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Recently when discussing, with the sponsor of my Support Group, my frustration that parents wouldn’t come to a meeting to get information to help their children with special needs, she shared with me a shocking truth, or perhaps a shocking series of ‘excuses’. I suppose which it is would depend on one’s interpretation.

I expressed to her that I would do anything for my son. When we adopted him, we became instant parents and instantly had to learn how to navigate the special education system. I had to learn what his rights were, what my rights were, what I had to do to secure him the education he deserved to have, was guaranteed by law. I had to ‘fight’ every year he was in school, to secure him an appropriate education and even now that he’s no longer in school, the ‘fighting’ continues in trying to get him adult services.

I educated myself about the law, the special education system. I talked to other parents, talked to educators, advocates. I attended workshops and trainings, some that required an overnight away from home. I learned everything I could, accepted every resource I was offered.

When I was working as a professional advocate school districts shared with me their frustration that parents, by and large, didn’t attend Individualized Education Plan meetings. Their explanation for why they didn’t? Educators believed that parents felt intimidated, overwhelmed and in many cases the parents had some degree of ‘special need’ themselves.

My sponsor elaborated on this theory. She indicated that parents don’t seek out help for themselves in understanding the system, nor for their children because often they are experiencing grief, denial, shame. They are suspicious of the ‘establishment’ and don’t want another ‘professional’ telling them about their child. They interpret much of what is recommended to them as an attack on their parenting, just another person telling them what they are doing wrong, what they don’t know.

She said that parents who’ve waited 9 months for a child, hoping for the perfect baby, are often suffering depression, deep sorrow, upon learning that their child has a disability or delay. She suggested that they are grieving the loss of the child they were hoping for. They don’t want to admit, to themselves or anyone else, that their child is ‘different’. They feel responsible, that they ‘did it’ to their child.

In their denial, they don’t act to support their child.

She suggested to me that to get parents to attend Support Group meetings, they have to be advertised as ‘Fun, Family Events’, childcare has to be provided with activities for their children, food should be provided and information to be shared shouldn’t be labeled a ‘training’, or parents won’t come out.

This infuriated me! Parents need to be bribed to get them to educate themselves so they can be effective advocates for their children? Do they not realize if they don’t learn and demonstrate appropriate advocacy skills for their children that their kids won’t learn how to be good self-advocates?

I’m sorry… I understand grieving, feeling intimidated, etc., but at some point you get yourself together and do what you need to do. You put your ego and needs aside and do what is necessary so your child can succeed.

If your child is in the later years of Elementary School, or in Middle or High School there is no excuse for not being educated and actively involved in their education. If you’re still ‘grieving’ after all that time, there is something seriously askew with your priorities. It’s not about you, it’s about your child and your child’s future. You need to put your ego and feelings aside and assume your responsibilities as the parent of a child with special needs.

I just can’t imagine not doing everything necessary, not taking advantage of resources and education available to you, to support and care for your child!

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