I read the original article on The Huffington Post on special needs parents and was moved to tell my family's story. My child 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 and her knees don't straighten. She has many weekly therapy appointments and must be stretched throughout the day by us in the hopes that she will one day move enough to become self-sufficient. The stretching is the most painful part of our day because it physically hurts her, and no loving parent wants to hurt his child on purpose.
I take my job as a father of a special needs child very seriously, but it is also important to note that I am happy. I have a beautiful daughter and an amazing wife. Here are some things that I have learned along the way that I think can help anyone that knows a special needs family.
Our lives are not sad
My kid is hilarious. She's adorable. Look at this photo:
We all have a lot of fun together. We play lots of games, and music, etc.. It can be tempting at times to wallow in some medical frustrations, but what good would it do? We prefer to enjoy each other. She only gets one childhood, and it's our job to make sure she enjoys it. A lazy Saturday night for us can be to take our girl out for a stroll around the mall or Target (wide aisles are our friend) in her new gate trainer for fun and exercise. She's getting good at it.
Staring has been given a bad rap. It has led to children being pulled away from my daughter 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 kid and treating my child like a monster. We also stare. Let's say we're in Children's Hospital, and we see some other kid with braces like our 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 he doesn't know you looked at him. It's amazing how a simple smile can change a person's complete perception about a stare. It's also very humbling to walk the halls of Children's Hospital and while meeting the wonderful children there, realizing just how lucky you are
You don't automatically get along with special needs parents
After our 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 special needs kid does not guarantee 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 special needs father. I can't think of anyone else on this planet that I have less in common with politically, spiritually or philosophically (which is why i happen to be writing this article of The Huffington Post ZING!!!!)
We have a cause now
I just donated a few hundred dollars the other day to a family that 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 special needs programs, 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.
There are SOME advantages
Thanks to numerous foundations and programs out there, my daughter will be able to have certain advantages growing up. My number one goal for her 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. She gets to ride horses for therapy. My wife would have killed for that as a little girl. She'll probably be semi-famous at her school as the girl with the crutches or wheelchair. Who wants to have the child nobody knows? She will not have to wait in the long lines at amusement parks.
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.
Our marriage is strong
For our own egos, we were lucky in the fact that there is no definite medical cause of Arthrogryposis, and thus there is no one to blame. I think blame and resentment leads to the destruction of many special needs 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 child is part of case studies that will advance medical science. She's been filmed and photographed for others to learn how to properly treat joint contractures. Her presence is going to help future kids get the treatment they need. Maybe one day they'll figure out the cause of Arthrogryposis because of her participation in these studies. What does your kid do? (That's my high horse for the day).
Follow Rob Ashe on Twitter: www.twitter.com/sirashe