disability sensitivity
Can we build relationships outside the world of disability?
I have recently been given the opportunity to reconnect with some of my high school and college friends 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 just easier and practical. I mean, it’s inevitable that one of the first things that comes 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, loyal. Some don’t have children with special needs, but they accept my family and my life with such grace. They ask the right question, 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 meet 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.
Be compassionate and communciate effectively and make the most of the holidays with the developmentally disabled
The holidays are a time for families to come together and in all families this brings a certain amount of stress. For families with children with special needs this can be compounded by sharing our children with friends and family that may have spent little time with them. For many parents this alone is cause for major stress and tension. The holidays are a wonderful, magic time for all our children. If you are a family member that is given the opportunity to spend time with our children, try to set aside your discomfort and make this a time to learn more about our amazing children and the lives that we lead. If you are uncomfortable you must understand that we are.
Our children act, look and behave differently and most of us have them in a world that understands this. Holiday gatherings will bring together people who are uncomfortable around our children or who simply have not had the opportunity to get to know them. I hope to share some thoughts that might ease the tension for everyone.Our children love the holidays as much as any other child. They delight in the sights and sounds, they love having family around, they want presents as much as the next child. But, when our children are excited and happy they will be loud, they will holler at inappropriate times, they will throw their limbs around. They will do this at church, in restaurants, at fancy gatherings…if this embarrasses you do not show it. Do not be embarrassed by how our children express delight. Be proud of them and hold your head high when their happy sounds disrupt.
Communicate to children in a manner that is age-appropriate. Just because a child does not communicate in the way most of us do does not mean that they do not hear or understand you. Speak to a toddler like a toddler, a teenager like a teenage, an adult like an adult. Do not speak loudly or slowly unless they are deaf or ask you to slow down. Allow plenty of time for response…our children usually need extra time to process your comments and respond.
Some children have behavioral issues that are a result of their diagnosis, such as autism. You may see our children meltdown and you will see us handle it the way we know is best. Do not judge our children’s behavior or our response. Our children are not misbehaving in the way you might think…they respond to situations in a way that is inappropriate because they do not process the situation the way we do. They are not spoiled or being bratty…they are doing the best they can and we will care for them they best way we know how.
If you only take one thing from this post let it be this…if you are lucky enough to experience any of the situations I have listed above then understand that this is a very good day for the family. It means their child isn’t in the hospital, isn’t laid out by a seizure, or isn’t too medically fragile to be with others. It means we haven’tasked you to change a diaper, administer meds, handle a feeding or give up sleep to help them through the night. It means our children are alive. That they are healthy and happy and thriving. And that is a blessing that families like mine will never, ever take for granted!
HAPPY HOLIDAYS FROM RUBYSOUP TO ALL THE EXTRAORDINARY PARENTS RAISING WONDERFUL CHILDREN WITH SPECIAL NEEDS!!
To be effective, caregivers must build and protect a relationship of trust
I have a great deal of respect for anyone who chooses to focus their career on working with the disabled…it is rarely something anyone does 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 are working with…they must create trust and they must protect that trust. Children who cannot communicate or use their bodies to protect themselves 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 all too well that once Quincy doesn’t trust someone she simply will not work for them.
Last week 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 strapped himself into a bi-ski, strapped down his arms so he couldn’t use them, put himself 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 trust is everything and it should not be taken lightly…it must be protected and respected.
Rob and I have never, ever had an accident with Quincy in the bi-ski and I truly doubt we ever will. We are too well-trained, too cautious, too overly-protective and, most importantly, we absolutely understand that if we scare her we may never get her back on the mountain again and that would be heartbreaking for all of us.
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National Vaccine Information Center (NVIC)
