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.
Tosh is making tremendous academic progress this year, and most of the credit goes to cooperation among his therapy and education providers.
Autism support services aren’t as effective when they’re served ala carte. Each service should dove tail the others and work together to achieve shared goals.
In particular, if your child receives outside ABA or other behavioral therapy, like RDI or sensory integration, these providers should work with your child’s teacher to address behavioral problems at school. At a minimum, someone from your ABA provider should attend IEP meetings to provide input regarding goals and how to address behavioral issues.
"Geez, lady, learn to control your kid!"
Oh, those rude, ignorant comments you always get from strangers whenever you take your autistic kiddo out in public. We've all been there.
Whether your tendency is to react with anger, embarrassment or tears, who wouldn't like to get to a place where those comments don't bother you one bit?
I've got a two-step process that can help you achieve that. It requires a healthy dose of empathy and the willingness to do a little deep diving into your soul, but the results are totally worth it.
1. Rude comments have absolutely nothing to do with you.
What comes out of peoples' mouths (yours included) is a reflection of how they feel about themselves on the inside. Judgmental people are telling the world they have a million faults. Intolerant people are telling the world how much they hate themselves. Sarcastic people or those who say something mean followed by, "just kidding," are telling the world they are passive aggressive and don't have the guts to say what they really think.
When someone says something mean about your kid or your parenting skills, what they're really doing is trying to convince themselves that they are a good parent. Chances are, that grumpy old man at the store who gave you a dirty look because your child let loose an autism shriek hasn't spoken to his kids in months. Maybe even years. It's Psychology 101 - we look for fault in others in an attempt to feel better about ourselves.
Look, everyone has experienced pain and trauma that has left lasting scars. Everyone is dealing with their own demons. The best response to people who are rude in public is to ignore them completely or give them a genuine smile, perhaps a quick apology like, "I'm sorry he startled you," and continue on your merry way.
Responding with anger, which most people tend to do (or want to do), will only make the rude person feel even worse about themselves, and they will in turn take that new pain out on someone else. You've only perpetuated a cycle of negativity in the world.
More importantly, your angry response will make you feel like shit because now you're in a bad mood. It will also affect your child, because kids with autism are little emotional sponges. If mom or dad is upset, they're upset. Then they'll act out because their upset, and you'll feel like a bad parent.
Remember, comments from complete strangers NOTHING TO DO WITH YOU. This applies to friends and family members, too. It's all about them, a little peek into their injured souls. A little kindness, then a quick refocus on your family, is the way to go.
2. Find out why the opinions of others affect you emotionally
Before you can easily toss aside a stare or rude comment, you need to figure out why you even care what others think in the first place. I mean really, who gives a shit what a complete stranger thinks about you and your family? They don't know you. You'll never see them again. Why in the world would that even bother you?
The answer is because they are triggering a painful feeling you've been carrying around for most of your life. Maybe when you were a kid you got the message that nothing you do is ever good enough. Or perhaps your parents were very sensitive to what other people thought of their parenting skills and whenever you misbehaved in public, you were punished excessively.
Maybe you secretly think your child's autism is your fault and when people notice it, you feel ashamed. (I have a science-y cure for that, by the way)
Everybody has experienced trauma and been taught limiting beliefs about themselves. It's a part of being human. Like it or not, nearly all parents pass along the negative feelings they have about themselves and the fears they have about the world on to their children. It takes constant work to become aware of these things and break the cycle.
If you'd like some help diving into your triggers and figuring out what's holding you back, join my autism parent support group, The Cabana. We're finishing up an online course on silencing your negative thoughts, which are rooted in your subconscious, put there by parents, teachers and others who in many cases meant well, but screwed you up a little bit anyway.
Next month, we're going to learn how to not do the same to your kids.
And on Thursday in our exclusive Cabana Facebook group, we welcome a special guest: Family therapist and host of Autism Blueprint podcast Janeen Herskovitz. Janeen is also the mom of a severe, nonverbal young man so she's been there, too. She's going to talk about the emotional roadblocks that prevent autism parents from justifying time for their own self care. She'll also take questions from our audience!
Click on the LEARN MORE link below and join today so you can attend this life-changing event!
I'm a member of a special needs parenting group on Facebook, and last week another parent posted something that was so relatable.
She wrote that while she normally just scrolls past and ignores posts by parents of neurotypical kids, bragging about their achievements, there seem to be more of them lately. All the dance recitals, awards and other accomplishments and milestones made her want to scream for them to shut up already, and appreciate how lucky they are.
The response from the group was overwhelmingly supportive because we've all been there, right? Especially in the beginning. I remember back when Tosh was a toddler, and I'd see all the cute little Facebook videos of first words, the happy birthday song, preschool holiday programs and the comedy of three-year-olds playing soccer.
Tosh couldn't do any of that then, and still can't do most of it now.
