April is Autism Awareness month. Just making ya’ll aware.
It’s the month where I change my facebook profile picture to the autism ribbon. As do several of my facebook friends. I notice more and more of them. I see articles on autism. Posters. Fundraisers…lot’s going on.
So in recognition of autism awareness I’d like to make people more aware of an ongoing issue I’ve been dealing with for many years now.
That is tolerance. Or lack thereof.
I remember the first time I really had to face the public. Cuyler was about 2 years old. Cam was 3.5. I was in WalMart and Cuyler saw a Thomas The Tank Engine shoebox that he wanted. And by wanted I mean he was screaming his head off, flailing back and forth in the stroller and making a scene. I asked the lady in the shoe department if they had any extra boxes I could have. She said no. Crap. I was sweating and trying keep hold of Cams hand while keeping control of the stroller. I was quickly trying to find my way to the exit when an elderly lady walked past me, oblivious to the tears streaming down my face and under her breath said “Control that child dammit”
I turned to her and said rather loudly “My son has autism. You think you can control him? Be my guest you miserable cow!” I quicky turned the stroller into the nearest aisle and cried harder. For a split second I was embarassed that I called her a miserable cow. Then I was proud of myself that I didn’t use the F word (I use it alot). For what it’s worth, the lady sought me out and apologized. But I knew from that moment on that this was something else that we were going to have to deal with on top of everything else. Society.
While I stood in the toy aisle crying that day I realized that if Cuyler were in a wheelchair, or if he had an obvious disability people would probably look at me with sympathy while dealing with challenges.
Cuyler looks like any other 7 year (probably cuter, no offense). So when I am dealing with challenging situations with him – like when he is in a tantrum, instead of sympathy I am judged.
And so is he. I am judged a bad mom for “allowing” that behaviour to occur. He is judged a brat for behaving that way.
I am not a bad mom. He is not a bad kid.
While I am trying to figure out the trigger of the tantrum and how to calm him, and working really hard to stay calm myself – I am very actuely aware of everybody watching us.
I see the eyerolls. The headshakes.
I hear the “Nothing a good swat wouldn’t fix” or “Somebody’s used to getting what they want”
I see the looks of the parents of the perfect kids on the playground that don’t know him. He’s the weird kid that annoys them.
It is becoming increasingly more difficult as he gets older. The behaviours he had when he was 3 are no longer cute or acceptable now that he is 7. Mind you, they are considerably reduced and we don’t see them often – but when we do it’s pretty intense.
It takes everything in me to not use the F word. It takes everything in me not to scream out “HE HAS AUTISM”
But I don’t. I am better than them. I will focus on my son and what his needs are at that moment and not your judgement. Regardless it still stings.
If only they knew what it’s really like. How bloody hard we have worked to get him this far and to still be judged. How hard he works everyday – to still be judged.
Please. The next time you see a kid out of control – don’t automatically think that he or she is a brat. They may be behaving that way because someone whistled and the pitch was too much for their auditory system, or someone’s perfume was too strong for their olfactory system, or they just don’t have the reasoning skills to understand that they cannot have that dvd that they really want (and probably already have).
With Cuyler – among several things that seemingly took us forever to figure out – he refused to sit at the dinner table every Sunday night for months. One day he just pushed the caesar salad away and shouted “It smells!!” We think it took him that long to be able to figure out himself what it was that bothered him and when he could – he told us. We got rid of the salad and he joined us.
We tried to take him swimming when he was 2 and he went ape shit in the changeroom. He just went nuts. We figured out that it was the acoustics and the echo. It was too much for his auditory system to take in.
We don’t want the scene. We don’t want to disrupt your shopping or your meal. But if I don’t give him the opportunity to do a great job at a restaurant – he never will (he enjoys restaurants now). I want to be able to do things with my son that every other parent does – like go to WalMart. I have to give him the opportunities where he can manage, be successful and feel competent in the real world.
So that’s my message. Let’s all reserve our judgement. Especially when it comes to raising our kids. Not just special needs kids either. If we all got a little more support, if there was a little more tolerance – this child rearing thing might be just a little easier for us all.
