Looking Into the Jaws of Fear; Raising a Child With Special Needs

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In a dream, I floated down a river on my back, Wil lay on my chest, and I watched our toes cut through the smooth, clear water. The easy current had me feeling calm and content. I casually turned my head and found myself staring into the gaping jaws of an alligator.

With instinctive reflex to protect Wil from its angry teeth, I grabbed hold of the alligator’s top jaw. Fully expecting the alligator’s incisors to pierce my hand, I was shocked to find its entire jaw crumple like paper in my grasp. I released the alligator and watched its deflated bulk sink fast to the bottom of the river.

Wil and I continued to float, but now I envisioned dark shadows of multiple alligators swimming beneath us. Though I now knew the alligators could be defeated, I was saddened by the realization of their existence.

_______________

Matt and I recently attended Wil’s parent-teacher conference. Wil is having a stellar year. Truly. He is in a fully supportive environment where optimum learning can take place. He strongly desires independence and through this desire is taking his first bold steps into self-advocacy.

A new skill for Wil is initiating back and forth conversation with his peers. He is participating vocally in class, raising his hand when appropriate and answering questions. Not all of his words are comprehensible, but his teacher said his classmates listen with respect just as they do when other classmates are speaking. With this leap in communication, Wil has been spending more time talking with friends. On one occasion, a few classmates prompted Wil to say things these kids thought was funny. Wil didn’t understand what he was repeating, he merely enjoyed the attention so continued to play along. Wil’s teachers saw this happening and immediately interrupted the conversation. His teachers then had talk with these kids about Wil’s abilities and how they can all learn from one another.

It is natural for kids to test the waters, to experiment, and intentionally or not, take a certain amount of advantage over those who do not have the same intellectual or physical abilities they do. Thankfully, with teachers like Wil has, these situations will always be handled quickly, and in an educational way to the benefit of all involved.

As Wil grows and matures along with his peers, he will have increasing freedoms to explore and experience new opportunities in self-advocacy. As he exercises these new freedoms over time, there will not always be teachers looking out for him as they do now. I realize more every year, while the differences in Wil’s abilities endear and draw him even closer to certain peers, this is also open ground for others to take advantage of him.

When Wil was a baby, I steered and guided everything surrounding him. I scheduled his therapies, his doctor appointments and play dates and attended all of those. When Wil was in pre-school, his teachers were ever-present and I had frequent communication with them. Even now, he has a one-on-one paraprofessional that has an eagle eye on him, even while allowing him his space. I can see, in the near future, he is going to require more space to blossom, and those protective eyes may not be as prevalent as they are now.

As Wil takes steps forward to become his own advocate, I find myself both highly thrilled and absolutely terrified.

Every morning I revel in the fact that Wil chooses his own clothes, puts them on (sometimes the pants go on backwards, but they go on!), pulls his backpack over his shoulders, and marches off to his classroom lineup outside of the school “all by myself.” On weekends, he opens the refrigerator, pulls out a hot dog, puts it on a plate, heats it in the microwave and tops it with ketchup and mustard. He helps set the dinner table, rinses off plates and puts them in the dishwasher. He asks for what he wants and tells me what he doesn’t want. He has a great sense of humor, is highly active, stubborn, smart and independent.

I see how people change around him in the simplest yet most powerful of ways. When Wil sings down the grocery store aisle, I envision a spread of invisible magic happy dust in his wake. Every straight faced, lost-in-thought person he skips by is left smiling, conversational and lighter of heart.

This pure innocence that lightens so many, is also the trait that can easily be taken advantage of. That is the blessing and the curse of Down syndrome. I cannot protect Wil from every cold heart he may encounter in this winding flow of life. They could not enter Wil’s world when it was so tightly connected with mine. Now, as he gains new independence, I feel their dark faint outlines lurking below. I have no way of knowing if they will ever surface, but the realization of their presence saddens me.

As I flow forward with my boy, I enjoy watching the path we cut in the current, with all the twists and turns. I revel in Wil’s advances, and know there will be many more to celebrate in the years to follow. Even so, I know he will still need assistance in some capacity for the entirety of his life.

Thinking of Wil out in this world on his own, I sometimes find myself staring straight in the gaping jaws of fear. On those days, the only thing I know how to do is fall on my knees and pray. I pray hard to God to please, please, please let Wil’s magic dust turn any cold hearts he encounters warm. Surround Wil with people who love him, encourage him and protect him and learn from him, and he from them. And, if You give me anything, give me the gift of staying on this ride as long as Wil does. I won’t ask for one millisecond more. I promise. I can’t bear to leave him alone. I just can’t. What if that big, nasty alligator does show up, and it’s too big for his sweet grasp? Who else will instinctively reach out and demolish that beast in the swift way his mother can?

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