Caregivers and providers
The fear and reality of losing a disabled child to their disability
This is a post that I have considered writing many times, but have thus far avoided. It is one of those dark parts of my life that I try not to visit. It is the reality that children like Quincy are fragile and that the odds are stacked against them. It is about the reality that I will probably outlive her. It is about the cold fear we face about losing her.
Just before the holidays a very young, very medically fragile disabled girl at Quincy’s school died from the complications of her disability. It is one of those things my husband and I do not discuss. Our hearts break for the family and the fear strikes home for each of us. Today I read about John Travolta’s son, Jett, dying from complications of his seizure disorder. I realize that there are so many parents out there like me who will read about this tragedy and internalize it for days. We will cry in private where no one can see us, we will not discuss it out loud, and we will share the family’s grief knowing that but for the Grace of God that could be us.
Most parents like us know this fear and face it regularly. It is what separates us from other parents. It is what causes those outside our world to judge us as “crazy”, “irrational”, or my personal favorite, “over-protective”. The judgements are fine…guilty as charged, as long as you understand that my behaviour isn’t baseless but is borne of legitimate fear. Parents raising children who are healthy will tell you the story of momentarily losing sight of their children in the playground or at the mall and that ten seconds of cold fear they felt until their child was found. That is their singular experience and for that they are blessed more than they will ever know. That is a fear that parents raising children like Quincy face all the time. It is something we live with…each of us in our own way. We find a way to function and to bury the fear to appear normal, but it is always there, popping up in nightmares or on mornings when you open the paper and read about another family losing their child.
If a family like the Travolta’s can lose their child, a family who can afford to provide every safety measure they can, then we know it is more about Fate and not about effort. Normal families like mine must sacrifice sleep, work, vacations, and a million other things too depressing to list to provide the kind of care Quincy needs. And, in the end, we know that it will be up to Fate to decide how long we get to love her, learn from her and share her with the world. I hope she beats the odds and outlives me…but I will live every single day knowing it is a gift that I am eternally thankful for. Today I whisper a prayer for the Travolta’s and all other families out there who must face their reality far sooner than any parent should.
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.
Battling constipation with the physically and developmentally disabled
Okay, occasionally I am going to write about things that I know Quincy would rather I not share with the world. I have to apologize in advance to her for this. However, some of these sensitive issues make up the biggest challenges that parents and caregivers face in their daily care of the children. Constipation is a very real and very persistent issue. It has been the topic of numerous conversations amongst my friends who also have children similar to Quincy.
Children like Quincy do very little weight bearing activity and because they do not move their bodies as much, or in the same way, as other kids their systems suffer. The cocktail of medications they take can make this even worse. For Quincy we do several things on a daily basis to combat constipation. First, we try to always feed her meals that are high in fiber. I also use Miralax daily in her water. This product seems to be easiest to manage and isn’t fast-acting. Through trial and error we have learned what dosage to use to keep her regular without having any surprises. Finally, we will often give her an evening snack of a Pediasure with fiber to keep her regular and help with her other nutritional needs.
Even with all our efforts, sometimes she just gets backed up. I have no idea why this occurs. We are religious about being consistent with our efforts. And still, sometimes it just doesn’t work. We keep daily records on Q, to make sure we keep track of her meds and other important issues, so we know when it’s been a few days. At this point there isn’t much left to do but the ever-dreaded enema. They work. It is always a last-ditch option but there are times when there is simply no other option. Impacted bowels can be incredibly painful for our children and are a lot more miserable than an enema. So, keep a box or two of Fleets in your medicine cabinet. It’s not expensive and it is effective. Fighting the battle with constipation is worthwhile…Quincy sleeps better, eats better and feels better when her system is working properly.
Understanding and appreciating the siblings of disabled children
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. One thing we hit on was the balancing act we face to make sure we do everything we can for our disabled children while still meeting all the needs of our other kids.
The siblings of disabled children are unique and special kids. They have great empathy and understanding for anyone who faces challenges. At a young age they learn to recognize seizures and environmental factors that may be unsettling for the siblings, they learn to communicate without language, they learn how to provide comfort and care. They also understand therapy, doctors, medications, hospitals and even emergency rooms. They know their siblings are different and they seem to roll with that…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 the 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 people 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 chose to do I know it will spectacular and that they will make a significant impact in this world. As parents we must make sure that 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.
