Encouragement Speaker Derrick Hayes gives an AUTISM Interview by asking six questions through each letter in the word AUTISM to give readers an insightful perspective from parents, experts, entrepreneurs, and other leaders in the field.
Today’s AUTISM Interview is with Nicole Sugrue. She is the co-founder of two nonprofits in Port Washington, New York that support individuals with autism in leading full, productive, and meaningful lives. Spectrum Designs Foundation (www.spectrumdesigns.org) employs people with autism in their customized apparel and promotional product company while offering vocational training in this and their other community-based businesses: Spectrum Suds and Spectrum Bakes.
She is also the co-founder and Executive Director for the Nicholas Center, a nonprofit organization providing support services through innovative community integration programs and pre-vocational services. She is the grants administrator for both organizations and has secured over one million dollars of grant funding for both entities over the past eight years to support their missions. Nicole completed her coursework in Applied Behavior Analysis and her Advanced Certificate in Educating Individuals with Autism through Penn State University.
A is for Awareness
When and how did you first become aware something was different?
Adem was my second child, and I had the privilege of being a stay at home mom at the ripe age of 24. He was such a good baby, willingly accompanying his three-year-old sister and me on our daily adventures to the market, parks, libraries, and playgroups. As he developed, he’d mimic her and enjoyed the front row seats from his Excersaucer as she pranced around him singing and rehearsing dance routines. He would babble and bounce to the rhythm in unison with her. He was in awe of her freedom. Adem would say single words and wave “bye-bye” to his dad by the time he was 12 months. When my son was 22 months old he went in for a scheduled visit to the pediatrician where he received several immunizations including the DTaP.
Within 48 hours Adem became very irritated, cranky, and seemingly uncomfortable while coughing aggressively. He was inconsolable and was up all night with a runny nose and a hard time breathing, wheezing and crying. The next day he was treated for whooping cough with some albuterol. This seemed to calm some of his symptoms and the next day he appeared okay enough to bring him to his sister’s dance class. As he sat in his stroller in the very tiny waiting room, his head kicked back, and he began having a seizure.
I thought he was choking on the cheese balls he was snacking on. I calmly, though in shock, removed him from the stroller as everyone around us was screaming and consoling their scared children who were bearing witness. I cradled him in my arms as he seized uncontrollably, staring at him saying “What’s wrong with my baby?” and “Can you breathe, baby?” I thought my son was dying in my arms. I looked at the receptionist and told her to call 911. All the other people were speaking to me, but I couldn’t hear or see them; all I could do was look at his angelic face as he eventually fell limp and calm again, his eyes shut.
The whole episode lasted a minute, though it felt like hours. Minutes later, the EMTs arrived and swiftly placed him on the receptionist desk. He opened his eyes and wildly tried to break free from their interventions. I was happy to see he was moving around and had strength. They rushed him to the local hospital as I called my husband to meet us there.
By the time we were in the emergency room he was already seemingly back to normal, though agitated from all the prodding. We left with a “He’ll be fine. It was a febrile seizure; his temperature must have spiked very quickly causing him to seize” from the doctors. But after that day, he became very lethargic and a different child. He stopped speaking or responding to our bids for his attention. I remember weeks later my husband turning to me saying “Why doesn’t he say bye-bye to me anymore?” I just thought he was still shaken up from what happened to him, but he was right, Adem was becoming distant. He didn’t like being cuddled, always wriggling out of my embrace. It made me sad and slightly concerned, but he seemed to be content and comfortable.
Adem continued to achieve other milestones, but he didn’t seek approval or recognition for any of them. I remember him carefully taking Legos and piling them in a row by size and color. I thought, “Wow, how incredibly precise, he’s a genius, he’s going to be an architect.” And though I cheered him on and praised him for his work of art, he didn’t even look back at me.
He simply disassembled the structure. Put each block back into the purple container, and then once he had the last piece in his hand, he tilted his head, in an odd way, and watched it slowly drop back into the bucket. He put the top on and just waddled away as if no one else was in the room with him.
Something happened to him. To this day I don’t know what really happened, but after many painstaking moments reading all the literature on what it could’ve been, I determined he was brain injured. He experienced all of the possible side effects concerning the DTaP, particularly the pertussis portion, except for death.
But the son I gave birth to was now a new child. At 24 months Adem was diagnosed with PDD-NOS, the developmental pediatrician recommended 20 hours of Applied Behavior Analysis (ABA) and 10 hours of intensive speech therapy. She then handed me a brochure for the Autism Society of America. I politely handed it back to her and said “You have me the wrong information, you said he had PDD-NOS” and she said “Yes, that’s a form of autism.” I went straight to the library (the world wasn’t equipped with Internet information at that time) and checked every book out on PDD-NOS, intentionally not picking any that said autism specifically.
