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Expectations

Autism frustrates me on a daily basis. It is the source of many struggles for one of my favorite little guys, and in turn, for our family as a whole. I don’t like it, but I accept it because it is a part of my son. It’s so much a part of him, I can’t imagine life without autism.

As much as I don’t like it and as much as I get frustrated with it and because of it, I also have to admit that it has brought about some pretty amazing moments in our lives. These moments are courtesy of a pretty amazing little guy. Ben was born the fourth child into an already busy family. He slid right into our lives and we pretty much kept right on rolling with the demands of the day. I often marveled at how he just rolled with the flow of life with three older siblings and two busy parents, but I suppose he was an infant, what choice did he have but to be scooped up and carried along?

As he grew, we noticed differences between him and what we recalled as normal with our older three kids, but it’s said so often that every child is different and we know that to be true, so even “different” didn’t set off too many alarms in those early years. However, there came a time that we could no longer deny that what we were seeing as little quirks were actually indicators of something much bigger. Months of questioning and waiting lead to a visit to Easter Seals of Central Illinois resulting an autism diagnosis with a side of expressive/receptive language disorder and a motor delay. And my mommy heart broke.

Suddenly, we were looking at a much different future for our son than we had once dreamed. There was much uncertainty, more questions than answers and an overwhelming sense of “I don’t even know where to begin.” Truth is, heart-wrenching as it was, diagnosis day is exactly what we needed.  While the diagnosis brought with it many questions, it also began to answer so many more that we just hadn’t been able to put into words yet.

Our expectations changed that day.  I should say my expectations changed.  I errantly didn’t expect as much from our son as compared to his peers.  My dreams began to fade. How wrong I was. I think momentarily giving up is a natural progression of processing an autism diagnosis and all that it entails, but regaining, or perhaps reformulating your dreams for your future and your child’s future has to be part of the process.

While I still wonder what our future as a family and more specifically our son’s future holds, I can now look back and see how far he has come. Yes, there is still a long road ahead, but now I can see that there are many great adventures which lie ahead on that road. It will not always be an easy journey, but there are many memories to be made, many laughs and many milestones which will be met and celebrated with gusto. I can see now that he is just like every other child in that he will meet whatever expectations we set for him.

As parents, we have an amazing opportunity to help shape the future simply by how we live and the expectations we impress upon our children. I had the most interesting conversation with our oldest daughter, now 12, which really put this truth into perspective for me. We’d made a quick trip to town in search of some necessities for the coming week and were on our way home, traveling along a stretch of road her dad and I have run a few years now for St. Jude. Meandering these stretches I’ve travelled on foot always gets me thinking back to the days I’ve run there and thinking ahead both to my next opportunity to do the same and the years ahead when our kids are old enough to join us if they choose. This day was no exception. Just being on that stretch of road transports me to another time. I can feel the heaviness of my chest as I breathe; I can feel my heartrate rise to that of a steady jog; and I can feel the oh-so-good ache in my legs as they long to stretch and go yet again.

I asked our daughter, who has now completed two cross-country seasons and is prepping for her first track season, if she had ambitions of joining us for the St. Jude Run when she becomes of age. Without hesitation, she answered, “Well, yea! Of course I will!!” and looked at me with wonder as to why I would even have to ask. I couldn’t help but to smile.

I wondered out loud why it was that she runs. Is it the rush of the breeze, the run itself or the remarkable feeling of a completed run?

With half a laugh, she exclaimed, “Are you kidding me!? I HATE the way I feel after a run!!!”

I was speechless.  Those who know me know it takes a lot for that to happen, but there we were, motoring down the roadway and I had no words for I couldn’t imagine why anyone would put themselves through the workout of a two mile cross country run if they didn’t love something about it. I finally mustered the words, “So why do you do it? Why did you ever start and then stick with it if you don’t love it?”

“Well,” with a look of ‘this is really simple, Mom’, “because you and dad run.”

“So, if we smoked dope, you’d smoke dope, too?”

“Ummm….well…” stifling laughter, “Yea, I guess I probably would if you’d allow it.”

And there you have it. Our kids will do what we do. They will work to become like us, good or bad, and live to meet our expectations relative to how they fit within their lives. We believe in our kids. We believe they can run cross-country and so they do. We believe they can achieve great things, and they do. The same is true for our spectrum son just as for our neuro-typical kids. If I believe he can overcome adversity and achieve whatever dream settles in his heart, I am certain he will. It may not be easy, but he will work toward his goals and I have no reason to believe he will not meet them. He has already done that so many times over, I’m ashamed to admit I still wonder and I still question the future.

Ben with his big sister, who has never expected anything less than greatness from him, and has always accepted him for exactly who he is.  Both are a great reminder of who I want to be. Photo credit: Hendel Photography

Ben with his big sister, who has never expected anything less than greatness from him, and has always accepted him for exactly who he is. Both are a great reminder of who I want to be. Photo credit: Hendel Photography

Cut not the wings of your dreams,

for they are the heartbeat and the freedom of your soul.

~ Flavia ~

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3 Comments

  1. Suzanne Chatterton says:

    Your blog is always well written, thought provoking, and inspirational.

  2. Suzanne Chatterton says:

    Absolutely beautiful post. I love when I am given the opportunity to view autism from the true experts, the ones living it. Thank you.

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