‘A very long and lonely journey’
Cheryl with daughter Zariah who was diagnosed with ASD
I received the diagnosis of autism for my daughter, Zariah, in June 2005 right before her third birthday. After the initial shock and devastation, I knew eventually that I would have to accept it so I could help her. However, I was always such a timid and introverted person, I did not know how to go about being a voice for myself, let alone my own daughter.
I struggled with a lot of anxiety and stress coping as a single parent, and I just wasn’t sure if I had the strength to be able to cope with raising a developmentally disabled child. I was terrified. I thought, ‘I don’t know anyone else who has a child with autism. Where do I go for help? Where do I go for support or education? What do I do first?’ I felt so alone. I felt like no one understood what I was going through.
I remember asking the neurologist who diagnosed Zariah how I should go about learning about Autism Spectrum Disorder (ASD). He just directed me to his website to read more about autism. Although it was a good resource, I felt like it wasn’t enough. I searched for any and every book on autism that I could find. I searched online for support groups or parent workshops in my area of Queens that could give me some kind of direction. I kept bumping into a dead end. I felt like I was beginning this journey with no map, no compass and no support, but I knew I had the strongest guidance in the world that would take me to where I needed to go and beyond. I had hope.
I knew I had to be my daughter’s biggest advocate, because no one else would be. I found that the Internet housed many valuable websites dedicated to autism awareness, and continued from there. When I searched for support groups for parents in my area, I was discouraged to see that there weren’t any within reasonable proximity. Having to travel 15 to 50 miles would be next to impossible during a weekday. Whatever resources were out there for support, I tried them. It was always: There was no support system for this specific type of special need because no one was fully aware of the disorder yet. I was bumping into obstacle after obstacle, but I managed to still keep going.
I collaborated with my daughter’s preschool and the members of her care team, all who had constant interaction with her every day. I observed their strategies and techniques and brought the same into my home. I asked questions all the time, and I asked the therapists for recommendations on how I could help my daughter. I continuously observed the tools they used for Zariah in school and then researched them online, such as PECS (Picture Exchange System), then implemented them at home in order to remain consistent. I practiced, practiced and practiced some more what the therapists had asked me to do at home with Zariah.
I rearranged my whole life in order to accommodate her special needs. For example, I placed a PECS board with a schedule where Zariah could see what she had to do every day. I labeled rooms in the home that she frequently visited, such as the bathroom, in order to help her transition better. I made sure to do my best to attend school meetings and workshops. I made sure to stay on top of school, all the while doing my best to bring in a reasonable income by working at home and continuing my own education. I made sure to search for services through various agencies in order to help ease our lifestyle a little better, such as a home care attendant, respite, and special needs activities after school and during the summer. Each minute of gained knowledge turned to an hour. An hour turned into a day. A day turned into a week. Now, here I am almost six years after Zariah’s diagnosis. I now have a little bit more confidence in holding her hand along this journey, just because I was willing to take the risk of studying a disorder I had never heard of.
In November 2006, a little over a year after Zariah’s diagnosis, I decided to turn my unfortunate event into something positive. I formed The Queens Autism Meetup, an online forum where parents of children with autism meet online and in person in order to network with one another for moral support and resources. We also get together to share family-oriented events, such as picnics and play dates. The group is still fairly new, with 58 members so far. Our motto is: “Empowering ourselves. One parent at a time.” It is important for the autism community to come together to help one another, because the journey of autism can be a very long and lonely one.
Looking into Zariah’s eyes every day and seeing her progress, I have a strong desire to help someone else. Although there are no monetary benefits, I believe being able to help these parents through my moral support is more valuable than money. I know that these parents will mentally and spiritually carry what they gain from this group for the rest of their lives. What these parents will learn, will in turn help their children grow and mature into the best possible adults they can be.
I’ve always told my members that I don’t have all the answers. If I don’t know something, I will do my best to steer them into the direction to which they can obtain the information they may need. Overall, The Queens Autism Meetup is about all the parents who want to help their children living with autism. I always make sure to let them know that it is their group as well. It is so important for group members to share whatever resources they may have or come across, because that information may be able to help another parent.
Initially, I thought autism was my worst enemy. I was angry at it for taking normalcy away from my child. But as time went on, I realized that autism has been a very special gift. Autism has opened my eyes to things I would have never even thought of seeing through typical circumstances. Something happened to the timid and introverted person who was just a follower and seldom a leader, because now all I see in myself is someone who has a strong voice for the daughter who has limited speech. I speak Zariah’s voice every day. The Queens Autism Meetup is the pathway I created in order to help other parents do the same.
Cheryl Ocampo, a mother of three, is the executive director of Queens County Parents Autism Coalition, Inc., the new name of the TQAM after it was incorporated as a non-profit organization in 2008. Zariah is her youngest. This essay was originally published in The Autism Perspective Magazine.
This is one of the more honest accounts from a mom that I’ve read in a long time. I have the honor of knowing Cheryl and her ability to describe the journey of an “Autism Warrior” still amazes me. I hope more people in our community will read about autism here and seek information.
Cheryl is such a strong advocate not only for her daughter, but for many other children with autism. I met her by conducting a Medicaid workshop for one of her support meeting. I have been working for many years with parents that have children with developmental disabilities and I never came across someone so motivate to make a difference. She is a great mother with a wonderful heart and very strong. I hope more parents and people in the community support this group and get as much information as possible about Autism.
Cheryl is an outstanding parent ,as well as an Advocate for Children living with Autism. I met her three years ago when my son was just diagnosed. She has taken my hand graciously ,and has guided me through this journey . I hope more parents see her support group as resourceful as I have.
Thank you, ladies for your kind sentiments. It’s been truly a pleasure being there for all the families.