In Their Own Words – What I Believe and What I Know
This “In Their Own Words” essay is written by Susan Levy is a working mom with a teenage son with autism. Levy currently runs Gilbert Hall School, a small non-profit school for children with neurological disabilities and incorporates a program called Relationship Development Intervention (RDI). She is also on the Board of the Los Angeles Chapter of the Autism Society.
I had a really great time being a mom when Jacob was a small child. When he was really young, I was fortunate that I was able to run a successful business from home. This allowed me enough time to taxi Jacob to his various therapies and doctor’s appointments. This changed starting when he was 7, and the business started to tank. I’d soon have to find employment that allowed me to work full-time and to also be Jacob’s primary caregiver, and it wasn’t easy. But in his early years, I had the luxury of being a full-time Mom and I loved it.
During this time, we had a lot of fun times together – visits to the beach, the various parks in the area, Museum of Natural History, Los Angeles Zoo, Long Beach Aquarium Legoland, Disneyland, Universal Studios, Magic Mountain, and more. One amazing vacation took us to Bern, Switzerland for 3 weeks, and Jacob spoke about it for years afterward. Because money wasn’t an issue, I could do these things and focus solely on Jacob. Though his behavior could be difficult at times, I remember that we shared a lot of positive experiences and happy times together.
Jacob was an incredibly beautiful baby. Not that I would have loved him any less had he not been, but he really was the most gorgeous infant. Big blue eyes, golden blonde hair, the sweetest face ever. Even though he’s now a teenager and taller and stronger than me, he’ll always been my little boy. The early years went by quickly, and I don’t regret one moment of my time watching Jacob grow up. His diagnosis hasn’t changed that. It hasn’t really helped me to love him more, but it certainly has given me a determination to see that he grows up to reach his fullest potential. Over the years, I think I’ve done a good job helping him do that, but I’ll never stop trying until I know he’s happy and living on his own.
So with that said, here are the things that I’ve come to know and believe in my journey with Jacob through the land of autism. Even though Jacob was considered “high functioning”, I still believe that all of these apply to any child diagnosed with an autistic spectrum disorder.
My son has a disability, the disability does not have him. Saying Jacob is autistic sounds like that’s all there is to him. Saying he has autism puts it in better perspective. Autism doesn’t define him, it only offers a partial explanation why he is the way he is. It helps to make sense of his limited interests, why he insists on telling the same joke over and over again, or why he rejects social settings when it’s with people he doesn’t know very well.
A child with autism can teach you many things: how to remain calm even though your buttons are being pushed beyond what you thought were your ultimate boundaries, how to love someone more than life itself even though at times it’s really really tough, and how to remain composed when your child has a complete meltdown in public. You learn more patience than you thought you could ever possess.
One of the most important things a parent can do is to accept their child as they are instead of trying to change them into something they are not. I never felt sorry that Jacob would never be the child I wanted him to be, but that doesn’t mean that sometimes I wished things were easier and he didn’t have a disability. This can be a difficult thing to do when you have a child on the autistic spectrum, but I can honestly say having to deal with Jacob’s disability has increased my ability to accept others regardless of how different they may be.
We are all people, disability or not. Everyone has distinct likes and dislikes. Everyone has a desire to love and be loved. Everyone has a need to have fun and enjoy the good things in life. Just because someone has autism, doesn’t mean they’ve lost their humanness. Just because they are non-verbal or they flap their hands or walk on their tip toes just means they are interpreting the world in their own way. Even if they are also mentally impaired, they have feelings just like you and I. Everyone deserves respect for the person that they are, not be judged for the person they are not.
Children with autism are not sick or diseased. They are not victims. They have a disability for which they need remediation. They need help learning how to transition successfully in their communities after they leave high school or college. Seeking a cure for Jacob because he’s a victim of autism would imply that there is something terribly wrong with him. In reality, the reason for Jacob’s behavior is the result of his brain not being neuro-typically wired.
Treating co-concurring conditions, like dietary sensitivities, can help mitigate behavioral issues. For example, if your child is non-verbal and has a wheat allergy, he might get a stomach ache when he eats something that contains wheat. Because he can’t tell you in words that his stomach hurts, he’ll communicate his displeasure by being upset. This isn’t due to his autism, it’s because he has a pain in his stomach and the only way he communicate is through his behavior. Take out the wheat and the upset behavior caused by the pain in his stomach will end.
For children on the autistic spectrum, the world is a confusing and overwhelming place in which to live. They don’t know how to act with their friends, they don’t understand what is happening in the classroom, and they have a difficult time with their parents. They may have a sensory issue that makes wearing clothing or shoes very uncomfortable. They may have a problem with communication and they are constantly frustrated when they have problems expressing their thoughts and feelings. If you really think about this, how would you feel if every moment of every day you felt incompetent, misunderstood, or unable to navigate in your environment. As much as it’s sometimes difficult to be the parent of a child with autism, just think about how hard it is for the child when the world is a constantly confusing and scary place.
The eye on the prize for your child is to help him achieve a quality of life with meaningful employment, close friends and personal relationships and the ability to live independently. Any and every treatment, therapy and intervention needs to be done with this in mind, always and with no exception. Time and money are limited resources. Be sure to use them wisely.
Parents need to have experiences with their children. Sharing time with Jacob is something I’ve never regretted. Even though his behavior could be at times completely annoying and exhausting, I know that our time together was one of some of the best time I ever spent for both him and me. Shared experiences build positive memories.
Most importantly, don’t give up hope. There were many days that I wondered about Jacob’s future. Would he ever have friends? Would he graduate from high school? Would he attend college? I still have these thoughts, but I am much more positive that Jacob’s future than ever before. So for all the parents of a child with autism, no matter what your child’s diagnosis, whether he is high functioning or low functioning, verbal or non verbal, always keep in mind that you are the key to his success. The future of your child is at stake.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.