Holland – A Great life. An Interview on expectations and inclusion

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Photo of a windmill in Holland

I had the pleasure of interviewing Jennifer, who shared her story of her son Hunter. I hope her experience and that of Hunter reminds us what happens when a family unit is collectively determined for the goal of full self determination and full inclusion.

This is her story….

 

  Everything changed for me when he was 17 months. My son, Hunter, was diagnosed with Cerebral Palsy. I was told he would never walk, talk, or function to a meaningful degree. In fact, I remember what the doctor said to me as if it were yesterday. “He will only be able to use his left hand to stabilize a piece of meat.” Those words weighed heavy on me, as if forecasting his life in that brief moment. I was determined to see him beyond those limitations. Comparatively, Hunter has a milder form of it, but I certainly wanted to be prepared to help him the best I was able to. I searched the internet, looking for anything to help me understand what I was going through, Having a son with a disability didn’t change how I loved him, but it took me a while to feel balance again.

The was a poem I found, “Welcome to Holland” by Emily Perl Kingsley. I found it really comforting, because it helped me re-frame my own expectations, and gave me a sense of peace. That life is what you make it. I found comfort in those words, that I had control over how I viewed my life and Hunter.

My husband traveled for business a lot. I could feel the difference in support when he was away. Life became all about supporting Hunter. I was exhausted – learning to take care of him and Brandon, my youngest child while going to school and working became too much. I had considered quitting college at one point. I must have uttered “I can’t do this” at least once a day.

When Hunter was old enough for school, I dove head first into the world of Special Education – I had too. There was so much to understand, and so much to advocate for. Hunter had an IEP until first grade – they felt that he could do everything else the other children could do, even though he only did it with one side of his body. We stopped all therapy at that point, and it wasn’t until this year that I pushed the doctors to reconsider occupational and physical therapy, in addition to having his Botox treatments which allowed him greater range of motion and more use of his extremities

Hunter was always a Determined child. One time a few years later, I was with Hunter at a fair and there was a Bull Riding machine. Hunter asked to go on the ride. I was so scared. I saw Hunter in his Braces, and cringed at the thought of him being hurt. I was afraid – life had been hard enough for him at that point. I remember the ride attendant saying that he would be fine. I thought a lot of things during that moment – but the word “fine” wasn’t one of them. I eventually let Hunter go on the ride.

The amazing thing was – Hunter was fine. And he had fun. It was such a simple moment to an outsider, letting your son go on a ride. But I think that was such a lesson in trust. Learning to trust Hunter, life, and most importantly, myself. That everything would be okay. Hunter also climbed a rock wall using just his chin and right hand!

As a mother, I was watching him enter a period in his life I was dreading. The Middle school years, when kids When notice differences, and start forming cliques. I remember this one incident that was a bittersweet moment- one that looking back was a really transforming experience. It was at Hunter’s 7th grade dance. Some of the other kids were making fun of him at the event., and a girl pushed him. Another girl stood up for him in his defense. It was then Hunter came out of his shell.

Although that was an extreme incident, Hunter had his core group of friends. He loved being the class clown. I think that is one of his gifts – he can find humor in anything. “You know, out of my four children, despite the extra support he needed at times, he gave me the least trouble.”

Almost 2 years ago, in August of 2014, Hunter had his first Gran Mal seizure. It changed everything, He had made so much progress. Hunter’s biggest fear was that he would never be able to drive. Would he ever be independent?

I am so proud of Hunter, and I am so proud of his disability. I don’t let that define him, but I don’t minimize what he goes through either. I credit my success with immersing myself with other who have lived it. I highly encourage anyone who needs support to seek out community resources. Parents and caretakers should be aware that self care is so important, because no one can do it alone.

Right now. Hunter is focusing on enjoying high school, and preparing for his future, like every other kid. Hunter has dreams of becoming an electrician. It is wonderful to embrace life fully, including the silly mistakes teenagers make. Because I am so happy to see Hunter fully participating in life, which is more than any parent can ask for.

As of this school year, Hunter had a Gran Mal seizure after a long period. We currently have to push back our plans for his driver’s license. This is a disappointing setback, because Hunter is so driven for independence and wants to experience an inclusive life. We are currently hoping to come back to transportation, and will continue to support him in every way possible.

 

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