Advocating: Vinegar or Honey?
By Marcia Breese, Washington State H&V
When my son Jay was four months old, which is longer ago than I care to admit, I noticed that he wasn’t responding to sounds. This was long before hearing screenings were available in hospitals, so we were very fortunate that our pediatrician took my concerns seriously and referred him for a hearing test. Jay was diagnosed as profoundly deaf. I immediately enrolled him in an Early Intervention program where he underwent the usual developmental evaluations. As a result of these evaluations, I was told that he needed Occupational Therapy (OT). I’m red-faced to admit that I seriously thought OT involved helping my son learn the skills needed to get a job. While I strongly supported him being self-supporting as an adult, since he was only nine months old, I thought these professionals were a little overzealous. I felt we had plenty of time, and focused on other, more immediate issues.
Fast forward to Jay at three years old. He was enrolled in an Early Childhood Education program where he again underwent developmental evaluations. I was allowed to sit in on the OT evaluation, where the Occupational Therapist took the time to explain that some children who are D/HH often have issues with their vestibular system which is located in the inner ear. They may experience balance problems, poor core stability and weak muscle tone, to name a few symptoms. A light went on-this explained why he had delays in sitting, standing and walking. He also had problems with fine motor activities, such as buttoning his shirt. The school was also concerned about his attention span. OT could work on all of these issues, and would include exercises to strengthen his core stability, muscle tone, fine motor skills and help with his attention problems. It was then that I realized OT was something Jay needed now!
At the next IEP meeting, I asked that OT services be included. I was told that the program didn’t have an Occupational Therapist, therefore, this service would not be included in his IEP. Fortunately, I was working as an advocate for children in special education programs, so I knew my son had the right, and the school had the responsibility, to provide OT. The supervisor still refused to include OT, and suggested I take my request to someone higher up. I did as she suggested and worked my way up the chain of command, until finally I met with the Assistant Superintendent. He also indicated the program didn’t have an OT, and he didn’t know where to find one. He even suggested that I find an OT for the program myself! He insinuated that I was being unreasonable and selfish for wanting a service that the school could not provide.
I was more than frustrated. I ranted, raved, threatened, and threw temper tantrums. School personnel began to scatter when they saw me coming. Finally, after more than a year, the school hired an Occupational Therapist. The supervisor decided to have all children in the program evaluated by the Occupational Therapist, and several other students were identified, and started receiving. OT services also. Because Jay received OT, he was able to learn to ride a bike and rollerblade, which surprised the Occupational Therapist! Today, Jay is indeed a self-supporting adult, who engages in activities that surprise us all, including hiking. I attribute this to the OT services he received as a child.
So, what’s my point? I actually have two points to make. My first point is that parents are responsible for advocating for their children. Our kids can’t do it for themselves until they are older and by then it may be too late. When parents successfully advocate, more often than not, their child is not the only one to benefit.
My second point: I can’t emphasize this enough. Don’t advocate like I did. Yes, I got what I wanted and what my son needed, but I ruined important relationships while doing so, which made interactions with school personnel uncomfortable. I gained a reputation for being difficult, which followed me from year to year, and could’ve influenced how the school staff perceived my son. And I did feel guilty and embarrassed for losing my cool and being such a b…ulldozer. Developing and maintaining good relationships with all school personnel makes life so much easier for everyone. For the most part, school staff have the student’s best interests at heart, and if a positive relationship exists, they are more willing to listen to and act on, parents’ concerns. Learn your child’s rights and the appropriate way to advocate by attending training, reading books and articles, and talking to other parents who have had positive results when advocating for their child. The website www.greatschools.org has a wonderful article entitled Parents’ Top Tips for Partnering with your Child’s Teacher. Find resources regarding advocacy and special education rights on the Hands & Voices website at https://handsandvoices.org/astra/index.html. Also, an article called Rebuilding Burnt Bridges on the H&V website would have helped me oh so many years ago. I would definitely have benefitted from learning how to effectively engage with teachers and administrators, which would have eased my stress level tremendously.
It’s like my mother used to say, “You catch more flies with honey than with vinegar.” ~
References
Nandi, R and Luxon, LM (2008) Development and Assessment of the Vestibular System. International Journal of Audiology 47:566-577.
H&V Communicator – Spring 2022