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
