Navigating Early Intervention and Education
Our daughter was diagnosed with spinal muscular atrophy (SMA) at six months old. The doctor told my wife and me that our daughter would need early intervention training, including therapy and socialization, and accommodations in primary education and beyond.
Therapy and medical equipment to use at home
And so we began our daughter's therapy at home twice a week for over twelve years. Her medical care team included a physician, a pediatric neurologist, and a pulmonologist. She also saw a physical therapist, occupational therapist, and speech pathologist.
We bought therapy equipment for the therapists to use with our daughter. This equipment included exercise balls, parallel bars, and adaptive feeding utensils. We later purchased medical equipment, such as a suctioning machine, pulse oximeter, and a motion bed to prevent bedsores.
Socializing so she could be one of the kids
My wife arranged playgroups for our daughter with other children. Our child as well as the other children greatly enjoyed these gatherings, playing together and having fun. Most importantly, all the children were desensitized to the others who were different, whether they were in a wheelchair or had other special needs.
In the beginning, the other children would stare at our daughter and ask her endless questions about her condition, but that quickly stopped. Our daughter's peers considered her to be just one of the kids!
Incidentally, we also bought a handicapped-accessible van allowing her to attend birthday parties, visit relatives and go to social events.
Early mainstream schooling for increased socialization
My wife and I were supporters of mainstreaming in school. We placed our daughter in a nursery school that accepted her with her diagnosis. Although she was in an umbrella stroller during this time our daughter benefitted from increased socialization and early childhood learning through this excellent placement.
Public school and lack of mainstreaming opportunities
Before we knew it, it was time to enroll in our daughter in kindergarten. We decided upon a regular public school setting and purchased a new electric wheelchair so that our daughter would be able to participate in her class's activities more independently.
Unfortunately, our local school district's thinking was to send all special children to other school districts that were "set up" for handicapped students, rather than educate them in their home district.
Pushing the district to accommodate our daughter
To meet this challenge, I began to study the new federal laws for educating handicapped students, in order to be as ready as I could for our meeting before the district's Committee on the Handicapped (COH). Critically, I learned that when the school receives federal funds, it must follow all the public laws on the education of ALL children - including those with disabilities.
A COH is a team made up of educators, parents, psychologists, speech, physical and occupational therapists who develop an Individualized Educational Plan (IEP), which is a personalized education program for the student with disabilities. The teacher is responsible for implementing the child's IEP.
The COH is responsible for following all federal and state laws protecting handicapped students, including Section 504 of the federal Rehabilitation Act. All COHs are guided by these laws, with the goal of making informed decisions on meeting the disabled student's needs for reasonable accommodations.
Success in obtaining helpful accommodations though an IEP
The COH team prepared and signed our daughter's IEP. The COH assigned an instructional aid to provide her with personalized assistance in school. Modifications for making the school building more accessible to handicapped students were approved and instituted. They also provided our daughter with other services, as she needed help in getting from room to room; getting her textbooks out of her schoolbag, and using the bathroom. The aide also assisted my daughter with these tasks. We also had discussions with the COH about our daughter's need for transportation to and from school.
My wife and I reviewed our daughter's IEP annually with the COH team until she finished high school. Any participant in the IEP process can ask to meet with the COH to discuss additional issues should they arise, including any additions or deletions to the IEP.
Post-graduation accommodation needs are handled differently
Sadly, my daughter passed away after graduating from high school. Had she been able to go to college, she would no longer have had accommodation needs met through an IEP. Colleges now have designated offices to assist disabled students with special needs. These higher education offices work to provide supportive services to meet students' needs to attend classes, participate in student activities, and graduate.
Which emotional aspect of SMA do you find most difficult?