Finding our way together: Susan Levy

I’m a single working mom of a 17-year-old teenage boy with Autism, diagnosed when he was 3 ½. I have always been the primary advocate for my son with not much emotional or financial support from my now ex-husband and immediate family. The journey has been filled with many struggles and successes, and I’ve learned so much in the 13 years that I’ve been dealing with his disability. Since helping others is something that has always given me much satisfaction, I’ve thought of writing aobout my experiences for many years. The result of this desire is my blog, Taking the Awe out of Autism, which I started in June of this year.

I found Hopeful Parents during a Google search for additonal sites to publize my blog, and I really liked the site from the moment I found it. There, I discovered other parents similar to me, parents who loved their children and faced many obstacles along the way. I love my fellow bloggers and I really enjoy reading their posts each day.

As I mentioned, I’ve wanted to write about my experiences for a long time. I’ve always enjoyed writing, so this was a great way to satisfy my creative impulses and help other parents at the same time. I know how daunting it was to blaze the trails for my son way back in 1997. If I can make this easier for another parent feeling overwhelmed and alone, I know my instincts to share were correct.

Writing is therapy for me. Blogging helps me feel connected to others. One post, What I Believe and What I Know, was featured on the Autism Speaks Blog, In Their Own Words as well as on their Facbeook page. Almost 100 people responded with comments like “Thanks for Sharing” and “All parents whose children are newly diagnosed should read this”. All except one were overwhelmingly positive (and you can read about my thoughts about the one not-so-positive response on Hopeful Parents.) It gave me a great deal of satisfaction to receive not only praise but encouragement from other parents just like me. I love knowing that the years of planning, preparing, meeting with professionals, and arranging playdates for my son not only paved the way for him to achieve a better life but helped me find a path for my own creatively.

I thank Christina Shaver for starting Hopeful Parents. I love being part of a community of positive, creative, and positive parents. I know how daunting it can be to raise a child with a disability. Hopeful Parents is a wonderful way to help parents not feel so alone.

What I Believe and What I Know from Taking the Awe Out of Autism

I really enjoyed being Jacob’s Mom when he was a small child.  I was fortunate that at the time, my business was sucessful and I was able to work on my own schedule.  We spent quality time together doing a lot of kid-oriented activities. Things changed when he was about 7 when the business started to tank. I’d soon have to find employment that allowed me to work full-time and to also still 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.

We had a lot of fun times – 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 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 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 to 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 you might have a difficult time realizing that particular moment, 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 at times 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 thier tip toes just means they are interpreting the world in their own way.  People that are mentally impaired 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 neurological disability for which they need remediation. Some individuals with ASD have co-concurring conditions that make them medically fragile or extra sensitive to their environment, and each of these co-concurring conditions needs to be individually addressed, treated or remediated. 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-typcially 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 and siblings. 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. 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 difficult to be the parent of a child with Autism, just think about how hard it is for a child whose world is constantly confusing, scary, and unpredictible.

The eye on the prize for your child is to help him ultimately 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.