Family Support The Importance of Respite
“If I'm in a Crisis, Where are my Casseroles?”
By Margaret Miller, SMS Parent
Okay, now I know what one is (casserole),… let’s describe all the different categories of casseroles. There are “funeral” casseroles, “new baby” casseroles, “welcome to the neighborhood” casseroles, “post- surgery or hospitalization” casseroles, “get well” casseroles, “new home” casseroles and lastly “holiday green bean casseroles.” Why do people give casseroles? Casseroles are comfort food; that which makes us feel warm and happy inside. People respond to the kindness of the one who makes the casserole because it cheers us up, makes us feel loved and thought about, and eases a daily burden that perhaps we are not up to; cooking dinner. Think about the last time someone rang your doorbell and presented you with a casserole. That ranks up there with the Publisher’s Clearing House Prize Patrol. WOW!
I just know for myself, that the last time I received that extraordinary gift of a pre-made dinner, I had just gone through many hours of labor and had to produce a baby to receive the casserole! That will not be happening again!
What’s the point of all this silly talk about casseroles? When a family goes through any of the above crises or joys, friends and family are mobilized to help and offer support, sometimes with the gift of ready-made dinners…(I.e., the casserole). Well, on behalf of all the Smith-Magenis families, “We are in a crisis and we need those casseroles!!” Let me say it louder, in case you didn’t hear me the first time, “WE ARE IN A CRISIS AND WE NEED THOSE CASSEROLES!!”
Smith-Magenis Syndrome presents some of the most difficult challenges that a family could face. The rarity of the syndrome isolates families. Connecting with other Smith-Magenis families in person is uncommon and infrequent due to our geographic boundaries. We are still few and far between, connecting mainly through email or phone. Our families would swim the ocean wide if they could, to meet with another family, who understands their frustration and extraordinary challenges. We may be living in a well-populated city or small town, but feel alone and remote.
The severe sleep issue that is prominent in Smith-Magenis Syndrome, results from the flipped circadian rhythm that occurs in these individuals, and is unlike any other species on the planet. This unique and exhausting feature wreaks havoc on the mental and physical health of the SMS child and their parents and siblings. Night can become day and soon everyone’s “clock” is cockeyed and compromised. This is a life-long challenge. Sleep deprivation is a terrible consequence for the entire family. Who then takes care of who? One never recoups lost sleep, as there is no sleep bank, and it’s (sleep) a requirement for basic life! Sleep deprivation takes a tremendous toll on the child with Smith-Magenis Syndrome and their caretakers, namely, their parents. Parents who still need to go to work each day, take care of children, (sleep-deprived cranky children), drive cars, or operate machinery, coach baseball teams, grocery shop, balance bills and deal with everyday “normal” life. Despite the few hours of sleep parents may get, regular trials and tribulations await each morning and the day offers no sympathetic reprieve.
The other most challenging feature of Smith-Magenis Syndrome is the behavior. All of our SMS children, from an early age, can exhibit severe behavior such as tantrums, and self-injurious behavior. These behaviors are characterized by head banging, skin picking, head slapping, hand biting, screaming and throwing themselves on the floor. These “rages” can happen at home, school or in public places. The child is at risk for hurting his or herself and the parent is also at risk for injury. These behaviors can be cyclical and happen daily for weeks at a time. Bedrooms sometimes need to be stripped down to just a basic bed, for safety reasons. Parents become masters at repairing drywall and learning to fix many household items. If it’s a bad day, parents cannot leave the home for fear that their child may have a rage in public or moreover, how will they even get that child in the car? Parents are called regularly from schools to pick up their child and take them home because of these behaviors. A mere trip to the grocery store can be a nightmare amid the stares and comments of ignorant passersby. These genetically driven behaviors can be further exacerbated by lack of sleep, onset of puberty and hormonal changes, seizures, side affects from medications, (“behavior meds”), and change in routine. These behaviors make the “terrible twos” or the “terrible teens” look like a walk in the park, literally! As the child grows, certain behaviors may diminish only to be replaced by new behaviors. Smith-Magenis families must constantly “opt-out” of normal family activities and perfect the art of man-to man defense: One parent to one child for outings and activities. “Mom will watch your baseball game this week and Dad will come next week.” Siblings pay the price for this strategy, but soon recognize its need and accept the reality. How in the world do single parents ever do this alone? It is beyond my comprehension. What is not “normal” is quickly accepted as “normal” in our houses and we regulate our life so that we can go on everyday. We have to fit our situations into the standards of daily life. Family get-togethers can be the most difficult. There is great expectation on the behalf of the extended families, sometimes, and we are met with the challenge of convincing those closest to us of the worry and extreme stresses that we face each day. SMS parents are not always able to open up and feel accepted by those they are closest to. Sometimes it’s easier for family members to look the other way. Caring for someone with SMS is not for wimps. It takes lots of love, determination, patience, creativity, humor, nerve and pure Herculean strength!
