This guest post is from Nakeishia Knox, a blogger for Many Faces of Autism who wants to share her Light It Up Blue story with our community. How will you Light It Up Blue in Apri for Autism Awareness Monthl? Tell us here.
April 2, 2014 is going to be a monumental day in the city of Newark, New Jersey. Why? Well, the city officials in Newark have decided to participate in Autism Speaks' Light It Up Blue campaign!! Autism Speaks is the global voice on the forefront of urging our government and the private sector to listen to the concerns that advocates and family members (like myself) have about autism and actively working to address the concerns of the ASD community as a whole.
Community. Community is the key word because it represents us all. Each and every person affected by ASD. That includes urban families that are fighting to get support for their loved ones on the autism spectrum. Hence, Autism Speaks fights for people like my son, who resides in the city of Newark and all other ASD families that that call Newark home as well.
When I reached out to Liz Feld (President of Autism Speaks) last year, I did not even think that she would have remembered me. I had met her at an event the year before and I took her card and told her that I would stay in touch. But, I did not – for MONTHS. Why, you ask? Simply because I (like many other families that struggle to get services for their family members with ASD) was so tired of fighting and consistently trying to get services for my son, tired of “explaining” why my son needed services and SO VERY tired of worrying about the inevitable – what is going to happen to him after he turns 22. Oh 22. That golden age. The age when typically developing young adults have graduated from their postsecondary education, trying to get their “first” professional jobs and possibly moving out on their own.
Well, I did say typically-developing, BUT since my son has autism, his path will inevitably be very different. I deduce that to mean that my walk will somewhat continue to be the same as it has been. I will have to continue to be his guardian, caretaker, advocate, financial-advisor and all-around protector for as long as he needs me – which can quite honestly mean the rest of my life. Not that I am complaining. I am truly blessed to have had my son. I just know that my life’s path will always include taking care of my adult son. But, this is my walk. Up until I met Liz, I truly felt that the needs of the urban child/adult with ASD were a non-issue in the disability community. People just did not seem to care. But she connected with me initially AND when I got up the nerve to reach out to her late last year, she immediately re-connected with me and I knew then that I found my ally – Autism Speaks. No longer did I have to feel isolated and alone or tired of explaining what I was experiencing with my son. Liz said that Autism Speaks would support me and other families like mine that reside in Urban America. For me, that meant Newark – my city – was part of the Autism Speaks family. Newark, the city I grew up in and continue to live in, work in and continuously offer support to other families that have loved ones on the spectrum as well in. Yes, Newark, New Jersey!
We had not been forgotten. I no longer had to feel that my concerns fell on deaf ears.
LIUB. They say, “from those to whom much is given, much is expected.” That being said, I knew I had to pay it forward. Autism Speaks allowed me to go to Washington in November to make my voice heard to Congress, just as a Newark mom advocating for the needs of my son. I was allowed be in the company of ASD “heavy-hitter” advocates, like the Wrights who founded the organization. Realistically, I would have probably never had an opportunity like that in my life. But they chose me to come and for that I am eternally grateful. So, when Shelley Hendrix, Director of Grassroots Development for Autism Speaks, reached out to me and charged me with rallying the troops to see if I could get my town to participate in the 2014 LIUB campaign – I knew that I had to do it.
After a few failed attempts and many follow-up calls reaching out to the administration of Newark City Hall, Shelley contacted me last week and said that she had received word from Newark officials that they will light up Newark City Hall blue! I could not help but squeal when I heard! Once again, you ask why? Simply because it is something that I honestly never believed would happen. I just did not think enough of the “right” people cared enough to push it through and bring it to fruition. But, I was wrong. Just like Liz said to me in our first meeting, “YOU ARE NOT ALONE.” People do actually get it and they know that ALL people on the spectrum need to have their voices heard – even those in urban America like the city of Newark.
All I can say is that I feel that this is the start of a beautiful collaboration and I AM SO VERY HONORED and GRATEFUL TO HAVE PLAYED AN INSTRUMENTAL PART OF IT. For the first time in a long time, it truly feels great to “win” at something. I am so excited to see my City Hall “reppin” blue on April 2nd! We have a long way to go with growing autism awareness, but I must say that this is a wonderful start! I will be wearing blue so very proudly because I know what it means to me.
I am a MOM WARRIOR, not just for my son, but all people, young and old, that live with autism and all mental disabilities. I will not accept that people with ASD will not be provided the opportunity to live their BEST LIFE!!! They have the right to have the best quality of life that they can have – just like every other typically developing person. Until then, I will tirelessly advocate for them. I will advocate for them until I take my last breath. Thank you Autism Speaks. I guess it is true that to whom much is given, much is expected. I hope I made you proud. See you April 2nd!!