Things Autism Has Taken From Me

Last year, I lost a tooth.

When you're seven, it's expected that you'll lose a tooth.  When you're ninety-seven, it's expected that you'll lose a tooth.  When you're thirty-seven, you should not lose a tooth.

But I did.

I lost that tooth because several years ago, I had a root canal and a temporary crown put on but I was pregnant with kid number one at the time and so my dentist decided to hold off on the permanent crown.  Dumb, dumb, dumb.  See, I hate the dentist and so when he gave me permission to not worry about it for awhile, I held onto that.  Because then I got pregnant a year after the first kid was  born.  Then when the second kid was six months old, we moved away from my dentist and then we didn't have dental insurance anymore. 

And people, crowns are expensive, like mortgage-payment expensive. 

But everything was fine.  My temporary crown was awesome.  I avoided eating crunchy things on that side and lived in happy ignorance.  Until one day, the temporary crown fell out but that wasn't so bad because we now had dental insurance except we now had two children with autism.  Kids with autism need things like ABA therapy and occupational therapy and speech therapy.  All of which cost money. So, I didn't get it fixed and the filling fell out and I still didn't get it fixed and finally, the tooth fell out in pieces.

Every day, I am reminded of this because I have a hole where my tooth should be.  It's embarrassing. I know many of you are thinking, "Um, why didn't you just go to the dentist and get it fixed?"  I'll tell you why: I am terrible at taking care of myself.  I'm terrible at putting myself first, at spending money on myself, at taking the time to do any of it.

Most moms have to put a concerted effort into self-care. They have to make time to get a haircut or a manicure or exercise and they tell themselves to not feel guilty about it (because they shouldn't).  As an autism mom, the guilt is worse and the amount of work is just more.  If you think about it, most typically developing six year olds can dress themselves, tie their shoes, and get their backpack ready for school.  My six year old still needs me to do all of those things for him.

So, when it comes to taking care of myself, I have less time and more guilt.  If it costs money, it's especially difficult for me to do because I can't enjoy myself.  I keep thinking about paying for that therapy session or that Daniel needs new glasses again.  If I'm able to sneak away for a nap, I feel guilty because I'm resting and not taking care of things I should be doing.  The hassle, the money, the time.

That tooth is just one of the many things autism has taken from me.  Here are a few others:

My Pride

I've always been an extremely independent person.  I like to take care of things on my own. Another way of saying this is: I don't like to ask for help.  But, as our autism diagnoses came in, we became more and more overwhelmed and it became obvious we did need help.  But it hurts.  It hurts just a little bit when I have to ask for help.  And each time it gets a little easier too because each time a bit of that prideful nature of mine gets chipped away.  Guess what?  Things are easier with help. Guess what else?  People want to help.  They just aren't sure how sometimes.

Little by little, I've had to come to grips that my family is not perfect or "normal."  Our family looks different and acts different.  We're loud, we don't follow directions well, but we're here to stay.  Sometimes, it's a hit to my pride when I see how different we are.  It's humbling but it's us; It's who we are.

My Judge-iness

It wasn't so long ago that I was that person who saw a kid throwing a tantrum in a grocery store and thought, "I will never be that mom with that kid."

Aaaaaaaand now, I am that mom with those kids.  Having kids with autism has made me lose the judgement and gain some compassion.  Being a mom is hard; being a mom with a special needs child is really hard. Being kind, empathizing, offering help, those are ways to react when I see a parent struggling and a child melting down.

Goodbye judge-iness.  Hello compassion.

My Peace of Mind

I live in a constant state of half-worry.  My children, their autism, their futures, it's always on my mind.  What will happen to my boys when they aren't cute little kids with autism but grown men with autism?  How will they survive?  What will happen to them when I die?  Who will fight for them?  And the ever-present, am I doing enough?

The worry is always there, in the back of my mind.  Some days, the worry coats everything and just makes the world seem lackluster and hazy, makes it hard to see the good things. But I do know that God allows me (okay, sometimes forces me) to see Him in my children, especially during these times.  He gave them to us; He will equip us.  On the bad days, I have to put that on repeat in my head to drown out everything else.  It seems no matter how many times I give up the worry, it comes creeping back in.  It's insidious.  I don't think it's a lack of faith.  It's a symptom of my struggle and where God will continue to work on me.

My Money

The U.S. Department of Agriculture estimates the cost of raising a child in the US until the age of 18 to be $240,000.  They also estimate the lifetime cost of raising and providing for a child (and adult) with autism to be $1.4 million.

Times two in our family.

The End

My Decorating Style

When I first got married, I was excited to make our house into a home.  I liked visiting home decor places, getting ideas online, and window shopping for things like couches and end tables.  Now, my decorating style has changed a bit to take into account our friend, Autism.  I just need to ask these three simple questions before making a home decor purchase:

Is it breakable?
Can it be destroyed in under 30 seconds?
Will Gideon try to eat it?

If I can answer yes to any of these questions, that item does not belong in our house. 

So, what are we left with?  Garage sale couches, thrift store coffee tables, and a lot of pillows.    It's definitely a . . . look.


My Heart

Honestly, the biggest thing autism has taken from me is my heart.  How can I not look at my two handsome, smart, funny boys and not lose my heart to them?  It's not always easy.  There are some very hard days (and weeks and months).  There will be more of them to come.  But my heart has been taken by these two boys who see the world so differently and yet find a way to live in it.  Their courage and their smiles go a long way to help me remember the hard stuff is always worth it.