We now have scientific studies that are identifying what chronic stress does to the body. Our telomeres, the end caps to our cells, are shrinking at a faster rate due to chronic stress. As a result, our cells are dying faster and speeding up the aging process. Lack of sleep can cause weight gain. We now also have a subset of SMS parents that have developed autoimmune diseases and stress-related illnesses due to the chronic stress. Can that be proven definitively? No. But it’s a very good guess. So, now that you have a pretty clear snapshot of what we face each day, what does any of this have to do with the “casserole?”
The casserole is a metaphor for what we (the families) need most. We need support and help and RESPITE on an ongoing basis. We need to know that we can count on a commitment from family and friends to regularly lend a hand. Now, there are many ways to lend that hand, and I will get to that later. We parents are not very good at asking for help from others. We, first hand, know of the effort it may take to take care of our SMS child and we hesitate to share that burden with someone else. But perhaps a friend or family member is just waiting to be asked? So I’m asking. These families need you. They need you today, next week and next month. The challenges are constant and sometimes critical. They reach out to other SMS families for emotional support, but the hands-on support needs to come from elsewhere. We need to have an active support base for our SMS families that initiates from extended family and friends.
So, what do we need and how can you help? I’ve come up with a variety of options and creative ways that you can help to support our families. These ideas are not all of my own thinking, but rather a collective reference gathered from many of our SMS families who have shared their thoughts and wishes.
RESPITE:
We need respite! Respite care allows the entire family to catch their breath, relax, catch up on household chores, maybe go grocery shopping, attend a sibling’s ballgame, or just sit without interruption and read a book. If you can take the SMS child for a couple of hours or a couple of days, on a somewhat regular basis, this is single-handedly, the best support you can give this family. Their SMS child also needs the break! Parents can get very cranky and impatient and all the children in the family could use a change of scenery. Most often, the SMS child does extremely well with new and fresh caretakers. They need a variety of people in their lives to care for them and to spend time with them. Take them out of the house and spend time with our SMS kids. They are so much fun and have so much love to give in return. It’s a win-win situation. They will remember that time that you have spent with them forever! Don’t be afraid to watch our kids. Get to know them and see what they like to do. (They are often perfect “angels” with folks other than their parents.) Could you commit to this time once a month, three times a year, once a year? Many of us must pay for respite care. The cost is very expensive, usually between $15.00-$25.00 per hour. This becomes another expense that is not covered by insurance or agencies. Also, finding the best match for a respite person can be difficult. It may take several attempts with different people to find just the right person with just the right demeanor. But, we find a way to pay for respite, because it is a critical need. And, you won’t find our parents jetting off to Aruba, while you are watching their child. They are content with maybe just reorganizing their closets without chaos or cleaning the house. We have great appreciation for just quiet time in our own homes.
