April 2, 2013 is World Autism Awareness Day. As you notice, my blog post for today is called Battle Scars for a reason. Being the parent of a child or children with Autism, Asperger’s, and PDD-NOS is like going into battle on a daily basis, you know what your enemy is, you just don’t know how to attack it. It is like going into battle minus your M-16A2, Kevlar, and bulletproof vest. These past two weeks, I have tried to write a lilty, funny narrative comparing autism to that great 80’s movie that you wish existed and I sadly, could not. I have to admit to people that I have Battle Scars. I cannot say that it has been easy, that there is a light at the end of the tunnel, or that I can tell you how things get better. I wish that I could be all Hope and Change for you, sadly, I cannot. There is no cure for Autism, there is no magic drug that makes the symptoms go away, Autism is forever.
My son was diagnosed in April of 2006, seven years ago, my daughter was diagnosed in May of 2008, five years ago. There have been ups and downs, ins and outs, and there have been things that have happened that have been positive and things that have happened that have been negative. I have learned a great deal, I have lost friends, I dated, I have chosen not to date at points in time, and I sometimes feel alone because my life is a circus filled with schedules and therapist and doctor’s appointments. My life is filled with apps that tract behaviors and apps that I keep track of the medications that we have been on because if not, the insurance won’t pay for something new. I am a single parent and I do admit, I am happy that my marriage died before my son was diagnosed, because it was not and never was strong enough to survive. I have gained a whole new extended family though, but I have also seen individuals that just don’t understand how rigid autism is. The chaos that is involved is unbelievable. It is my life and I live it. I often fall back on “God gives us no more than we can bear”. It is a Herculean task to raise my children. It is a Herculean task to raise any child with a disability. Society though sees my children and assumes that they are just brats. That they have no “home training” and need to disciplined more. This is the wrong perception. These people are a part of my battle scars.
So when I think of my Battle Scars, the writing that you see below, I posted on Facebook April 12, 2011. I have Battle Scars and what I have written below may help you understand how I can take my battle scars and turn them into action and power. I was not the person that I am now then. I had no idea where God would send me, but here I am. I will say, life is life and God gives us our life because he knows that we can handle it. Autism mom’s and dad’s, He knows that we are tough as nails and He gave us our special angels to make a dent in the world and also to educate the world and provide the world with a few more tolerate people.
“When I think of Autism Awareness, it dawned on me that most people don’t understand the impact that it has on a life while raising their neuro typical children. I was sitting with a friend today in her kitchen talking about our kids and I thought of an awesome way to help you understand.
Autism is not hearing your child’s voice for a year or not at all.
Autism is special diets and doctor’s appointments weekly.
Autism is structured schedules at school, home, and in the community.
Autism is finally teaching your child at seven after trying for three years to brush his own teeth but still needing to supervise and remind him to spit and not swallow.
Autism is teaching your child after two and a half years to finally take his own bath praying that he doesn’t regress.
Autism is teaching your child to finally at seven zip his own jacket or at five to finally put her clothing on the right side.
Autism is unpredictable, yet screams for structure.
Autism is hours upon hours of therapy and thousands of dollars in assistive technology, computer programs, and technology to help your child.
Autism is watching your child retreat into a world where you are not even invited as a visitor.
Autism is wishing that by the time your child is ten he or she will know how to tie his or her shoes.
Autism is not being able to have a fluent conversation with your child.
Autism is wishing that smells, colors, and sounds did not irritate your child to the point of vomiting.
Autism is wondering when you die, if your children will be cared for or will they be able to live alone and thrive.
Autism is praying for the best outcome knowing that Autism is unpredictable.
Autism is a monster that steals your child’s voice, ability to reach goals, and the dreams that you had for your child before he or she was born.
Autism is that trip to Holland when your destination was the Virgin Islands.
Autism has no cure, but with treatment, can provide success stories.
Autism takes your spirit and your child yet puts you closer to God.”