I was told many times when my eldest son was young that there was nothing wrong with him. I was told that instead the issue was actually my parenting. I remember one time in fact that I was at a friend’s house and he was having trouble getting to sleep. He’d gotten scared and it ended up taking me just over two hours of laying with him, cuddling him and singing to him to get him to calm down and fall asleep. Upon re-joining the rest of the adults around the campfire that had been built, mentally exhausted, aching inside for my sweet boy who just couldn’t deal even when he WANTED to, I was verbally attacked. Honestly there is no other way to describe what happened.
I was standing there not speaking to anyone specifically when this person started in on me. Screaming at me that I needed to stop baby-ing him, that he was never going to learn how to deal with the real world because of how I coddled him. I was told that if I would stop him, treat him the way the real world would treat him he’d be “better” This person decided that how I raised my son was totally unacceptable. One of the things they said was that they were simply being honest by telling me what everyone there was saying behind my back. That part still strikes me hard 5 years later. Why, because these people were supposed to be friends, they had seen myself and my son for a long time and yet still there I was being screamed at about my abject failure in parenting my son. Not only that, but instead of concerns being voiced in a kind manner, there I was being centred out to be told both how terrible I was as a mother and that this was thought by all those that were there and they had apparently been speaking about this behind my back.
Finally, with tears in my eyes and my heart breaking at the random viciousness of this person’s words I stated, how about we talk about him like he’s just like “_____” which was the child of another person that was there. I stated that he was just like them. After all there was another child there that had it as well. It was then that the light dawned on my attackers face. Quickly I was encircled in their arms as they tried to apologize, telling me they had no idea he had Autism as well. It didn’t make it better. It didn’t make it hurt less that they were now saying they were sorry. It didn’t make the embarrassment at being centered out and told in no uncertain terms that I was a terrible mother easier to deal with. I stood there still and stiff wondering in my head when they would finally release me so that I could walk away from them physically as well as mentally to re-coup.
I had not told any of the people there before that moment because I didn’t feel like I needed too at the time. I naively thought that because he was my son and a beautiful person on the inside that it was enough. That he could just be himself and be loved and accepted as the bright, shining, sweet, individual he was.
I still see this person from time to time. They still swear that they were only being helpful by voicing what everyone else was thinking. That they think I’m a good mom now that they understand my eldest has Autism. But in thinking about the past, I can honestly say the memory of that night still hurts. I wish for a greater understanding of Autism in general so that other parents will not be subject to uninformed tirades such as the one from that night.
I’d been subject to other tirades from other people both before and after that incident, but that one was one of the hardest because it wasn’t from a stranger. The ones at the stores or parks I can brush off after a little bit, I can inform that stranger about Autism, and explain that it’s not what they think. Sometimes they simply walk away after I’ve said something, sometimes they argue with me, but always they are nameless people who theoretically I don’t have to see again. It’s easier that way. It’s oh so much harder when it’s people who know you instead.
To be perfectly fair, they were not the only person that knew me that had said things like that to me. My own family fought me tooth and nail about my parenting and my son because in many of their minds he was simply a willful brat that was all too often given his own way and coddled and spoilt. I was over-compensating for being a single mother by giving in to him and not disciplining him in the ways he needed to be a “good” and “well-behaved” child. Just like that person the views changed once I had an official diagnosis. That fact should bring me comfort, that NOW he’s accepted by those that know me because they also know a doctor has stated that he has Autism. But when I look at my son, I don’t see Autism, I see him. Just him. I see his smile, his starburst eyes. I hear his laughter when I tickle him, and his off-key singing when a song comes on the radio that he likes. I watch his body move and flow when he dances as if he were made of liquid sound. I watch the rise and fall of his chest as he sleeps cuddling his baby brother who often crawls into bed with him in the middle of the night. I feel his frustration about his printing when he writes to his pen pals, and I feel his excitement when his baby sister smiles at him. I know of the meltdowns, I live through each one with him, holding him, telling him he’s loved and safe, restraining him as gently as I can when he’s trying to self-injure. But I know of ALL of him, every single piece of him, and his Autism is not who he is, it’s just one piece. Just as being a big brother is not all that he is, or having starburst eyes is not who he is. They are all just parts, that together make up one of the most incredible human beings I have ever had the joy to know. But it’s even better than that, I don’t get to just know him, I get to live with him every single day, experiencing all the highs and lows of his life with him, and being his mother is more amazing than anything. If I had disciplined him more as I was originally told to do, some of his beautiful light would have been dimmed, and that would have been a tragedy for me, him and the rest of the world that would have missed out on so much beauty and light that pours out of him every single day.