Back it what I call my dark days, when he was about four years old, just one video of a toddler saying something cute was so painful, I would become crippled with depression for days.
I hadn't even gone public with his diagnosis. Only family and a few close friends knew.
Then I began noticing a friend's Facebook posts. Deborah, a friend from college, has three beautiful kids. Two are neurotypical and one, her middle son, has Down syndrome.
But here's the remarkable thing: if you knew nothing about neurotypical milestones or society's expectations for behavior, and just read her posts about her kids at face value, you'd never know that one has a disability.
There's equal bragging for all three kids. As it should be.
I remember one family vacation in which Deborah proudly posted that even though her son wore a pull-up for the plane ride, just in case, not only did he not need it, he even used the airplane bathroom! Airplane bathrooms are weird and intimidating for everyone (at least they are for me) and we've all had (or are still having) our potty training victories and defeats.
That post was so brave and so inspirational.
Deborah also posts about things that make her son unique that have nothing to do with Down syndrome. He loves rock music, just like his dad. He's also a fan of the movie Grease and loves to dress up as Danny Zuko and sing along to the soundtrack. And he's adorable as hell!
I don't think she realizes it, but Deborah became my special needs mom role model when I really needed one. Encouraged by her pride in her son, I revealed Tosh's diagnosis and began posting about his milestones, achievements and adorable, endearing moments. And I couldn't care less if they were age appropriate or not.
When I did that, something wonderful happened. I began getting comments on my posts and DMs from friends who also have special needs kids, but I had no idea because they didn't share that information on social media. But they began doing so because they drew strength and inspiration from me. Deborah lit a spark that has grown into a fire.
Not only that, but friends who don't have special needs kids have become our biggest supporters, loving and accepting Tosh just as he is and celebrating his milestones as enthusiastically as the gymnastics medals and honor rolls.
And really, isn't that what we all want? For our kids to be celebrated just like the others?
There's plenty of disability awareness out there, but so many posts are negative and focus on the struggles. They don't present the child as someone who can learn and grow, and be absolutely adorable doing it, just like other kids.
As a parent, you can do your part to take awareness one step further, and turn it into acceptance by bragging about your child's achievements regardless of their age or ability.
You'll also feel the joy of being a proud parent, which is your right.
I don’t know about your family, but this has been a tough year for us so far when it comes to health. Both Tosh and I rarely get sick, but so far this year we’ve had a hard time shaking a flu bug that gave us bad coughs plus some stomach cramps and vomiting. As they say, it’s going around.
We know a lot about the immune system when it comes to fighting colds and flu, but did you know scientists believe our brains have an immune defense system that fights our attempts to make positive changes in our lives?
About two and a half years ago, when I was in a pretty dark place, I got into a fight with the guy I was dating.
I was feeling down and defeated. Autism was kicking my ass. Being a single mom was kicking my ass. My job was kicking my ass. Life was kicking my ass.
So naturally, I turned to my boyfriend for support and encouragement.
He did not respond as I had expected.
"You know what your real problem is? You need to stop feeling sorry for yourself and do something about it," he said.
Last night, Kansas State beat the University of Kansas in basketball, and I'm still flying high over my alma mater's victory over our intrastate rival.
A sports reporter I follow on Twitter observed that although Kansas State fans are very insecure about the rivalry, Kansas fans lose their mind when we beat them.
Well of course they do, I thought. They expect to win, whereas we are the perennial underdogs and expect the loss.
If you attended a state college, you know exactly what I mean. Most states have a flagship university - in our case, the University of Kansas - and a more affordable and accessible state school system, which I attended. The flagship school, whether it's officially a flagship or just implied, is considered the more prestigious campus.
Parenting a child with autism comes with the longest to-do list in the history of forever. There are IEPs and educational issues, behavioral issues, health issues, diet, sleep and it goes on and on and on and on (and on).
I've spent almost my entire career in credit unions, most recently producing financial education content. One day, while reviewing an article about strategies to get out of debt, it hit me: autism is kind of like being buried in debt.
It's overwhelming, exhausting, depressing and you don't even know where to begin.
Which is why financial management guru Dave Ramsey can offer the perfect advice to autism parents. When it comes to tackling your child's laundry list of challenges, treat it like debt and use Dave's Snowball Method.
This week, the autism community celebrated Haley Moss, a young woman who overcame nonverbal autism and very low expectations from doctors to graduate from law school, take her oath of attorney and begin her career this week at a law firm.
I found Haley on Twitter and began following her. As you can imagine, many Twitter followers wanted to know how she has achieved so much success.
She stressed two things:
1. Her success has not been a straight line. Like every one kid with autism, she took steps back along her path to forward progress. And even now, she said there are tons of things she still struggles with and is working to improve.
2. Her parents embraced her diagnosis and walked a different path with her, never looking back or wishing things were different.
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!