Parents can make a difference in your community and Autism!!
Over the past few years, I have learned about special needs and more specifically the autism spectrum all because of my youngest son, Alex now nine years old. I am also a single mom to twins, Nicholas and Stephanie now 22 who did not have special needs, other than typical challenges, which we all face. Alexander was diagnosed with Aspergers Syndrome by a developmental pediatrician in 2000, though I had done the research on my own prior to know his diagnosis. I began to acquire knowledge about the PDD spectrum, through research on the web and networking with other parents which therapies were being utilized and effective along with reading many books. I wasn’t willing to accept the status quo the school district offered and knew that I had to do more.
Not only did I want to learn as much as I could about Aspergers Syndrome and how it affected my son specifically through the many outside evaluations I had acquired but I also needed to know what my son’s rights were under IDEA (Federal law) and NYS law. I began a quest to seek out as much as information as I could through training, and workshops, along with having knowledgeable and experienced advocates working with me as I learned the laws.
Once I began to apply the information I had attained, which is an ongoing process, I was able to secure the needed supports and services in my son’s school. Remember, parents are members of the committee too! Even though there were some “bumps” and challenges in the road, we managed to get through the system without going to court (Mediation or Due Process) but did have to engage the NYS Quality Assurance Division when there were issues of non-compliance with the IEP. In my case, the NYS Quality Assurance Division did an excellent job looking into the issues I had complaints about and found them to be true within the 60 day time frame. The school districts had to make changes for my son and were ordered to do so by NYS – at no cost to me (except sending copies of documents, writing letters and a few phone calls). I was pleased that the “system” had worked in this situation.
As I felt more secure with the services my son was receiving (Speech five times per week; OT three times per week; Social Skills training weekly; a full time aide; consultant teacher services; along with Parent/Teacher training and other services), I was more confident that my son would receive FAPE (Free Appropriate Public Education).
Then I wanted to help others who had struggled like me. There are just too many. I began an agency called Power Advocates to help promote awareness of Special Education laws for parents – to empower and help them be advocates for their child voluntarily.
As time went on, I saw an overwhelming need for Autism awareness and education – as so many of the professionals I worked with, just didn’t understand the PDD spectrum. Last year I facilitated a two-day conference through Future Horizons, a leader in autism education outreach in the country and the world. The conference called “Autism/Aspergers 2001” was held last June at the Buffalo Convention Center and attracted 1000 participants, including professionals and parents. We had well known speakers such as Dr. Temple Grandin, Eustacia Cutler (Temple’s mother), Dr. Kathleen Quill, Lynn Hamilton, Carol Kranowitz and other specialists in the field. I was thrilled that so many attended and became more informed about autism. What I ultimately learned is that all the participants wanted more – especially parents.
I had become good friends with another parent in LI, through an autism listserve in NY. He was someone I really admired and wanted to emulate. His name is Marty Schwartzman. Marty just continued to knock down doors in so many areas that others didn’t and I wanted to be like that. He had been telling me about the NAAR Walk for Autism which he co-chaired in LI and the magnitude of the lives the walk touched – not only to raise the needed funds for autism research (autism research receives only five percent of funding even though it is the third leading disability in the nation and currently affects up to 1,000,000) and to make a difference in so many families affected by autism. I wanted to make a difference in my community – Buffalo and Western New York too.
The following year, Rochester had a walk planned and I was involved on the Planning Committee, though living in Buffalo restricted the amount of time I was able to commit and ultimately knowing the real demands of organizing a walk. When I attended the walk in Rochester in September 2001, I knew I wanted to do the same in Buffalo. There was an excitement and a unity that abounded all around me!
Last October I made the decision to Chair a walk for Autism in Buffalo. There were three people on the committee when we first met in December and even though it seemed so unattainable to accomplish then, I kept forging ahead to the goal to make the walk a success and reached out to many others. There were times that I questioned if it right for me to do this, especially when there was little support, from businesses and the community but there were periodic signs for me from God to keep going – don’t stop.
Finally in March, more people became involved and as the word spread about the walk, our three-member committee became 15. We had support from NAAR’s national office as well as other Co-chairs from other previous walks, which was paramount for us to do what needed to get done. We needed each other.
The monthly committee meetings were at times, not well attended due to family issues and other challenges that life brings, but the hearts of all those involved remained solidly committed to doing what had to be done for the walkâ€¦ raising money.
Last weekend, our inaugural walk was held on Sunday, Sept. 29 in Buffalo at Delaware Park. We had many obstacles to get through, but we managed, with God’s grace to not only rise above these but triumphed. We had approximately 1,000 people Pre-registered for our walk. We expected to have approximately 2000 people attend but we were so elated as over 3,300 people came to the walk, with their families, friends, co-workers and raised $93,000 for autism research!! The greatest part of the day was seeing so many people come together – from young children with autism to adults and the many agencies that worked together with us as a collaborative effort to make a difference. The inaugural walk was dedicated to a friend and mentor, Angela Lagenor, who passed away last March. She was the founder and director of a school for Autistic children and adults, Autistic Services, Inc. and a pioneer. She paved the way for us to walk for Autism.
I am blessed to have been a part of this one special day and know that it is the beginning of many more to come. I am a parent who loves my son, and my children, like so many other parents. If I can do it, so you can you. Allow the challenges that you have gone through to be transparent enough to be a voice for others in needâ€¦ and you will make changes. The National Alliance for Autism Research is the only non-profit organization that is providing funds for biomedical research for autism, through walks in many cities like Buffalo. Karen and Eric London, founders of NAAR, are also parents of a son with autism who have vision, and passion to make a difference for people with autism. Share their vision along with me, and think about starting your own walk in your own town too. Contact NAAR at 1-888-777-NAAR or online at http://www.naar.org
Who is your inspiration? Mine is my son Alexander and now many others.
Monica Moshenko, Co-Chair
Buffalo Walk F.A.R. for NAAR