It was just too frightening. Eventually, I secured services through Early Intervention and had a home program which consisted of 40 hours of ABA and Speech Therapy. This went on for five years. And no, he never had another febrile seizure. So clearly the seizure was prompted by something much more profound. But whatever it was, all of our lives would now be different for a very long time.
U is for Unique
How has this experience been unique for you and your child?
My son is 20 now, and he is still the happy and gentle boy he’s always been. But he will require lifelong support and supervision. He is very bright, has an incredible memory, but though he can read, do math, and has hundreds of words, he doesn’t engage in social conversations. I’d call them more, “exchanges,” primarily to get his needs and wants met. He’ll speak in three to four-word utterances and has a unique and unusual melody and intonation when he speaks.
Adem is very resourceful and independent; he even rides a bike and can troubleshoot and resolve computer issues. He requires supervision primarily to keep him safe from the ugliness that exists in the world. Adem has a heightened sensitivity to judgmental people who may be uncomfortable in his presence and becomes uneasy when he senses stress and conflict from others around him.
Adem is a pacifist and lives life on his simple terms, always enjoying the moment and seeking instantaneous self-gratification and the satisfaction of others. I’d say he’s taught me the definition of unique. Oddly enough, he lives his life the way all the self-help and empowerment books tell us all to live. But in doing so, HE is seen as being different or unique.
Life with Adem has been an experience in itself. It is certainly unique to what I had originally dreamt my life would be like, and perhaps even better than I could’ve ever imagined it. Autism has allowed me to have a meaningful impact on the lives of many people I otherwise would’ve never known. Through the work of my organizations, I am gifted with the opportunity to be surrounded by hundreds of individuals with autism and their families every day. It’s been incredible.
Every day is unique and uplifting. I was very fortunate to have taken a difficult and unplanned life circumstance and turned it into the life I now have. That to me is very special and unique.
T is for Tools
What tools are there now that were not there at the beginning that could help other parents?
The Internet and the ongoing research which is easily accessible to everyone everywhere must be such a godsend to parents of the newly diagnosed. Unfortunately, it could lead you down some unfruitful, costly, and frustrating paths. It is best to surround yourself with people who can support you through this journey, wherever you might be; positive people with influences that inspire, empower, and motivate you; people and places that welcome you and your child as you are, offering compassion, wisdom, and a sense of community.
But these” tools” are only collected along the way by talking to other families who are happy with their services and making friendships with others in for the long haul with you. You have to get out there and meet with like-minded, kind, and genuine people who have access to information and resources to help life with autism more comfortable not only for your child but for your other children, yourself and your entire family unit.
I is for Inspire
As a parent, when you look at your child or children what inspires you?
I am in awe and inspired by his simplicity. He doesn’t want what everyone else wants. He lives for moment and finds joy in the smallest things. He serves as my daily reminder to be humble, kind, and not to sweat the small stuff.
S is for Support
Are there things you struggle or have struggled with and what types of support do you still need?
I am a single mom of three. Unfortunately, their dad hasn’t been involved in their day to day life, so running a single-family home and having to be a supportive parent in all their life endeavors has always been a challenge. I believe there are many resources families can take advantage of, at least here in New York State. It’s a matter of having it all in one place, with reliable references and a “how-to” step by step instruction manual.
I’ve seen so many parents being given poor advice and guidance through their schools (though some are better than others) in preparing for transition to adult life. Legal fees are too expensive, advocacy groups are over inundated. There is not a one-stop place. People often have to figure it out on their own. Also, having scholarship/grant funds for families impacted with autism to use for other life matters such as legal fees, mortgages, health insurance, college tuition, respite vacations with support for the family member with autism, would be great as well. Autism impacts everything in the family unit.
M is for Manage
What keys to success can you leave with parents so they can better manage their day to day efforts?
Surround yourself with people who are not only positive about this shared experience but are knowledgeable. This is critical in making plans for the future when you are no longer there. Don’t buy into anything that seems it will be a quick fix. I’m not saying not to explore those options, goodness knows I did, but the most meaningful things I have had access to come from being involved and learning as much as I could about the services my son was entitled to.
These help make life so much easier when you have so many other things to worry about. Autism is costly. So, secure as many services as you can, as early on as you can. Don’t take one person’s opinion or guidance—get out there and speak to everyone and anyone you can get your hands on to learn more about resources and support services. It will make managing your life softer and kinder. Share what you learn, in any way possible. We are all in this together.
This article was featured in Issue 94 – Daily Strategies Families Need