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When You Have to Fight for Your Child to Get the Disability Services They Need in School

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When my daughter was diagnosed with both Williams syndrome and autism, I lost my way.

But not for long.

I grew determined to do everything within my power to advocate for her until hopefully one day, she is able to do so for herself.

Some things weigh far heavier than others. The doctor appointments and the multiple therapy sessions pale in comparison to our struggles to get our daughter what she needs — what is guaranteed by law — at school.

By nothing short of dire necessity, we have the privilege of being represented by one of the best legal teams in our state, and even nationwide. A team that fights not just for the rights of my daughter, but for children across this nation who are in danger of bullying, segregation, restraint, seclusion, school violence, and falling further behind their peers, and the parents who would give anything and absolutely everything in trying to seek the appropriate educational setting and accommodations for their child.

What drives your and school district’s determination?

Is it Money? Power? Greed? Guilt? Fear?

From our experience, it seems money is the deciding force behind every inexplicable action taken by school districts.

In some cases, it may simply be not knowing how best to educate a child who learns differently from most. But defying the intent of our lawmakers in showing an unwillingness to learn and bring in skilled and highly trained staff who do have that ability goes beyond reason.

It takes enormous courage to question those in authority, to push when you hear “no” over and over and over again. It takes courage to question what is driving others’ determination…is it my child’s best interest, my child’s future, or balancing a budget?

Determining priorities and who makes decisions is tricky: is complying with federal and state laws, and making a difference in the life of a child who so desperately needs that extra service important, or are those in power conversely litigating against parents, grinding them down, forcing them away, under the guise of “saving money” in one regard, while foolishly wasting it in another?

I strongly admire all of those who persevere, despite the daily difficulties and changes in routines that can drastically alter the landscape and cause sleepless nights.

If I let it, guilt and fear might easily threaten to overwhelm me — guilt that my child struggles so much, and intense fear of what the future holds for her. I worry about who will keep her safe when I can no longer physically care for her.

It is these questions that drive many of us as parents of children with disabilities.

By sheer determination, no matter the hurdles our school district forces us to overcome, no matter the obstacles they throw in our path, no matter the services they take away, no matter the way they have treated my daughter with a lack of civility, kindness and humanity, my child will learn to talk, to carry on a conversation, to read, to care for herself, and to have some semblance of independence.

There are some precious things that can never be taken away, no matter how hard some try.

No matter what happens, no matter what a federal judge decides, or what decision a hearing officer reaches — I know we have already won, because my daughter is the happiest person I know.

Originally published: March 9, 2018
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