Saturday, May 04, 2013

Surfer's Healing

These folks need our help.

These camps fill up so fast, you have to plan your day around the registration opening- and hope they open not one minute early, or you're wait listed. Like us.

Why are they so popular? Because they make a difference. A huge difference. An oh-my-God-my-kid-has-to-have-this difference. For us, it was a breath my Joey desperately needs from his anxiety and depression, from the frustrations of just trying to be himself in a world that, despite our best efforts, simply does not accept him for who he is. A world that seems deliberately designed to thwart and frustrate him.

Why are they so important? Because they do this:

See that relaxed, smiling boy? We hadn't seen him in a while.

The program is entirely volunteer, and entirely free. That's right- free. They are serving families already overwhelmed with costs of therapy and care, therapies and interventions that medical insurance often sees as "not medically necessary" (because apparently being able to do things like speak, move, and interact are not medically necessary- what?) or "experimental" (translate= the insurance company hasn't updated their library of studies done in years, and are perfectly willing to completely ignore the progress and improvements your kid has made with an intervention) and the schools are too overwhelmed to offer. Even small accommodations can cost money. We've just had to put up a new gate to our yard because Joey figured out how to climb over the old one- that's $700 just so we can let him play in the back yard. Our house has double-key locks, we had to install them. We may have to install a security system just to keep Joey safe. We've been waitlisted for Project Lifesaver since August; we've had two major bolts since then (when he was gone for more than 20 minutes and we had to bring in others to help search for him, and he was found more than a quarter mile away) and several smaller escapes since that August incident. To get one ourselves? About $150 for a device, plus a monthly service fee. And even the best of these devices - downright cheap compared to the ones used by the police and Project Lifesaver- is a gamble for whether or not it will work properly. Compared to other families we see, we get off fairly inexpensively, too. We just do OT/social skills group and speech/language, plus these smaller interventions. We had to pay out-of-pocket for a round of vision therapy (that was AWESOME). But we're not on special diets or doing horse therapy or art therapy or music therapy or having to get a service dog. Joey doesn't have any attendants at home (except me and JoeyAndyDad and Grandma). We don't get respite care. All of those things cost money- a lot of money.

And no, there aren't huge studies to say this program makes everything all better, or any long-term improvements. But I can tell you, it makes the world a better place- even if it is just for half an hour, for one boy. A Joey-Boy.

Please help.

Thursday, May 02, 2013

Where The Air Is Filled With Sandalwood

I just finished filling out a pile of questionnaires, screening tools, and parent evals for Andy, I still find it difficult to grapple with ADHD and how it affects Andy. I think because in so many ways, our life is "normal" for us, I still have trouble understanding that my experience of parenting is so far off the beaten track. I am in India, not Italy.

We are in an odd place for out family right now. One of my jobs has taken a severe hit, and I in definite danger of losing another. On top of that, the job that has been the stopgap for some of this is ending... today. Jus gave the final exam this morning. Eep. This puts a serious damper on planning for summer and therapy schedules. My current plan is for me to eat less and cook more as a money-saving strategy (and a health strategy- I really do not need a bedtime snack. Seriously.)

At the same time, my boys keep growing, and it is time to plan for new experiences and getting them re-familiar with old favorites. We need to start thinking about colonial history when we go to Wakefield and Williamsburg. We need to explore more science a Skyline Drive and the Smithsonian. WE need to start appreciating and understanding the world around us at the next level, beyond that early recognition of novelty.

That is more difficult for my kids than for most. It takes more planning, more preparation, and more readiness.

Andy has a field trip to the zoo coming up. Hes asked me to go. If I don't get picked as a formal chaperone, I will likely drive up on my own. I will have my Zoo Bag ready and with me: extra water, fruit snacks, crackers, cheese sticks, a noisemaker, a squishy ball, paper and markers, a damp cloth, wipes, and a spare set of clothes and sunglasses. Most of my friends haven't carried a Zoo Bag with them to the zoo since their kids were infants. They often toss some wipes and a camera into their purse or pack and off they go with their nine-year-olds. THey aren't fighting a constant battle against Glassman, RockBrain, and HyperBunny. Their kids remember their underwear.

All too often, they don't understand the difference between a high-energy kid and a hyperactive one. They don't get that there is more to ADHD than just bouncing off the walls. And they aren't afraid to say it. Society gives them license to say it. Not only is my kid's special need invisible, it is openly denied to exist at all. Yay, me.

Looking down those questionnaires, the vague "often/sometimes/never" of screens and evals, knwing that each and every answer needs qualification and context, more specific information to really understand, you want to think the folks who score them will understand. I have learned otherwise- the hard way. Hard for my boys.

The good thing is it also gives me a better idea of how to help. Thee evals are reminders of skills and challenges, things that may need to be addressed and supported that we might forget are challenges for my guys. They serve as a reminder that expectations should be high, but you need to plan for success- it doesn't always come intuitively. That more often than not, we are still packing our Zoo Bag for situations other families have long taken for granted and easy. We need to be prepared to succeed. After all, India is wonderful, and beautiful, and full of life, color, and the scents of ginger and cardamom. We enjoy it as it is, as long as we don't expect it to be the Mediterranean.