caregiver
Caregiver strength and happiness
As I move through this life, raising Quincy and my other children, being a responsible member of my community, advocating for safer vaccines in Washington, and all the other things that come my way, I am occasionally asked if I rely on a strong spirituality for my strength. I guess some people hold to the idea that those of us who have been faced with tragedy and misfortune and recover with our happiness intact must rely on spiritual strength to help them along the way. The answer is that I do not have a strong spiritual base…I have a faith that is all my own and not dictated by any specific Church or group. My strength comes from my foundation and my stubbornness to not let crappy things get me down.
I believe in three basic principles; Karma, Fate and Shit Happens. I find comfort in the idea that Karma will straighten out life…bless those who are good and take appropriate action on those who have done wrong. I believe that Fate plays a big role in the cards we are dealt. Fate sets up the circumstances that will test the strength of our character, the strength of our bonds and the strength of our commitments. I don’t think Fate is necessarily good or bad, but is more of a random pop quiz in our lives. Finally, I am a walking billboard for Shit Happens.
I don’t really see the shit happening as the key to personal development as much as how we handle the shit. We can be bitter, angry, resentful, let it destroy our relationships and our happiness or we can get over it, move on, stick together, find something to smile about. That being said, I am completely driven by the shit that has happened to me. It drives me to make sure it doesn’t happen to any other family, it drives me to hold policymakers accountable for bad policy and to improve our systems, it drives me to channel my anger into positive change.
I want to teach my children to be strong and happy despite the crap that they will encounter in life. I want to teach them to stand up for injustice and to give of themselves to their communities. I want them to know they are blessed to have a happy family and to strive for that when they become adults. Life is too short to get bogged down by the bad things that happen to us.
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)
