Radical acceptance of my child changed everything, but mostly it changed me.
When Alex, now 17, was born I had a dirty little secret that I didn’t even realize was dirty. My plan was to make sure he was “high-functioning”. When the OT, SLP and Early Childhood Teachers visited for his Early Intervention, I busted my butt doing all the assignments they gave. I added in infant massage and even managed to breastfeed him. In addition to constantly reviewing my checklists to ensure that I was doing everything right, because my kid was going somewhere and I was the bus that was taking him there.
I wore my “Good Mother” badge of honor proudly. But when I let myself see the truth I knew that a big part of my drive was that I was trying to fix my kid.
Alex had a regression right at the start of preschool. The more he regressed, the more I pushed, but nothing worked. He stopped talking and retreated into his own little world.
Spoiler alert, whatever “high-functioning” is, the pursuit of it fell by the wayside as our other son needed surgery, then had multiple hospitalizations. And there was just not enough of me, or anyone else, to go around. In the years since then, that misguided effort on my part has been replaced with radical acceptance.
Don’t get me wrong, we still participate in therapies to this day, but the difference is that I accept my son completely, no asterisk. Instead of trying to fix him or his Down syndrome, I help him reach short and long-term goals of his own determining. And work toward strategies that enhance his life here and now while allowing him to be exactly who he is.
The change is subtle, the casual observer might miss it. I’m no longer saying my son is acceptable only if he can overcome the intellectual and developmental delays that accompany his Down syndrome. Rather, he is acceptable exactly as is, and we can still help him be the best version of himself that he’s capable of becoming.
Intellectual disabilities do not require fixing, they require accommodating.
Shifting my perspective to accommodating Alex’s needs and embracing him as is has freed me up to delight in him. He never needed fixing in the first place, it was my perspective that was broken. My son was and is perfectly deserving of radical acceptance. Learning this, even a little bit late in the game, was the best plan all around for all of us. Becoming untethered from the anchor of unrealistic expectations set us free to soar in the direction we should have been heading all along.
Alethea Mshar is a Special Needs Mom and Blogger.
Read her blog, Ben’s Writing, Running Mom
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