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, I noticed Alicia was not meeting developmental milestones like her sisters were, (she was unable to lift her head up, sit, or hold her bottle) so I contacted Early On and she began receiving PT and OT services in our home. At that time, I 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. At three years of age, Alicia transitioned to our local school district’s Early Childhood Special Education (ECSE) Program. By the end of her second year of ECSE and after almost four years of private intensive physical therapy, Alicia was gaining strength, and reaching the limited goals set for her, but was unable to sit independently, feed herself effectively, or become toilet trained. At school, she was the only child with a physical impairment, and the goals set for her by the school physical therapist centered on teaching Alicia to help get her body ready for her aids to transition her from her wheelchair into the various adaptive seating options that would be provided to her throughout the school day. Alicia enjoyed her classroom environment, and was very engaged in the lessons being taught, but was limited by her gross motor impairments.
In the spring of 2016, when Alicia was just over four years old, I learned of the CEEP Study through MSU. We went to Conductive Learning Center for an evaluation to determine if she was eligible for the program, and it was immediately clear that this program was meant for children just like Alicia. I enrolled her in the Summer Camp, and committed to a five hour per day, five days per week program.
At the end of the first week, we returned home, and rather than buckling her in her usual adaptive chair at lunch time, I sat her at a child sized table set with her sisters. Her father, who had not seen her throughout that first week, was amazed to enter the room and see her sitting independently in a standard chair, proudly enjoying her lunch! By the end of the second week, we returned home with a child who was using a toileting chair used by typically developing children. The progress was amazing to watch, and even more importantly, Alicia was so proud of this progress, fully knowing that she was learning to become more independent.
At the end of the four week session, it became very clear that this type of education was exactly what Alicia had been missing. While every other therapy we tried seemed to be focused on teaching her to depend on other people and adaptive equipment, this was different. She learned that she can rely on her own body to accomplish what she wants to do, and I cannot imagine not allowing her to continue along this path.
Ever since Alicia started attending CLC, we have seen even more amazing progress in her body and her social skills. Instead of placing her on the floor and watching her play with toys that I’ve chosen for her, I can now stand back and watch while she gets herself into a sitting position, and independently gets herself around the room to find the toys that SHE prefers to play with. I have no doubt that if she had remained in her previous therapy and school environment, neither she nor her caregivers, myself included, would know what she is capable of doing.
I am grateful for the Study because when considering conductive education, it gave a level of credibility to an approach that I had previously not heard of, and quite honestly, I may not have otherwise been willing to invest our limited resources in. I look forward to the day when all children like Alicia will have an opportunity to experience Conductive Education and benefit the way she has.
Jill - Mother of Alicia
