an autism journey

Yesterday was World Autism Awareness Day. I wholeheartedly support it.  As a matter of fact, I support the whole month of autism awareness. I join the rest of the autism community in lighting it up blue, and  I take the opportunity to share my experiences and tell others about autism. I want to increase awareness in hopes of promoting a more accepting society.  Everyday is autism awareness for me. I am very open about my son’s diagnosis and am more than willing to answer questions that others might have. What I do though in promoting awareness, is for my son. I want answers on how to stop the epidemic that is upon us. I want funding for research to find a cure. I want insurance companies to do the right thing and pay for needed treatments. I want schools to provide services and make accommodations. I want society to accept my son and others like him as equals. I want understanding.  I want the way others treat special needs individuals to change. I want a better world for my son to live in. I don’t do it for myself, my husband, or anyone else. I do it for him.

So, what irks me is that on World Autism Awareness Day, I saw far too many articles about how awful autism is for the parents. I read numerous facebook posts from parents who are angry over vaccinations and doctors and environment and politicians… and God (somehow He always gets blamed). I read far too many things from individuals complaining how THEIR lives will never be normal because of their child’s diagnosis. That just makes me sad. Very sad. I am not saying that vaccinations and doctors and politicians aren’t in the wrong…. But the hatred and anger itself just seems like a waste of time and  energy.

The reality of the situation is that raising a child with autism IS hard. It is VERY hard. There are challenges, there are worries, fears, frustrations. It is hard financially. It is hard emotionally. It is hard spiritually and physically. It is stressful and exhausting. There is indeed far too little sleep, energy and money to go around. However, it is also extremely rewarding. It is full of love and laughter and LIVING.

My son has changed my life forever…. For the better. HE (my son) has changed my life, not autism. People give far too much credit to that word. Numerous reports want to blame autism for marriages breaking up (I am pretty sure if you look at statistics of neurotypical… aka “normal” families, you will find that there are plenty of other reasons people give for throwing away their marriages). Autism is not to blame for people’s lives falling apart and dreams being lost (we can make a mess of things all on our own).

I had plans before autism entered my life. I planned on having more children. I planned on eventually going back to school, having a career, spending my empty nest years traveling with my husband (who by that point would lavish me with expensive gifts), I would read books and SLEEP….oh yeah, sleep, a lot. I know full well, that most of those things will never happen. Autism is not to blame for it (except for the sleep part)….. life changes. Our desires, our dreams, our hopes…. They change with it. I have a child severely affected by autism. As his mother, I am affected by autism, as is his father and his older sister. AFFECTED by, but not destroyed by. If my life somehow becomes “messed up” there is no one (or a diagnosis) to blame but ME.

I will probably not have any more children, but I already have two gifts more than I ever deserved in the son and daughter I do have. I can be completely happy with that. I will probably never go back to school, but I am learning new things daily. I may never have a career (or even another job outside the home), but I function as a teacher, a speech therapist, an occupational therapist, a nurse, a caregiver, a psychologist, an advocate….. a mom, a friend, a playmate. What more do I need to dabble in? As for the empty nest…. That remains to be seen, but I know the possibility of what may become reality. Empty nesters just complain about being lonely and bored anyway and long for the days when their children were home. I will for the rest of my life be needed, wanted, and loved. I will have a purpose as long as I am alive….. that doesn’t seem so bad to me. Traveling with my husband? Ahhh….  Who says there isn’t excitement in my backyard? Life maybe different than I envisioned, but that doesn’t mean it won’t be GREAT.

You see, yes, there are days when autism stinks. I wish my son didn’t have autism. I wish I could make it all better. Of course, I want the best for him. There are days when I complain and vent, just like everyone else, but there are more days when I stand in awe of the incredible gift I have been given. My son is AMAZING. He is smart and funny and sweet and awesome. He sees people for who they are. I sometimes think he understands the world far better than the rest of us. How could I be angry when my son has so much to give?

For me, I will go on. I will continue to advocate… to fight for my son’s rights and promote awareness, I will make a fuss when he needs something or isn’t treated the way he should be, but I will not complain about having to raise a child with autism. Instead, I will thank God that my son shines in the midst of it and I will be forever grateful that God gave me the honor of being his mother.

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Comments on: "Autism Awareness, Not Autism Anger" (1)

  1. Well said Elizabeth, well said.

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