I admit, what I’m going to share with you now I’m doing so with fingers (and toes) crossed, summoning every “anti-jinx” spell my eight-year-old has ever conjured up. It seems the medication change Justin’s neurologist made ten days ago is starting to kick in, and the OCD that has relentlessly taken over his life the past several months is beginning to abate. It’s a reprieve for him, a reprieve from his near-constant misery as he tried unsuccessfully to angle objects throughout our home just so, to put things in places that made more sense to him but ultimately weren’t right either. His organizational obsession seems to have abated a bit, and we still have a week to go to see how fully this reprieve has taken effect.
I admit, it’s a reprieve for all of us too.
I get a lot of questions from people regarding my attitude towards my kids’ autism, most of them regarding how I manage to often find the silver lining in even the most distressing situations we’ve faced as a family. I could lie and just tell you I’m awesome, but the truth is I’m simply hard-wired that way, a gift from my parents. I am the girl who at nine was told her parents were separating and immediately envisioned how I’d be decorating my new bedroom, and how I’d probably get two family birthday parties now. Looking for the bright side has served me well, as the alternative really isn’t that appealing.
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But I will share with you there have been times I’ve been so overwhelmed I can’t summon the energy to look for it.
I’ve gotten better at weathering these sometimes soul-sucking times. Over the years with our boys we’ve made it through extended periods of insomnia, intense gastrointestinal distress, severe food allergies. We’ve powered through my eldest son’s aggression which was undoubtedly the worst period both for him, and for us. We’ve dealt with impulsivity issues, and conflicts with friends. My husband and I watched as our youngest son stopped speaking over a period of three weeks and witnessed the light fade from his eyes. We’ve weathered it all, just as we have Justin’s extreme OCD the past few months.
It wasn’t until a few years ago I figured out exactly why all these issues hit me so hard, why sometimes I felt almost incapacitated by my sons’ suffering. Part of it was that they were in pain, sometimes physical, and that is a terrible thing to witness in your own child.
But part of it was in my mind autism is forever, and so this suffering must be too. Illogical I know, but at the time when my husband and I were just trying to make it through each day the weight of it all was suffocating, and there seemed to be no end.
And what I’ve learned after many, many years of enduring almost paralyzing cycles of difficulty, that so far (at least) just like with most neurotypical children, the difficulty will pass. It will most likely be replaced by something else (so
I’ve learned to fully enjoy the reprieves,) but whatever it is we’re enduring will come to an end.
I’ve learned to keep that mindset forefront when dealing with whatever my sons are going through, and I’ve learned equally importantly to take care of myself too. The latter is key. There is definitely a bit more down time, more frappacinos and just more fun built into my daily life.
A happy mommy is a happy family.
It’s not always easy to build in that time when we’re, as Susan Senator so beautifully put it, “under siege,” but I try. I also attempt on a daily basis when we’re not in the thick of it or not to remember the progress they’ve made, whether it’s reading a book out loud or learning to ride a bike without training wheels, or simply that the boys are mostly happy, enjoying their lives.
Recalling the good times, and remembering the cessation of the former bad ones, has gotten me through.
And I hope if you’re an autism family and you’re struggling, that this helped.
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