Autism Speaks Marches on Congress - Awesome Footage!

A Force and a Family

Check out this post for Autism Speaks!  It discusses my reflections of last week's AS2DC Summit!  Here goes...http://www.autismspeaks.org/blog/2013/11/20/force-and-family

Utah Autism Coalition: Care about autism coverage? Here's the most impor...

Utah Autism Coalition: Care about autism coverage? Here's the most impor...: Salt Lake County Mayor Ben McAdams proposed a budget last week that includes coverage for autism through the county's self-funded in...

Reflections

As I am sure most of you know, at times being a parent of a child with ASD is beyond exhaustingly isolating.  You can feel so alone and it can be overwhelming, I am proud to be working with organization such as Autism Speaks so we won't make the same mistakes and feeling.

😁

Autism Speaks Rocks it Out!

THE AGENDA

ON MY WAY TO WASHINGTON

Hey peeps!  I am on the Amtrak feeling wonderful and excited about what the next 3 days will bring!  I have wanted a platform for so long that I could use to "scream from the roof tops" that people within disabilities have a right to have a quality of life too!  They want nice places to live and careers where they feel fulfilled just like everyone else.  Well, TODAY GOD answered my prayers and HE decided to send meto deliver the message and BABY I AM UP FOR THE CHALLENGE!  Stay tuned...I am taking you all with me on this journey!

I hate my autistic daughter (Dr.Phil)

http://www.youtube.com/v/S5Ztv1FoHz8?version=3&autohide=1&autohide=1&showinfo=1&autoplay=1&attribution_tag=Uc7vzYQBAlq3My6y5DXFMg&feature=share

I am happy to have found this place!

I am here!

Feelings of Frustration of an Urban Parent of a Teenager w/ASD

Have you ever just wanted to scream on our educational leaders and tell them that they have it all wrong?

Well, my answer to that is not if, but more like when don't I?  Riddle me this, everyone know that cities like the one I live in, Newark, are economically disadvantaged.  Definitely not a secret.  We also know that the educational system here is flawed to say the least (and we aren't even considering the special education system).  Our ASD children are not even "exposed" to many of the "therapies" that we know have been proven to be effective in their classrooms as well with their life skills (ie. ABA).  So, would someone please tell me why it makes any sense that the educational systems here in the city are allowed to not provide the "fair and appropriate" education that the law mandates that the children are entitled to, but then they are continuously ushered through elementary and high school to just be "aged out" of the system at 21 without the skill sets that they need to live productive lives.  I guess what I am simply asking is, "how is it fair that our urban special needs kids not be given the opportunity to excel with all the "supports" that their counterparts are getting in the neighboring suburban townships?  How is that right?!  Then, the real slap in the face is that their 'clock" is still running, therefore, although the system knows that these kids were cheated out of a "fair and appropriate education - by the age of 21, they are cut off and if they are "able" to go on and go to a junior college, 4-year university or get into their vocations, they have to make it the best way that they can because by that age - the state does not have to provide you with the paraprofessionals, therapies, educational tools, etc that they know the kids need to be successful!  

So, now the issue becomes what happens at this point?  I know that I am not alone when I say that it absolutely tears at my heart strings when I think of my intelligent, friendly, outgoing and able-bodied child having to work at a Burger King or attend a senior-citizen facility because there is absolutely no where else for my child to go to after that magic age of "21!"  Now, let me preface myself and say that I am absolutely okay with people with ASD working in a fast-food store, a Walmart "esque" chain store and/or attending a senior facility if these "activities" are productive for them.  But, what I want to stress is that there is a "spectrum" and with that we must remember that we have young adults that fall all across the spectrum.  Just like we realize that there is "no one size fits all" educational plan that applies to every student with ASD (thus one of the reasons for needing an IEP) , we must keep that in mind when we think about the transitional piece that closely follows the "aging out" process.  WE SHOULD HAVE MORE COHESIVENESS WITH OUR EDUCATIONAL PROGRAMS and the TRANSITIONAL PROCESS.  We cannot continue to have our kids graduate and then begin to think about "what happens next."  Why?  Simply because by that time it is just way too late.  There are far too many instances where are youngsters have officially left the educational system and then the parent realizes that they absolutely have nothing lined up for their "adult" children and now they are faced with "what happens now or who is going to watch my adult child so that I can go to work and continue to financially support this child?"  

