By: Missy Taylor
Autism is a developmental disability that can cause significant social, communication and behavioral challenges in both boys and girls.
Ten and a half years ago I would never have thought I would be asking that question regarding my now 14-year-old daughter. I can still remember the extreme feeling of excitement and over joyed rush of emotions when I first found out we were finally going to have our family after over a decade of trying. My husband Randy and I spoke of the many things we would do such as putting up a swing set, sandbox in the yard, a family trip to Disney, setting up an account to start saving for her future schooling etc. I had a normal pregnancy, our beautiful baby girl Melanie came along right on schedule with no issues or complications.
For the first year and a half Melanie was a very happy baby. She met her milestones and progressed as I had assumed was the norm. Shortly after Melanie turned 18 months I noticed some changes in her that seemed to be out of the ordinary. As a mother, you have “gut feelings” when things are just not right. I had expressed my concerns several times to our family doctor that she was no longer looking at us when we spoke to her, at 8 months she had a 50-word vocabulary and now all of a sudden was not speaking at all, she consistently had tantrums and there seemed to be no communication either way. At one point, we thought maybe she was deaf. The doctor continued to reassure me that everything was fine and to be patient. More out of the ordinary things were occurring as we approached the age of 3. I noticed Melanie had to have certain objects in a specific place at all times – if one of these objects was moved she would become very upset and insist on it being put back in that place. She began lining objects in rows, insisting on things being grouped by colors. The next thing I had noticed was her fascination with flashing lights and the constant flapping of her hands along with an upswing gesture with one hand when saying things.
Eventually, after consistently feeling uneasy we were referred to Buffalo Hearing and Speech for an evaluation. Within ten minutes, I had to swallow these words, “We strongly feel your child is Autistic and we will have to do more testing.” I remember just standing there completely numb, with a deer in the headlights look on my face. As I was driving home, I began to talk to myself, “How am I going to tell my husband our little girl has been preliminarily diagnosed with Autism?” “What is Autism, how can I explain something I know nothing about?” To be completely honest I went through a brief so called mourning phase because everything we had planned for, hoped for, wanted to do was completely off the table. By now, Melanie was three and a half years old with a diagnosis of Autism in the works. We had already missed out on Early Childhood Intervention. My husband was having a difficult time grasping all of what was happening. Little did we know that this life long journey would be a difficult one with constant battles, challenges, ups and downs.
At the time, there was not much out there regarding Autism. Unlike someone who may be diagnosed with cancer, there was no brochure to read or special doctor to see. I felt like I was thrown to the wolves to fend for myself and figure this all out. We started our continuing diagnosis process through referrals from the Special Education Department of Clarence School District. After several tests, neurologists, endocrinologists and child psychologists Melanie had been diagnosed with severe Autism, Sensory Integration Disorder and ADHD. Quite honestly, I had so many feelings running through me; sadness, anger, lost, hyper, out of control, resentment, hate – I had to just let it out and then let go again to move on.
I began to research what I needed to do to help my daughter. Who knew there would be countless hours of phone calls, paperwork, red tape and jumping through hoops to get the necessary services, she needed along with the proper placement in a program? No two Autistic persons are the same so there is no typical handbook when it comes to Autism. Melanie started with speech and occupational therapy for developmentally delayed children in a preschool setting for kids with special needs. After two years on a waiting list Melanie was enrolled at The Summit Center in Getzville, NY. At first I second guessed my decision to send her to that school because of the structure and what appeared to be a rigid program. The fact is The Summit Center is the place for children with Autism and developmental disabilities. Thanks to this school Melanie, who was predominantly nonverbal can now communicate with some verbal as well as through her speech program on an iPad.
After all the constant battles and finding placement to get Melanie on the right path one may think all is finally set and good. Unfortunately, Autism does not just end there and live happily ever after. In the beginning, I raised the question, What Is Autism? What I provided was the clinical definition. Autism for every person and parent can vary to several degrees. Many times, friends and family have heard me coin the phrase “predictably unpredictable” because that is basically how we as a family live our lives. Melanie is a beautiful blue-eyed young lady with a heartwarming smile. She loves all types of music, can utilize a computer and can work a TV/VCR and DVD player like she invented the darn thing. She loves the outdoors, plays sports with other special needs kids and loves art. Melanie has an extreme difficult time with loud noises, crying children and large groups of people to name a few things. There are times when she becomes over stimulated and cannot sort things out which results in her having a tantrum commonly known as a meltdown. This is not something that is limited to just the home environment and has happened in public many times. One of the most difficult things for my husband and I, as parents of an Autistic child, is to be judged by others. There have been several times we would experience a meltdown in public, where others would be quick to judge. I cannot tell you how many times I have been accused of being a “bad mother.” How can one mother be so cruel and quick to judge another mother? The stares and the whispers when she is flapping her hands because she is excited can be so hurtful. We are not bad parents and our child is not in need of severe discipline. Before you pass judgment maybe ask yourself if there is some way you could help in the moment. If not then do not comment on that which you do not know. Melanie does not sleep through the night often and there are many times that she will go around the clock for two to three days straight. She needs constant supervision, has no sense of danger and a high tolerance for pain. She is very routine-oriented and sudden changes can put her in a tailspin. There are times when she can be aggressive and is very strong.
All of this can be very difficult on parents. It also means that it takes time away from one another, unintentionally. I am blessed to still have my family as one whole unit. Many know, as special as our children are it can be very difficult to cope with the tantrums, meltdowns, daily routines, structure, therapies etc. that comes along with having a child diagnosed with Autism. Randy and I are lucky to have each and to be together as many marriages with Autistic children end in divorce. Randy loves Melanie so very much, he would give her the world and loves her to the moon and back. He has told me, “I am just a humble father trying, with expectations, but I cannot change this.” I know it is heartbreaking for him and he tries so hard. They really are buddies and it’s fun to watch the two of them challenging one another. One thing I can say positively is that, because of Autism, there is a greater sense of patience within our household. We have learned to accept that it is what it is and we cannot control it. What we thought was “normal” no longer is and sometimes we need to step out of our world and into hers.
In looking back from the beginning and her first being diagnosed till now, Melanie has made many great strides and shown much progress as well as episodes of regression. There is so much more we need to learn -it has been a difficult journey and we have had many doors slammed in our face but we will never give up. Not only does Melanie need to learn to adapt, understand and learn how to live in our world, we too must adapt, better understand and learn about her world.
Autism is not going away it is here right in our face and more and more children are diagnosed daily. Don’t fight it, learn about it, and try to help others be aware. Regarding my daughter Melanie and her Autism diagnosis, it is what it is, she is who she is, accept her and learn more about it.