Happy Mother's Day!!!

Things have been really busy these past few weeks for all of us but we felt it’s time to write again and what better topic than Mother’s Day. Nick and I decided to share sort of an interactive blog between us this week and we hope you take some time to read both entries. 

             Mother’s Day is approaching and for many of us it is a time to spend the day with Mom; stepping back from our busy lives to show Mom how much we love her and appreciate all she does for us. Sadly, some don’t have that opportunity but are able to reflect; recalling childhood memories and understanding what unconditional love really means.

            This is obviously no different for those on the Spectrum; in fact I would argue that for Nick and Lou, every day is Mother’s Day. Marian can do no wrong in Louis’ eyes. And Nick was able to express himself quite clearly in an essay he wrote during the process to get into the College Experience Program. We were notified that during one of the interviews in Albany, Marian and I would meet with staff to discuss Nick’s qualifications for the program and Nick would be taken to another room to write an essay. Topics were mentioned and one of them was “Who is the most influential person in your life?”

            Having some time before our trip to Albany,  I gently  “reminded” Nick that it was me who took him to his first baseball and first football game. It was me who bought him his first Raiders football jersey, introduced him to the Beatles, took him to see “1964 The Tribute”  Beatles band several times and to make it complete, I took him to see Ringo Starr at Jones Beach. I went on and on, lobbying for top billing but Nick just nodded and said okay. What was going on here? The choice was clear!

            And then it hit me. As he put his thoughts together on a few topics, he said he was going to write about his mom if he got that subject. Of course! You can’t compete with Mom, especially Marian. She has devoted her entire life to making sure her boys are taken care of and are given every opportunity they deserve. In addition, she has sacrificed a lot to ensure they will be taken care of in the future. Marian and I, with the help of my daughter Emily and son Nick, will be there to see it through. The boys will have a home as long as they live, surrounded by people who care and love them. They will never be alone on a holiday; in fact, they will celebrate with loved ones. Furthermore, by starting OneStep4Autism, Inc., we hope to provide that same future for other adults on the spectrum. Yes, I’m sure Marian will be like her mother Elizabeth, who is still working at 76 years of age. I guess retirement is not an option or a need. Working at something you love isn’t work at all. It is your life! Even though Marian and I have gotten a late start in life, we have lots to do and I couldn’t be more fortunate to be doing it with an incredible wife and mother.          

            When we returned to Albany for our interview, Nick was fortunate enough to get the “influential person” topic. He wrote his essay on the spot, recalling his thoughts, and he shined. 

Please go to Nick Z's Blog  to read his essay…..….…..

A Champion's Story

            This is a story about a champion. Yes, the Olympics are over and there were no actual medals won by our hero. This champion’s story is about desire, inspiration, and acceptance. The champion’s name is Nick and he is a big, strapping 18 year old, “gentle giant” full of compassion and a heart of gold. Part of a blended family, he has many relatives, some closer than others and has an extremely dedicated and caring circle of support. It is this circle that has believed in, encouraged, challenged, taught, comforted and inspired Nick to get to this point.

            As his step dad, I met Nick when he was 7 years old. He had been diagnosed with PDD-NOS over 4 years earlier. My wife insists it was the result of his vaccinations or at the very least they played a major role in his diagnosis. After receiving his vaccinations, he ran a very high fever and basically shut down, becoming nonverbal for years. In addition, she dealt with the horrific advice of so-called experts; having to hear the words “no one would blame you if you put him away”.                   

            What makes those words even more tragic is how Nick’s life unfolded as our blended family came together.  Nick’s 14 year old step-sister, 11 year old step-brother and 4 year old brother (also on the spectrum) became his closest friends. The six of us did everything together. We went to movies, high school football games, school concerts and plays, and vacations. Soon, Nick began to show interest in outside activities and hobbies.

