I’m not sure awareness is ever going to happen for some people.
I don’t want to sound pessimistic in any way but over the past ten years, I feel like I have become a better person while the world around me has displayed deeper signs of hate. Ten years ago, I met my husband and his then 3-year-old son Robbie. I got to experience his son’s charm and truly care about him before we went through the stages of diagnoses and grief. It struck my husband much deeper and sometimes I know I contributed to the problem rather than helped solve it. On our worst days, I found myself grabbing a pitchfork and joining the judgment mob against them because I truly did not understand until I had my daughter. I didn’t understand the difference between tantrums and meltdowns or how a child’s behavior isn’t always the result of bad parenting. And I’ve learned that it’s okay—nobody is expecting anyone to fully understand or try to solve the problem, they want people to try to understand just a little bit.
Often, I say that Robbie prepared me for Ally. I never lost my temper with him and he never embarrassed me in public. For whatever reason, I remained calm when he would act out or throw himself on the floor. I was always prepared to run but I rarely had to chase him. While this wasn’t the case for my daughter, it felt like training for the marathon that she is. And while I loved him first, I advocated for him and would give it to any person who treated him unfairly. But I did not truly understand the pain of special needs parenting to the first degree until my own daughter struggled.
There are many people out there who will never get it. They will never be nice, they will never understand, and they will continue to judge all children and their families out loud for all to hear. They are incapable of awareness and human decency. Like the people rolling their eyes at the grocery store (I commend you for keeping your mouth shut), the bad teachers out there, and those judgmental parents we all encounter in public and who exclude our children. I’m not sure if we should give up, avoid those people, or keep trying to advocate. But I’m figuring it out day by day.
I was at a gathering At an old friend’s house last summer and sat next to a woman trying to get pregnant. She was my distant friend’s spouse.
“My biggest fear is autism or getting a fucked up kid. I kind of want to adopt a five-year-old who is pre-screened for that stuff,” she said.
People don’t always realize it when they say these things in front of me. I listened and said nothing at first.
But then I threw a simple question out there,
“Why?”
She said she saw enough of it at work and isn’t strong enough to deal with it. She can’t and she won’t. She wants a “normal kid.” Without hesitation I asked her,
“Do you ever think your parents wished for a gay kid, or not to have one?”
I asked her fully knowing it’s not the same thing but the ignorance runs parallel. It made sense to me in the moment.
She looked like she wanted to punch me in the face and asked why the hell that mattered.
“Because you love your child, the one that you get. No matter what you wished for,” I said.
She stopped speaking to me at that point and became part of the statistic that will never understand. Or maybe she did and hates me for it. Who knows. I’ll never see her again (or at least not for a few years) to find out.
I fully admit that I was out of line but once you put your boxing gloves at your first IEP meeting, it’s like they never come off (even when you thought you took them off to go out).
The journey of parenting, in general, is hard because, at some point, all children struggle with something. Maybe the rise of instant communications and social media has brought on this age of parent shaming, or maybe it wasn’t as accessible for previous generations to process as often— but it has to stop. There are no pregnant women wishing for disabled children. This happens to people and there is often no rhyme or reason to it. It could happen to you, it could happen to your children someday, it could happen to your brother or sister. You are not special or immune to it. It just happens and you can’t prevent it.
This is the only truth you’ll ever need as a parent: you love your child, the one you get, no matter what child you wished for while you were pregnant. Every parent loves their child so don’t let your words be knives. Be more understanding, more compassionate, and keep your nasty comments to yourself. Awareness means understanding (even just a little bit). That’s all we need regardless of situations.
