Something really amazing happened last Friday.
We went to a birthday party. There were a lot of kids, as you can see. (Tosh is top row right)
The party lasted three hours, he ate way too much candy and cookies and there was a bounce house and balloon fights. It was extremely stimulating.
And yet, for the first time ever, NOT ONCE did I hear somebody complain about his behavior. No Tosh pushed me, or Tosh took my toy, or Tosh won’t stop kissing me, or Tosh won't stop screaming.
He even sat still on a stone wall and waited patiently for the other kids to line up for a photo.
Now, you can see him sitting off by himself in the photo. He stayed in the jumper with the little siblings while the other second graders went inside to watch Mary Poppins Returns. He didn't always participate like his neurotypical peers.
But who cares? He did plenty of things with them and most importantly, he had a freaken blast without having to be corrected all afternoon.
I credit at least part of this experience to his amazing behavioral therapy team. ABA gets a bad rap in many circles. I've seen it called abuse, the cause of PTSD in autistics and compared to gay conversion therapy.
The assumption is that ABA aims to eliminate all autistic behaviors to make the child appear as normal as possible. And the alleged motivation is parental embarrassment.
Maybe there are some ABA providers out there that sell their services this way. Maybe that’s the goal of some parents.
But that’s not what’s happening here. Tosh’s ABA provider lets him be himself. They encourage the games he plays with his alphabet animals. They let the kids stim and provide sensory supports. They are sweet and loving and only want him to be the best version of himself that he can be.
The only behaviors we work to eliminate are the ones that keep Tosh from going out into the world and interacting with people. The behaviors that could get him arrested or killed by police. Behaviors that keep him from going on vacation or going to parties. Behaviors that keep him from learning and living to his full potential.
The behaviors that draw stares, like loud nonverbal noises, playing with age inappropriate toys or not caring about the latest movie, aren’t important to me or his ABA team.
And with time, as neurodiversity acceptance improves, I don't think those behaviors will be very important to anyone. In fact, the only people who have a problem with his autistic behaviors that don't cross the line into unwanted physical contact or disruption are older people.
His peers accept him. In fact, we entered the party to a chorus of “Tosh! Tosh is here!”
If you're scared of trying ABA therapy because you've heard horror stories, don't give up. I was very hesitant at first and refused to do it until he was almost seven years old. I read every last word of my provider's fine print before sending Tosh to his first session, observed his behavior very closely for any signs of abuse and decided I would give it six months and if I didn't see any improvement or felt uneasy about anything, we would quit. I also insisted that his provider work with me, not dismiss my concerns or put their own plan into place without my input.
Not only does our provider accept my input, they encourage it.
I've done a complete 180 on my opinion of ABA therapy. Tosh is still himself, but he interacts more with both autistic and neurotypical kids, he's learning (both academically and in speech therapy) and he can do more things in public, which makes him very happy and will lead to a more fulfilling life.
Kids with autism need a lot of support and we give it to them. Behavioral therapy, speech therapy, OT, IEPs, special diets, sensory rooms, consistent routines ... we do so much for our children.
This autism parenting gig isn't easy, which means we also need more support than other parents.
We don't provide it for ourselves.
To be a happy, healthy and effective autism parent, you MUST put the right supports into place. A helpful spouse, helpful family and respite care are the most common support systems, but many parents don't have those things. Maybe you're a single mom like me with no family nearby. Or maybe you live in a state that doesn't offer respite care.
Here are three other things I do for myself that make my caregiving more efficient and effective so I can focus on my business, our health, Tosh's education and our happiness.
1. Molly Maid
I often say I'd give up my phone before I gave up my regularly house cleaning service, and I'm only half kidding about that. It took me a long time to hire a house cleaning service because there's so much embarrassment and guilt involved. But once I got over it, I never looked back and I have zero shame about it. Clutter and filth drive me crazy, but my time is so limited I can't afford to burn an entire day or half a day every week cleaning house. I have no problem keeping my kitchen clean, doing laundry or picking up clutter, but bathrooms, floors, dusting and the rest doesn't stand a chance against my busy autism mom and work schedule.
Plus, I don't want the chemicals in the house where Tosh can get into them. He doesn't need to inhale the fumes while I'm cleaning, either. I see this as a necessary support service for Tosh and for me. I highly recommend Molly Maid - my team is excellent and the price is very reasonable. They're located in several metro areas around the country. Let me know if you try them out!
Grocery shopping is almost as much of a time burn as house cleaning. Plus, I get overwhelmed in supermarkets - all the different smells, temperature changes from aisle to aisle, too many choices and that gawd awful fan that blows a gale force wind on you when you enter - it's just too much. Even with a list, I get so rattled I end up leaving without things that I need and instead coming home with things I'll never eat.
Instacart is my savior. Even though I live in the greater Los Angeles area, we don't have a Whole Foods nearby so I can't use Amazon grocery delivery. But I can use the Instacart app to add things to my cart throughout the week so I never forget anything. There's also a chat feature so you can nag your shopper to make sure the berries on sale aren't moldy or to select the ripe bananas instead of the green ones. It's $99 for a year of unlimited free deliveries. Less than $10 to never have to go grocery shopping again? Hell. Yes. Plus, the app informs me that I've saved more than 90 hours of time using Instacart since I first signed up last summer. That's time I've used working, cooking autism-friendly meals for Tosh, exercising and homeschooling.
They even give out a code that gives new customers $10 off their first order (plus I get $10 off!), so please use this obnoxiously long link if you'd like to try it out: https://www.instacart.com/?code=HANDERSON1F21F8&utm_campaign=off1&utm_content=referrals_page_3&utm_medium=ios&utm_source=instacart_referral&utm_term=sms
3. My son's iPad data plan.
Last year I added mobile data service to Tosh's iPad. Why did I wait so long? I have no idea. It's ridiculously cheap, like $15 a month, and it allows him to stream his favorite movies or watch YouTube wherever we are. As I've said before, for kids with autism, access to screen time and their favorite movies or games is very important. Our kids use these tools to help them regulate themselves in public or in unfamiliar surroundings. For some people with autism, access to that screen is the ONLY way they're able to go out into public. The ability to go out into the world is a human right, so don't let anyone make you feel bad about providing that support for your child.
I've also used his data plan to restore his Proloquo2Go from backup a few times when he's found a new and inventive way to get into the app and delete part of all of his words. Access to communication at all times is a must, and again, a human right. We can also homeschool from anywhere, since he uses both math and language arts apps for academics.
Let me say this one more time: as an autism parent, you need extra support systems in place. What might seem extravagant or selfish to someone else is a different story for you. Don't let the opinions of others who have no idea what you're going through keep you from making your caregiving responsibilities more efficient and effective so you can be healthy, happy and sane.
Heather Anderson is a blissfully happy autism mom and lover of life in Southern California who is on a mission to help autism parents rediscover their happy place.
Please join me on this beautiful autism journey. The Autism Oasis is a fun, supportive and educational community where your personal development is just as important as your children's. You are more than just a caregiver!