The parent advocate and special needs families
I am often asked by parents who made the most difference in the lives of the boys after diagnosis – a parent advocate, speech therapist, a school, a clinic or someone else? And what were the decisions we made that helped most in bringing the boys forward. It’s a great question and I can say that in the early years it seemed like we were groping through a thick fog when it came to the boys’ language problems.
When Val and I look back, without a doubt, we were blessed in meeting a wonderful parent advocate fairly early on in our journey. At the time we had some idea of the difficulties that faced the boys. They were severely hearing impaired. They were not picking up any language, speech, sign or literacy. We had massive difficulties organizing them and there was a frenetic quality about them that made the energizer bunny look lethargic.
Parent advocate Diane Provo based in Marin county near San Francisco became and to this day remains one of our most trusted advisers in the growth of our boys. She helped us to understand that making sense of how to develop the boys was a real necessity. She gave us an overall perspective on what we needed to do. The boys had so many needs and she did much to get us on the road. When I think about everyone we met in those early days, Diane was the most helpful.
And what made her so unique? She had worked as a special education teacher for some 20 years. After this she worked with hundreds of families, doctors, schools, occupational therapist, speech and language pathologists. You name it, she had been there and done that. What was particularly unique about Diane was that she was always learning. Every case brought its own set of circumstances and events over the formative years of the child’s life. Diane looked at each case with a lifetime of experiences and yet took a fresh view with every new family she worked with.
For Val and I, we have modeled much of our contact with our families in a similar way. Share what we know in speech and language development while always learning from every child we work with. It’s not simply about growing language, but how this language and the child fits into their world and to be successful there.
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