Saturday, October 23, 2010

What does BLANK equal?

I recently found the most amazing holistic chiropractors. An amazing husband and wife team who work with adults, children and families including children on the autistic spectrum. I had heard a lot of great things about them from friends at Roots in Leominster. But, I kept putting off making an appointment. Lately, I can't even look at the amount of money spent on copays, meds and holistic (and very necessary) interventions. And then, there's the time and logistics involved in getting to all of these appointments. With two boys on the spectrum--neither of which has a shortage of medical issues, it seems, I'm very busy organizing it all.

I've been working on making peace with all of this and the many layers involved. Some days I'm "there"...proud of my accomplishments, or the boys' progress. And other days are very different. They are dark filled days of anger, resentment, frustration or guilt. Friends and family of neurotypical children--or that don't have children, tell me I'm a great advocate for my children...that they will succeed because of me. Maybe. I'm my own worst enemy at times, perseverating on all of the information I can gobble whenever my keyboard or IPad are within reach! I love information in general and feel it's essential to dealing with autism.

But, it's the same love of the information and ability to "sort large amounts of it and synthesize it" that makes me aware of something else. That, maybe all of these things I am doing are going to make all the difference in the world for my children. Maybe they will have friends, girlfriends, get jobs, be independent. I need to preface this by saying that I am not a pessimist or an optimist. There, I said it. I--since high school--consider myself to be a realist. Someone who, looks at all of the information in front of them and with a little intuition thrown in, makes a good faith judgement. Sure, information can change and you have to revisit the equation and make the proper adjustments, but it's how I function, good or bad.

ONE of the things that I do not like about autism--I chose not to write "hate", not sure why--is that there does not exist a specific "equation" to help my boys. That sentence makes sense to me but if it doesn't to you, I mean to say this: OT + positive reinforcement + good IEP meetings = BLANK.
Social Skills + eating clinic + different vaccination schedule = BLANK. What is the blank? Is it progress? Is it better behavior? Is it healing? And, is it long-term? Now I know that there are lots of people out there whose children have ranged from BLANK equaling "no change" all the way to BLANK equaling "healed"...whatever healed means for autism...but what will it mean for each of my boys? The suspense is killing me.

So, my husband and I chose to take the boys out of organized OT so my youngest and I could affors to see the holistic chiropractors who are producing amazing results. They found issues no other doctors were able to find in either my son or myself and are addressing those issues. I am excited to bring my older son there on Monday for an evaluation. But, now I have become an OT. I hope I can do my best with the boys--I have yoga balls, a small trampoline, weights games AND a prize box. I will try and put together an organized session for each son. And I will do my best.

Maybe the next neuropsychological evaluation will give my youngest a new label? He's been making progress. Maybe it will stay the same. None of that even makes sense to me. Autism is such a strange animal. Maybe there's also mental illness. Maybe there's not. Maybe food allergies. Or maybe just food sensitivities. Maybe there are significant physiological issues or maybe not. Some people say they have seen kids start out with the label of PDD-NOS who then graduate high school indistinguishable from their neurotypical peers. I want to know what the means. I know the literal interpretation. So, in that specific case, cumulative therapies applied + the neurological development + ???? = indistinguishable from neurotypical peers by 18 years of age. And yet for many, the first part of the equation might be the same, yet the result remains unchanged. And, although I have always been interested in psychology, sociology and helping others, I don't think I will ever make peace with this equation. Connor has been making progress with the chiropractor, and his constipation is lessening. Like they say in the Rocky Horror Picture Show, I am anxiously waiting to see what his "blank" equals with much antici-PATION.

No comments:

Post a Comment