Saturday, April 13, 2013

Autism Awareness Month 4/13 - To Autism, With Love - Blogger

Today's post comes from a blogger, To Autism, With Love, and Aiden's Autism Army. That's right, this busy mom runs two sites.

Before I get to her post about What Autism Means to Me, I want to talk about charity. One thing that sets us apart from the rest of the world as Americans is our sense of charity. So much so, that we as Americans actually have tax laws governing our non-profits. Internationally very few countries have such laws. You can say it's because "Americans have money to give" or "People abuse these tax laws", but the I chose a different  approach. America is a land of difference. A land of opportunity. A land of the fortunate, and, sometimes, the not so fortunate. We have had to create our sense of national unity, our sense of brotherhood.

By giving to each other.

To Autism, With Love is an amazing charity created by this author that sends gifts to children and families affected by autism. It brings a little joy to the lives of the children and, more importantly, a "thank you" and "we're here for you" from the autism community.

This woman does all the work. It's amazingly time-consuming, yet she trudges on... for free.

I've included a short video link at the end of this blog about To Autism, With Love. Find My Eyes is a huge supporter and we donate regularly... and will continue to do so. Check them out. Donate, Apply, or support today... it's what we do.

So, Ladies and Gentlemen, "What Autism Means to Me" by To Autism, With Love...

Autism to me means ___________.

I have a love/hate relationship with Autism.

My son Aiden, 6, was diagnosed with Sensory Integration Disorder & Autism Spectrum Disorder in 2008. Four and a half years have elapsed since the day I sat, feeling awfully small despite being in a very tiny and crowded room, as a team of six specialists told me my son was autistic.

Since then, our  journey has been a roller coaster ride filled with an unpredictable sequence of setbacks, progress, and then more setbacks.

But, what does autism mean to me?

That’s a tough, if not impossible, question to answer... my reply would be entirely dependent on the day that you asked. My opinion changes from one day t the next. It seems that autism is a condition that escapes definition. It will not be confined within borders. It will not be predictable.

We have many days that end with my heart soaring

Days where I marvel at Aiden’s intelligence and his picture perfect memory. Days when my eyes are surprised at the intricacy of his artwork. For a hand that has only had 6 years on Earth, it is steady and true to the object he seeks to duplicate.  My heart melts when he strokes my hair or rubs my hand lovingly. I love how he wrinkles his nose when he laughs. I love that he brings laughter to my life with his silliness and comedic timing. He see’s the world for what it is... every grain of truth is evident to him and this comes to him effortlessly.

We have days that end with tears and heartache.

Days where Aiden is tormented by unknown stressors. Days where he hits, kicks, spits, curses, and alternates from hysterical crying to pure rage. We have days where Aiden says things that no child should ever say. Things that rip my heart in two. I hate the parts of Autism that cause Aiden to suffer. There are days when I pray for a cure. Days when I despise Autism and what it has done to my child.

When my son was diagnosed , I grieved the loss of the life I had envisioned for him.  My heart ached at the thought of his future unraveling.

Then he began to progress. Rapidly and significantly. I was overjoyed and convinced myself that he was going to beat Autism.

Then he regressed and the grieving process began all over again. I began to live life in a cycle of intense hope followed by extreme letdown. That cycle, continues, to this day.

If we were to switch this up a bit and ask what I have gained from Autism, well then, that question would be easy for me to answer. I have gained so much, but most of all, I am a better person because of Autism. As I said in an October 2012 blog post, The  5 Best Things About Being an Autism Mom:

I've always had a big heart and had compassion for others, but after the Autism diagnosis, I've grown in ways that I never thought possible. I see the world from a new perspective and am much more open minded as a person. I now can empathize with individuals who have any kind of disability, which ultimately molded me into generous person who enjoys giving to those who are less fortunate than myself.

Aiden has helped me to see that speaking is not the only way to interact  with people. In fact there are many other forms of communication that can be much more powerful! He has opened my eyes to details in the world around us. Details that I would have overlooked before. Details that make this world a more beautiful place to live in.

Autism has made me realize that life is not about the tomorrows, but is really about the todays. Today's successes. Today's accomplishments. Today's victories. Tomorrow may be a continuation of success or it may be full of failures and regression. As an Autism Mom(or Dad!), you need to be prepared for ANYTHING, because the Autism Train can be one wild ride! We should focus on our child's strengths and celebrate our child's achievements religiously, no matter how big or small. Things change from day to day when Autism is involved, and that's exactly how we have to live our life. Day by day. You can plan your future finances, your future career goals, but you can not plan the future for a child with Autism. I do my best to enjoy the beautiful moments of today and hope for more tomorrow, but I go with the flow and take life as it comes.

Autism has helped me to find patience. Patience that was buried so deep down inside of me that I didn't think it existed. Autism has helped me to become the person I always wanted to be. Sure, there are times when I am envious of parents who have their typical kids and their typical lives, but if I ever was given an opportunity to switch places, I would have to politely decline. The Autism life can be crazy, but it's now what I call home.

Ed. Note - Please take a moment to watch this video about the genesis of To Autism, With Love.


  1. Quite an inspirational story, i have to say my story is pretty similar with yours. Being a parent of a autistic child is not an easy task. Though from inside I am crumbling and desperately wanted to yell them at their ignorance, and tell them how dare they pass their foolish judgement on my children. He is not retarded he is just different from others. I never want to or have time to participate in a debate because my duty towards my child never allows me to running for such conversations. But i appreciate you story and bravery towards your child, you people are fighters.