“I’ve started to hear from moms of kids like my son, saying that they are also struggling with the same issues; honestly, that is so comforting. Because most of the time, it feels like I am alone in this, which makes it hard to talk about — and leaves me with very little to say.” - Susan Wagner
A few weeks ago I was speaking with a group of women - all mothers - about learning disabilities. I was there to provide my point of view as an advocate for public education and the changes public schools need to make in order to be successful. Their success leads to successful students, people and future members of our respective communities.
Prior to discussing learning disabilities I had a separate - but related - conversation on education funding and the trouble with the reauthorization of the Elementary and Secondary Education Act. One thing led to another and soon we were covering the sequester, funding for the Individuals with Disabilities Education Act (IDEA) and finally to parental engagement.
As a an advocate for educators (I like to say ‘advocate’ as opposed to ‘lobbyist’ because every time I say lobbyist someone asks if I had perfectly aged scotch with my filet mignon. And then they ask if I work for the NRA. No.) I always want to know what parents are thinking. It’s turned into a bit of an obsession for me; with every policy update in Washington I think beyond what will happen in the state and in the school but I want to know how parents are reacting and how the piece of policy 500 miles away will affect their child.
Which leads me back to learning disabilities: I have recently learned that parents are afraid to talk about what they are going through with their children. I asked my friend Susan who writes about her experiences with her older son and she said that it’s the stigma. She said it matter of factly that parents are afraid of the reaction from friends, family and others. The Other People that we are all afraid of, even though they may be nameless and faceless, there is still a worry about what they think which while natural, is unfair to the parents and, more importantly to the child. But as a person who wants parents to rise up and speak out as they are their child’s best advocate, I wonder how I - actually WE in the education community - can assist parents as they navigate the school system.
The unfortunate reality is that the legislation that determines how much in federal funding a school district that provides services for children with any sort of disability is not fully funded. Parents are often confused by the labyrinth of the IEP process. Meanwhile eachers and administrators now have the threat of job loss or poor evaluation scores if a child doesn’t do well on a test. It’s the perfect storm of disaster for a group of children and their parents who are already feeling overwhelmed.
During my conversation on learning disabilities I asked these parents what we, on the policy side, could do to make things easier. I also asked how parents could be advocates on a larger scale by talking to policy makers who don’t know about the pressures that so many families face. But here’s another reality; I can’t advocate for you and policy makers and education stakeholders do not how to assist the parents of children with learning disabilities and the children themselves, if the parents don’t speak up. For you parents and relatives of these exceptional children, here is what I want to know: Are you facing that stigma from other parents and how do you turn that negativity into a learning experience for others? How can we get you to speak out on behalf of your child and how can education stakeholders (from the teachers to those who write education policy) help your child?
Suggestions and answers are welcome.
photo by Anders Ruff