A Letter to the New Autism Parent

Welcome to Club Spectrum!

You didn’t want to be here, but don’t feel bad about that — nobody signs up for this gig. But think of it this way: At least you now know what the hell is going on now. And here are some tips to help you navigate the way:

1. Pace yourself. You are about to start a never ending marathon. Know when to take a break. Embrace the couch and some bad TV. Or if you are one of those gym goers, do that. Avid reader? Go fire up that kindle or go old school and buy a few books. You’re going to have a lot of time in therapy waiting rooms. Might as well enjoy reading some check your brain at the door novels. Know it’s okay to get absolutely nothing done on some days. Or weeks.

2. Get off the internet. It can scare the crap out of you. Seriously, stop playing Dr. Autism Google. You’re looking for the autism cure needle in a Internet haystack. Step away from the search engine.

3. Get on the Internet. I know, opposite advice. Here’s the twist. Get on social networking sites. Talk to other parents. Get to know them. Not just what they did to treat X Y and Z. You’ll get a better understanding if those choices are right for you. Autism can make parents feel very isolated. Sometimes it is hard to get out and network. Facebook, Twitter, and online groups are awesome. Mainly because when you are in the dark on your kid’s iPad hoping like heck the melatonin will kick in soon, you can chat away. (Don’t you go Googling melatonin yet. You read this all first buddy!) Autism parents/caregivers are always awake somewhere on the planet.

4. Be prepared to hear a lot of advice you did not ask for. Warning, it never ends. I find sarcasm and raising my eyebrows over my glasses helps a lot.

5. Respect your elders in the ASD world. Now don’t go taking their world as gospel, but recognize what they do works for them. You’ll see why as you earn your stripes. The kiddo is 8 and we’ve been dealing with all things autism since he was before 2. Trust me newb, what you are telling me to try, we’ve done. Seriously, do you really want to be the type of person I just described in item number 4? Don’t be that know it all parent out the gate. Remember they have been sleep deprived much longer than you. They will be quick to shut you down.

6. Accept the fact that you are going to try stuff that is totally not going to work. That miracle thingie you just read about in a chat group won’t do jack all for your kid. Meanwhile every other kid who has, is thriving. It’s the luck of the draw with this folks. You meet one kid with autism, you have only met one kid with autism. Some cures/therapy/meds will be duds.

7. Autism is effing expensive. So when Grandma or Uncle Frank wants to know what your lovey wants for their birthday, CASH IS KING! Don’t be afraid to ask for therapy and or lessons for something as gifts. These folks care about you and your kid. They’ll be happy to know what they bought is actually getting used. Not sitting around collecting dust.

8. Accept that some folks who buy gifts for your kid won’t do the above. You’re going to get a lot of gifts that your kid won’t even be remotely interested in. They meant well. They knew it was a hot toy. Save it. You never know. Maybe in a year or two, they might like it. Or donate it. Regift it. Return it for therapy cash.

9. Be open to doing stuff you think is ridiculous. You really just don’t know what your kid is going to respond too. Give it an honest college try before you realize if it’s a hit or a miss. This means diet, meds, therapy, supplements etc. Just try.

10. Take your kid out everywhere. I’m serious. It may be small trips at first, but it is the best thing you can do. You’re teaching them coping skills. Life happens. People have to food shop, go to the bank, post office etc. You would be doing it anyway, if they didn’t have autism. Know their limits of course. Baby steps first. Today, it’s a trip to buy milk. Another time, maybe it’s a trip to the pet store and the library. Life from now on will take military like planning. Warn them what’s coming, but go about your business. They smell fear. Seriously, the more panicked you are, they will turn that dial to “11.”

11. Allow yourself a pity party. Moan, cry, rant and rave and do it when you need too. More than once. Just remember you still have a kid that needs you. So, don’t dwell in it too long. If you find yourself doing it to far to frequently, know when to ask for help. Be it from a partner, family member, friend, or doctor. Yes, this isn’t what you planned but it’s here. So, now what? Exactly.

This isn’t about getting through it to an end point, this is your life now. This is your new normal. I can’t promise it will get easier. You will just get better at dealing with it. Be it through humor, prayer, yoga, crafting, blogging, or a thousand other escapism activities. You will do this. You can do this. Remember for as hard as you are working, so is your child. So now and then, relax and just order another side of fries.

Related post: 6 Perks to Having an Autistic Child