A Mother's Love - How Autism change my life.
As a working mom I was in search for a daycare / nursery service when Damian turned 2 years old. I researched and got referrals for the best one in my area. I finally got an appointment to view one and I felt so good walking in and seeing all the kids happy and enjoying themselves. Damian was always a happy baby and I knew he would fit right in....but that quickly changed.
We met with the school psychologists, in a room filled with toys and 3 chairs. His dad and I were new young parents so we didn't know what to expect. After a few minutes of observing Damian while he played she hands us a brochure and begins to deliver the worst news I ever received. She begins by telling us that our baby was Autistic (I had ZERO clue what that was) so I glanced at the document in my hand but still had no idea what she was talking about. And no I didn't see any of the signs. She continues by telling us that he will likely never speak, hug us or show affection towards others. She even went as far to say that our affection towards him was painful to him. She didn't stop there, she suggested that we research boarding homes that offer 24/7 support because we would likely not be able to care for him in our home. I walked out of that place like a zombie. Strapped Damian in his stroller and his dad and I said nothing to each other the entire way home. It took hours at home for me to break down and take in the information. Sadly Damian was diagnose in 1999 when social media was not around and my computer was a huge box connected to AOL dial-up service. No webMD, no Facebook groups, nothing to help me understand Autism.
It took a few days of silence and sleepless nights to gather my emotions and get myself to the local library. I checked out a few books available on Autism and started to learn. Many said similar things to what I heard from the school psychologists but others provided names of famous Autistic individuals such as Albert Einstein, Michelangelo & Wolfgang Amadeus Mozart. I read that Autism was a neurological disorder and I quickly set up an appointment with a neurologist on my insurance plan.
I met with Dr. Irving Fish and to my surprised he was the director of Pediatric Neurology at NYU Medical Center and one of the smartest and kindest man I ever met. Damian was his patient until he retired. Dr. Fish was the only person that turned my doubt into motivation. He ran a overnight test on Damian when he was 3 years old where he slept over at NYU Medical Center and they performed a EEG, MRI and various testings. It was determined one side of his brain was smaller then the other. The affected side controlled his speech and many of the things that Damian struggled with. He also developed seizures at that age which was another scary situation I had to deal with. Dr. Fish assured me that the brain is a powerful tool and Damian will be able to talk and be a typical child because the other side of the brain can take on that task with ongoing therapy. He sat down with me for hours to discuss the pros and cons of medication and I opted on no medication for Damian. I never wanted him to depend on that to function and I was not a fan of the side affects discussed in the meeting.
With the information given to me I felt empowered to get Damian the help he needed. I took a leave of absence from my job at the time and became a full-time mom/teacher/therapist/cheerleader. I transformed his room into a classroom (chalkboard and all) and I exercised Damian's brain. I saw gradual changes but he didn't speak until he was almost 7 years old. I had him enrolled in the early start program, added additional therapy sessions with my medial insurance and I continued my home schooling. Basically Damian had round the clock therapy.
As the years went by the internet becoming more advance and I discovered numerous support groups. One suggested the use of vitamins such as Vitamin B6, Magnesium, Omega 3 and Fish oil. I purchased all and notice positive results in his ability to sit and concentrate for a longer time frame. I was completely emerged in Autism and fell asleep many nights on my computer table. I no longer had a social life of my own but I was determine to hear Damian talk. In school they were teaching him sign language because they personally didn't believe he would ever talk but I continued to take him to speech therapy and work on speech at "Mommy's Home School".
He quickly aged out of the Early Start program and began Kindergarten at our local public school. I never felt good about the school selection but I was made to believe by the Board of Ed that I had no other option. I took my non verbal baby and left him in the drop off room and would cry the entire way home. I knew that he wasn't happy. The first week of school I started writing letters to the principal, special education chairperson and a list of others to attempt to get another meeting and reevaluate the school placement. A few parents in the support group mentioned doing this so I gave it a try. I even had Dr Fish write a letter explaining Damian's needs and school recommendation. After a a bunch of calls and letters I finally got a meeting but it was over a month away. I was not happy that I needed to leave Damian there for another month but I was glad I got their attention. Shocking that week was one of Damian's hardest weeks. He was coming home with bruises on his legs and arms and his para said he was biting himself. Now, I gave birth to this child and home schooled him for a few years and he attended the Early Start program and he never bit himself. I demanded a meeting ASAP and felt even worst leaving my child there in the morning. I use to cry to Damian and say "Baby please give me a sign, tell me what is happening in there. Please talk to me." As a mother, having a non-verbal child is the hardest thing ever because they can not tell you what is going on.
Here is where the story gets even worst, on a Thursday morning just a few days after the bruise I get a call from Damian's father. He didn't sound good and I immediate asked "Is Damian OK?", he replied he was in the ambulance and heading to St Luke's. It's been over a decade and I still have no idea how I made it to that hospital. How did I drive and make it to the hospital is still a blur to me. I do recall running into the ER and hearing that my 5 year old was in surgery and seeing my mother in tears. Finally someone gathered the courage to tell me that Damian's index finger was detached and they were in the surgery room attempting to re-attach it. "WAIT! WHAT?" I had so many questions but I wanted to make sure he was OK. I felt guilty and so defeated. I knew that school was not for him and I should've fought harder or kept him home and now he was in a operating room. It was all my fault. How can I see his little face and pain and know I could've prevent this?
I took that pain and unleashed it as anger to the Board of Ed the next dat. My meeting was expedited and with minimal fight Damian was approved to a non-public school. Which means that the Board of Ed was going to pay Damian's full tuition to a private school that was approved by the Board of Ed. They apologized and gave me a list of schools to visit and pick. While my baby recovered at home I continued my home-schooling and the Board of Ed assigned a teacher that came to our home to school him until I found the right school. I told them I will NOT rush nor be pushed to pick a school. I visited most school on the list and found the best fit. I selected a small school specifically for Autistic children like him, small classes, awesome in-house therapist and special education teachers that were occupied to teach Damian. The bonus was that the school had a (Applied Behavior Analysis) ABA curriculum and everyone praised that in the support group. In just a few months Damian began to say words, then a few words together and then full sentence. It was amazing to watch. So many years of non-stop work, prayers, therapy and optimism....finally paying off.
Damian is now an adult and after the accident at the public school he received a fully paid education at various amazing private schools designed for Autistic kids until last year where he aged out of school. He now speaks multiple languages and knows sign language. He works at Luv Micheal a few days a week where he is a Granologist and Sales Ambassador. As an adult we are battling new milestone but we are ready and equipped to get through them.
Damian has been recently approved to begin Self Direction. Self-direction gives us the flexibility to choose the mix of supports and services that are right for him so he can live the life he wants.