(Note: The Nebraska Respite Network approached me after Christmas to ask me if I'd be interested in helping them promote Respite Care, through my experience with it. This is what was printed in the area newspapers throughout the Panhandle of Nebraska. A little slice of our life for you.)
Respite Care, Defined
Sarah Strawn; Bridgeport, Nebraska
When my son turned four years old, I wrote him a letter. It was a short letter, direct and to the point, with varying degrees of emotional detail thrown in for my own therapeutic benefit. I was, essentially, calling on him to help me understand who he was and how we were going to get through the next 14 or so years together with fewer tears and more hugs. I never read it to him, of course. It was way too complicated with rambling sentences and little point. It was all I could do to tuck it in his baby book and move on to the next task at hand. If I died before he was grown, I wanted him to know how much I really did love him and want to do right by him.
The three years leading up to his birthday was a time of trial in our house. Me, the preacher’s wife and stay at home mom, far from my extended family and hometown 1200 miles away. My only break from the norm was my time as a CPR instructor and volunteer EMT/Rescue Squad Captain in my new home in Western Nebraska, in which my kids went to almost all the meetings and trainings with me. I was working on getting my EMS instructor license, with the hope of classroom teaching well within my reach. I was mom also to two girls; a brand new shiny Kindergartener and a cuddly, breast feeding infant. With a prickly special needs child at home, all three needed my undivided attention and all seemed to get very little of it.
By the time this 4th birthday came around, I was exhausted. From the first moments that I’d held my son in my arms, I knew something was wrong. He cried this high pitched scream all the time and was inconsolable to any comfort offered. He spit up everything he ate. He was hospitalized at four weeks old, but nothing came of it. He grew and got bigger, but didn’t hit any of those momentous mile stones we wait for our children to get. He didn’t want to be held much of the time and then he wanted to be held so tight I thought I’d break him. He wouldn’t hold my hand and didn’t seem to love me in the least. We took him to the doctor, where he screeched in her office for 90 minutes solid, shaking with fear. Once he was finally walking on his own, he’d wake up in the night and tottle to the living room, stand at the wall, stare at it and cry. I’d come close to pick him up and he’d hold out his arms to push me away, screaming, and then continue to cry. It was a helpless feeling and one that a mother bears all her own, because moms are supposed to be everything; fix every hurt, heal every wound and calm every fear. But this mom couldn’t.
The doctor had written “Autism Spectrum Disorder – Aspergers Syndrome and Sensory Process Disorder” on his visit that day and suggested we contact the school for therapy and support. I hesitated, thinking it wasn’t that bad, but at some point, picked up the phone anyway. I was connected with one person who led to another and another and pretty soon, Lars was in the Early Development Network and somebody was coming to meet him and see what they could do for us. Not just for him, but all of us.
It was somewhere in that referral process that the word “respite” came across the lips of his social worker. Respite! Of course! I worked with a little boy through the respite program in Central Nebraska when I first moved away from home. I was childless then, and it seemed like ages ago, but I remember what a blessing it was for me to work with that little boy, taking him to the park and playing cards with him. He loved to vacuum and have stories read to him. And I remembered how much his mother needed a couple hours a week to herself to do the grocery shopping, take a walk, or sit home and read a book without needing to be watching over her own little boy.
It made perfect sense to me then, why hadn’t I thought of it for myself?
Because, my son needed me, I thought, and no one else would do. If I couldn’t make him happy, how could somebody else do it? I was strong and would get through it. Besides, he was giggling every once and a while now.
But as strong as I was, and the fact that he was indeed making some progress, I was falling apart at the seams and my faith was faltering to the point of no return.
Does this sound at all familiar? Do you know somebody else that fits this category? Do you know anyone who could use your services? Would you like to meet someone who needs a bit of rest or somebody who could use your companionship while their loved one takes a break?
Then Respite is for you. Respite is a short break for the family caregiver and can be very beneficial to their health. Respite is for all the moms and dads out there with special needs children, the husbands and wives taking care of their disabled spouses, the daughters & sons and nieces & nephews who are taking care of their elderly parent or family member. They are doing a great job, but need a short, temporary relief from the daily care routine to renew, refresh and re-energize. This can be in home care, out of home care, fun community events or a variety of all of these.
It wasn’t very long before someone in our congregation was taking Lars out for a few hours a week. They’d drive around the lake and look at the trees, they’d make pumpkin bars in her kitchen or read books and play tractors. They’d get dirty in the sandbox together and come home laughing and waiting for the next week to come. In the meantime, I was taking a moment to breathe deeply, rock the baby, water my garden or bake cookies. It was so good for all of us so that when he came home, I could focus on the extra care that he needed.
Many family members take great pride in providing care to their loved ones so that they can remain at home, but the emotional, physical and financial toll can be overwhelming. The joy of caring for someone can get lost in the poor health and well-being of the primary caregiver. If you are that caregiver or if you’d like to be that respite provider, help is just a phone call away.
Sherri Blome is at The Western Community Health Resource Office –Nebraska Respite Network at 300 Shelton Street in Chadron, Nebraska or call her at 308-432-8190 to get started. Or visit their website at https://nrrs.ne.gov/respitesearch to read more about it. An application can be downloaded from the site or sent to you by mail. Any documentation in the form of an IFSP, IEP, doctor’s note or diagnosis signed by a physician should be attached to all applications.
My little boy is now 8 years old; an aspiring 2nd grader who adores his teacher, has made his very first friend in life and can build anything with Legos. We have struggled along the way of course, dealing with tantrums and transitions, social ineptness, two years of coming home from school in wet pants every day, with shirts bitten and chewed through the sleeves and neck line, many tears and panic attacks. But with the help of others, including respite providers, we’ve made it this far and will keep on growing together with their continued support. Their slogan, “We care for those who care for others” is simple but true. They really do care. And there really are people who want to help you, too. With those short breaks, I was able to focus on some of the things I love as well. I’m a 3rd year girl scout leader to my girls now, have taken a weekly volunteer position at the local food pantry, help out as a classroom mom and am the current EMS Administrator in my town, teaching others to become EMTs along the way. It’s a win-win situation all around.
I ended the letter to my son by saying, “To the little boy who can hear a train, plane or automobile 45 seconds before anybody else can. To the boy who has a memory that would rival brilliance. To the little boy who takes my bible every Sunday in church and flips the pages just to hear the 'swoosh' sound it makes, but will cover his ears to the 'hiss' of an oxygen tank in the distance pews. To the boy who has now become so self-aware, it makes me wonder if he's not just a little bit smarter off and better grounded than all of us combined. To that little blue lifeless body that didn't have much hope about him four years ago, Happy Birth Anniversary. You're going to have to work a little bit harder in life than some, but you'll be Ok. I love you very much, Mommy.”
