Dear Young (Mom) Sarah,
I’m writing you this letter on Autism Awareness Day. It’s 2018. Right now you’re sitting in the early 2000s and you’re overwhelmed and confused and frustrated with autism. It’s new and something you’ve never heard of until now. Activism, pride, and awareness are not on your “to do” list. In fact, right now you want to hide the fact that J has autism. You’re secretly hoping he’ll “grow out of it.” You’ve gotten your hands on every single resource and it’s almost impossible to find information, studies, and narratives about teenagers and adults with autism. You’re terrified of what the future holds for J because no one in the early 2000s can tell you what the future for an autistic child will look like. It’s all about early childhood development right now, which is great, because that’s where you are on this journey, live in that moment.
I’m writing to tell you that it’s going to be okay. It gets better–a lot better. And sometimes it gets worse and then it gets better again. But the next few years will be okay.
- You will feel really alone, isolated, and overwhelmed for much of your parenting experience: The beginning will be really hard. You’ll go to playgroups and moms will talk about how “advanced” and “brilliant” their children are because they can do x, y, and z. J won’t be able to do anything of those things for a few more years. But I’ll let you in on a secret. You’ll learn that most parents feel alone, isolated, and overwhelmed in one way or another. So don’t resent those playgroup moms. They’re dealing with their own stuff you don’t know about. And if they haven’t yet, they will. Life is really hard for everyone. The difference is you can’t hide your struggles, because they’re a 2 foot tall walking display of tantrums and bad behaviour. That will get better, I promise. Be friends with the playgroup moms. One day you’ll be able hear their stories and they won’t be much different than yours. You are not alone.
- Social media–it’s the wave of the future, and you will be SO glad that it’s not around right now: Yes, there’s a little bit of blogging going on right now in the interwebs, but in about 5-10 years, knowing everything about everyone else’s life on the internet will be status quo. In a lot of ways, it’s mom group on steroids, except you can use filters and things to make colours brighter and hide all the ugly spots in the picture. You can hide your messy house, your messy kids, the dishes in the sink all by taking it from the “right angle.” You can take 1 000 000 000 000 pictures until you find the right one to post and show the world your fantastic life. Right now your medium is 35 mm and hope for the best. Your life right now? Totally not Instagram worthy–autism, grad school poverty, living out of boxes–none of that will look good on Instagram or social media. Be glad for that. I can’t imagine the struggle parents of kids with autism have right now in the social media/Instagram world. On the other hand…
- Technology–Technology will be one of the greatest tools you will ever have. It makes teaching and living with autism 1 000 000 000 000 times easier. That 35 mm camera you have right now to take pictures of the toilet, toilet paper, sink and soap? You know how you have to take that film to Target and decide if you’re going to pay the extra $ for 1 hr development or wait a week to put that potty training social story together? In 5 years, you won’t have to do that. You can take a picture on your phone and download it to your computer and print it off in 10 minutes or less. You can take 1 000 000 000 000 picture to get the “right angle” of the toilet you need, and not pay a dime for the bad prints! Better yet, you can copy and paste almost any picture you can ever dream of off Google Images and make your social stories in no time at all. J will be a PHENOMENAL typist some day, and his handwriting will be horrendous, and so computers and keyboards will be a HUGE help. Seriously, the technology in the next 5 years will be life changing.
- Keep learning more, finding therapies, and researchimg: No matter how many times you get burned out from it. There will be times where you will throw your hands up in the air and say “I’m done. It just is what it is, and I can’t push or reach anymore.” And then next day, you’ll be back at it. Because you’re stubborn, and because J is stubborn, and because all the hard work does end up paying off. It really does pay off, and let’s be honest, you’re kind of obsessed with learning anyways. Go to all the conferences (you’ll even get to meet Temple Grandin at one of them). You’ll get to know J’s brain and learning disabilities pretty well over time, and you’ll know which avenues to pursue in more efficient ways–you’ll have to guess a lot less, saving a lot of time and hair pulling. Right now, you’re trying all the things. Keep trying all the things. No knowledge is ever wasted.
- You will have a lot of people who are cheering for J: And you will have some who are not. But mostly you’ll have a big cheering squad. You won’t see them all the time. You’ll live really far away from your parents and inlaws, but they’re cheering you on. You’ve got parents at school that will cheer you and J on. You’ve got teachers that will fight tooth and nail for J, and you may have a few who don’t. But that’s okay, because you’ve got a great village and people will step up in the ways you need it. Or go to battle for you when you need it. You’re not alone. There are a lot of good people in this world.
