April 04, 2017 | By Lori J. McClure - Assistant Director
Four Letter Word...AcceptAlmost fifteen years ago, one phone call confirmed my greatest fear and changed my life forever. As I listened to a voice of a friend and pediatrician, and I heard; “In my heart of hearts there is something wrong with your son”. As the years evolved “wrong” changed to “different”, none the less, the journey that began that day would be one of the hardest I would face.
At the beginning, there was heart ache, denial and so many different diagnoses. I had such a hard time wrapping my brain around what was and what was to come. I had specialists look at him and tell me not to worry, “he’ll be just fine”. I had good intentioned people tell me that God was going to take care of this and I just needed to pray. I was spiraling into a life of reaction, holding onto words I wanted to hear not necessarily words I needed to hear, because I just didn’t know what voice to listen to. I didn’t want to believe my hopes and dreams for this precious boy were not going to be.
After a couple of years, I evolved into a decent routine, juggling all my responsibilities as well as being chief advocate and resource finder. There wasn’t a specialist or possible therapeutic process I hadn’t researched. I gave up on placing my trust in a diagnosis, instead I went full throttle into finding any program that would open as much of the world to my son as possible.
This meant many days in hotels, staying in relative’s homes, passing my daughter off to my parents and relying on my network of friends to help catch all the pieces that fell to the wayside. I will say my parents were not only emotionally supporting me but could provide financial resources for us so we could travel to the leading specialists and invest in the out of the box treatments.
As I continued to help my son in any and every way I could, I also had to fight for his rights for a quality education. I was always pressing against that fine line between what the law allows; the line of “best” and “most appropriate”. I could write pages of battles and people I had to endure for the benefit of my son, but that’s for another day.
As the years progressed I began to feel desperate, a race against time. I saw a quote from Jessie Doyle which accurately says:
“I think the hardest part of having a child with a delay of any kind is the fight: The fight for services. The fight for people to understand who your child is and what they need. The fight for knowledge, because knowledge is power. And the quiet fight you have within yourself wondering if you’ve left no stone unturned.”
Having all these “fights” in your life, support and encouragement is vital to surviving. During a very dark time in the journey my parents offered to send me and my children away to visit close friends. I was so appreciative of this gift and looked forward to being in a safe place and being fueled with love and laughter. After we arrived, my friend and I went to a grocery store to pick up some things we would need for the week. She was very aware of all the specialists, the therapies, the travel and my commitment to providing for my son. As we walked down the aisle she stopped me and said I needed to stop all the “work” and just accept my son for who he is. I have never felt as stunned as I did at that very moment.
I could not utter a single word for all the words that were coming to mind were certainly not going to help that moment. I thought, if my child had cancer would I stop the work and accept the disease? If my child struggled with his grades would I stop the work and accept his learning struggles? I wasn’t trying to change the essence of my boy, I was trying to change the disorder that captured the world he lived in. He was a prisoner to different neurological programming and I was trying to help rewire that so he could show the world the amazing boy I know he is.
Current research says 1 in 45 children between the ages of 3 and 17 are diagnosed with Autistic Spectrum Disorder (ASD). These are staggering numbers, but it means the probability of you knowing someone on the spectrum is high. During Autism Awareness month, our goal at ASE is to help shine some light on what it is like to live with ASD. Obviously, this will be coming from a mother’s perspective.
My first point is to share the absolute need we caregivers have for support and encouragement along our journey. I do not expect you to understand the flooding of emotions I experience daily. How in one minute I can feel the highest joy and then turn around and feel the depth of my soul drop. I do not expect you to know the tingling that goes through my body every time the caller id shows the school number. I certainly do not expect you to know the fear I feel daily for my son’s safety or in not knowing what each day will bring. Thank God, I have a faith that pursues me in my darkest times of doubt.
However, I could not be where I am today without the unconditional love and support from my family and friends. Support can look many ways. It could be a text of encouragement. It could be flowers left on a front porch. It could be taking the sibling(s) out for some special time. It could be a meal. It could be as simple as a hug. We do not need any more opposition in our lives. We need belief that what we are doing is the very best for our children and they are worth every ounce of effort we pour into their lives. Now that I think about it, couldn’t we all use that kind of support? Go and support!!