Our son’s spina bifida was never discovered during the pre-pregnancy ultrasounds. Instead, upon his birth, the doctor remarked that Gramm appeared ". . . to have a little spina bifida. . . . " Immediately, our hearts raced and our minds blanked. What was spina bifida? Could we "fix it" with medication? A surgery? Or a brief period of physical therapy? We felt helpless.
Within minutes, our small-town hospital room was inundated with doctors, nurses, and an emergency transport team—all cooperating to prepare our son for an emergency transport to our regional children’s hospital. One particular doctor stood at the foot of our bed—slowly sharing with us a laundry list of complications, impairments and limitations regarding our son’s future. Apparently, it was his job to prepare us for the "worst-case scenario." That is what most doctors, agencies and insurance companies did over the next several weeks. Everyone’s expectations for our son were low. And our spirits deteriorated gradually with every disabling report.
During our time at the Conductive Learning Center, we met families across the state, as well as from around the country, who have determined that this particular treatment is best suited to their children’s needs. In our case, our son has made better-than-expected progress through traditional therapies in certain areas of his development. However, certain skills essential for independence and self-sufficiency had not showed similar progress, prompting us to enroll him to see whether techniques outside the normal medical and educational system might work. After four weeks at the Conductive Learning Center, we were positively moved by the progress our son made in key areas, notably potty training, learning to drink from a straw and dressing skills, areas that until then had proved particularly challenging for his conventional physical and occupational therapists to address.
Alicia is an identical triplet girl, born in January 2012 via emergency C-section at 33 weeks gestation. As a result of acute triplet to triplet transfusion syndrome, Alicia was born in distress, and when delivered, she had an Apgar newborn score of 1, for only having a faint heartbeat. She was immediately placed on a ventilator. After 44 days in the NICU, Alicia was well enough to go home. There was no prognosis given as to what to expect for her future.
At six months of age, we noticed Alicia was not meeting developmental milestones like her sisters were, (she was unable to her head up, sit, or hold her bottle) so we contacted Early On and she began receiving PT and OT services in our home. At that time, we also enrolled Alicia in private physical/occupational therapy, for an additional four to six hours per week. During this time, Alicia was given the diagnosis of hypotonic cerebral palsy.
My name is Galen Spiegler. I am 18 years old and a senior at Keene High School in New Hampshire. I have cerebral palsy and I would like to share with you my experience at the Conductive Learning Center (CLC) this past summer. I must say I was not excited at first but this adventure changed my life.
I traveled to Grand Rapids, MI with my mother, my friend Zach, who also has CP, and his mother. We traveled in a 26 foot, camper. Going to Michigan for the hottest month of the year and camping so Zach and I could attend the day camp at CLC for the month of July, probably sounds like a challenge, but that was the easiest part of what I did last July. Let me take you through a day in the life of a kid like me at the Conductive Learning Center.
It took us three hours to fall in love with conductive education. The day we came to look at the program was the day we became believers of conductive education. Up until then, Ty received weekly traditional physical, occupational, and speech therapies, but we never could believe that those were going to actually teach him to sit, stand or walk. Therapists could only spend an hour a week for a child. Also, they were obligated to spend a good part of that hour assessing the child, and building therapy plans with parents, and completing reports. They would periodically ask me what I wanted to see Ty achieve in next three months, or what I wanted them to focus on. I never knew how to answer that question. Everything is important to parents. How can a parent choose feeding over potty-training, or sitting over standing? When I voiced my frustration that the therapies seemed just insufficient, one actually replied that it is heartbreaking for her, too, but the future of the children with cerebral palsy seems to be predestined, and that there is a limitation to “what therapists can do.”
I believe in hard work and doing what you can for yourself. That is why I agreed to give Conductive Education (CE) a try at age 17. I had done a CE camp when I was really little and didn’t like it, but if it would help me be independent more at college, I thought I would try it.
I came up to Grand Rapids to be at the Conductive Learning Center (CLC) because that was the only CE program in the United States that would take an older person. My first day, I was overwhelmed. I thought that they were asking too much of me. I expected to learn how to stretch better, and to gain some range of motion in my arms and legs. All my life I had been sitting on a plush cushion in a very supportive wheelchair, with seat belts and head rests and every kind of strap you can think of. The conductor/teachers were asking me to sit on a hard chair, with little supports, and hold myself up.
As parents who have traveled the world seeking early intervention for our daughter, Sarah (spastic CP), we feel uniquely qualified to share our observations, and advocate for the need of early diagnosis and intervention from birth. It is the availability of such a program, Conductive Education, that is the sole reason for our family’s move to Grand Rapids in 1999. Sarah was born with premature lungs at 36weeks. She spent 8 days in the NICU in Memphis, TN discharged as a healthy baby just over six pounds. Though she was not making her milestones, her pediatrician had every reason for this. Some babies never crawl, you know, they go straight to walking. If only we knew she was at risk. It wasn’t until well after he first birthday that we started seeking help.
The purpose of this note is to provide a parent’s insight into the benefits of the Conductive Learning Center. Over 15 years ago, we had our first child, a son named Johnny, who was born prematurely at 29 weeks. He spent over 2 months in the Neo-natal Intensive Care Unit. While in the NICU, John was diagnosed with Cerebral Palsy. His doctors were not sure exactly to what extent he would be affected and how it might hinder his development, but they were fairly certain he would be impacted by it later in life. We were told it was not necessary to do anything for him until he was 6 months old. At that point the insurance would intervene and if needed we would be able to obtain a 1/2-1 hour of physical or occupational therapy a week. When Johnny turned 6 months we did just that. The hour consisted of stretching Johnny and teaching us how to stretch him. We were thankful we had this intervention but felt that he really needed more.
To provide opportunities for preschool and school age children with motor challenges to achieve optimal physical, cognitive and social independence through the application and promotion of conductive education principles.