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7 Things I've Learned Along the Way Parenting Kids With Disabilities

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My first daughter was born with the amyoplasia form of arthrogryposis multiplex congenita. She has extremely low muscle tone on all four of her limbs, no bicep movement in her arms, her elbows don’t bend all the way and her knees don’t straighten. She is also nonverbal and currently participates in ABA therapy throughout the week.

My youngest daughter was born with amniotic banding syndrome, for her, it means she only has a few fully developed fingers and she had to have her leg amputated. She’s addressed her physical challenges through surgery and has lots of fun sprinting around with her “robot leg,” which is what we call her prosthesis.

I take my job as a father of a child with disabilities very seriously, but it is also important to note that I am happy. I have two beautiful daughters and an amazing wife.

Here are some things I have learned along the way that I think can help anyone who knows a family like mine:

1. Our lives are not sad.

My kids are hilarious. We all have a lot of fun together. We play lots of games, and music. It can be tempting at times to wallow in some medical frustrations, but what good would it do? We prefer to enjoy each other. They only get one childhood, and it’s our job to make sure they enjoy it.

2. We stare.

Staring has been given a bad rap. It has led to children being pulled away from my daughters in a public place, being chastised as they’re dragged away: “Don’t stare. It’s rude!” Well, so is dragging your child away in front of my kids and treating my children like they are monsters. We also stare. Let’s say we’re in Children’s Hospital, and we see some other kid with braces like our oldest daughter. Suddenly, we’re curious if they have arthrogryposis, too. We check their medical gear (I’ve been know to write down brands). Sometimes, we’ll say something like, “My daughter had a helmet just like that.” No matter what, we always remember to smile. Nobody wants their child treated like Frankenstein’s monster. Every child deserves a smile, not a quick turn-away so they don’t know you looked at them. It’s amazing how a simple smile can change a person’s complete perception about a stare.

3. You don’t automatically get along with all parents of kids with disabilities.

After our first daughter was born, my wife immediately tried to seek out a community of people going through the same things as us. She found it and embraced it immediately in the AMCSI support group. I moved a little slower, but soon found myself going out to functions with similar parents. At first, I felt like we were all in this huge team going through things together, but slowly started to realize that, at the end of the day, people are who they are. Having a kid with disabilities does not mean “sainthood,” and I have met some people who prove that point very well. Everyone has their own beliefs and philosophies. We are each on our own journey and that’s fine. Rick Santorum is a father of a child with a disability. I have nothing in common with him politically, spiritually or philosophically.

4. We have a cause now.

I just donated a few hundred dollars the other day to a family who would like to adopt a child with arthrogryposis. I didn’t even know that word existed a few years ago. Now, I’ve picked up arthrogryposis charities as my own. I am suddenly interested in stem cell research like never before. I’ve edited videos for programs servicing the disability community, participated in fundraisers for Children’s Hospital Los Angeles (an amazing place to support, by the way), I’ve even used my design abilities to help create convention logos for AMCSI’s yearly gathering for families like ours. I’ve become less selfish.

5. There are some advantages.

Thanks to numerous foundations and programs out there, my daughters will be able to have certain advantages growing up. My number one goal for my youngest is that she not pay a dime for college. A whole new world of scholarships is now available to her that most kids won’t have access to. She will be able to thank Paul Newman and his tasty salad dressing for free summer camp. Hippotherapy is a highly recommended form of therapy for my daughter. Do you know what that is? Horseback riding. They get to ride horses for therapy.

6. We really know insurance.

I truly think we’ve become experts in dealing with insurance folks and it hasn’t been all that bad. I’ve already helped out a few friends navigate their way through to get some bills paid or figure out who to talk to at the right time. It sounds simple, but a big part of it is to simply be nice, even if you want to head butt someone. The way I look at is their job sucks and they have to deal with very unhappy people all day. I don’t always get things done as fast as I would lik, but I’ve been able to be persistent and still successful.

7. Our marriage is strong.

I think blame and resentment can lead to the destruction of families. We never have to dwell on those issues.

Our lives are just like yours. We have our ups. We have our downs. When something like this happens in your life, you find out what you are really made of. We learned just how much we love each other and I learned just how cool it is to be a dad.

Finally, our children are part of case studies that will advance medical science. They’ve been filmed and photographed for others to learn how to properly treat joint contractures, and prosthesis adaptations. Their presence is going to help future kids get the treatment they need.

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Originally published: January 18, 2018
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