The adoption was finalized and the process to register our daughter with early intervention was smooth. She was accepted and put into a remarkable program called Sound Start at Lake Drive Program. Over the next year we switched audiologists and ear nose & throat specialists to find personalitites in professionals that met our expectations and values. Our daughter attended sessions at her school, and after she started talking more, had speech therapy at home. She progressed well and advanced mentally and physically beyond her biological age. There was little advocating needed.
Then came preparations for turning 3 years old. In New Jersey there is a clear delineation between our early intervention services and preschool services. Each child needs to be re-evaluated prior to turning 3 and meetings are held with the local school system to determine what, or if, any services will be provided. We were given a procedure manual, which was also explained by our early intervention case worker. We had heard stories from other parents about their experiences. The common thread was that it was not a simple, stress-free experience, and, most likely, it would entail a lot of advocating. At the same time, our daughter was starting the evaluations for transition, her doctor recommended a hearing device based on her recent reactions to sound. These two events have led me to really understand what it means to advocate for a child. We have had help from some remarkable people most of whom we have met during this process. All were very willing to support our daughter's cause. So here are our recommendations when advocating for your child:
- Network with other parents in a similar situation. We have benefited from hearing other parents' stories, and have, hopefully, been able to share some value with parents following us in the process. It is sad, but at the same time re-assuring, to realize that other families are facing similar situations. For example, we learned that it is common for hearing test results to vary from visit to visit and it is common to change doctors if you feel uncomfortable with a practitioner and his or her recommendations.
- Call specialists and ask if they can support you in any way. Not only did our daughter's school help us, but the other school for the deaf in the area did as well. Even though we had no connection with the Summit Speech School, the executive director assisted us by suggesting a new type of hearing evaluation and, after a review of our daughter's case, provided suggestions on the type of services that were needed. Further, when we had issues obtaining my daughter's hearing device, I phoned clinics around the state asking them if they dealt with the device. Every time, even if the staff could not help me directly, they gave me suggestions and phone numbers of further places to call.
- Do your research. Our daughter's school pointed us to some scholarly research for children with hearing loss. By adding our own research we were better able to articulate the long term effects of our daughter's condition and identify methods for aiding her. Further, we now know the developmental areas where she is at risk, and can monitor those areas more closely.
- Persistence pays off. First, we were persistent with the local school system in separating a disabling condition from developmental delays. While there may not be a need for some special needs children to have special services if they are not developmentally delayed, a hearing loss is a situation where it is necessary to have special services if a child is going to succeed in an integrated classroom. Throughout the evaluation process, we learned more questions to ask and built up our case to a point where the school system agreed to classify our daughter for services. Second, we were persistent regarding complications in obtaining the hearing device. The rehab center we were sent to was unresponsive, could not schedule appointments less than a month in advance, and had an inappropriate number of audiologists (1 instead of 2, for a 3 year old patient) attend the appointment, which caused the process to be drawn out further. I phoned the ear nose and throat specialist and asked if we could go somewhere else. I was given the director's name for the program at the rehab center. When the director was no better than the other staff, I phoned the doctor again and asked to go elsewhere. He really listened. He phoned me at home after-hours and listened to all of my concerns. He then took over the case himself, opening an account with the manufacturer. His audiologist also kept the process moving for us when the manufacturer had issues delivering the hearing device on time.
- People care (even if their job requires that they say no to you). Every person throughout the process supplied us leads and assistance. It was remarkable. First, with regard to funding, the device is pretty costly, even more so than a normal hearing aid. The school system who was declining services gave us names to call; the early intervention people put together a request to the state for us; the doctor wrote to our insurance company; the manufacturer of the device offered advice. We talked to people in state government roles, and family members gave us ideas. In the end, we did not get financial aid, but I am truly overwhelmed by the number of people who offered advice and wrote letters on our behalf. Second, people helped us lobby for services. The rehab center that was having issues getting us the hearing device, offered to write a letter to the school system. Our daughter's school and the other school for the deaf wrote recommendations for us to submit. We are awed by the willingness to help others that was shown to us and hope that we can do the same for other families when they need it.
To better understand the issues of educating a child with special needs, start with browsing the National Dissemination Center for Children with Disabilities. Their website offers information on disabilities, education of special needs child, state specific programs and offices, and much more.
