Autism Doesn't Scare Me

I think the fear of autism is something that is very real.  It seems like such a dreadful thing to have a child diagnosed with autism.  I get it. Personal friends message me all the time and want to know if vaccines cause autism...if there is something they can do to prevent it.....if there is a way to know.  I don't fault them, but I do wish I could change their mind.  Everyone wants a perfectly healthy, "normal" child.  I thought I wanted that as well.  I'll admit there was a level of fear when I realized Drake wasn't developing typically.  I started noticing differences way before he was a year old.  I thought perhaps it was paranoia.  I was expecting something to be wrong...I knew it was coming...I was anticipating it. 

Sixteen years ago I gave birth to a seemingly healthy baby girl, less than a year later she was gone thanks to Congenital Heart Disease.  So, as you can imagine, I was on high alert when Drake was born.  All the tests came back that he was healthy.  He doesn't have CHD.  He is going to be just fine, the doctors said.  

When I realized Drake was indeed autistic, around one year old, I was fearful. Fear comes from lack of understanding.  I didn't know anything about autism.  All I knew was that my baby had it.  I also knew it wasn't a death sentence.  I began to realize it was just a different way of life. 

The next year and a half I researched/read/studied any and everything I could find.  I researched the best therapies, the best doctors, the best clinics, and the best parents/advocates to understand.  I tend to be that type of person...I want to know it all, and I want to know now.  I didn't want any surprises.  I expected the worst, but hoped for the best.  

Now, some five years after Drake's diagnosis, I can confidently look back and see that I did all that I could.  I am doing all that I can.  I have him at one of the best therapy clinics, he attends an amazing school, he has a great team of therapists, paraprofessionals, teachers,  and doctors.  I quit my job and my husband became the sole breadwinner so that we could make all these things happen. Doors have been opened and closed, and each step has benefited Drake in some way.  I've learned over the last five years to trust that God is working this all out for his good. Even when I become anxious about a change, I've learned to allow it happen because it somehow always benefits Drake.  The past couple of years we have been in a good place.  Things have been mostly good.  

But lately, things have not been so good.  

Summer has always been my favorite time of year.  The days are longer, the pool is open, my husband is on vacation more, the sun is warm, and it's more time with family.  This summer has been unique in that, I'll be glad when its over.  Drake has had a tough time with anxiety, OCD, ear infections, sickness, lack of appetite, poor sleeping, and just not himself many days. Now, all of this is somewhat normal in an autism household.  Things change.  Regressions happen.  Children change and develop. Sickness is inevitable. I would even say that some things like sickness are more difficult because many times the child cannot verbalize what exactly is going on.  Yeah, it's tough and there is nothing wrong with admitting that.  It's a helpless feeling when you don't know how to make your child feel better. 

But, because I have level of PTSD from losing a child, my mind goes into overdrive.  I think the worst possible thing.  

Brain tumors

Leukemia

Any other horrible, incurable disease you can think of (insert here).

You see, autism doesn't scare me in the least.  Losing this child does. I don't think I could do it again. It keeps me awake at night...wondering, watching, waiting.  

Drake is the most magical, happy, entertaining, funny, easy-going, go-with-the-flow, little guy you will ever meet. The thought of losing any of that absolutely petrifies me. 

I'm not worried about him being non-verbal. I don't worry about his unusual stimming, his repetitive habits that drive me bonkers, his limited diet, his strict adherence to routine, or his hyperactivity.    I'm not worried about any other thing that autism may throw at me.  But I do worry about losing him...autism and all. 

So you see, when other "advocates" talk about their hardships and how much they hate autism it gets to me.  When they moan and complain about any and everything they can think of....it turns my stomach. Perhaps I'm being a bit judgmental.  Quite honestly, I have a right to be. If I can so easily be judged for keeping a positive attitude 99% of them time, then you can better believe I will judge you for complaining that your kid won't sit for more than three minutes. My thought, "be thankful you have a child, period."  As I have said many times, there is nothing wrong with saying things are hard.  There is nothing wrong with talking about the hard things (respectfully).  But when the 'hard' becomes your mantra I think it's time to stop what you're doing and be thankful for your living, breathing, autistic, beautiful child. 

Just be thankful.  Be thankful for every single moment. I know that all of this will pass with Drake. Things are better than they were, it's just a matter of continuing to work to figure out what is bothering him. We have a couple of doctors appointments coming up to try to get his ears back in tip top shape and an appointment with other doctors to get the anxiety in check. That doesn't mean I will be any less paranoid and crazy, but at least I'll know I'm doing all I can do to help him.  

I will never be afraid of autism.  For me, I cannot imagine Drake being any other way.  I love his quirks, his personality, his attitude, and his appreciation for the simplest of things.  Everything about this child has made my life better.  I was given a second chance to be a mama and I will never be bitter and think autism ruined that. On the contrary, autism made our lives better.  You are welcome to disagree with me, but don't you dare tell me I'm not being realistic.  Autism doesn't scare me in the least, but parents who think autism has ruined THEIR life...they scare me.  They should scare you too. 

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