            Before he even hit the age of 12, he had taken drum lessons, played youth soccer and youth basketball and attended summer programs with swimming and other recreational activities. A few years later he won gold medals in the Special Olympics, joined a bowling league, ran track in middle school and played percussion in the school concert bands, even competing in the All-State competition. He became an avid football fan and has followed his brother’s football career from youth leagues through high school and now onto coaching. Today he is an accomplished drummer, capable of playing in a rock and roll cover band if he chooses. He also loves to play his piano and even sings as well (see our You Tube page). Our summers consist of weekly vacations at a timeshare and Nick loves the outdoor pool and other activities, even trying horseback riding last year.    

            Nick, seeing his sister and brother graduate high school and go onto college became interested in learning to drive and yes, going to college. Driving was a very serious issue and the entire family talked about it often. We decided that if he wanted to drive, he would have to earn the privilege himself. His mom brought him to the DMV, told him to go in, get the book and start studying for his permit test. Nick read that book for almost 3 years. As he became more confident, I showed him how he could get on-line practice tests and he began to take them. He did well at times but was inconsistent. When he turned 18, he decided he was ready. So we took him to the DMV and he took the permit test. He ended up taking it 4 times but he passed, by himself! He got his permit. And yes, you guessed it. Since basically no one would get in the car with him, I volunteered for driving duty first. We went to parking lots after dinner for months. And guess what? Nick now drives locally in Poughkeepsie and he’s doing well!

            As the driving began, Nick also insisted he wanted to go to college. It seems trips to my daughter’s and son’s school and especially my son’s off–campus apartment planted a seed. We tried to explain how much work is involved in going to college, but Nick said he could do this. It was then I recalled the numerous I.E.P. meetings throughout the years and how we would watch people’s eyes roll, hear the snickers, and see the heads looking down when my wife mentioned college for Nick. I have to say; at times we almost bought into their negativity and gave in to how they viewed Nick’s future. But his mom would have none of it. She would do whatever it took if this is what her son wanted. After some research we found a two-year program called the College Experience @ the College of St. Rose in Albany which incorporates life skills and college classes to help students learn, train for a job and transition to work and independent living. Living Resources is the agency administering the program. This was Nick’s goal. Living off-campus in a house with other students and going to classes. So Mom did all the leg work and hours of administrative paperwork. After a couple of trips to Albany, there he was, ready to interview for a position in the program. Nick had to write an essay on why he wanted to go to college and fill out the application himself. He had an overnight stay, shadowing another student for a full day to see if this really was for him. Of course, he loved it, confirming what we already knew. This was a great opportunity for him. When he went up to interview with the staff, he had to write an essay on who inspires him the most. Nick chose to write about his mother, saying his mom told him if he works hard he can do anything he wants and also talked about how his mom went back to school and became a nurse. Nick climbed each step in the process and finally had to meet with the President of the college for the final interview. This would determine his status. Again, we drove to Albany and he completed his last task. Dressed in a shirt and tie, I couldn’t help but think back to the little boy I met at 7, who seemed totally content to sit for hours watching Barney the Dinosaur videos. And on Monday, February 24, 2014 I got a call from the agency saying Nick was accepted into the program. I was told that he did it himself; that he explained that he really wanted this and that they were so excited to have him coming in as a freshman. I went over to Nick and told him I had some news. He smiled really wide and said, “I got in!” Yes, he knew and it was then I realized how much he wanted it. When his mom got home he told her and after the screaming and the tears, reality set in. Nick is leaving for college in the summer. Saying those words is unbelievable. I asked Nick where he’ll be in 5 years. He said working, driving a new Honda, living in an apartment with a girlfriend. All I could think was why not, Nick, why not!

            Those of you familiar with our family know OneStep4Autism and how we are working towards opening our own form of a group residence. Nick has made it clear that he does not intend to live with us in our house. He plans on living on his own. All I can say is good for you, Nick. It is bittersweet to let him go out on his own and build a new life for himself in a new town, but as his mom says, we can’t stand in his way; he needs to spread his wings. 

