This post is from Mama Fry. This blog was originally posted on her blog "Autism with a side of fries" here. You can follow her blog on Facebook here and Twitter here. Download the free Autism Speaks 100 Day Kit for parents of newly-diagnosed children 4 years old and younger. Download the free Autism Speaks 100 Day Kit for parents of newly-diagnosed children between the ages of 5 and 13.
Welcome to Club Spectrum! You didn’t want to be here. Don’t feel bad about that. No one signs up for this gig. Think of it this way — at least you now know what the Hell is going on. Better than not knowing at all. Mama Fry ain’t no expert, but I do have some tips that help you from going crazy.
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 younger than 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 four? 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, your kid 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 to. Give it an honest college try before you realize if it’s a hit or a miss. This means diet, meds, etc.
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 your kid 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 to. 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 too far too 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.