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Friday, June 18, 2010

Pieces of our puzzle

Random leg pain. Low muscle tone. Spinal cord minor malformation. 

These aren't things most of us think about when we think about our children. They certainly aren't things we could fathom to be potentially a good thing -- in a way. 

But when you have a child with issues that are not easily explained by a clear and present diagnosis, you live every day with a variety of symptoms and issues -- little puzzles individually that you hope someday just might come together. If you can't put the entire puzzle together, you hope to at least complete entire sections... with just that one right piece of information. 

And so today, while I was happy knowing that we have finally got occupational therapy sessions scheduled and insurance asking only for weekly $20 copays, I was also dealing with what I have always thought was an entirely different part of our puzzle only to find out that it just might fit together... a slight bone malformation that many people have to no ill effect and our son does have... could be leading to multiple other symptoms/issues including his low muscle tone (at least in his lower body) and his random leg pain complaints that seemed to go beyond growing pains but for which we have had no explanation. 

And so, in our world, getting an MRI and possibly needing an easy surgery could actually be a good thing -- one answer in our stable of myriad questions. As always in these matters, maybe not. The other constant is that just when I get a little excited about the prospect of helping my son and making things easier for him... I realize that this too is not going to be easy! An MRI requiring lower body anesthetic if I'm reading it right... needles did you say? Oh yes that should be easy - N*O*T! Ugh. And an overnight surgery now that the boy is old enough to understand all that might entail... even though he might think laser surgery sounds cool... I can hear the shouts of "I'M NOT GOING!" already. Anybody else think I can stay overnight with him at the hospital? 

And so in our world of different normal, there is a ying and a yang. A problem for every potential answer and we hope... .an answer for at least some of our issues. Will keep you posted.  

Monday, June 14, 2010

Super Soaker Sunday!

You never know when your sensory child is going to have a "break through" or just do something unexpected considering their sensory nature. One of these interesting moments came for us this Sunday.

As the boy showed off his newest toy newly purchased from the Goodwill with his allowance, I cringed a bit at the enormous plastic gun looking thingie. I wouldn't say my first intuition was to be pleased. The boy alerted me to the fact however that it shoots water. Ahhhh thought I... the rest of us are going to be wet on a regular basis. Great.

But then since it was a warm and sunny day (one of our first this year), the kids and Dad headed outside with said Super Soaker filled with water and proceeded to squirt it into the yard for a start. I suggested (for my own fun) that it would be great if the kids ran through the yard and I shot them with water! What parent wouldn't enjoy this activity every once in awhile?! To my amazement, they agreed.

What happened next, I didn't expect. Both the girl and the somewhat water aversive sensory boy, ran back and forth with our goofy dog following behind, getting soaking wet with water -- to their delight. And even though the rule was to keep the water shooting "at the shirt zone," I missed occasionally but the boy said he even got it in the eye and it was just fine! Do it again!

Do I think this means his days of fighting getting his hair washed are over? No not realistically. Do I even think he'll spend more time in the pool this year once we get it up and the weather is warmer? Not really. And I doubt it will have a true impact on his willingness to put his head under water. But I can hope it helps, even just a little. And I can hold out hope of moving forward on this front ... one day (and super soaker) at a time!

Wednesday, June 9, 2010

Hurry up and wait...

Does anyone else get frustrated when you finally get a diagnosis or an evaluation with recommendations and then all falls silent. You finally get yourself up on that big horse ready to gallop, and everyone else seems to have put their horses away in the barn.  What is up with that? 

I know my boy needs more occupational therapy. The expert team of medical professionals that evaluated him know that he needs more occupational therapy. But still we wait. Waiting to hear if our insurance actually pays for the therapy or just the evaluation. Seems only logical that if you are willing to cover an evaluation to see what a child needs, that you would then cover the needed services that are indicated by the very professionals who are in your network. Wouldn't it? Or am I just daydreaming about what should be rather than what is in the world of medical insurance these days? 

I've read the books (all but one) recommended to me by the occupational therapist who did the evaluation but I can't get us in to see her for the work. They clearly tell you that a sensory diet is a good thing, but that you should work with a professional to get it just right for your child's particular needs. 

And so with Summer break upon us, we are waiting... for the genetics referral, for the occupational therapy answers and scheduling, for the ear, nose, throat and orthodontist visits (scheduled for August). I'd really like to move forward but I can't do it all alone.

In some bizarre way, it seems it would be easier if we did have anxiety issues since mental health parity is now the law of the land. Or maybe that is just another belief to which I'm silly enough to cling.  Being the parent of a kid with SPD is a lot of waiting and trying and waiting some more and trying where you can to move the entire process forward to get things done for your child. Maybe it is time for me to try communicating with the OT by email again... maybe we can come up with some sensory diet items to start sooner than the therapy itself. I'm not very good at waiting!

Saturday, June 5, 2010

Sensory Processing Disorder - a family affair?

Each and every day I see evidence of my boy's SPD. Whether it is having to wear his seamless socks or no socks at all, or having to be carried quickly through the doors of the store on the off-chance the alarms will go off, he clearly is sensory defensive. 

When I think about our family, I think of my boy as the one with sensory issues. He is the one with a diagnosis - it's true. However, lately I'm beginning to see each of our own sensory behaviors. Dad doesn't like the textures of things like guacamole or refried beans. I seek comfort in rubbing my fingers together in a repetitive way and get easily overwhelmed by loud whining and crying (who doesn't?)... but could we all have an actual diagnosable case of SPD or just little issues? 

As I sit typing this, I am looking forward to the day I can finally seriously have my daughter evaluated for what I think just might also be SPD. It looks so different in her that I've often assumed it just couldn't be. The boy avoids things and she seeks them out regularly -- sensory seeking anyone? And now I realize things like her shyness in the beginning of things and her extreme concern about what others might think of her, could all be related as well. She melts down and ends up in huge tantrums of enormous proportion... emotionally overwhelmed, unable to self-sooth. Ugh... could I really have two SPD children to parent? 

I am beginning to think I might. Stay tuned.