New Entry from Jody’s Spectrum Scene Blog:

There’s an article making the rounds entitled, “My Child Has The Kind of Autism Nobody Talks About.” It’s not an easy read. In fact, it really pushes the emotions of this spectrum mom, not because it’s wrong, but because there are some aspects of it with which I can definitely relate.

Autism isn’t an easy road. There are many challenges, many struggles, many difficulties. But it is these trying times which make the milestones, the victories all the sweeter.

I tend to not write so much about the difficult times, but rather focus on the successes, the overcoming, the persevering. I do this because it is my intention that our spectrum boy will someday be able to read through all these entries and get a glimpse of his childhood through our eyes. I don’t want him to ever feel like he was a burden; like he was a challenge; like he was someone or something to be persevered through and overcome. Autism is a part of him. It cannot be separated out from him. It does not define him, but it is very much a part of him.

I could write volumes on the frustrations, the hours upon hours of therapy and work devoted to helping him, not to mention the gallons of tears cried in frustration; but these aren’t the stories on which I want dwell. Yes, these are an important part of our journey and help us to work through the times we get a message saying something along the lines of “just wanted to alert you to some issues this morning…”

Yes, there are issues and for some they are many, frequent, daily, perhaps even hourly, but I also don’t think it’s fair to stereotype all autistic kids into a group which is identified as being nonverbal kids with behavioral issues, Yes, that is the reality for some, but not all. Not Ben. While communication is something we will continue to work on for years to come, he is very verbal, so much in fact that we spend a fair amount of time asking him to quiet down a bit. It’s a wonderful problem to have indeed!

Bottom line, these kids are kids and every single one of them is loved for exactly who they are. And this, I have to believe, is exactly how it was intended to be.

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A quick scan through social media can lead you through any number of lists: to-do lists, don’t-do lists, top 10 lists of this that and the other.
I happened upon one this evening from TheAutismSite.com blog which touts the Top 9 Signs that Your Toddler May Have Autism.

1. Lack of Smiling
2. Rare Imitation of Social Cues
3. Delay in Babbling & Cooing
4. Unresponsiveness to Name
5. Poor Eye Contact
6. Infrequently Seeking Attention
7. Lack of Gesturing
8. Repetitive Behaviors
9. Delayed Motor Development

As you can see, Ben just didn’t fit every marker on the list.

As I read through this list, I found myself shaking my head. You see, our spectrum son wouldn’t have fit into more than one of these categories his first two years of life. He was very much a “normal” kid, there were just some things that were different as compared to his older siblings, not wrong, but different. Because of my husband’s involvement in education as a career, he knew long before I did what we were looking at, but even I knew something was different. Because our son was meeting typical milestones, our doctor suggested a “wait and see” approach to answering the oddities that were quickly making our son “him”; again, nothing wrong, just different.

It finally took a long talk with a trusted cousin whose son had recently been diagnosed with Asperger’s Syndrome before I could wrap my mind around the possibility that what I considered as a “maybe” could very well be a “reality” and even at that point, I had to call our pediatrician to ask for a referral to Easter Seals so that we could begin the diagnostics process not because we wanted him to be autistic, but because we knew we had to find answers for our son.

It would be another 18 months before we would have the diagnosis and even begin to know who and what to ask in order to better help our son, but I shudder to think if we had given up based on a list such as this simply because, well, he didn’t fit the mold of that list. My point here is that as parents, we know our children, and quite often, we know when we need to move on in seeking help for our children. I think back and realize how easily we could have written off the oddities that just made Ben his own little person, but we knew there was more to it than a different personality. Because we followed our gut instincts, we were able to get him the help he needed so that he could enjoy things like an afternoon at the park or the beach and time spent with peers. These still are not easy things for him to tackle, but because of the efforts of countless people along the way, they are at least a possibility. And the smiles that come with the requests to go back to the beach are simply priceless.

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“Autism is hard – kicked in the gut hard.” This thought hit me Sunday as I’d been through dozens of sets of clues with our spectrum son in just a few short hours that seemed to stretch into days. Autism is hard.

It’s tears and fears; worry and frustration; heartbreakimg and heart-sinking. And that’s just for me, I can’t even begin to imagine the struggles he faces and works through every single day.

It’s also full of sighs and smiles; love and hugs and kisses and sometimes even snuggles, but never for very long; it’s belly laughter so big you need to catch your breath and dry your eyes; it’s pride in him, and joy bigger than life itself as he smiles and laughs and runs at us with all his might.

A few moments of quiet allowed for reflection and took me back to those many, many clues and all the emotions that came in those hours with our boy. Further reflection took me to his four siblings and I realized that autism isn’t so hard. It’s not our life, it’s only part of our story. Parenting – parenting is hard.

Seasoned parents warn young moms to “Enjoy these moments!” because they will be gone all too soon. “Carpe Diem!” “Seize the Day!” “Don’t wish these moments away!”

Confession time: I LOVE being wife to Chris and mom to Rob, Tom, Jac, Ben & Ali. LOVE LOVE LOVE LOVE LOVE it! There’s no question this is at least part of what God made me to do. I truly love it. But, I do not love every single moment. I do not love the frustration and the heartbreak, the tears and fears, the struggles and the growing pains, but I am thankful in all of them – thankful that I am able to live these days with these people.

Parenting is hard, but I sure wouldn’t trade it.

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