Real Life Stories

Back to School: Traveling Different Roads

By Grace Williams
Senior Program Manager, Children and Youth with Special Health Care Needs, AMCHP

Back to school means different things to different parents. As a mother of two older typical children and 17-year-old twin daughters with special health care needs, I have experienced the vast differences between these two experiences. I would like to reflect upon the back to school matters related to my daughters with autism, who function at a very low level, and are non verbal with limited communication, complex behaviors and ever changing physical and neurological health care issues.  

The back to school preparation for the upcoming school year begins at the annual meeting of the Individualized Education Program (IEP), held between January to April. The goals, objectives and related services are written into this legally binding document to be implemented in the next school year and signed by the parents, the school and the county school system. My daughters are also approved for Extended School Year services. They attend school during the month of July and are out for a few weeks only in June and August.  

My daughters have always been in different classrooms except for when they were in the first grade in the neighborhood school. They have been attending private, special education schools at out-of-county placement programs because their IEP could not be implemented in our neighborhood or county schools due to their complex behaviors and needs. They have had the same teachers for two or three years at a time and it has been very helpful because of the consistency and they are familiar with my daughters. The speech, occupational and mental health therapists and one-on-one aides often change from year to year. 

Both of my girls have been attending schools in two different counties, one to the north and the other to the south of our house, for the last two years. Transportation is a related mandatory service that has been one of our major challenges related to back to school matters. One of my twin daughters rides a total of three hours and her sister rides for two hours on a daily basis. The bus drivers and aides are selected in a bidding process according to their seniority and labor unions and we do not always get back the same bus drivers and aides. We have to depend on the luck of the draw to find out whether these individuals will be able to understand the behaviors and special needs of my daughters and deliver this service in an appropriate manner. I have to use all my advocacy skills and personal connections to educate the transportation department, bus lot and the bus staff to make these bus rides work effectively. 

Our typical back to school ritual does consist of buying a new back pack, a new lunch box and a few school supplies and a special daily communication notebook for daily updates, for each daughter. However, we do not shop for back to school clothes and shoes because both my girls have sensory issues and there‚Äôs no guarantee that these new items will work. Preparing them to return to school after a few weeks off in August and returning to a routine, which includes getting dressed for school, eating breakfast and taking medicine, is a real challenge even with another trained caregiver to help me in the morning. 

In spite of these challenges, back-to-school time brings back structure, consistency and normalcy to our family and I can hardly wait for my twin daughters with autism to go back to school!