Shay Jacobson, RN, MA, NMG, LNCC, CNLCP
Most of us remember at least one occasion in childhood when we were the “new kid”. In this almost universal childhood story, there is a crazy casserole of new house, new room, new school, new teacher, new friends, and the unsettled feeling of not quite knowing where we belong.
These stressors were hard to measure in nine-year-old Kyle’s case. He cannot speak and can hear only a little out of one ear. His vision is poor. Walking is difficult for him and his muscles are weak. An accident at birth triggered for him a diagnosis of hypotonic cerebral palsy, which made moving from room to room difficult and moving from home to home exceptionally complex.
Still, the prospect of a new house and school was too grand an opportunity for Kyle’s parents to ignore. They lived in a small ranch house with Kyle and his two siblings, sharing one bathroom, three bedrooms and a host of issues. In addition to Kyle’s profound disability, there was his father’s near-fatal stroke to consider, and his older brother’s autism spectrum disorder. It was a lot for one family to absorb.
A Turn in the Road
Just as Kyle was nine years old, so was the law suit filed to address the circumstances of his birth accident and its sorrowful consequences.
The eventual settlement of the suit was both a conclusion and a beginning. The legal drama was over and now, at last, a new house could be considered.
Kyle’s house, though familiar and beloved, was so compact that his therapeutic toys were crammed into a corner and it was hard to maneuver his wheel chair around tight turns and small hallways. Only a narrow path lay between his bed and his brother’s. The bathroom afforded no space for the adaptations most suited to his needs.
Finding a new house was one project. Choosing the right school was quite another. This two-tiered undertaking was too much for Kyle’s mother who was busy with his needs, his brother’s, and a recovering husband finally back to work after his debilitating stroke.
The court ordered an assessment of Kyle, particularly with respect to the manner in which his needs corresponded to various housing and educational options. We immediately set to work, using our experience in the areas of special needs housing and education, to collaborate with Kyle’s family to ensure their next home and school would serve Kyle effectively for years to come.
When needs are as far-reaching and profound as Kyle’s, the favored approach might be to build a house specifically designed to maximize his home-based access to therapeutic care, his comfort and ability to move from room to room and floor to floor, and to meet the needs of his family. This custom home would also need to be located in an area with excellent educational avenues for a boy with Kyle’s needs.
Building, however, takes time. We would need to find a large lot in a good school district, hire an architect, develop plans and then wait months while the house was built.
Twenty Seven Houses
After waiting nine years for the settlement, Kyle’s family could not choose to build and wait without first ruling out the idea of buying an existing property and modifying it.
And thus the search began. Working with a savvy realtor, a special needs housing contractor, and our Life Care Manager, Kyle’s parents looked at 27 houses in the area’s best school district for special education. Some were immediately eliminated – they just could not be adapted to accommodate an elevator, a lift, and other special modifications Kyle would need. A few, however, showed promise.
And then the right house appeared.
It has three floors, an open layout and plenty of room for Kyle to grow and develop. His bed fits easily into the sitting area of his parents’ spacious master bedroom where they can respond to his needs in the night. There is ample space for a sensory gym in the finished basement. The largest of the bathrooms can be reconfigured to include a wheelchair accessible shower. And, perhaps most important, the house can accommodate an elevator with access to all three floors, a lift in the garage, and an area on the first floor where Kyle can be transitioned in and out of the house.
Fueling the excitement for Kyle’s family was the fact that they could move into the house immediately and live in it while the modifications are made.
Kyle and his family were ready to move.
The court was very interested in a full report on the school Kyle attended and the new school he might attend. Both schools remained viable geographically and both offered special education services suited to Kyle’s advanced needs. Determining which school would serve Kyle most effectively was at the heart of this assessment.
We started with Kyle’s current school. After careful study, our Life Care Manager identified some areas where therapeutic gaps existed in his Individualized Education Plan. Where the school might have developed a reasonable plan for Kyle’s needs when he arrived years before, they had become a bit complacent. Kyle’s IEP was not at all reflective of who he is as a nine year old, and sorely underestimated his learning capabilities. Educational conferences were convened with school therapists, teachers and the principal as we attempted to revitalize efforts to bring Kyle to his full potential.
In the meantime, the new school was also being explored. Kyle’s mother was thrilled with the environment and caring staff. She believed Kyle might benefit from a more proactive educational approach in this new school. The staff and therapists we met with seemed to have greater insight where Kyle’s needs and potential were concerned and excellent ideas to strengthen his IEP. Despite the probable challenges created by an unfamiliar physical space and a new staff, we reported to the court that Kyle’s educational goals would be more successfully met at the new school.
Kyle did indeed become the “new kid” with a new house and a new school. In the context of his special circumstances, being new brings with it a fresh look at the issues at hand and, in this case, renewed attempts to improve rather than merely accept. At this key transitional point, Lifecare Innovations perceived an opportunity to reinvigorate the rest of Kyle’s therapeutic world, as well.
New Attention to Old Problems
We worked with Kyle’s mother to find new therapy providers to help strengthen Kyle’s abilities. One of Kyle’s most significant hurdles revolves around meaningful communication techniques. Kyle’s inability to utter more than simple words, such as “Mom” and “uh-oh”, created low expectations in his speech therapy goals. Lifecare Innovations located a new speech therapist that he would see weekly to work specifically on communication. New technologies are being reviewed that can help him communicate with his mother, such as using an IPAD to touch “yes” and “no” responses. This technology will be incorporated into his school and home life for consistency.
We also found a Behavioral Therapy Specialist to assist Kyle with self-stimulating (and often damaging) behavior. This includes poking his own eyes, grinding his teeth, picking at his skin and chewing on clothing. Everyone on Kyle’s team anticipates improvement in these areas now that a specialist is involved.
Lifecare Innovations was privileged to facilitate a renaissance for Kyle and his family. Kyle’s mother felt the effects of having significant stresses allayed in her life. Having a professional partner, someone she could rely upon for expert advice and personal support, made her world more manageable. This support will remain pivotal as the home modifications begin in earnest.
Kyle, as the new kid with the new therapists, is showing accelerated progress. He is adjusting well to a house that affords him therapeutic space, and to a school that shows active interest in seeing him grow.
We moved Kyle and, through the process of assessing this young man, so full of charm and personality and boundless potential, Kyle certainly moved us.
For more information regarding our care management services, please call 630-953-2154. Our staff is ready to help answer the questions you may have.
©Lifecare Innovations, Inc.