While reading through the daily Facebook posts from LGS parents searching for answers, comfort or just wanting to vent, I came across one reminding me why we need one another in this insane journey.
Now, I probably could’ve chosen a handful of posts that triggered a personal response, but this one really did it. To summarize the post, a mom was checking in with her fellow LGS parents to see if they’ve ever stopped a therapy, in this case it was ABA therapy. She was overwhelmed and exhausted and just wanted permission to take a break. The outpouring of support for her decision was typical of our community but I was hearing a familiar message that I long ago named “The Fix-My-Kid Syndrome”(FMKS). I haven’t patented that name but perhaps I should (I’m only half-joking).
As is the norm in the FMKS world, we, the caregivers, will not stop at anything to bring the best therapies, equipment, physicians, teachers, technologies, diets, way-out-there-woo-woo-crazy stuff, etc. to our precious kids. They’re worth it. The world looks at them and some people see them as suffering and may even pity the families that have to endure this suffering (which kinda makes me gag). There is no shortage of ideas being thrown at us all the time. “Try this… and this…and this…and…a friend of mine tried this...and you ‘should’ be doing this…” Should. My least favorite word.
So when are we allowed to just stop? Take a break? Live? Let them eat junk food, watch TV and lie around in their PJs all day like their siblings? When can we be okay with the standard of medical care they’re getting without feeling like they’ve been failed? When can we stop gearing up for an IEP like soldiers preparing for battle? When can we be able to laugh off the ‘well-meaning’ comments from those who just don’t get it? When can we ignore the stares? When can we just enjoy our children without feeling the need to ‘fix’ them?
The truth is that we may never be able
to, but perhaps we can find some semblance of balance in our lives so we don’t burn out or make ourselves crazy. Perhaps we can forgive ourselves more often for not being able to fix everything. And perhaps we can even reach out to one another because we have a community of parents who will be kind to us when we can't be kind to ourselves. As a parent of a 16 year old, I can honestly say that there have been times when I’ve just stepped away. I had to. I was emotionally spent and losing hope. My optimism was dwindling and I'm a pretty optimistic person. I'd ask myself "Is anything I'm doing even working or helping him?"
We did ABA too. I’m not a disbeliever. I think ABA is fantastic but the truth is, I didn’t see a noticeable difference in my son. Every day after school, a wonderful therapist came to our home to work with my son (who we call "Mr. T") who was completely exhausted from his school day. Sometimes he had a big ol’ seizure and sometimes he just ate a snack and stared at the therapist. We had to rush home for this? Like any card-carrying member of the Parent-of-a -Child-with-Special-Needs Club, I placed the blame for his lack of progress squarely on MY shoulders (where it belonged, right?) Of course, I was a lousy mom who didn’t work hard enough with him. I didn’t turn every waking moment into a therapy session. I wasn’t combing the internet in the wee small hours of the morning searching for some undiscovered piece of the puzzle.
And of course, that was when I’d see a blog or Facebook post from a parent who was doing so much more than I was and I’d wake up at 2:00 in the morning, my head filled with racing thoughts of all that I ‘should’ be doing and “WHY AM I NOT DOING IT?!!” I call 2:00 am The Hour Of Self-Loathing. Okay, I’m sure menopause may have had something to do with that but, still.
So I’ve decided to forgive myself, to forgive the doctors, therapists, teachers, etc. who haven’t fixed him. Maybe he doesn’t need to be fixed because he’s perfect just the way he is. Yes, I want those damn seizures to just stop. And I will always try to stay up-to-date and informed on the next miracle cure and ground-breaking therapies coming down the pipeline. And I’ll believe in everything with all my heart. And if/when it fails, I’ll move on and try to avoid playing the blame game or being bitter. That in itself is the biggest challenge but one that I will tackle if I’m going to be any good to my son or anyone else. Let someone else ‘suffer’ from FMKS. I choose to celebrate my beautiful boy even when we both crash into the toilet from a seizure, and, well, see for yourself...
I will celebrate the hugs, the cuddles, broken toilets, hair-pulling, drool, broken dishes, and holes in the walls. I’ll try to ‘fix’ the sleepless nights, all the stuff that requires heavy-lifting on my part and maybe even 'the system' if my inner activist has it in her (catch the play on words?). And I'll keep searching for a way to 'fix' the horrible, rotten, crummy, mean, terrible, nasty, hateful seizures.
And I will be satisfied with Good Enough.