Learning To Be An Advocate For My Special Needs Child Is One Of My Most Important Roles
By Kara Stewart-Agostino
May 1, 2018
My daughter was diagnosed with hearing loss at eight weeks old. The audiologist said something to me that has become my guiding principle: “Your daughter will do everything that other children do, she will just do them with hearing aids.”
As parents we are the best authority on our kids and the environment they need to reach their full potential.
She will explore all her interests, play whatever sports she wants to and, most importantly, she will have access to the same education as her typically hearing peers. It's my job to make sure that happens.
Parents learn early that one of our most important roles is to advocate for our kids. And parenting a child with a disability provides me with many opportunities to learn how to be an effective advocate and get comfortable with using my voice.
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As parents we are the best authority on our kids and the environment they need to reach their full potential. As my child’s advocate, I also need to be the most educated person in the room about the details of her diagnosis and its implications for her full participation in a variety of settings. I make sure to understand the kinds of accommodations that can support her and the services that she should be able to access.
... I need to make sure she has an optimal learning environment to do everything that other kids do — just with brightly coloured hearing aids.
Having strong and open communication with my kid's teachers is vital. I attend the parent-teacher interviews, not just with the classroom teacher, but with the music and gym teachers. I operate on the assumption that we’re all on the same team and that each teacher wants to see my kid flourish in their classroom. Part of my role is to help facilitate that process.
To be able to fully participate in a mainstream classroom, my daughter requires specific accommodations and support. I know that our school systems are cash strapped and special education services are stretched. One day she will not be able to access all of the services that she has today — services will be diverted to other children who also need the support.
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But as her advocate I need to remember that my role is not to consider a hierarchy of children with disabilities. I don’t want to argue with the parents of other children with disabilities over whose child has the greater need. We should strive for all our children’s needs and accommodations to be met so that they can all have an equitable experience of the education system and achieve their individual potential. My focus is on my daughter’s particular needs in the classroom (though they may change over time) and on pushing organizations to provide the services that they have promised to children with hearing loss.
Services for kids with disabilities are always the first on the education budget chopping black — this is an old story. But knowing this, I also know that I need to make sure she has an optimal learning environment to do everything that other kids do — just with brightly coloured hearing aids.
One day my daughter will be her own best advocate. Until then, I need to model what that looks like.