This post is by Nakeishia Knox, a mom who attended the recent Autism Speaks to DC summit .
My name is Nakeishia Knox. I reside in Newark, N.J., and I am the proud mom of a 17-year-old, very handsome young man with autism. I feel the need to tell you that I live in Newark because this city is a place where I (and many other moms that I know personally) am beyond frustrated with the lack of knowledge, information and support systems that are needed to ensure that our kids have an opportunity to attain the quality of life that they deserve.
As a Newark mom, unfortunately, I must admit that I have come to “expect” the unnecessary red tape and idiotic bureaucracies (whether it be in the educational, economic or social systems) that negatively affect my ability to provide my son, Philip, with the opportunities that would not only challenge him to be his best self, but would afford him the skill sets that he will need to adequately advocate for himself as a young adult with ASD.
Hope is what many in this town walk around without every day and I can honestly tell you that I have not had much of it myself these past few years. When I look at my son who is rapidly becoming a man – I get so panicked. Why? Well, I learned that at age 22, he could literally just “fall off the cliff,” so to speak, and have no school, program or job to wake up and look forward to for the rest of his life! This frightens me, is beyond my comprehension and is totally unacceptable. But, where do I go and who should I speak to, to ensure that this did not happen to him? I get so exhausted from having to continuously “explain” to the school district and lawmakers in this city, why it is imperative that my son receive the transitional tools that will enhance his quality of life. My question is always the same, “why can’t they just get it?” Why can’t they realize that my son did not choose to be born with autism? Can you imagine how angry and resentful it can make you? When a system that vows to protect him against the everyday abuses that, unfortunately, people with disabilities have experienced for years just looks the other way. It can make you can rather depressed, angry and emotionally depleted.
Last week I attended the first ever, “Autism Speaks to Washington” summit! I was in the presence of other moms, dads, grandparents and advocates that just “got it” and knew why a national agenda on autism is needed and frankly, long overdue!
AS2DC provided the statistics that were needed to bring national attention to the autism crisis. We don’t want sympathy. Parents just want to parent, protect our children’s rights and provide the tools (whether it be in education and/or vocational realms) that we know our children will need to live a fulfilled life when we pass away. Autism Speaks “gets it” and fights for Philip and kids across this world that have no voice!
Thank you Washington for listening - because WE WILL NOT BE IGNORED ANY LONGER and WE ARE NOT GOING AWAY! YOU WILL ADDRESS OUR CONCERNS and REMEDY THESE ISSUES! Why? Because we are a force and more importantly, we are family. And family takes care of family.