Monday, November 7, 2016

910 Days Later

It has been 910 days since Drake was diagnosed with autism.  I knew long before May 2014.  I think I first Googled the words "poor eye contact" around the first of September 2012.  Drake turned one year old on the 30th day of that month. I hear so many stories of parents who are devastated upon hearing an autism diagnosis.  I remember leaving the psychologist appointment with a mission.  The doctor didn't tell me anything I didn't already know.  In fact, I needed the diagnosis so Drake could begin receiving therapy.  It was the day before Mother's Day and I remember driving home, allowing only one tear to roll down my face.  There wasn't time for more.

Before Drake was officially diagnosed I lost years off of my life researching and obsessing on the best ways to help him.  We received a little therapy at home through the EI program, but nothing was really helping.  Drake did not respond to the therapy and I was totally at a loss. I knew there had to be something more effective.  It took me months of research to find the right fit for him.  I knew almost immediately when I entered the doors of Drake's therapy clinic that we were home.  For the first time in two years I felt relieved...and for the most part I've felt this way since.  I'm giving you all a little bit of our history because I need you to understand something.  I need you to realize that you will survive all of this. It will seem like the end of the natural world, trust me, I remember.  It's not the end at all, it's just a brand new beginning.

I'm writing this to YOU.

I want to tell you a few things that about yourself and I want you to read carefully.


1.  This is the child you are supposed to have. He/She is yours and you are going to be a good parent, probably a better parent because of this unexpected path.  Yes, I understand that you didn't expect this.  I know this isn't what you planned for.  I know.

2. Stop feeling sorry for yourself and get on the computer, phone, email, and whatever else to find the best therapy for your kid. The earlier your child receives therapy the better.  I'm not going to tell you which therapy is the best (Yes, I know that is what you wanted me to tell you), you have to decide what is best for your child.  There are so many effective therapies out there...find the one that will best help.  You know your kid, not me.  If you need financial support, get it.  If you need an advocate to speak for you, find one. If the school system isn't helping you then gather up about 10 therapists, advocates, family members and show them what is up.  Seriously.  Be demanding.  Be crazy (that is what they will call you anyway), but get what your child needs.

3.  Your child will develop at his/her own pace.  Read that again.  It will be at their pace...not yours.  Write that on a post-it note and put it up in the bathroom, stick one on the fridge, put it on the dash of your car...tattoo it. Just don't forget it.

4. You will meet people who will astonish you with their ignorance.  But.  You will meet far more people who will astonish you with their understanding.

5. You will probably cry a lot in the beginning.  I'm saying this only because I hear other people talk about crying.  It takes a lot for me to cry.  My brain has been so altered by life that it tends to take more than an autism diagnosis to shake me up.  Don't get me wrong, I have cried...but probably not as much as I should.  Get it out. CRY.

6.  You will need to let go of people who don't get it.  I didn't say slap them, curse them, kill them, or put them on a hit list.  Just let them go.  If they don't support you, let them go. If they don't understand what you are telling them, let them go.  If they don't believe your kid should be labeled, let them go.  If they tell you that you "baby" your child too much, slap them.... Just kidding...let that idiot go too. Walk away.  Don't look back.  You'll meet someone shortly who will get it all, I promise.

7. You need to look at the world through your child's perspective. It's beautiful.  It's simple.  It's not complicated like our world.  Don't focus on making sure your child acts like everyone else. When you get to that place, and you will....you'll begin to notice a beautiful world that you never knew before autism came into your life.  Drake absolutely loves to watch the trees outside when the wind is blowing.  The look of amazement and peace on his face is a sight to behold.  Be willing to enter their world...they want you there.

8.  You need to find something that helps you get through this, something that is legal.  My release is writing.  I feel raw when I'm done, but I also feel refueled.  Of course, it doesn't hurt when my hot husband takes me away for a weekend once in a awhile either.  I've heard of people taking kick boxing because they are angry and need to get it out.  Some work out(not me, but some people).  Go watch a really violent movie (you'll leave feeling empowered and ready to conquer the world).  Get your nails done. Get a pedicure.  Go for a walk in the woods.  Paint. Scream. Cry.  Just don't forget that your kid needs you and you can't get them the help they need if you are empty.

9. You will be a different person soon.  You'll look back at some point and remember the person you were.  It will seem surreal.  It may seem sad.  You will be fine. For me, I was a teacher.  I loved teaching.  My middle school students taught me the fluent art of using sarcasm and I will love them always for it. I miss teaching, but my life is different now.  I am so intently focused on autism that I can't imagine doing anything else.  I hope to one day be able to work again, but for some reason I can't see myself working outside of the autism community.  It has become such a part of my life and honestly, I'm better because of it.

10. You are going to be okay.  I promise.  You've got this.  You are a warrior.  Your kid is proud of you. I am proud of you. One day you'll look back and realize you are laughing more than you're crying.  You'll realize that the little things are often bigger and better than the big things.  Parents of kids with special needs never take one moment of development for granted.


Now, get out there.  You've got work to do.  Find your tribe and lean on them.  Make that phone call, write that email, drink that 8th cup of coffee and for goodness sake...get off of Google. Your child needs you to be their voice, their advocate, and they need you to believe in them.  Always believe in them.







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