Christine, this was an excellent post. I admire you so much for your patience in dealing with Cuyler’s challenging behaviours – I’ve worked with some autistic children as a teacher, and I appreciate what a challenge it can be. You should be proud of yourself for your poise and calm!
The tendency to judge is one of the things that drives me the most crazy about parenthood. My oldest daughter has behaviour issues including tantrums and has had on-and-off bouts of refusing to go to school. If I had a nickel for every time someone made a remark like “who’s the parent here?” I would be a rich woman!
We all need to make our own decisions based on our children’s best interests, our personal limits and belief/value systems and experience. It’s not for others to judge. Although I will admit to inwardly cringing when people don’t leave a store, restaurant, etc. with a child in full tantrum. I TOTALLY understand the concept of not letting them control the agenda with their tantrums (been there, done that) but there is something about a screaming child that makes me want to stick needles in my eyeballs. But I never say anything and I try not to give dirty looks…it’s my issue, not theirs.
When my kids tantrum in public, I put her in the shopping cart and let her scream it out. She is not getting her way. She will stay in the buggy until she calms down. Then she can come out after her meltdown. I don’t care if others stare. My daughter is not going to be in charge, I am.
Thanks for the insight.
My son is a big talker like Stephanie’s so he got judged a lot for his behaviour. When he was two and having a tantrum people would act like they expected better of him (or of me) because he talked like he was four or five. A teacher at my daughter’s school told me that I’d better make sure I get his behaviour under control since kindergarten was just around the corner. I politely replied “yes — in three years”.
My son’s biggest temper tantrum happened when he was in his late twos over a toy that I told him we couldn’t get. I still needed to pay for everything else and the temper tantrum lasted all through the till. I had a well meaning grandmother say “I think he has a cold and that’s why he’s crying. You should … (whatever her remedy was)”. At least she gave him the benefit of the doubt. Mostly I received a lot of dirty looks which I did my best to ignore. If anyone stared and gave me a blank look I gave a half smile back as if to say “Yes — I know he’s having a tantrum”. One dad actually smiled back and said “Ah — I remember those days.” How refreshing — after all the dirty looks and judgments — some kindness.
Hopefully we can make an effort to show kindness to others instead of judging them.
I feel your pain and frustration in a slightly different way. I have also been judged and scorned by those who don’t understand. I actually had a woman in Costco plug her ears and her husband told her to get a grip.
My son has ADHD/Disruptive Behaviour Disorder with some sensory issues, he is now 4. I have had many a struggle and have carried him out of Walmart like a footbal at times, all the while he is kicking, biting and screaming.
I have cried, avoided places, hide at home and even gave up taking him out to certain places for over a year.
Our problem is two fold: one he was just diagnosed in Feb. even though I have known something was different since the day he was born.
Two a lot of people don’t believe his diagnosis exsists and that it’s just an excuse for bad behaviour and bad parenting. They not oly judge his behavior they judge me for the way I chose to treat it.
“oh he just needs a more stricts routine, consistency, no sugar, no food dyes, supplements etc.”
I then have to defend what I have and haven’t tried, why I am not using meds and therapy etc.
No one knows unless they live that life day in and day out.
I don’t judge their decision to wear to tight pants or that they should really dye their hair so don’t judge me.
Thanks for your post.
