Thursday, December 12, 2013

Unless You're One of Us

Lately, I've really noticed that, while I am able to be around moms who don't have kids on the spectrum or with other special needs, and there are some moms whom I really adore, I'm really just more comfortable around my own people. My tribe of people who I don't need to make excuses that might seem outlandish to if I'm running late or if I have "that look" in my eyes when I show up to something. Also, my bs tolerance has run out. The following sums it up nicely, I think. 

Unless you're one of us, the parent of an autistic child, you might not know how much it stings when you hear, "but it's 'normal' for a boy/girl that age to do x, y, z." Yes, it might be "normal," but in our world, our kids are not and that has been made quite to us clear from the get go. And some of your criteria for such as qualifiers for what flies as appropriate behavior is baffling to us. Our children don't do this stuff. Why are your children allowed to get away with it?

Unless you're one of us, you might never know the excitement of finding a member of your tribe who speaks in the same anagrams you do at the park, grocery store, school, or other place. You talk for the briefest of minutes, probably, maybe even only with your eyes as you're calming a child or saying, "Nice walking! Nice playing!" while other parents are looking at you, askance. You want to hug that other parent, but are afraid of looking like a stalker. Sometimes you even get a chance to be by yourselves, have a conversation, exchange numbers, and form friendships.

Unless you're one of us, you never know how much that means.

Unless you're one of us, you might never know the tears you feel when you take your younger child's art work out of the folder, so beautifully done, and exclaim over it... as you automatically think back to your autistic child's work which still, though beautiful, is hard to make out, or might just be a line on the paper. It's hard to be happy sometimes for one child when you know how much your other child is struggling or has struggled.

Unless you're one of us, you might never have been told by a well meaning friend or family, "Don't you ever think about you're 'healthy' child? And how he or she feels or wants?" Of course we do, and up yours, family and friends who aren't even here. All the time. Every day, minute, and hour. We stress ourselves out thinking about our neurotypical kids, too, and wonder if they'll grow up with complexes about their parents not lavishing enough love on them.

If you're not one of us, you may never know the type of rage that consumes us when we find out our child has been hurt by someone... and how that rage builds when the incident is brushed off as if to say, "your child doesn't mean anything more than this piece of dust in the corners of the ceiling." You don't just want to burn that bridge. You want to make sure the people responsible are standing on the bridge tied to it when it goes up in flames. That's the sort of rage I speak of. To have your child reduced to nothing more than a "I don't get it" or a label, a term, a less than... it's beyond hurtful. And how do you explain that sort of injustice to your child?

Unless you're one of us, you might not know how great the gush of joy feels when you see your child playing with another child. And then two. Then three. Then more. Some of us never experience that, because not all autistic children want to play with other children. But as neurotypical parents, seeing that wish come to life is nothing short of amazing.

Unless you're one of us, you might not know the kind of restraint it takes when some jack wagon tells you, "You shouldn't shelter your son so much. One day you'll die and then who will take care of him?" Yes, there are people like him in the world. I encounter them. Frequently.

Unless you're one of us, you might never know the kind of restraint you must have when you are asked - to your face - questions such as, "why should your autistic kid matter more than my normal kid and get these accommodations?" or "why are my tax dollars funding this program? My kid ain't retarded!" After all, you aren't supposed to commit assault. It's illegal. And messy.

Unless you're one of us, well, me, you'll never know how much I can't stop talking about autism, other special needs, special education and the lack of funding for it, IEPs, my kids, etc. I've lost the ability to speak about much else and I might be okay with it. Just because my son is autistic doesn't mean he should cease to be a topic of conversation. Autism should be allowed to be on the table for conversation, too, so should special education. Learn people, learn. Yes, I do other things. No, I can't remember what they are half the time. It's called life.

Unless you're someone like me, you'll never understand the amount of anxiety I have about my son's future. And how, no, I just can't let go and enjoy the moment because I'm always waiting for the next shoe to drop. You'll never know the dance I'm doing with destiny of three steps hard fought forward and life knocking us two back.

Unless you live it, breathe it, and love it every day and want to advocate for change, I likely won't want to be around you... you don't get it. It's okay, really. It's not always personal.

I just prefer to be around members of my tribe and those who accept us.



  1. couldn't put it better myself....thx for sharing

  2. Just stumbled across your blog on Facebook. Love this! My son just got diagnosed 2 weeks ago and my daughter also has special educational needs. Seems like I'm losing my mum friends who don't get me. Trying to find my local tribe.

  3. Love this! It just gets so tiring in every way interacting with those who don't get it. (For me and my sweet girl). Finding my tribe has been life changing. You are definitely not alone in this feeling.