, let’s please work together to diagnose it so we can move on from the grey area.
So for now we just call it an “issue”.
It appears that because of his age (almost 3) we are not going to worry about it until he starts school in the Fall. And by we, I mean the therapists. I get to do what I have been doing, keeping an eye on it while trying not to Google it and freak out.
And realistically, I know this is not a “freak out” situation, it’s not life or death…just something else to add to my plate of worries.
My plate is a little full at the moment, ya know with all the actual life or death stuff. Anyone interested in a helping? 
How do you deal with a new diagnosis?
Denial? Head on?
Janis chronicles her son’s medical journey at Sneak Peek At Me. She is an advocate for medically fragile children and families living with a rare disease diagnosis.
For me it’s the not knowing, but knowing that I don’t like. Knowing something is not quite right, but not having a name, not know what that ‘not quite right’ is. Once that diagnosis is made, I might be a hot mess for a while, but then you can move forward with a goal, a purpose. You can learn all you can and do what’s best for your child.
we vote for head on – denial hasn’t gained us anything thus far
SPD sounds scary. But I know plenty of people (kids and adults, and quite frankly, even me) who have sensory issues and still manage to function quite well.
Alex’s first OT told me I should seek out a good OT for my own issues, and I declined. The issues that I have don’t impact my life too terribly much, and I’ve developed coping skills that are basically functional…as long as we don’t try a vegetarian or sushi restaurant for dinner.
Find a good OT that specializes in sensory stuff. Read “The Out of Sync Child” – I haven’t yet, but it’s been recommended to us for Alex. Find ways to get the sensory input he craves, and ways to practice with things he doesn’t like.
You know Austin better than anyone. Look at the things you already know, and build on them.
We know, for example, that Alex is less likely to cause mayhem and destruction if he’s had time bouncing on the ball, or has been hanging upside down, or has been swinging in a swing. If he’s getting into trouble, it’s a sign he needs attention and input – he’s seeking it for himself in non-productive ways, and we’d better find a better outlet, quick.
Our new favorite for Alex combines a very motivating sensory experience with one he’s avoiding: his really big (2 1/2 foot diameter) exercise ball, in the grass. He loves the ball, loves bouncing on it and rolling on it and turning himself practically upside down….and he doesn’t like walking in the grass, and can’t stand sitting in it.
Good information in the first comment. This post seems to be more about your need for a definitive diagnosis. Your son’s behavoirs are part of his developmental profile. Choose who’s advice you will follow and … Consider following the blog Hartley’s Life.
We deal head on too. We’re very proactive around here. Also, SPD is important to learn about (in each individual’s case) because it varies so much from person to person. My dh has processing issues of his own from childhood traumas. It’s just important to communicate or in the case of a younger child find out what he really doesn’t like and find ways to help him cope with it.
There are so many sensory issues, many doctors are not up to date on the diagnosis for them. Plus, the pathology is evolving. Some see SPD as a symptoms of a bigger problem and some think they’ll grow out of it.
I suggest searching for a developmental pediatrician and an occupational therapist that is certified in DIR/FloorTime. You will get a much more definitive plan of action from qualified specialists.
It is uncomfortable to move from one clinic to another. It will get easier with time. Ask other moms at preschool and therapy who they see (neuro and ped especially). You need a doctor who is concerned about your child as your are. Keep fighting, mama!
Our 4 yr old has SPD, but thanks to an awesome team at his school (OT, teachers, ABA therapy, etc.) it can be managed. I don’t think it ever goes away, but the kids (and their parents) can learn great coping strategies to help with even the smallest details. Things like loud noises, crowds, smells – all these things bother my little guy. But now we know, and that makes all the difference.
I echo the suggestions of getting The Out-of-Sync child and looking at Hartley’s website. I have a link to her site on my blog.
Good luck. Many of us are with you.
We are part of the ‘head-on’ crew as well…
In the past we have taken the ‘conservative’ approach with new diagnosis’ (trying to ignore it and hoping it resolves itself) and it has been nothing short of disasterous (severe mito-related neurological regressions literally led to loss of brain tissue – as devastating as it gets).
We’ve learned it’s much better to take the bull by the horns and wrestle with it.
Even if we’re destined to lose, I’ll be darned if we don’t go down with a fight.