Well I will tell you that my 6 year old is not autistic but she has had similar reactions. She is a spirited child. There are things that just set her off. Last summer I had a incident in the Bay where she lost it. I was buying a watch for my mother’s 75th birthday and she wanted one too. When I told her she wasn’t getting one she lost it. She started screaming at the top of her lungs “I want a watch”, motioning that she was kicking and biting me although she wasn’t actually (she knows my reaction if she really did it). I continued to just do what I was doing and pay for the goods I was buying because I knew that once she was at the point there was nothing I could do to calm her down. The antics would stop on its own in exactly one hour. All I could do was wait it out. This man that works at the watch repair counter came over and yelled at her saying “You stop that young lady”. I looked up at him, giving him a very dirty look and said “Its fine, thank you.” What I really wanted to do was tell him off and tell him to mind his own business but I knew that would only upset my daughter more. We left the store as she continued to scream. I had one more errand to run and I was not about to let my daughter control my day so I continued to the next store. I had to pickup the cake. She continued screaming “I want a watch”. I put her in a shopping cart because I knew I would not be able to get her to walk without a struggle and went into the store. I don’t even know if people were looking at me because I didn’t care. I got the cake and went home. One hour after it started it stopped. I asked my daughter if she even heard what the man in the store yelled at her. She didn’t. When the get to that point that don’t hear anything you have to say and if you yell it makes it worse. The next time I went into the Bay and went and told that man off. I told him that he had no idea if something was wrong with my child. What if she was autistic. He had no idea. He told me that I wasn’t doing anything. I told him that her crying wasn’t bothering me. I told him that next time you see a parent in that situation you should just mind your business and not judge. I refused to tell him what was wrong with my child other than that I knew how to handle it. He made a comment that she was just a brat. I very quickly gave him an education. Months later I saw him again. He asked me how my daughter was. I told him that we had just had her parent/teacher interview and the teacher raved about my daughter. She told us she is a loving, caring, happy kid who all of her class mates look up to. She is also very smart and got good grades. He seemed surprised. The worst part about all this is that this man is a retired teacher. Shocking.
All I can say is be an advocate for you child and don’t care what others think or say. I’m sure they would not want to trade places.
Not only do I have 6 children but my 4 year old has aspergers and my 10 yr old has aspergers and most likely is bipolar. I have had my share of meltdowns a plenty – not just my childrens but mine as well. It is so sad that others do judge us and do not stop to realize that maybe there is more to the “Picture” that they can just see. I applaude you for doing everything you can for both of your children. Keep spreading the word and realize that in my books you are the perfect mom!
p.s. I also use the F word a lot – you are not alone!
Chantel
Christine I feel your pain. My son has Spina Bifida, but a milder sort so at first look people think he is — and I am going to use the term that people use all the time — normal (don’t even get me started on what I want to say when I hear that). One of the issues that kids with sb has is a form of ADHD that cannot be treated with meds or change of diet. So when he acts out or is out of control I am constantly getting dirty looks, snarky comments or even better family members that try to discipline him — when my hubby and I are right there! Thank you for posting this, I think the more that people are aware maybe they will think before they role their eyes or say something nasty — good for you speaking up too to the women in Walmart — you are definitely more restrained than I — I so would have used the F word — ok and have!
I also don’t think it should matter if our children are considered special or not, if you see a child having a melt down — people shouldn’t judge — they should either just butt out or offer a smile or a kind word.
Beautifully written blog, I look forward to each post!
http://raymentspinabifida.blogspot.com/
I know how awful it feels when my kids (not autistic) have their tantrums/meltdowns in public, I can’t imagine how much more difficult if the autism factor is thrown in there. You are a great parent for continuing to try and expose him to public settings so he can learn to have positive experiences there. You’re so right – he has to have the opportunity to experience the world.
Hey Christine…I can totally sympathize with what you are dealing with. We still can’t do Home Depot, but thankfully we are able to do other stores now. I am so ashamed to say I used to be “that” parent. The one who judged. If having Jesse Thomas has taught me anything, it taught me not to do that.
You are a fantastic mother and I’m glad I’ve gotten the chance to get to know you.
Andrea
Christine – this was SO WELL SAID. You’re awesome. My sister had a run in with a woman at Walmart as well. I have to say I’m in awe that she came back and apologized. I’m truly in awe of all of you parents of autistic kids. I seriously believe it is one of the most difficult diseases to deal with. I can look at my son when he’s loosing his crap for not being able to express himself and know that soon, this will end. Soon he can tell me what he wants. You all don’t have that buffer and I bow to you. Did you see the supplement in the Globe today? A great awareness piece…and the CN Tower will be blue tonight!!!
I totally heart you Christine! We’ve so been there. With Shay, we get a lot of those judgements because he always spoke so early and like an adult. They figured if he was so smart and articulate why in the world would he be so bad unless I was a horrible parent. We deal with the things that Shay says that he has absolutely no idea are totally rude and unacceptable to others. Like I would have been mortified if anyone heard him say “That’s that black boy that everyone hates” when referring to the show Everybody Hates Chris!
I almost ignore the tantrums I hear from other kids in public now. Cuz on any given day, my child could have been much worse!!