I've been reading a blog by "Autism Daddy" which I find so totally fascinating and validating. Although his son has severe autism and my daughter does not, I share so many of his thoughts, feelings, and experiences. I've also followed a blog called "Autsim with a side of fries". Hilarious. I love this girl. She tells it like it is, takes no prisoners, and offers no apologies. I can't say that I understand what any other autism parent is going through because we lead different lives with different children, different obstacles, and different triumphs. But these blogs are good for my soul. So on those days that I think to myself, "Why the F am I blogging?" I read one of theirs and it reminds me that there are others out there who appreciate the info and insight. I have read a few things along the way about different people identifying their top 5 things not to say to a parent of a child with autism. I've found that there are some definitive things that many of us share. But there are some things that don't bug me at all that other autism parents dislike. I think people are mostly intending to be helpful but I'm not going to lie... Here are a few things that have bothered me to hear.
"Oh yeah... Every kid does that!"
Of all the things people say, this one is the worst. Yes. Lots of kids have meltdowns. Not many six year olds have a dozen in a day. Lots of kids can't handle a long car ride. Not many kids have night terrors, meltdowns, or stop pooping/talking/eating because of overstimulation at a birthday party or understimulation from watching tv all day. Not many kids have to have the exact same routine every single morning where a change in which parent is driving her to school or the fact that she didn't get to see that whole cereal commercial, would incite what else? A meltdown. Or result in an afternoon of animal noises and complete loss of the previously learned English language. Timing is everything. There is no leaving the house in the middle of a tv show. There is no morning without hot chocolate.
Maybe there are lots of kids who have difficulty with the transition from summer holidays to school. My son doesn't, but maybe kids do. With autism, our struggles are more prolonged, more intense, and more difficult. This year when Sienna started grade one, I can't count how many people responded with this phrase about every child having difficulty with the transition from kindergarten to grade one or summer back to school. And nodding as if to say, "Yeah, I know what you're saying." What that tells me is that this person has NO idea what I'm saying. I can let it go but it's like filing a recipe away. I will hold onto it and pull out some autism education the next time I see the person. And the next time I see the person. And the next time I see the person. What gets me the most is that I know what the "typical" effects are on a child transitioning into school. I have a son who started JK this year! It is soooooo very different!
"I could get her to do that. Just send her over to my house for a day."
More than anything else, this is a dismissal of all the daily effort we make to help our daughter move forward. I have tried EVERYTHING to try to get her to ride a bike with training wheels. I've offered rewards and treats. I've tried everything in the world to make it fun and exciting. She doesn't want to do it. It requires more intense motor planning and body awareness than what she can handle; trying to make her legs move in an unnatural motion, using hands to steer wheels that don't make sense to her, all the while trying to look ahead to see where she is going and then plan to reverse the legs if she needs to stop. Not to mention the anxiety about falling off or tipping over with limited body awareness and an inability to protect herself from a fall (like when you would automatically curl the body up to protect yourself). Too much! And who cares? Does she really need to learn to ride a bike? No.
At this point i just laugh when people try to give me toileting advice. Unfortunately, even if they work at Kerry's Place, Autism Ontario, are her EA or teacher, or have a child of their own on the spectrum, it's just not going to fly with me. Sorry. I've tried it all. It's like a freaking mission impossible unsolvable mystery. I know your heart is in the right place, but if you want to offer advice for toileting because your kids figured it out the day they turned two, or have been dry at night since they were three, don't. My child does not learn the way yours does. And whatever you do, please don't tell me you're upset that your six year old peed the bed.
"Stop worrying so much."
If I could send my beauty queen to a sleepover and feel comfortable about it, that would be a huge relief. If I could trust that if/when someone was picking on her at school, she would be able to tell me... awesome. Instead I worry that my daughter can not communicate bullying and doesn't understand sarcasm or jokes versus someone being serious. I can't even think about the implications this could have. If I didn't know of all of the progress she has made, in reducing the number of meltdowns, reducing night terrors, increasing focus and attention, and improving her ability to transition from one thing to the next, is dependent upon routine and structure (regardless of how much she may enjoy herself in the short term) I would say yes to sleepovers. But I can't, in good conscience, facilitate regression after all the hard work she has done to get to where she is. I owe that to her. And that's just one example.
I am pretty intuitive and I know many people think I worry too much. They just don't say it to my face. So that's a great first step. Don't say it to my face! But really... Don't think I worry too much. I don't. I love my kid. And I want my kid to be safe and happy. Just like you love your kid and want your kid to be safe and happy. To be fair, I may just have a few more things to think about when it comes to safety and happiness.
What Doesn't Bug Me?
On the flip side, there are things that have repeatedly come up on other autism parents' radar that they dislike which don't bother me at all. Weird right? For example, if someone says to me, "She doesn't look like she has autism" that doesn't really bug me. I don't know why. What it really says is, "The only autism I know is the full blown severe autism that affects how the person looks physically." So maybe that should tick me off. Because that would mean that people think autism is a physical disability; a visible disability. Which it's not. But, for some reason that one doesn't really rile me up. My daughter is a beauty in the eyes of this beholder. I'm good with that.
Some parents are bothered when they hear, "I don't know how you do it." You know what I say? Some days I don't do it. Some days I'm a complete disaster. Most days I would say I don't know how I do it either. Working full time in a job that requires a fair amount of thought, organization and energy and coming home to facilitate structure and routine after a long day of talk talk talk, listen listen listen, help help help, teach teach teach? Ugh. The first thing I want to do is lay down on the couch and let things fall where they may; let the kids do whatever, wherever, whenever... But I can't. Not once. Because if I do it once, it affects me for the next three nights. And it's even more important in the morning to follow through immediately with the routine. As soon as the princess' eyes are open. If I don't, even on the weekends, it spells disaster for the weekdays when we are trying to get ready for school. One morning of iPad equals the expectation that every morning has iPad. One morning of staying in our jammies equals the expectation that every morning we stay in our jammies.
So, as usual, I am being straight forward and honest. Ask an autism parent how her child is doing, if she's enjoying swimming lessons. Celebrate with that parent that her child sat on a bike seat, that she had a full day of clean underwear, that she enjoyed her piano lesson on the weekend, that she finally got over her fear of merry go rounds... Celebrate that her child answered your question, that she made eye contact, that she initiated a conversation with a peer. We find ourselves celebrating the things that others take for granted. Sometimes it takes a person to look beyond what they expect of someone to see the triumphs of each person as an individual.
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