As my family prepares for another weekend, I have to face the inevitable decision about “What are we going to do?”  This is a never-ending question from my children.  My two children who are not disabled always want to do the stuff normal families do…go to a movie, go shopping, or go out to a meal.  I am always torn by this because I owe my children a regular childhood and yet we are far from a regular family.  We are reminded of this constantly whenever we are out in public.

What is it about my daughter in a wheelchair that gives other people permission to stare and remind me that we are different?  Don’t people understand how rude that is?  The minute someone draws attention to the fact that my family looks different they have  ruined my happy, family moment.  Does my beautiful daughter in a wheelchair really make us so strange?

The responsibility falls to parents to make the time to teach their children that people are different and that it is rude to stare.   We are fat, skinny, different colors, disabled, missing limbs, maybe burned or scarred.  If your life has not been touched by tragedy you still must teach your children to be respectful of those who look different.  To children I will simply say “Ask questions if you’d like, but it’s rude to stare”.  To their parents, I am less polite.  It is an innate reaction to protect Quincy and I have no problem flashing my best evil-eye and telling them “It is rude to stare at my daughter…please stop!!”

Sometimes I just don’t have the strength to face the stress and hassle and will choose to remain in the comfort of my home.  It’s just irritating that my family should be deprived of a simple, carefree afternoon out, maybe at Costco, the bookstore, or the Zoo, because we have to deal with the rudeness of others.    But, we soldier on and ignore it because our kids are just as deserving as anyone to enjoy the simple pleasures in life.  Simply put, staring hurts and my life has enough hurt in it already…I do not need strangers adding to it.

I have recently reconnected with some old friends from high school and college thanks to the modern miracle of the Internet. It’s always a thrill to get reacquainted with people who I shared so many important experiences. But, as we start to share about our lives I am always struck by the same realization…my life is so incredibly different and complicated and it can take the shine off the excitement.

I have a feeling this is something many families like mine experience. Our lives are so unique and our challenges so great that we begin to rebuild our friendships and networks with families facing similar circumstances. It’s just easier and practical. I mean, it’s inevitable that one of the first things to come up with old acquaintances is the desire to get together…to meet each other’s children, families, spouses. This is always a tough spot. At what point do you inquire about the accessibility of their homes? Do you have a ramp? Can a wheelchair access your backyard? Ugh…I just hate that. It makes me feel like an alien.

So, it is my fault that I have allowed many relationships to fade away. It’s just too much to deal with…explaining Q and her needs, explaining it to their children, trying to haul a wheelchair into their beautiful homes, trying not to muck up their carpets, finding a space where she can be changed….on it goes. It’s too much stress and I start to become distant and non-committal. Eventually we just become those people who simply exchange the annual Christmas card.

On the other hand, I have some of the most incredible friends…people who are passionate, caring, and loyal. Some don’t have children with special needs, but they accept my family and my life with such grace. They ask the right questions, offer the right help…if they invite us into their homes they make sure that everything is in place for Quincy, not as an afterthought but because they know it eliminates a great deal of stress for me. For them it is not a hassle or an inconvenience, it’s just what they do for me. And what they do not know, they ask. My friends are brave enough to ask me a lot of questions. They understand and respect that I am private, perhaps to a fault, but have taught me that sharing can be a good thing. I have decided that having a handful of friends like these makes up for a lifetime of possible friendships that I have allowed to fade.

I will continue to venture slowly and cautiously into relationships with new people. I have learned that you never really know what challenges others face. I have met old friends who are struggling to raise children with autism, others who have joined the cause for safer vaccines, others who have lost children. So, I do not judge…I just proceed slowly. And, if the feeling of being an alien begins to fade then I know it’s the beginning of something I can build on.

I have a great deal of respect for anyone who chooses to focus their career on working with the disabled…it’s not something people do for the high salary or the glamour. For the most part, folks who work with the developmentally disabled have big hearts and genuine desire to make a difference in the lives of others. However, all the good intentions in the world will not replace proper training.

Proper training isn’t just about the use of adaptive equipment, medical equipment, or administering meds, but must also include disability awareness and sensitivity. I have noticed that often this seems to be lacking. Caregivers, be it therapists, teachers, personal care attendants or even therapeutic recreation instructors must create trust with those that they work with…they must learn how to create and protect that trust. Children who cannot communicate or use their bodies to protect or control themselves must feel completely safe in the hands of those they rely on. If you betray that trust you will have broken a bond that may never be repaired.