- It will happen, you’ll just have to wait a little longer than everyone else: You know how it took forever for J to learn how to walk? Ride a trike? Ride a bike? It took a little longer than everyone else but he learned it. The same goes for speech and academics. It will take a little longer, but he’ll learn how to talk (and sometimes talk WAYYYY to much). He’ll struggle at academics, but he’s a hard worker, and you’re a hard worker, and you may have to work over summers, but he always figures it out eventually. It’s like he’s delayed 2-3 years. Give him time. Be patient with him.
- Your white, middle-class bubble will burst a little: You’ve had a really easy peasy, privileged upbringing. Like, really easy and privileged. You never had to fight for equal education, opportunity, or treatment. And now you will have to. Not as hard as some parents and kids with autism will, of course. J will still have a pretty privileged upbringing, even with his autism. Privileged white girl life never made you really look outside of your bubble, and though you’re still white and privileged, you know there’s a world out there outside of your bubble. Yeah, it hurts not to being safe and secure in the middle of the comfort bubble, and that’s how you will become very aware of those left out in the pursuit of equal opportunity–people of colour, people living with disabilities, people living in poverty, people with mental health struggles who are living WAY more outside the bubble than you. When you’re not to overwhelmed in the autism experience, try to go out and find ways to support them too.
- You won’t always care so much about what other people think: Okay, you still will care a little. But not nearly as much as you do now. Right now you feel like you have the equivalent of an autism bat signal shining on you 24/7, and people are judging J and your bad parenting techniques. Part of that’s in your head, and part of that is real. It will be about 5-10 more years before the stranger comments on your parenting really stop. But by then you’ll have the mentality of, “OK, let’s see your strategy. I’ll gladly proclaim to the world that I’m the worst parent on the planet if you can get him to stop this, or listen to that, or whatever.” But until then, I just want to let you know that right now you care so much because you feel like you don’t know what the heck that you’re doing and everyone can see that. Spoiler alert: No parent knows what they’re doing. If they tell you they do, they’d be lying.
- Don’t feel guilty that you don’t find healing in support groups: You’ll try a few. Some of your friends will find a lot of support and connection in them. For the most part, you won’t. Because your needs are a little different. Find your support where you feel most comfortable–your sister, your mom, J’s teachers. It takes years to heal and to be okay with yourself and with J.
- He’s really incorrigible right now, but deep down, he’s a really good kid: Right now he’s the most stubborn kid on the planet. And he’s really badly behaved–poor guy, that’s because of his anxiety and sensory issues. It will take a few years to really understand what “sensory issues” means. It will take even longer to understand anxiety–and even longer than that to accept that you won’t fully understand his anxiety, and that you just need to respect it. But really, he is a great kid. He really is. He’s kind and hard working (that’s where that stubbornness can be an asset). He really is a good kid.
- Education is more than public school: You identified with Hermione Granger in the Harry Potter series for a reason. You were a book smart kid. You loved public school. Your mom was a public school teacher. Public school is great, and will be great for J in many ways. And in other ways it won’t be. You’ll have to supplement on your own where public school doesn’t meet his needs. You will need to pull him out for part of the day in middle school to help with academics and have him work in an environment that is less stressful. Since J’s brain is different, his brain doesn’t learn by traditional teaching methods. Do all the research. Go to all the conferences. They’ll help you supplement the public school experience.
- Don’t feel guilty when you need to run away: You will need to leave your family multiple times a year–Steve, J, and W. It’s okay. The house won’t burn down when you leave for that weekend to hang out with a friend or family. You’ve got great friends and family. They will help recharge you.
- Don’t get caught up in the “why”: You will never know how or why J “got” autism. For a lot of people (parents with or without autistic kids) this is a big, hot topic. When people tell you their theories, smile and be considerate. Autism is an enigma and no one really knows why certain people get autism. But don’t be afraid to be vocal about vaccines and bad science. Don’t ask me how it happens, but in a few years science doesn’t really matter anymore. Weak research, poor sample groups, non-replicated studies seem to be more popular than good science with data that can be replicated and verified. Ten years from now, it won’t matter who your source is or where you get your information from. Like I said, I have NO IDEA how this happens. Stand up for good science. Good science helps with developing treatment and therapies. Who knows, maybe one day there will be a cure. But for now, don’t worry about that. Make sure J has the best life he can right now.
- He makes it to high school, I promise: I know he can’t sit on his carpet square more than 7 seconds and sitting in a desk sounds utterly impossible, but it will happen. I don’t know what happens past high school, but I’m pretty sure, we’ll figure it out when we get there. We did at every other transition–preschool to elementary school, elementary to middle, and middle to high school.
You’re a warrior woman. You’ve got this.