A Parent’s Perspective: Why My Son Doesn’t Need Fixing

More than a year ago I “met” today’s guest writer — Jennifer Fecowycz. She emailed me after finding my blog and shared her connection to Arthrogryposis . Read on for more of her story. This is still part of the dialogue on disabilities and cultural assumptions.

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1. Briefly share your story.

My name is Jen and I’m mom to Oscar, who is 2 years old and has AMC impacting all 4 of his limbs.

2. What is the most common misconception about disabilities that you have faced?

That Oscar needs to be “fixed.” I always get questions like:

  • When will he be all better?
  • What will they do to fix his hands/feet/elbows/etc.?
  • So he’s walking now, so he’s better and you don’t have to go to therapy anymore, right?

It is extremely frustrating to hear someone talking about my sweet little boy as something that is “broken” and needs to be “fixed.” People, in general, seem to think anything “wrong” with an individual can easily be made “better” by modern medicine. Oscar will forever require therapy, assistive devices, hard work, and stubbornness (on his part) to be able to live an independent life. He will never be “fixed” and will always live with his AMC and the daily challenges it brings. But that doesn’t mean that he is forever broken.

3. How did you respond to the situation, either on the spot or later as you processed what happened?

When I was initially confronted with this type of question, I honestly didn’t even skip a beat. I was still pregnant with Oscar. In some ways, I was the one asking the doctors how to “fix” my soon-to-be-born son. So why would others inquiring about my health and his health be any different?

Once Oscar was born, I was able to see him start doing his activities of daily life in his own way. I spent more and more time with his doctors and therapists. And I realized how wrong I was, and others are, in thinking that every health problem can be fixed.

After becoming aware of my own initial misconceptions, I learned how to approach the questions being asked. I would tailor my reply to the audience.

If it was a good friend asking, I’d go into detail about the therapies, surgeries, etc. naming all options.

If a stranger was asking, then I’d keep my response short and sweet, indicating we did therapy and saw a doctor who specialized in his condition.

4. Name one lesson you’ve learned from your son.

Oscar has taught me A LOT…a lot about life, happiness, faith, the list goes on and on. Most importantly though, Oscar has made me aware of how easy it is to go through life completely oblivious to other people’s challenges because of any physical limitations they have. Unless you are physically limited, or someone very close to you is physically limited, you probably have never thought about what happens when the elevator is out of service at your subway stop, how having only 2 steps to walk into a building really is a big deal, how some people have to work hard every day to stretch and move their bodies to eat, get dressed, or go to the bathroom. Those tasks are simply mindless for you.

5. Name one lesson you’ve learned from interactions with others.

I used to have the same misconception that all illnesses, conditions, medical issues can easily be fixed. This may be why it is so frustrating to me when others have this misconception. When people ask, “how can he be fixed?“, they really do mean well and are coming from a good place. Perhaps there just hasn’t been a deep enough thought behind what that question implies.

6. And finally, leave us with your top tip for fighting any misconception surrounding physical disabilities.

So my challenge to everyone would be — ASK questions. But think about what you are implying by the questions you ask and how you ask them. I’ll end with one of my favorite quotes that sums up why people don’t need to be “fixed.”

I am beautifully broken, perfectly imperfect, beautiful in my flaws. Altogether I am a beautiful disaster.” – Anonymous

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oscar_jenf1Jennifer is a 36-year-old stay-at-home mom of 4 from Westfield, NJ. She loves photography, sewing, exploring new places, and playing with her children. She has learned so much because of her youngest’s AMC and is thankful for her many resources and support systems locally and via social media.