Friday, November 22, 2013
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
Thursday, November 14, 2013
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...
Wednesday, November 13, 2013
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.
Tuesday, November 12, 2013
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!
Friday, November 8, 2013
Tuesday, November 5, 2013
Have you ever just wanted to scream on our educational leaders and tell them that they have it all wrong?
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.
Monday, November 4, 2013
Wednesday, October 30, 2013
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
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.”