I have known Ed Nitkewicz for over 30 years. We started out as freshmen at Wagner College in the fall of 1982 - dorm neighbors actually. To see our band of misfits storming the corridors of Harbor View Hall was to see chaos run amuck. It's a wonder that we made it through the year, and actually, not everybody did.
Now, we work together on the Alumni Association Board of Directors at Wagner. Through this work, and several past experiences, I have come to learn more of Ed's life, and especially of the hard work he has done as an advocate for autism.
His writings have always impressed me and made me think because of his ability to cut to the core of an issue. As I told him last weekend after reading this piece, the core is not always a comfortable place to be, but is necessary when to are trying to make a point. This post can also be found on the aweinautism.org website. But, while deciding to invite guest bloggers to share their views on this site, I knew that Ed would be one of the first people I would invite.
By Edward J. Nitkewicz
Recently, I had an opportunity to spend my annual summer
vacation with my wife’s family in Cape May New Jersey. It was, for different
reasons, the most difficult week of my life. My 14 year old son suffers from autism.
Many in the community rail against using the phrase “suffers from.” I however
militantly and liberally employ it when my mood dictates. Though I try, I
cannot always embrace my son’s disability cheerily with the earthy Lola Granola
attitude that his disabilities make him so unique that we are the luckiest
family on the planet. His inability to easily express his feelings, to
socialize with any other children or to tell me when he feels disappointment,
sadness or sheer joy is something he and his parents endure and “suffer.”
Attorney Ed Nitkewicz of Long Island, NY is a school board member in Huntington (NY) , as well as an advocate for autism issues |
I have spent the entirety of the past 14 years developing a
different perspective on what “fatherhood” could be for me. It is certainly not
what I planned on or prepared for. As I have offered many in my circumstances,
“people plan and God laughs.” Sometimes however, I don’t feel like I am in on
his joke. Other times, I just don’t have the emotional strength or desire to
celebrate my “unique parenthood.” Sometimes, I just feel bad that my son
suffers the significant limitations that come with having autism.
Over the past week, I have visited (albeit as a surrogate) the
parenthood I always thought I would have. At the shore house in Cape May, New
Jersey, I am the “awesomist uncle in the universe.” That does not represent a
baseless boast. It is the title on the portrait of me drawn by one of my niece
in laws. It is the term used when I take any of three teams rotating throughout
the week for the daily $50 “candy run.” It is the battle cry yelled when the
“pool fight” to drown and defeat the evil (yet still awesome) Uncle Ed ensues
each day at 2PM after the last hot dog is consumed.
Watching seven children burying each other up to their heads in
the white sand is unforgettable. Having them teach me how to boogie board
“tasty waves” (as Jeff Spicoli once taught us) is priceless. And seeing them
narrowly avoid a sugar coma from literally eating a grocery bag of candy every
night is hilarious. It is heartbreaking that my son is not right in the middle
of the daily blizzard of activity.
“It is acceptable to feel bad for our child, for our family, and
for ourselves. The key is not letting it consume and define you.”
It is watching Edward’s cousins grow from babies to tweeners,
witnessing them develop personalities and the accompanying “attitudes”, and
seeing them move swiftly towards adulthood in a “typical” way, that cause me to
experience a complex combination of joy, admiration, envy and pain.
Professionals often push parents of impaired children to celebrate their unique
qualities. I get that. However, grief requires that we allow for those moments
in our life when we just feel sad for what our children aren’t. It is
acceptable to feel bad for our child, for our family, and for ourselves. The
key is not letting it consume and define you. This week, as I spent a week in a
beach house in New Jersey with seven children related to me only through
marriage, I was at once as happy and as sad as I have been in a very long time.
I visualized what the world would look like if my son, the first and thus
oldest cousin, were “typical.”
I am grateful that Edward has so many terrific cousins on both
sides of his family. But as I enjoy their company, I can’t help but wonder in
my heart which one among them will take the lead in looking out for my son when
I am gone. After this week, I am confident the answer is “all of them.” And, I
am eternally grateful to them for allowing me to visit the parenthood I once
planned to have.