The End of the World

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After Toby was diagnosed with autism, it took a few weeks before we were ready to let the rest of the world know. We told our close family, Toby’s teachers and speech therapist, but a day had to come when the rest of the world would know.

Eventually that day came, and we were met with an outpouring of sympathy and support from most of our friends and acquaintances.

There were also, unfortunately, many people who questioned his diagnosis or made clear they knew “something was different.” I talked with people who were shocked and people who were completely and utterly unsurprised.

In my bitter state of mind I was angry that these people seemed to suddenly become developmental pediatricians or autism experts. Despite their good intentions, I was especially sensitive at the time and didn’t necessarily appreciate their words the way I should have.

There is one instance in that delicate and uncertain time that sticks out in my mind.

There was a friend I had. We weren’t very close friends, but our kids played together sometimes, so I felt the need to tell her.What she said both surprised and hurt me.

“Well. It’s not the end of the world.”

What?!  My emotions went haywire, a common occurence those days.

Yes it is. It is the end of the world.  That’s exactly what it is. My son will struggle with his differences for the rest of his life. This is, most definitely, the end of the world.

She probably doesn’t even remember saying it to me. After some time, I’ve come to realize she meant well by what she said. She was just trying to give me hope, though at the time all I could hear was her minimizing my anguish.

My heart was already vulnerable and bruised from the reality of Toby’s diagnosis.  Her words (and many other well-intentioned words) probably only hurt because I was already in pain.

I never did say anything to her that would suggest I was upset by her words. It wasn’t worth hurting her by telling her how much pain I felt because of what she said to me.

Still. She was wrong…but she was right, too.

At that moment, my world was over. The world where I thought my son was like everyone else and would go through his life with no more difficulty than the average person. I now lived in a world where his future was terrifyingly uncertain.

Almost three years later, I’ve been blessed with some perspective. Toby is doing so well. He’s learning, growing and achieving so much. He’s exceeding expectations left and right. I’m learning that Toby’s potential for greatness never was, and never will be, limited by his disability.

In the end, my friend was right. It wasn’t the end of the world. It just took time, and grace for me to see it.

Now, I’m grateful for her insight, and even more grateful that she was right all along. I wish I could take back the unkind feelings I had, now that I know the world hasn’t ended.

In fact, it’s just beginning.

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Special

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Lately, I’ve been feeling a deep-seated need to focus on the positive. There is so much sadness and difficulty that comes with having a child with autism. The heartbreak in the extra measure of challenge that your child faces that other children do not. The sorrow you feel sit heavily on your heart as you watch your child struggle to interact with other kids. The knot in your stomach when you hear another child say words that are unknowingly unkind.

Yet buried beneath this heaviness, is a special brand of joy.

There is a unique and indefinable quality that special needs kids have. Something that makes them such a pleasure to be around, to watch them as they learn and grow. Seeing a child with extra challenges beat the odds and learn a vital skill gives a joy and satisfaction that cannot be duplicated.

Our son Toby was blessed with a unique personality that draws people to him. He is likely the most enthusiastic little boy you will ever meet.

He gets so excited about the little things, like taking the dog for a walk, or pancakes for breakfast. It’s contagious too; most people that meet him can’t help but smile. Even if they don’t understand what he’s saying, they still pick up on his inner exhilaration.

Give my boy a Star Wars toy, and he will be over the moon with the kind of excitement that we only see in lottery winners and adrenaline junkies.

The distinct kind of happiness that comes from a child with autism or other special needs does not, however, diminish the enjoyment of children who are neurotypical. I have one child from each of these worlds in my home and I find that they complement each other wonderfully. They love, teach, and help each other.

Despite the hard things about having a child with autism, there is still much to be enjoyed. We are parents of special needs children– and they are truly, genuinely special.