Behind starburst eyes 
While ideally you wouldn’t have to disclose not to be judged by people, especially those you consider friends I’ve learned that in any long term relationship that requires more than minimal contact it’s best just to get that out of the way. It’s a tough balance between wanting people to see you as yourself (in your case see your son) but being aware that there might be a reason beyond the ones they may come up with on their own for some of the harder to explain things. Since their own explanations will it seems inevitably be worse (which I had to learn the hard way) it just simplifies thing to disclose. It’s also affirming in a way.
It’s true, I’ve learnt since then that it’s just easier to get it out of the way as soon as possible. But at times I get irked that I have to you know? I feel like, why can’t he just be accepted as is? His twirling, or hand flapping or need for certain routines at bed time don’t hurt anyone, so why are they such a big deal?
I know the answers of course, they are exactly as you say, other people will come up with far worse explanations on their own than the truth. But there’s still a naive part of me that doesn’t get why can’t we as a society simply accept people the way they are without harsh judgements. I’ve learnt to supress that part for most of the time as I know that getting frustrated at people’s need to judge and catagorize is pointless and will only waste my time. But every once in awhile it pops up to the surface of my brain and out comes a post like this one about a time when I thought that by not saying anything I was giving my son the freedom to be accepted as is without labels but I’ve learnt that just backfires when tried.
{{HUGS}} I know exactly how you feel. I am sorry you had to go through that, and never let the ignorance of others make you doubt what an EXTRAORDINARY mom you are. ❤
Before our diagnosis the judgement and horrible things said were bad. After our diagnosis, it has improved but we fight ignorance almost on a daily basis. It is easier to take from strangers, and I try to educate them best I can depending on the situation. It is still hard to take from family and friends, and that circle keeps getting smaller. The people in our life has shrunk greatly since having children, and having one child with Autism; however, those that are here are usually pretty good about trying to understand. Those that prefer to judge and be stupid-heads, just don;t see us much. 😉
Hugs right back 😀 It took time to believe in myself the way that every mother who honestly tries their best should.
I think that many of us fight the ignorance far more than we should ever have to. But at the same time a part of me says, you know what if it’s a choice between me having to fight and argue or him I’d rather take the harder road so that his might be even a fraction easier, as I’m sure every other parent feels.
The amount of people in our lives has shrunk greatly as well. But like you so brilliantly called them “stupid-heads” are not people I need in my or my children’s lives 🙂
There was so much vicious gossip behind people’s backs, then. And when I brought it to the attention of one of the subjects – *I* got the shit end of the stick. I dunno, man, I guess good girlfriends don’t tell you your “friends” are calling you a slut behind your back?
Still bitter, really.
And I remember that- obviously.
I’m really sorry you got into trouble for calling all of the vicious gossiping to someone’s attention. Call me naive but I didn’t know about it. I honestly thought it was this lovely atmosphere where everyone was genuinely accepting of each other. I think that was a part of why that night hurt so bad. Not only was I raw to begin with when it happened, and the act itself upset me greatly but because I didn’t know that people were talking behind each other’s backs. I wasn’t a part of those conversations perhaps I just wasn’t liked well enough for people to do that with me, or perhaps it’s because my piss poor parenting was too much a part of the gossip to let me in on the rest of it. I don’t know, I just know that it still hurts, it shouldn’t but it does.
[…] I write because if more people understand Autism than there will be less times that parents are ostracised and called out for their supposed flaws as parents. (Such as this) […]