I have seen Quincy shut down on people quicker than you can flip a light switch. As soon as she is put in a situation that scares her or hurts her she is simply finished. More than once over the years we have had to replace therapists because we know once Quincy has lost trust in someone she simply will not work for them.

Quincy skis during the winter with the use of adaptive ski equipment. This winter an adaptive ski instructor took a young client down a particularly difficult run at our ski resort and dumped him. The instructor’s general attitude was that of a typical, healthy young man…no pain, no gain. It’s not fun if you don’t push the envelope. I wonder if that instructor has ever experienced being buckled into a bi-ski, arms strapped down so he couldn’t use them, put entirely at the mercy of some hot-shot instructor who thought it would be cool to jump into a black diamond run and possibly dump him. I doubt it.

The developmentally disabled process experiences differently than the rest of us. Their trust is built differently, their fear is felt differently, and their ability to recover from something frightening is different. You must understand that sometimes trust is all they have and it should not be taken lightly…it must be protected and respected.

I was talking to a friend of mine today who is raising two beautiful girls, one who is a young teenager and another who is a “tweener” with autism. We began one of our many conversations about our lives and the challenges we face. Our conversation focused on the balancing act we walk to make sure we do everything we can for our disabled children while meeting the needs of our other kids.

The siblings of disabled children are unique, special kids. They have great empathy and understanding for anyone who faces challenges. At a young age they learn to recognize medical conditions like seizures and environmental factors that may be unsettling for their siblings. They learn to communicate without language, and they learn how to provide comfort and care with the stroke of their hand. They also understand therapy, doctors, medications, hospitals and even emergency rooms. They know their siblings are different and they seem to roll with that. They weather whatever comments they may hear with brave faces and hearts. But, they are still kids and in order to do right by them we understand that our focus cannot simply be about Quincy. We must make time to celebrate their lives, their activities, their achievements. We must make them understand that they are special and that even if our life is somewhat dictated by their sister’s needs, they will never take a backseat. We help them to foster lives that are separate from hers, so that they understand the pure joy of “normal” relationships and activities. And, we learn to forgive them when they have situations where they would rather not have Quincy take part. They need that…they deserve that.

They will grow up to be amazing adults who will treat people and situations differently because of their sister. They will have great tolerance and patience. Maybe they will turn to occupations that will help other families or people who face similar disabilities, like therapists or doctors. But, whatever they choose to do I know it will be spectacular and that they will make a significant impact in this world. As parents we must make sure they understand our lives are different from others, but it isn’t a bad thing…it’s just a different thing. If we can learn to celebrate our differences and learn from them, like our children are doing, our world will be a better place.

The great joy of being a parent is celebrating your children’s success. Every developmental milestone reached by our babies is carefully recorded in scrapbooks. We save report cards, trophies, ribbons, medals and all the wonderful trinkets our children bring to us for their brilliance in academics, sports, or civic clubs. We share their work with neighbors, grandparents, even subject our friends to our bragging through annual Christmas letters. It is a joy to watch our children succeed.

This is no less of a joy for families raising children who suffer with disabilities. The only difference is that we measure their successes differently, perhaps with baby steps. And our children’s accomplishments just don’t seem all that interesting to the rest of the world. Those who love to hear about a soccer team that won the local championship simply don’t understand my pride in watching Quincy learn a simple gesture that indicates she needs a drink. And how can Quincy mastering a feather switch hold up to the accomplishment of a child who won the local spelling bee? I would argue it holds up better.

By watching Quincy and my other children I have learned that she works 1000 times harder than any other child her age to accomplish the smallest task. She is more patient, more determined, braver and tougher than any 14 year-old who can ride a dirt bike or play soccer. And nothing bothers me more than when someone watches something that Quincy can do, like ski or float in a pool or even smile at a joke, and say “Isn’t that cute?”. She is not a baby and it’s not cute. It’s commendable and wonderful and exciting…it is not simple and cute.

Please understand that the pride of parents who raise disabled children is no less than the pride of the parents of normally functioning kids. We want to share their accomplishments and have others rejoice in their success. But we usually don’t…we sit quietly and listen to others talk about their kids and we say little. Not because we don’t have anything to share, but because we know that unless you walk in our world you probably cannot appreciate what Quincy has overcome. Most people look at her for what she cannot do…we see her for all that she has become. And, in my mind she deserves a gold medal, an induction to a Hall of Fame, a trip to the White House and a full-ride scholarship to an Ivy League school already.