B is for Blue

2 Apr

autismToday is World Autism Awareness Day!

The day itself is kind of self-explanatory. After all, with an ever growing group of people found to be on the spectrum somewhere, it seems more than ever we need not just awareness, but education. And a whole lot of patience and understanding.

My experience with autism seemed to begin back several years (almost 18) when I knew that there was something about my toddler son that, well, didn’t look like what I’d seen other toddlers saying and doing. Back then I had nothing to compare by except what I saw with other parents at church or in stores. I hadn’t been around babies growing up, and none of my friends had children yet.

But his intense desire to line up toys, the tantrums that led to him crashing his head into the wall, the inability it seemed for him to hear his name…these things worried me.

At the time my family doctor brushed off my concerns. “Be thankful he plays so well by himself”  he said, seeming to be oblivious to the fact that my son ONLY played by himself…

As the years passed and children were added to the household with a certain degree of regularity my life became wrapped up in not only caring for the children, but understanding them. The thing is, I saw a lot of myself in them. I also saw a lot that didn’t look quite…typical.

I almost typed ‘normal’ but I’ve come to dislike the term. What is normal exactly? What right does anyone have to say who is normal and who isn’t?

But typical…yes…this was a problem.

My son was 12 when nearly a week at Mayo Clinic in Rochester, MN gave us the answer of autism. High functioning, Asperger’s Syndrome they said. So classic they asked if we could come back for another week for them to make training films for them to teach doctors how to spot and diagnose Asperger’s. We agreed and so our son was immortalized.

This was only the beginning of our journey with autism.

That year they also diagnosed our second son. PPD-NOS – Pervasive Developmental Disorder, Not Otherwise Specified. Meaning he too was living on the autism spectrum…somewhere. This is a frustrating diagnosis, but the best they had to offer.

Then it was my turn to spend time with doctors and psychologists and we found an explanation for my own social ineptitude growing up, the sensory issues, the strange habits…yes, I too fit on that spectrum, every bit as Aspie as my oldest son. Just…functioning better with age and practice, and a whole lot of therapy.

That was several years ago. Since we’ve had it confirmed that two of the daughters are most likely autistic to some degree as well. I have the doctor’s order to have the youngest evaluated but I’m unsure if I’m ready to take that step with either of them. The second youngest…well…today the psychologist told me she is every bit as aspie as me. I knew it inside, but I hadn’t had someone else say it to me before. Someone… official.

You’d think by now I’d be used to it, but every day still remains a challenge. Not all of the kids look autistic, sometimes they do. I homeschool so we have the freedom to be more ‘ourselves’ and maybe worry a lot less about learning all the ‘normal’ behaviors that society demands.

It’s not easy to talk about these things but today is a day for awareness so I thought, “why not?” I think that’s the point of the day, isn’t it? To show others that autism is closer than they think. They they likely DO know someone who is autistic. Or someone who is struggling to help someone who is autistic. Or maybe just loves someone who is autistic (which deserves mention because that’s perhaps one of the hardest things in the world to do.)

Right now we’re about to take off for Build a Bear where some of my kids can’t wait to get their hands on the Autism Speaks bear. They asked if they could tell the people at the store that they’re autistic. They wanted to know if it’s ok if they’re PROUD of being autistic.

I told my kids it’s more than ok to be proud of who you are. And to be proud of the the things that make you who you are. There’s nothing wrong with being autistic.

Who knows, maybe some of you will see us out and about today, wearing bright blue – the official color of Autism Awareness Day. Here’s a secret though – if you observe us in passing, for just a moment, at the mall, you’ll probably think that we’re just like you.

Guess what….In all the things that matter we are.

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3 Responses to “B is for Blue”

  1. mcrohio April 3, 2013 at 8:03 am #

    Thanks for commemorating Autism Day! That’s important. I hope you won’t forget to make a C post today! “C” you later.

  2. Deanna April 3, 2013 at 11:47 am #

    Thanks for sharing! Our AU teacher team is awesome with our students.

  3. maria April 24, 2013 at 1:03 pm #

    I am so glad I stopped by your blog on my A to Z new blog visits for today. Thanks for raising awareness of autism. I had the privilege of working with an severely autistic boy for several years as part of his developmental therapy and I have known numerous people on the spectrum over the years who you would never know and others who you did know but they didn’t know themselves. It appears though you say you are on the spectrum it doesn’t infringe on your ability to communicate effectively because you obviously express yourself very well. Is there really such a thing as normal? God bless, Maria at Delight Directed Living

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