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The Emotions You Keep to Yourself When Parenting a Child With a Disability

I am still surprised when people — strangers –approach me and either outright ask if you have autism, or simply begin a conversation not knowing anything about you. Sometimes it is difficult to move past the “look” or the “stare” many of us have encountered. The expression that quickly comes across people’s faces: a mixture of pity and oftentimes, relief, that they don’t walk in our
shoes. It can come from a favorite relative, a well-meaning friend, anyone really.

Oftentimes I am struck by how quickly others determine you are not like every other child.  I wonder what they see.

I see you, my little girl, and to me, you look just like every other child.

Maybe I suspend disbelief in believing that your Williams syndrome and autism are invisible.

At school, you wear the same uniform; however, you need someone by your side, ensuring you don’t get lost and wander away. The work is a challenge for you too. I believe the level of your struggle is not fully understood, nor is how far you have come truly appreciated.

At the playground, you swing so high, but it’s the playground equipment that is much more difficult for you to navigate.

At the beach, you flap your arms shrieking in sheer delight as your favorite place calls to you.

Though your sister may think I don’t see her — that I spend so much of my time devoted to your needs — I see her too. She does not go unnoticed. I painstakingly try my very best to be there for both of you.

My dreams for you and your sister are really the same: I want you both to be happy, healthy, safe, loved, and cherished. Sometimes I feel scared you may not have the support you will need when you grow up.

The isolation is very real. It feels like no amount of effort could possibly explain what we go through. No amount of words could convey how hard I have fought with every fiber of my being to try and get you the services that you need. Sometimes, the struggle consumes my every waking moment.

It is far easier to keep everything to myself, to push forward, to not allow the tears to spill over and wash me away, but sometimes I feel so weary, burned out, alone, and afraid.

The truth is, I am afraid for my daughter, who, because of her condition, has no sense of safety, and possibly never will. She drops to the floor in inconvenient places because she feels that is the only way to get her message across: I don’t want to leave. I don’t want to go. It is too loud. I need to shut out all of the noise and everything around me.

What so many take for granted, we fight for every single day. We fight for the right to remain in a public magnet school with neuro-typical peers, just because we were fortunate enough to get a slot. That yes, my daughter — you are entitled to quality and appropriate therapies. You too can make meaningful progress.

My edges have turned as sharp as glass, and feel just as fragile. After years of battling our school district to get you a free and appropriate education, I have grown cynical and angry too. This journey is not for the weak; it takes unending and enormous courage, strength, and perseverance.

I don’t long for you to be different, for you are the happiest person I know. I do wish the world was a different place and you were viewed through a lens that focused on your great efforts and abilities, rather than limitations. You are amazing and I am proud and honored to be your Mom.

the author's daughter in a coat outside