Reduce the stigma of disability by avoiding the use of labels
Autistic, Cerebral Palsy, Retarded, Emotionally Disturbed, Amputee, Down’s Syndrome, Cystic Fibrosis, Medically Fragile, Seizure Disorder
When I meet someone casually, either on an airplane, at a conference, in the lobby of a waiting room, any place where you find yourself in basic chit-chat with someone you may or may not ever see again I tell them I am the mother of three children, ages 13, 10, and 8. We are a family that loves to ski and to travel. The conversation usually moves from there. I never start out by saying I am raising a developmentally disabled child and two other children. That just isn’t important. I’m just a mother who is ridiculously proud of each of her children for who they are.
We are not defined by the sum of our limitations, but instead by our character.
I write about Quincy and the challenges we face raising her to help others, to share my experiences with people going through the same things, not because I wear being Q’s mom as a badge of honor, or shame or of a martyr (depending on your point-of-view). Can you imagine how much you would hate being introduced to a new person with a tagline about all your limitations? This is my brother, Frank, the one who suffers migraines and fights the disease of alcoholism. This is my aunt, Betty, the one who has hearing loss and high-blood pressure. I don’t think so.
I have friend I have known since childhood who was diagnosed as a child with a eye disease that would eventually take most of her sight. She was fierce about not telling people about her challenges. She was a great athlete, a great student, and grew up to be a great mother, teacher and member of her community. I am quite sure if her parents had introduced her as “our daughter, the one who is blind” there is no doubt there would have been Hell to pay. She wanted to be known for what she could do, not what she struggled to overcome. She has inspired me my whole life, especially after I became a parent of child facing challenges of her own. She has handled her limitations with grace, dignity and privacy. Privacy. That’s what it is about.
If you get to know me well enough, and we develop a trusting relationship, then I will let you into my life with Q. If everyone in my community stumbled upon this blog many would be shocked to know the specifics about Quincy. They would tell you they had no idea. That’s how I like it. So, be careful about when and where you apply labels. Look first at people for who they are and not what their disability is. We all have things that limit us in life, but we all deserve the dignity of not having that be what defines us.
Adaptive skiing and therapeutic recreation
Over the Thanksgiving holiday we skied with Quincy. It was so much fun! Our local mountain got nearly 20″ of powder every night of the four-day holiday. It was skiers paradise and a perfect way to kick off the season!
My husband and I have been trained on how to use a bi-ski and that is what we use with Q. Rob has his Professional Ski Instructors of America (PSIA) Level 1 adaptive certification, so he really does know what he’s doing. The bi-ski (also called a sit-ski) is a device that has a bucket seat attached to two skis with two shorter outrigger skis on the back to keep it balanced. It is operated by a very skilled skier who holds two tether lines and by using those lines can make the ski carve turns to either the right or left.
My role is to assist loading the bi-ski onto the chair lift and then to shadow Rob and Quincy, blocking any stray snowboarder or novice skier who may wander into their path. A collision with another skier is just one of the many hazards we must avoid. Rough, tracked-out conditions can create a bumpy ride and just like with any skier if the bi-ski catches an edge it can tip. It can tip going too slow, it can tip going too fast. I am quite proud to say that we have never, ever dumped Quincy. And that is incredibly important. She places full trust in our abilities and if we fail her it will be very difficult to earn it back. When we trained on the bi-ski we started by using sandbags instead of a child…we dumped plenty of sandbags. Then, we practiced on able-bodied people…it’s always good to experience the equipment first hand so you have a clear understanding of what the ride is like, what is scary, what is fun, etc… We finally began with Q and we’ve been skiing with her on our own for nearly three seasons with a perfect safety record. It’s not to say that Rob and I haven’t suffered through plenty of bumps and bruises…but we suffer them happily for Q. There is no more perfect freedom that being completely independent on the mountain…cruising where we want when we want without anyone’s assistance.
If you ever have the opportunity to volunteer at any therapeutic recreation program, be it skiing or swimming or anything, please try it. There is no better reward than the smile on the face of a child who experiences something they have never done before.