RESPITE for the siblings:
Our SMS siblings are the very best brothers and sisters on the planet! These kids are awesome in spite of all the sacrifices and turmoil that they have dealt with in their lives. They understand, at any early age, how far a sister or brother’s love can reach. Sometimes, when Mom and Dad are just too tired or can’t console their SMS child, in walks the Superstar Sib! They are the great equalizers who bring calm to the chaos and try so hard to make up for all the difficulties that our families endure. They are champion students and dedicated friends and have enough empathy to probably heal the entire world from all its ills. They are courageous and fierce protectors of their SMS siblings and their parents. I don’t have enough descriptive words to perfectly describe these siblings. But, all of this comes at a cost. These sibs grow up very fast and forfeit otherwise family normalcy and learn quickly to adjust, readjust and then go to plan “B.” Much is put on their shoulders and they carry the load with superior wisdom and strength, well beyond their years. These kids are tremendous and deserve a break every now and then. How about taking your “favorite” sib out for dinner and a movie? Let them have a carefree day, where it’s “all about them” and they are the center of attention. Let them know they have a trusted confidant to talk with and share private thoughts and worries. Make them feel important and valued by spending time with them. (Dinner, movies, a ball game, bowling, whatever). Give them a change of pace and a little vacation. Your time will be well spent while spending time with any of these sibs. Many of our “grown-up” sibs have chosen careers in special education or working with the disabled in many different fields. Their life experiences put them on a path to serve this community and they bring with them a mind and heart full of compassion and deep understanding. Spend some time getting to know these sibs.
Casseroles:
Dinnertime for most families can be very stressful. Parents rushing home from work, driving kids to practice, school events, checking homework, starting dinner! We all know the drill. Now factor in an SMS child whose body clock is now telling them it’s time to go to bed. Perhaps they have been up since 3:00am, and had to go to school, while trying to sit still and learn and not fall asleep. They have now processed an entire day of sensory overkill and by dinnertime they do not have the capability to keep it together! A “sleep-attack” is on its way, (when a child falls asleep eating their food at the table), and who would dare to wake them! Keep in mind that the parents have also been up since 3:00am. This is a very unpredictable and “thin-ice” time of day. One wrong move and a meltdown or SMS rage will absolutely happen and it is bedlam! So, ”What’s for dinner?”
How about a dinner prepared by a good friend or family member? How about that casserole? How about sending a gift card or gift certificate for take-out food or dinner at a local restaurant, if that’s possible? How about someone committing to help out with a meal once a month or every other month? This small gesture would mean so very much to any SMS family. When you are trying to keep it all together and behave like a “normal” family, it is really hard work that is often times futile. Sometimes it’s just going to be a grueling day and you can only hope for bedtime and what little rest may lay ahead.
Many of our parents have claimed that their front doors are possessed! The minute our SMS kids come off that school bus and step inside, it’s mayhem. Our kids have put forth so much effort at school, keeping impulsive and “angry” behaviors at bay, trying to learn and please and cope, that there needs to be a release from the “pressure cooker” somewhere. Home is a safe haven where that happens. It is a necessary release, and expected, but not easy to manage for the family, and not always safe for all persons involved. Managing a Smith-Magenis meltdown is not for the faint of heart or physically weak. It requires emotional, mental and physical stamina. It can last a few minutes or a few hours. It can put a stop to all activities in the household. It can define the day for everyone.
Then, normalcy is required to take care of the household issues for the day. Clothes still need to be washed, kids still need to be fed and lives still need to be joyful, despite all the disarray. A single act of kindness on the part of friends or family can help to alleviate some stress and further impart a few moments of normalcy and joy. We need your support and encouragement and it needs to be ongoing. Connect with our families and see what joy they will give back to you!
This article is not meant to just present a compassionate view of our families, but to present a very clear and accurate picture of what they deal with each day. Perhaps it will also give you a creative idea of how you can support this family. Whatever you can do to provide this active and ongoing help will be met with great appreciation and with open arms! I challenge you to receive that appreciation!
So, keep those casseroles coming!! (I prefer chicken to tuna!)