Care that counts: Raising autism awareness
At Kimco, many of us are passionate about the charitable causes we support. In fact, our Community Connection program provides employees with the opportunity to take off two fully paid workdays each year to get out and volunteer for causes collectively chosen by their Kimco office, or for local non-profit organizations of their choosing. Beyond that, many of us are proud to raise awareness for various organizations and causes, day in and day out.
My cause is autism awareness. My family became involved with spreading autism awareness when my son, Tommy, was diagnosed with autism at 18 months old. I did not personally know anyone with autism before adopting Tommy 17 years ago; but since then, I’ve learned a great deal about autism and the autism community.
I am not an expert on autism; I am only an expert on my son. However, I can tell you that autism and autism spectrum disorder are general terms for a group of complex disorders in brain development, and these disorders are characterized in varying degrees. Children with autism usually seen on television and news stories, those like “Rain Man,” who are piano aficionados or can throw a basketball from half court and sink it, are not the norm. Many children have severe autism like my son Tommy, who is nonverbal, has repetitive behaviors, difficulties in motor coordination, and physical health issues such as sleep difficulties, gastrointestinal disturbances, and seizures.
Our families would like our children with autism to be treated as you would treat your own child — with love, kindness, and patience. It’s important to educate: with children, I found the best approach is to talk to them. I explain Tommy cannot speak and that it’s OK to talk to him — he will not respond with his voice, but he can talk with his augmented device (see photo). If Tommy does something they don’t understand, such as self-stimulatory behavior (repetitive hand movements, rocking, vocal noises, etc.), I explain it makes Tommy feel better just like it makes them feel better to get a hug from mom when they’re hurt. I’ve been out with Tommy many times when people make comments about his behavior and/or stare. Parents and grandparents can sometimes be tougher than kids. They sometimes give a look that says I should be able to “control” my child. Unfortunately, as hard as we try, this is sometimes impossible. Depending on the situation, I might apologize and explain he has autism.
A common misconception is that children with autism are not loving and affectionate. I have met hundreds of children and adults with autism and the majority can be silly, funny, affectionate, and loving. My son Tommy is all of these. He doesn’t speak, but when I ask him, “Who loves you?” he responds “Ma,” in a voice only understood by me, and that’s all I need.
How do I advocate? Participating in autism walk-a-thons, attending and donating to school fundraisers, and taking my son into the community as much as possible are some of the ways I raise awareness for autism. However, my true passion is first, to advocate for those working with the autism community and second, to advocate for those with autism that are over 21. Both face many challenges. Many working within the autism community earn minimum wage and work with a population that can be physically and emotionally draining, so it’s no surprise that there’s tremendous turnover among those workers. When I’m in the community and run into a group with disabilities, I always walk up to the teacher or aides and tell them “thank you.” As for the over-21 autistic population, where will they live when their parents are no longer living? Some need group homes now because of challenging behaviors, but there are no group homes available.
Next April, I’d like to bring a group of Kimco associates together for Autism Day, and volunteer at one of our local Long Island schools that work with children with autism. The teachers, many of them aides who do not have the same salaries or benefits as public school teachers and aides, deserve a break. They truly understand and love our children. These teachers and aides are my heroes, along with my Tommy.
Educating those not involved with the autism community is the first step to awareness. For more information about autism and how you can help spread awareness, visit www.autismspeaks.org.
Do you have or support a cause that’s special to you? We would love to hear how you volunteer and spread awareness into your community. Share with us in the comments below.