Accessibility is all about dependability
I was reminded today how much accessibility for those who are disabled is directly linked to dependability. If you require assistance either from equipment, special transportation, or service providers, to do the things in life that most people can do on their own then you understand that dependability is the key. If you cannot depend on your equipment to work, on your transportation to operate or your service providers to do what they are paid to do then you are stuck, unable to do what you need to do. This is one reason that Rob and I are fiercely independent when it comes to Quincy. We have been burned time and time again by service providers who are not dependable. If you cannot count on help, then you must learn to do without help. As an able-bodied adult I understand of the challenges that might cause someone to be unable to do what they’ve promised. A hairdresser gets sick and cancels, cars break down, schedules get change…but I can roll with that. I can roll with it because I am able to do things for myself. But, with Q I am much more unforgiving. If you are in the business of assisting those who need assistance then you damn well better understand that you must be dependable. Do not tell me you are sorry. Do not tell me you’ll do it another time. Do not tell me it is out of your control. Do not tell me it will never happen again. Just do your job, do it every day, do it with care and attention and, most of all, do it dependably. Then you are providing true assistance and accessibility for those who need it. If your service is not dependable then all you are really doing is reminding those who need assistance that they are at your mercy and that is unkind, unfair and insulting. If you are a service provider please understand and respect this responsibility. Do your very best over the holidays to be dependable for those you serve. Holidays are the time that they need it the most and will be the most hurt if you fail them.
Feeding a child with a limited ability to chew
Quincy has an excellent swallow reflex which we’ve been told is rather unusual for a child as disabled as ours. What it means is that she does not have to be tube-fed. The use of a G-tube for feeding comes with complications and it’s nice to not include those in her already complicated life. However, Quincy doesn’t chew or use her teeth much…when she is given food she simply tastes it and if she likes it she swallows. If she doesn’t she just leaves in in her mouth, mouth open, until it falls out. Then she will clamp her mouth shut and refuse any more bites. Luckily she is not a picky eater. She appreciates flavor and variety…our only challenge is to find foods that are soft-solids that she can swallow without choking. She is able to eat almost any pasta dish, especially if it has a heavy sauce. She can eat casseroles and soft Mexican food, like enchiladas (one of her all-time favorites). She eats oatmeal for breakfast (our favorite is Kirkland organic instant) and I pack a Stouffers frozen meal, like meatloaf with gravy or mac-n-cheese, for her school lunches. We have found that finding food she will eat isn’t terribly difficult. But the issue of feeding her can be. If she is having seizure complications or medication interactions she seems to lose her appetite. It’s quite a challenge to put calories into a child who has no desire to eat. It’s times like these that, when all else fails, we can always resort to the occasional Pediasure. Pediasure is great for the calories and nutritional content but also for the added fiber. Constipation is a constant battle and any time we can add fiber to her meals to keep her regular naturally the better. Quincy drinks water…that is her preference. We must squirt little sips into her mouth from a water bottle. It’s a slow process and requires a lot of attention and patience during the course of a day to make sure she gets all the hydration she needs. Dehydration can lead to issues with her medications and also complicates the constipation issue further so it’s incredibly important to be sure she gets plenty of water every day. What is great about Quincy is that she generally loves good food with lots of flavor. She is very appreciative when I make the effort to make a big, home cooked meal. Thanksgiving is one of those times because almost everything we make, from the main dish to dessert, is something she will enjoy. It really is much more fun to cook for Q than my other children…she complains a lot less and generally eats a lot more. She is the absolute perfect big-sister role model for them!
Disability caregiver care
My intention with this blog is to be as consistent as possible with my writing. My plan has been to write at least three times a week, preferably on Mondays/Wednesdays/Fridays. However, I missed yesterday and I have such a lame excuse…it was the first day of the Nordstroms Half-Yearly Sale. Yep…I am that shallow. I have been a die-hard Nordstroms shopper since I was old enough to shop. This year, with a tough economy and a much tighter budget, I am happy to report that I didn’t spend much. But, it’s just the pure pleasure of walking around, checking out beautiful new clothes, smelling new fragrances and touching the leather of the new purses that makes me happy. I am actually a fairly economical woman, with most of my purchases coming from Target, Costco, and Wal-Mart but deep down this Alaskan chick appreciates the finer things in life. Rubysoup is about my experiences raising Quincy, but it is about me, too. Maybe if I share little pieces of me from time to time then my readers will feel like they know me…maybe can even relate to me a little better. Because, although my life is exceptionally different from most because of all the responsibility and challenges that I face with Quincy, there is a lot about my life that’s quite regular. Tomorrow I will get back to my mission of sharing my knowledge about disabilities with you…but today was my escape and we all need to escape every now and then so we can appreciate all that we have. So, splurge on a pair of shoes, buy a mocha and or sing at the top of your lungs when you are alone in your car…it will make all the diaper changes, medical bills and health issues seem just a little less easier to handle.
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Recent Posts
- The fear and reality of losing a disabled child to their disability
- Photos of an adaptive bi-ski in action in Alaska at -5!
- What does a bi-ski used by a disabled skier look like?
- Be compassionate and communciate effectively and make the most of the holidays with the developmentally disabled
- Great mittens for the developmentally and physically disabled!!
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