            This sounds like the end of the story but it is really just the beginning. The beginning of a two year story that’s ending hasn’t been written. We don’t know where Nick will be in two years when he completes the program. The agency believes as Nick has told us that he will be living in the capital region of New York moving on to a job and apartment. Either way, Nick saw an opportunity and went for it. He never has to say “I should have” as so many of us have done in our lives. Nick is my hero. He is our champion. He has won the gold, silver and bronze medals combined as far as we’re concerned. While we celebrate Nick and are so proud to share his story, there are other stories to be heard. We want to hear about your champions; about the inspirational people out there achieving what others said they could not. Please, forward your stories to us at OneStep4Autism

© Nick Malcuit 2/27/14

Time for Autism Speaks to Listen?

            When Suzanne Wright’s op-ed piece “A Call for Action” was published November 11, 2013, you can say it accomplished that goal. The backlash against Ms. Wright has been swift and hard. In addition, there is an organized effort to boycott Autism Speaks. Boycott Autism Speaks Many friends and family have joined the cause and asked us where we stand on the matter. Well, I can say that we’ve read a lot of material, been on numerous websites and debated the issue. My wife Marian and I have begun our own version of the ESPN show “First Take” (Embrace Debate). Believe me, I am not making light of this issue at all as the debate has been intense and emotional. Furthermore, I have implored Marian to blog her views and post them for all to see. After all, she is not only an autism advocate; she is the mother of two teenagers who happen to be on opposite ends of the autism spectrum. While we agree on many issues, we don’t agree on all of them as they relate to an all-out boycott.

            Autism Speaks was founded in 2005 and in its first year raised over $40 million dollars in donations and fundraising (AutismSpeaks.com). It also states they received a $25 million dollar donation from a single donor to launch their organization. It is clear the Wrights, as a high profile couple with plenty of financial backing could make a real difference and help families. However, their mission seems to focus more on science and research, looking for causes, prevention and a possible cure rather than direct family services. That being said, the one issue that really bothers me is that the word advocacy is missing from their mission statement yet that is what they often refer to themselves as; a leading autism advocacy organization (AutismSpeaks.com).

            Another major problem with their mission statement is that they say “Autism Speaks aims to bring the autism community together as one strong voice” (AutismSpeaks.com). Judging from what I’ve seen recently, they have not only failed to bring the community together, they’ve succeeded in polarizing it. They’ve fractured a community and now have people taking sides for or against arguably the most notable autism organization in the world. Looking deeper at their mission, particularly their science and research accomplishments (which are annually triumphed on their website), couldn’t one playing devil’s advocate ask the question; if so-called strides are being made year after year, how come the rate of children being diagnosed is increasing? I can’t help it but I am cynical at times, a very-cautious optimist so to speak. What context are these successes being measured?

            I believe Jon Elder Robison, who resigned his position at Autism Speaks soon after Ms. Wright’s article, says it best. “Many autistic people are aware of this dichotomy.  Some of us feel “totally disabled” and others feel “totally gifted.”  Most of us – I’d venture to say – feel both ways, at different times, depending on what we’re doing at that particular moment. The point here is that there are many ways autistic people can choose to live their (our) lives and all are valid and deserving of respect. Some people want a little help, while others face major challenges"(Robison, 2013). His complete blog is a must-read at the following link http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html and I urge everyone to do so.

            When I read Ms. Wright’s op-ed piece I was immediately drawn to the negativity of it. Her choice of words was calculated and deliberate, designed to evoke a certain mood and emotion. Missing, gravely ill, and forgotten is how she describes autistic children. Despair, fear, and not living but existing becomes synonymous with parenting autistic children. She recounts various scenarios and after each one she adds in bold letters This is autism (Wright, 2013).  And it goes on and on. For example, lines like “on bad days, they are depleted. Mentally.  Physically.  And especially emotionally…. This is autism (Wright, 2013). Ok Ms. Wright, we get it okay? You’ve painted the gloom and doom picture.

            As a step-parent of two teenage boys on both ends of the spectrum, I’ve been part of the meltdowns, difficult behaviors, and yes extremely rough times. However something my wife told me has resonated and puts those times into focus. She said that she read it somewhere and the saying is “my son is not giving me a hard time; he is having a hard time”.      

