I've put off writing this entry for a while. Mostly I wanted to wait for a week where I wasn't judged by another parent, professional, or stranger. It was over two months ago that I made that decision. Two months. Sad right? It’s been over two months since I've had a judged free week.
One of the things you learn early in parenting, is that somehow just being pregnant makes you public property in some manner. People feel they have rights to opinions about you, be it your appearance, the decisions you are making for your baby, and what you should be doing if you're not already doing it...differently, more, not at all...you name it.
Everyone is a damn critic.
This doesn't go away when you have a special needs child. In fact it gets worse. The sad thing is that it isn't always meant with malic, I think in most cases people's intentions are good. I'm not sure what that says about our society, maybe a topic for another post down the line. People judge and they do it without knowing they are doing it. And TRUST. I know I am not immune to this. I am a flawed person, maybe more flawed than the next.
But being on the receiving end of it so consistently has given me some awesome fodder for reflection. So here are my thoughts
I split my life into my critics. There are several groups. Let us dissect them.
I have some wonderful friends. I split these friends further into my "IRL" in real life friends and my "e" friends, the wonderful people I've met in mommy forums, special needs support groups, and so on. I could further dissect these groups, but for conversation sake, let us just keep it simple.
IRL I have friends who look at Asher and say "I don't see it, I just don't. I believe that you think he is Autistic, but I don't see it" or "He isn't that bad, he looks like a regular 4 year old to me" or even better "Every kid has bad days" Except you just witnessed a good day for him. While these comments are meant to be supportive and kind, they aren't helpful at all. They just make me feel more defeated. I need my friends to understand how hard this life with this little boy can be sometimes, shoulders to lean on. I can't lean on them if they don't believe me, they won't support me if they think I'm exaggerating a very real and sad problem that takes over my whole life.
Sometimes I feel like I have nothing to talk about with these friends, when they used to know everything about me. Partially because I don't think they want to know this part of me and partially because while they don't know it, the look on their face when you talk about things like OT, Speech, and ABA is riddled with judgment. Like really "Why can't you just let him be a kid” Awesome.
I have a very small handful of e-friends that get it. These ladies know who they are. I love you guys, I do and I love our group. But the rest of my e-"friends" and I use that term loosely to describe a relationship with a group of women that have been together online since we were pregnant with our first borns, some of those friends have been downright hurtful with their judgments. At times it is hard to remember why belonging to this group ever seemed important. Oh because once upon a time we all just had kids who were the same age, they weren't differentiated by NT (Neuro Typical) and SN (Special Needs) I feel like most times I have nothing to share with these women either. While they debate things like Disney's new SN policies and see no harm in it, myself and the other "handful" of SN mamas are lurking in the back ground drowning in unfair judgment and choking on the opinions of others. And they don't get it. No one sees how these "little debates" can be so isolating and marginalizing.
Once way back in the dark days when I first got Asher's diagnosis, I had one of them call me out and say that they didn't believe Asher was autistic. Why the hell on God's green planet would anyone ever lie about something like that? You don't get cool kids points for having a disabled child. What a dark time for me. I was so upset by this women I would never meet and should have no care in the world toward her opinion, so upset that I actually scanned in my son's diagnostic medical documents and posted them online. So low of me. I don't know how or why I was in a place that someone's judgment could get me to such a place. It was almost pathetic.
But I have other critics and these critics have the ability to hurt me and my son a lot more. These are the critics that have too much pride to admit one of their own could be broken or imperfect in some manner. Yes family. I just want to say that I have some wonderful family members who are nothing but supportive. But there are others who look at us and say things like "there is nothing wrong with him, grow a back bone" "why does there have to be something wrong with him, why can't you just enjoy him" "why did you have children if you were going to let some quack place a label on him” or my very very favorite "I believe that you think he is Autistic” Sigh. Also not helpful. Not for Phill and I and certainly not for Asher. We have one person in particular who flops back and forth and by that I mean we are damned if we do damned if we don't. She will say things like "There is nothing wrong with him, you're just not parenting with a firm hand, he is a brat” and then ten minutes later when Asher is having a sensory meltdown and Phill is holding him in the other room to give him sensory feedback, will look at us and say "That is terrible, he is just a child” She who shall never be named is so lucky I hold my tongue more than I let it fly free.
So I spend half my time hearing about how people don't understand it or see it and then I spend the rest of my time being judged by the people who do. I'm either doing too much for my son or not enough. Let me explain.
So my friends think Asher is milder than he is, they don't see the things that worry us and think we are crazy for the amount of therapy we seek out for him. I'll include well intentioned family members in that group. Then there are the therapists. The people who do see it. But suddenly when talking to them 30 hours a week of OT, Speech, ABA, Hippotherapy, Social Group....it just isn't enough and why aren't we doing more?!? What do you mean you want some time for him to be a kid?!? OMG he has time to be a kid when he is out of this most important developmental stage. Have you considered medication for your child? NO? You're too biomedical? Have you considered fecal transplants? NO?!? You're not biomedical enough! You suck! You're choosing wrong!
I love even more sitting in school meetings where I try to explain what my son is actually capable of and I am told that he is so much more severe that I think he is. Wait a minute, back up....everyone in my life tells me I'm seeing things, he is fine, nothing wrong with him. And you, you sit here and tell me that my son is so severe he can never be in a regular classroom with normal kids, not just for his own sake, but for the sake of other children as well. He is so impaired he can't be taught to sit in a circle for morning meeting when a fucking dog can be trained to sit just because you tell it to? You're telling me that no matter how I try to advocate for my son, I'm wrong.
So many critics. As part of my non mommy self, I take on clients for advocacy. I actually sat in on a meeting where the school district in the span of five minutes told a mother that she should get her child involved in more activities and that she wasn't doing enough, but then just minutes later told the same mother regarding the same child "Shame on you for forcing her to do activities that cause her anxiety” For Suck Sake people. You'd think this mother was Hitler for signing her daughter up for dance lessons (Which said child loves btw) Why? Why would they do that? Because in once sentence in benefitted them to say mom wasn't doing enough and then in another it benefitted them to say she was doing too much.
So I say fuck it. Seriously. Fuck it. There are too many critics and everyone is on the extreme left or right. How about joining the real world here, that just happens to be somewhere in the middle? Is my son typical? No. I'm sorry friends I know you love me, but your denial hurts me. Is my son so disabled he can't be around normal kids? NO. I'm sorry well intentioned teachers who really do have Asher's best interest at heart, you wanting to protect him from the world and holding him to no standards, hurts him, it hurts me, and it hurts our family.
So I'm saying NO. You're all wrong. Society is wrong, the professionals are wrong, even those who love us are wrong. I'm so sick of listening to people talk about my son and seriously sitting there trying to figure out who the hell they are talking about. Surely not the skinny tall dirty blond four year old with huge blue, green, brown eyes that I tuck in every night. Not the same little boy that I put in time out forty times a day, redirect on the playground, snuggle and watch movies with, laugh with, cry with, be silly with, cry over when he is sleeping and can't see me. We're not talking about the same little boy, none of us. And we're not talking about the same me either. I'm not over exaggerating my son, I'm not under exaggerating him. I'm not putting him through too much therapy or not enough therapy. In truth our normal is just different than yours. You want a say in that? Too bad. I don't care for your say, unless it is 100% supportive and loving and transparent, unless it is absolutely free of your judgment. And it rarely is. Rarely.
