The King’s Daughters’ School (KDS) has an Early Learning Program (ELP) for pre-K students 4 to 6 years of age with developmental disabilities. Spina Bifida is one of the disabilities some of the students have.
(IN CASE YOU ARE WONDERING…)
Spina bifida ("split spine") is a developmental congenital disorder caused by the incomplete closing of the embryonic neural tube. Some vertebrae overlying the spinal cord are not fully formed and remain unfused and open. If the opening is large enough, this allows a portion of the spinal cord to protrude through the opening in the bones. There may or may not be a fluid-filled sac surrounding the spinal cord.
Myelomeningocele is the most significant form and it is this that leads to disability in most affected individuals. Spina bifida can be surgically closed after birth, but this does not restore normal function to the affected part of the spinal cord. The protruded portion of the spinal cord and the nerves which originate at that level of the cord are damaged or not properly developed. As a result, there is usually some degree of paralysis and loss of sensation below the level of the spinal cord defect. Thus, the higher the level of the defect, the more severe the associated nerve dysfunction and resultant paralysis. People may have ambulatory problems, loss of sensation, deformities of the hips, knees or feet and loss of muscle tone. Depending on the location of the lesion, intense pain may occur originating in the lower back, and continuing down the leg to the back of the knee.
To recap: we served 4-year-olds who had part of their spines open who had limited to no mobility or use of their legs who could experienced pain if they did try to use their legs. It makes for a challenging childhood.
Every morning those cute 4 and 5-year-olds would march in the building. Some had Down’s Syndrome. Some had cerebral palsy. Some had some unspecified developmental delay. And a few had Spina Biffida. The students who had Spina Bifida were in wheelchairs, however, some of them could learn to use a walker and even eventually walk with leg braces.
There were two students I distinctly remember. One boy (I’m going to call him Patrick) was just as beautiful as he could be. He had blonde, almost white hair, a bright smile and a streak of orneriness in his pale blue eyes. He was always so happy and talkative…until the day they decided to make him use his walker from the front door of the school to his classroom.
Patrick was in so much pain, was so frustrated, and so used to being pushed around in his little wheel chair that he cried the entire time he used that walker. At first it took him a full ½ hour to get to his classroom. And that cry was heartbreaking. It sounded as If he was being tortured. The teacher was unmoved by his pleas for help. She would quietly walk about 20 feet in front of him and slightly encourage him, “You have to keep walking. You have to get up. No I’m not carrying you. No you can’t have your wheel chair.” The whimpering was maddening.
One time I came out of the teacher’s lounge and got between Patrick and his teacher. It was kind of like stepping between a grizzly bear and her cub. Patrick slipped from his walker and I bent like I was going to help him up. I heard an icy, “no” behind me. I turned and saw a look of, ”touch him and you lose that hand” from the teacher (I didn’t question it either, she was scary.) My job was tough, but that level of “this is for your own good” was beyond me.
Patrick’s mother would come to school early so he would have time to get to class. She would plop him at the front door of the school with his walker and march right back to her car and leave, no matter what sound was coming out of him. You know that was tough. But she knew Patrick was in good hands and what was being done had to be done.
In that same class was another student, “Jimmy.” He also had Spina Bifida, and a wheelchair, and a walker. I didn’t know what was happening in his family’s life or any of their circumstances. I did however observe that Jimmy’s mom got him to school late every day. She would bustle in through the side door closest to his classroom. He usually had a convenience-store chocolate milk and/or a package of mini-doughnuts in his hand. Then his mom would stay a while in the room. I did see him with his walker just a few times, crying. But I didn’t see him that often.
Through the year I became anesthetized to sounds of Patrick crying in the halls. I had my own fish to fry and so the school year progressed, then the summer program, then the new school year.
At the beginning of the next school year I was running around the building (as I usually did) acting like I had something important to do. I had an arm full of papers as I turned a corner. I was stopped in my tracks and nearly pitched them all to the floor.
There, in the middle of the hall
with his new school clothes,
new backpack,
new leg braces,
and no walker
was Patrick, walking to class.
He was excited to see his teacher and was happily chatting away about his summer. I must have had a stunned look on my face. All I could do was say, “HEY!” That ELP teacher barely looked my direction, but she had a look of pride (dare I say “smugness”) on her face. She deserved to be smug.
I saw a miracle that day.
The next summer I saw Jimmy playing developmental T-ball. He was full-time in a wheel chair. Jimmy was obese, never to use his walker again.
(You can fill in your own life lesson here:_____________________________________)
chris
To learn more about Spina Bifida: http://www.spinabifidaassociation.org/
To learn more about The King’s Daughter’s School: http://www.tkds.org/
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