            My response to Ms. Wright is to use her very own format and describe how wonderful it is to love someone with autism. Right down to the point where you want to spend the rest of your life being a part of their life, experiencing new things with them and in my case, planning a new career working with that very community who feels the same way. This is autism.

-Watching my son play the drums along with a Beatles CD and posting it on You Tube to share. This is autism.

-Going to Special Olympics and seeing the competition, excitement, joy and overall emotion of the day as these athletes go way outside their comfort zone. This is autism.

- Reading a Facebook post from my cousin Roseann in California and sharing her joy as she celebrates her son calling and inviting one of his friends over after school on his own. This is autism.

-Playing the guitar and watching an entire group of students on stage, proudly singing songs for their Thanksgiving show. This is autism.

-Knowing how much your child loves trains, so you take the Metro-North Rail Road into Grand Central Station and look at the trains all day, never going out of the station into New York City. This is autism.

-Sitting in the stands at a high school football game with my two sons and daughter cheering the team that my oldest son coaches for. This is autism.

-Going to Albany to start the process with an agency for your son to attend a college-experience program after high school because he wants to go to college. This is autism.

-Being in Disneyworld with the entire family as the 6 of us experience the vacation of a lifetime and make memories that no one could have planned. This is autism.

            I hope I’ve been able to make my point and show how misguided I believe Ms. Wright is in her views. Spreading fear and negativity is not the answer. There’s plenty of that to go around. What I would like to tell Ms. Wright is that we need increased awareness and understanding, especially from Autism Speaks. A spectrum, according to Dictionary.com (2013), is a broad range of varied but related ideas or objects. And as asserted by John Elder Robison, (2013), “As a progressive society I argue that it is our duty to develop ways to meet the very diverse range of needs our community has”. It has become clear that in fact, Autism Speaks does not speak for everyone. Would it be in the best interest of an organization that can still do plenty of good for those in need to ask Ms. Wright for her resignation from the Board? I believe so. That may be the first step towards moving forward and evolving as an organization. Uniting the autism community will take time and a commitment towards inclusion. Autism Speaks; it’s now time for you to listen!

                 

References

2005 Highlights, Raising Public Awareness,(n.d.) retrieved from http://www.autismspeaks.org/about-us/annual-reports/2005-highlights

About Us, Autism Speaks History (n.d.) retrieved from http://www.autismspeaks.org/about-us

Mission, Autism Speaks (n.d.) retrieved from http://www.autismspeaks.org/about-us/mission

Robison, J. (2013, November 13). I resign my roles at autism speaks. Retrieved from http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

Spectrum, (2014), definition retrieved from http://dictionary.reference.com/browse/spectrum 

Wright, S. (2013, November 11). Autism speaks to Washington: A call for action. Retrieved from http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

Next Steps...

January 14, 2014... Here it is January 14, 2014 and this is my first written piece of the year. As the saying goes we’ve been “getting our house in order”and working behind the scenes on the administrative level. We ended the year in an optimistic and encouraging way and this year is already bringing some changes for our family. The exciting news we can share is that we’ve begun the process to incorporate OneStep4Autism and apply for 501c3 status. Our journey began with baby steps as a small “create-your-own” website and a desire to help families seeking support and now our bags are packed, we’re loading up the van and hitting the road hard. And we’re not looking back!

Our vision is getting clearer; coming into focus. It’s easy to be inspired when you are surrounded by extremely supportive people; a community who is committed to speak for those who have no voice and to help others find their voice and be heard. This is the passion that drives us.

In the coming weeks we will talk about our mission and our programs as well as address some important topics such as the boycott of Autism Speaks, insurance reform and autism treatments as well as other issues affecting all of us.

Many heartfelt thanks to those family members and friends and all the wonderful people who have both encouraged and supported us. Furthermore, we thank the people who have given us the opportunity to get our message out and our new community of friends that social media has enabled us to meet, interact with and learn from. We are very fortunate to have you all in our corner.