Most people probably haven't. Unless you or your child has it!
And even when I came to the conclusion that it was most likely what had plagued Lindsay most of her life I had no idea how far reaching it was into her daily life. And our pediatrician was not anxious to help us with a referral. I had *hinted* several times that there were issues (mainly with certain garments-including shoes and socks) and never got anywhere. She just intimated that Lindsay needed to deal with it and that she was a drama queen (not her words, but her attitude told me this).
I agree that Lindsay can be quite the drama queen. And I do often tell her to "deal with" some things. Because that's life...but if there is a true problem and it's diagnosable and help-able...then we need to do something about it.
And the more I read the more discouraged I was. Because the longer you let it go the worse it gets and the harder it is to "treat".
There is no magic pill.
Even therapy has it's limitations.
But it's your best bet!
So, I called the pediatrician's office, found my backbone and calmly but firmly stated that I NEEDED a referral for an OT (Occupational Therapy) evaluation.
She gave it to us! Yahoo!!!
Then the OT office calls us back and, wouldn't you know it, our insurance doesn't want to cover it. Well then.
Thank GOD that her associated called back and she FOUGHT for Lindsay to get her OT!!!! And she got it! 11 hours of it! That is amazing!
Now, this is when I find out what things are related...I was shocked!
I thought it was all about clothing. Nope.
- upper body weakness (she couldn't even do one girl push-up. I'd have just thought it was lack of effort)
- poor handwriting due to the upper body weakness. Her arms/hands are shaky so she overcompensates by pushing hard on the pencil/paper and her arm wears out and writing becomes progressively sloppy!
- car sickness. she doesn't have it awful...just enough to make her very miserable on "sensory" days (some days are worse than others)
- joint stiffness. she complained of her joints being stiff or sore and having to "squeeze" them (ie clenching fists or tightening her shoulders...we often thought it was anger or attitude!)
- absolute inability to tolerate any kind of binding clothing. including but not limited to some undergarments, jeans, shoes, socks, shirts with certain cuts or fits, etc. I always thought that if I just made her wear the clothes she'd eventually adjust...nope!
- lack of balance/spatial awareness sort of (if the car sits at a tilt, even if it's sitting still, Lindsay is in misery!)
So, what is it? Very simply it's when the messages to the brain get mixed up. They're disorganized. And jumbled. And something that should be a minor discomfort at worst becomes "like being tied up" or something else equally disturbing. Their brain goes into almost a panic mode when confronted with the situation that they know makes them uncomfortable. It's not reasonable. It's not rational. But it's real to them!
In talking to another mom (a friend) who has a child with SPD we have shared experiences...the affected person becomes almost like a wild animal that has been cornered.
Lindsay's therapy included (but was not limited to): brushing therapy. It's a small brush that you are supposed to brush their skin with to reprogram the receptors in the skin...we didn't follow the regimen as closely as we were supposed to but there was definite improvement and she liked the therapy too! Joint compressions for that tightness in the joints and putty that she had to manipulate in certain ways for a certain amount of time in a day....plus whatever they did back in that therapy room! :) I know they played games and used different tools to increase her tolerance to swinging motions and such...
Our next thing is Omega 3 Fish Oils. I have her taking one per day right now of a natural brand...and we will also soon include Inositol. It's supposed to help organize and calm those receptors/reactions.
My friend said she saw as much improvement in her little girl with those things as she did with the therapy-in fact MORE!!!!! I'm excited! And so is Lindsay.
We do see improvement that continues on a regular basis. The ability to wear certain clothes and not even think about it-until she realizes she did it, then she's so excited!
Next up: I see signs in Haley. Lovely. ;) At least this time I have a CLUE.....