Every year I struggle with how to address this month, and in particular April 2, Autism Awareness Day. I am so grateful that so many more people are aware of Autism. In days past, whenever one of my boys would flip into meltdown mode or start stimming at an “inappropriate” time or place I would get dirty looks. I could clearly see the thoughts racing through their heads, “That mother needs to parent her child.” “Why doesn’t she discipline her kid? I’d never let mine get out of control like that.”
I had a woman question my abilities as a parent when I let my child go to a camp with fruity cereal for lunch. I did that, because he couldn’t stand the idea of any other food that day. I’ve been told the way to deal with the desire to wear the same clothing for two or more days in a row was to simply buy five of the same t-shirt. When I tried to explain it was a texture issue, that worn in clothing is more comfortable, I was told to use fabric softener. “Not possible,” I responded. “Asthma issues preclude the use of most softeners because of their scent.” I explained I do use dryer balls, but it’s just not the same. The whole thing was a fiasco. Mind you this was only four years ago.
When I made the Autism hats, I at least didn’t get so many glares as I received pitying glances. It stinks we parents of ASD kids have to choose which is better –scorn or pity. I chose pity, but I don’t want pity. I have learned so much from my kids. They are a blessing to me. They are also my biggest challenge. Don’t pity me.
So while I am glad more people are aware, and while I’m blessed that college seems to be in the future for my kids (though Whirlwind has been freaking out over college admissions tasks making me question this), it doesn’t change the day to day of parenting and caring for ASD kids.
Yesterday I read a great personal experience article. This mom of three ASD daughters calls for an Autism Action Month instead of just Awareness. I wholeheartedly agree. The first two suggestions come from her. 1) Donate to local organizations which support ASD families. 2) Be warm and friendly and smile to everyone–especially those who seem to be having a hard time. Adults have Autism Spectrum too.
Parenting ASD kids can be tough and lonely and isolating. We often avoid gatherings because we’re worried how the setting may affect our child(ren), how much time we still be supervising our child(ren), and whether or not it is worth it for all the dirty looks we might receive. Just this week I read the terrible news a father had confessed and been arrested for killing his five-year-old boy with Autism. I cannot pretend to know why he took his son’s life. It’s horrific, and makes me sad beyond belief that a bright soul has his life sniffed out before his time. I honestly have to wonder if the isolation of autism parenting got to the father and was a contributing factor.
Finding care we fully trust for our child(ren) can be tricky too. We’ve all heard the horror stories. My own nephew went from enjoying school to having meltdowns and genuine fear about attending. The change was overnight and stemmed from a new “aide” (I use that term loosely) who was supposed to be helping my nephew. She was a substitute who had been brought in without my sister-in-law’s prior knowledge or consent. Months later it came out she had been pinching my nephew to get him to be quiet. For months he couldn’t articulate what was bothering him because he simply didn’t have the word for pinch.
So here are a few more suggestions: 3) Visit with your friend with ASD kids. Never be more than a phone call away, and if they are open, 4) visit at their home where they feel they can keep an eye on their child. 5) Bring them a small (concealable) serving of something they would love to eat, but wouldn’t make for themselves. (Like non-gluten free cupcakes or cookies if they have a special diet for their kids, but not themselves). It needs to be concealable so you don’t trigger a melt-down in your friend’s child(ren) if they see something that looks good, but cannot eat. 6) Do something as simple as offering to take your friend’s trash out, or bring them something they need from the store. You’ve no idea what an ordeal going to the store can be at times. 7) Don’t compare your neurotypical child problems to theirs. They’re different. Trust me. Just listen and empathize. 8) Offer advice only if asked. We appreciate the willingness to help, but you probably don’t know all the things we’ve tried, nor do you know all the quirks or our child(ren)’s personality. That being said, I would still suggest 9) you learn what you need to do and offer respite care for overwhelmed parents who never get a break, and then consistently show up for them. This will be a long-term commitment, but probably welcomed help.
The unknown can be scarier than usual for ASD kids. Transitions are hard. Really hard. You need to show up consistently (with the parent at first) to help the child learn to know and trust you before the parent can leave. I have four ASD kids myself, but I live hundreds of miles away and I am less help to my sister-in-law than someone who lives closer and shows up regularly. My nephew simply doesn’t know me as well, and it could cause him distress. Given the choice between me watching my nephew or a good friend who is always nearby, I know she’s going to pick the good friend because of familiarity. So show up and keep showing up consistently. I am always there for my sister-in-law in other ways (like being a sounding board).
Needing extra help is especially true of families who have more than one child. Sometimes a long shower or bubble bath when you know all your kids are cared for is the most glorious gift you can give to a mom (special needs or not).
Again, be there for your ASD friends. Show up and take action, and be prepared to learn how amazing these parents and their kids are. If you’re an ASD person or family, hang in there, know you’re not alone. If you like, share this article with your friends so they know how they might help your amazing family.
Have an awesome day.
