Can You Roll Like an Autism Mom?

If you've ever wondered if you could roll like an autism mom, here are a few things you'll have to get used to:

1.  Limit sleep to less than three hours a night. 

To do this right, stay awake until your kiddo falls asleep (this could take hours) and/or get up when they do (one of ours is up at 5 a.m. every morning.  Every morning).

Once you finally get in bed, lay awake for a couple of hours and let the anxiety creep in. You worry about a lot of things.  Top of your list?  The future.  For instance, most of us have children, raise them for 20 years, send them off to live their lives for 30 years, and then they come back and help take care of you in your old age for 20 years until you die peacefully in your sleep.

But when you have a child (or two) with special needs, things don't work that way.  They don't leave home; they stay.  They don't care of you in your elderly years; you take care of them.  Who takes care of both of you?  Who takes care of them after you're gone?  You worry about the day you may have to put one of your sons in a group home.  You worry about leaving your other children with the huge responsibility of taking care of an adult special needs sibling.

You worry about if you're doing the best thing for them. You worry that you don't give the other kids enough time and attention.

You worry about ARDs and IEPs and SPED programs and ABA therapy and OT appointments and why everything has to have an acronym.  You can barely remember my kids' names half the time.

You worry about if you remembered to put the clothes in the dryer or if you're going to have to wash them again (for the third time). Just FYI-you didn't so your clothing options the next day were, um, creative.

You worry about worrying too much.

Sometimes the only thing you can do late at night is pray until you fall asleep.

2. Become an expert at assessing new environments.

Going to new places is a logistic nightmare because you don't know what you're getting yourself into.  If someone is kind enough (and cracked in the head enough) to invite your gang over, you warn them ahead of time and you ask questions: 

"You put your breakables up, right?  Like way, way up."
"Is your backyard fenced in?"
"How secure is your gate/front door/windows?"
"Do you have poison control on speed dial?"
"Will there be any open flames such as candles or fire pits?"
"How does your dog feel about a very affectionate six year old?"
"Could you use police tape to restrict access to off limit areas?"
"Will there be wine?"
"Can I bring dessert?"

Everyone asks these kinds of questions, right?

Once you get to a new place, you scope out all the possible trouble spots and, of course, possible escape routes.  One of your sons is both a master strategist and Houdini all wrapped in one.  You then spend the rest of your evening on the edge of your seat and with eagle eye accuracy, you count.  You count and you count.  1 kid-2 kids-3 kids-where's number four?  Where is he?  Oh, okay, he's in the backyard eating dirt.  Okay.  Good. 

If you're out in public with wide open spaces like zoos, parks, and, Lord help you, pools, you're on hyper alert.  You can't sit back and relax like the other parents sitting in lounge chairs at the side of the pool; you have to be in the water, whether you are swimsuit ready or not.

You're holding at least one hand at all times at the zoo just in case someone gets the bright idea of jumping into the orangutan enclosure. You make it a point to know where all the exits are as well as bathrooms and first aid stations, and you bring 19,854 snacks and drinks plus charged up tablets.  There's also a change of clothes, and a back up change of clothes, and yet another back up change of clothes for you, and wipes.  You wear a backpack everywhere you go. It's one the boys' old Cars backpack (crossing your fingers for a Frozen one for Mother's Day) so that your hands are always free.

Let's just say you're tired before you get there, just from getting ready to go.

3.  Become a Mama Bear

As soon as you hear an autism diagnosis, you have officially become your child's (children's) advocate for life. You will speak for them, fight for them, defend them, and support them with your last breath.

You will learn all about therapies (occupational therapy, speech therapy, applied behavior analysis therapy, food therapy, music therapy, biomedical therapies).  You will learn the two worst curse words in the history of all curse words: insurance company.  You will learn no is only the first answer they'll give you.  They'll learn that too when you become a persistent and painful boil on their butt until they give you what your child needs. 

You'll attend ARD meetings and create IEPs and learn to follow up to make sure all those accommodations are actually being implemented. Some teachers will love you; others will run when they see you coming. 

You'll get really tired of having to fight for every damn thing your child needs but you'll get over that too.  This Mama Bear does not hibernate; she does bite.

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Being an autism mom is not for the faint of heart but I am not a superhero or incredibly special or someone to be admired.  In fact, once upon a time, I even said something like, "I just don't think I could handle having a special needs child."  (You know you're thinking the same thing right now and it's not true.)  If it's your child who is hurting, needs help, needs you, you will figure out a way to help them.  You'll lose sleep and you'll fight.

You'll survive.