My child is 17 now, so Praise God, I have not gotten to this point yet, but, I am hearing this same story repeat itself everyday.  This is why I know that we need to get out in front of this thing and address it before we age out another class of young people with ASD in June 2014!  This is an injustice that can be remedied if we just begin to think about the educational process differently!  So, why can't we do that?!  My prayer is that if people have not already start to think about this, I hope that this post brings it to the forefront for someone and we begin to have the conversation.  If all else fails, I know that knowledge is key and that with knowledge we are able to make better choices.   I think that we can all agree that we are not discussing something trivial, this is not like we are discussing what handbag matches with the shoes we plan on wearing next weekend, but what plans are we putting into place so that we can ensure that our "adult" children have the best quality of life that they can possibly experience.  Don't you agree that this at least warrants some real thought and a heartfelt conversation?  I mean, we are not asking for anything more than what we demand for any other child - a right to a fair and appropriate education.  A COMPLETELY fair and appropriate education.  Our kids have been cheated enough in the ABBOT districts...please don't continue to cheat them out of the tools that they need to be productive citizens!  Hey, last I checked, they are citizens of the USA just like me and you.

Liz Feld, President of Autism Speaks, welcomes me with open arms!

 I am so grateful to be in the presence of a real autism "WARRIOR!"

Media Portfolio

MEDIA

Forest Hill Charter School:

Newspaper Articles:

Center for Autism Hosts Workshops to Mark Autism Awareness Month

Autism Awareness Month Kicks off at The Center for Autism with MOM2MOM Focus Group

Mom2Mom Peer Helpline Gives Children with  Special Needs a Holiday Party to Remember

Someone who’s beenthere: Moms of special-needs children find help from a sympathetic source-othermoms

Special Gifts forSpecial Children: UMDNJ-The University Hospital and MOM2MOM Help with JFKSchool Holiday Party

MOM2MOM OutreachProgram Partners with John F. Kennedy School

Pioneering HelplinesProvide Care for the Caregivers

The power of empathy:Peer groups help veterans, police and moms of kids with special needs

Loss of FundingThreatens Autism Program

Who is Nakeishia Knox

ABOUT ME:

Nakeishia Knox is the mother of a 17-year-old son with autism.  Knox holds a Master of Public Administration, which was granted by the Rutgers (Newark) School of Public Affairs and Administration.  She currently serves as an advocate for autistic youth in urban areas. Knox works as a Site Director at the Consortium for Pre-College Education in Greater Newark at the New Jersey Institute of Technology (NJIT).   Additionally, within the last 3 years, Knox has worked as a peer counselor with the now, Rutgers University Mom2Mom Program.  With Mom2Mom, Knox’s main focus is on her hometown, Newark, where she tirelessly reaches out to the city’s moms with special needs to determine their needs and provide support.

In urban areas, specifically Knox’s hometown of Newark, it is extremely difficult to get the services we need and to educate the parents about developmental disabilities.  There are way too many families who need assistance not only getting special needs services for their children, but to get their children diagnosed in the first place with autism (or any other developmental disability possess).  Knox’s own experience with her son’s diagnosis at age 2, was nothing short of devastating.  At that time, Knox had never heard the word “autism” let alone knew that it was incurable. “The developmental pediatrician told me that my son - my first and only child - had a lifelong disability and I had no idea what that meant,” she recalls.  “When you first get the diagnosis, it’s overwhelming.  I didn’t have family members or anyone I knew personally who had gone through this.  Hence, I had to come to terms with it and push pass the grief of accepting that my son had a problem that would not just go away in time or with treatment.  Then, I had to teach myself everything there was to know about autism in order to properly advocate for my son so that he would receive all the services necessary, that would provide him with the skillsets he will need to use one day in order to experience the best quality of life as an adult with ASD.

 

“I have gone through denial, hoping early interventions would ‘cure’ his autism, and I’ve wondered from time to time ‘What went wrong?’  “I can more than relate to any parent that has a child on the spectrum that only wants what anyone would want for their children –  whether typically developing or not – we all want our children to have the opportunity to experience the best quality of life that they can possibly attain,” Knox adds. “We cannot continue to wait on ‘someone’ to make that happen for our children, but must become “the person” that will best represent them and be the voice that demands that people with ASD receive every opportunity available to them (and any opportunities that aren’t) that could enhance their life experiences.  This is the most rewardingly therapeutic practice I feel you can do to move pass the pain and not be a victim of ASD, but a victor for your loved one.  We have to continue to fight and diligently advocate for these individuals, who quite often have no voice at all.  We must support each other within and outside of our immediate communities - we are all in this together.”