Sunday, March 22, 2009

Another Lesson in Autism

Autism has messed up my ability to emote. I wasn't fortunate enough to take on my dad's laid-back, easy going personality, but I certainly wasn't always a drama queen either. But I think that autism took away my ability to live my life on an even keel. Life with two children with autism plus one with a mind of his own is definitely challenging, but that doesn't mean that it's always stage 5 Red Alert. We do have good days, so I should be able to have days where I feel relaxed and just happy. But the behind the scenes life with autism involves stresses that I never could have forseen.

Spending hours every night on biomed research, filling out applications/evaluations/assessments
/goals/applications for service, managing two separate home-based ABA therapy programs, not to mention staying on top of the Occupational Therapy, Physical Therapy, Speech Therapy & Psych Consult appointments, driving a 100km a day playing chauffeur to and from schools and programs, attending conferences/workshops/support meetings to keep abreast of interventions and therapies, repeating tasks and instructions over and over and over and over and over and over again until the boys learn their new skill, providing additional support for a neuro-typical kid who doesn't have a typical life at all as the sibling to two brothers with special needs, crying over the bank statement because the cost of the special diets/supplies for therapies/vitamin supplementation/alternative medicine far exceeds the money that we're bringing in and ALWAYS fighting the guilt of knowing that the time spent in managing our behind the scenes lives is not allowing us to spend the time with the ones around whom all of these efforts circle- our three boys.

My friend and fellow autism-mom, Lisa and I were talking about this the other day. Our lives seem to be very goal-oriented. We operate at 200% from goal to goal, be it preparation for our annual MDT (where we make requests/proposals for funding), toilet training or finding a school placement as our kids transition from pre-school to the school system. We fight and we fight, we advocate, we beg and plead and persuade and defend and challenge, we tear down obstacles and we poke, prod, encourage and educate our boys through it all. It is absolutely exhausting. But when every chapter closes and we have that day or two of down time before we set off on the next challenge, we find that we are slammed with too much emotion and it's rarely productive. It's an empty sadness. This posting won't bring me any closer to figuring out why the sadness is there. But it's bad. We drop from the extreme giddiness of success to the extreme depths of despair.

So back to blaming autism. If it weren't for autism, I would be more neutral. I wouldn't bawl when I watched reunions at the airport and I wouldn't gush over small token of kindness. I wouldn't hurt so bad that my heart feels like it's ripping and I wouldn't love so fiercely that it warps my view of the world.

You know what? I just realized that I don't want to blame autism after all. I think I just described passion and I'm proud to be a passionate go-getter who cares enough to do something about 'it'. I guess once again, autism has taught me a lesson.

Yet another reason to be grateful.

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