There is a picture at the top of our stairs of Ethan at age 1. It is my absolute favorite. This picture can on some days bring a smile to my face or on a bad day bring so much pain. To me this picture of Ethan is what I call the "REAL" Ethan. The Ethan before Autism.
Far from the tree: Parenting a child different from you was the title of a recent Katie Couric episode in which Katie interviewed a mother of a child with Autism. I watched wondering how the mother could so eloquently tell the story of her son without even a tear and how Katie could sit there and so coldly ask the most ridiculous questions? Such as "How did you feel when you heard the diagnosis?" I half expected the mom to ask back " How do you think I felt ?".
All the books tell you that you need to take a period of time to grieve. To grieve the loss in a sense not of your child, as they are still with you, but the loss of the hopes and dreams you may have had for them . Like the mother on that show stated the moment is a frozen moment in time. Like you will always know where and what you were doing when you heard the news of 911, Parents will know where and what they were doing when they heard the word Autism . I myself do not remember most of his appointment when we got the official diagnosis that went on paper that should be laminated as it has gone with us to every evaluation , school, fundraiser etc. I remember the phone call I received from his pediatrician after his 18 mo well check. I had to work that day so Tommy took Ethan in for that appointment and when I got home I asked how it went and Tommy told me that the doctor said he would call me later that he needed to talk to me. Didn't seem like a good sign , I mean Ethan is the most adorable kid maybe he was calling to tell me that a local modeling agent contacted the doc to find extremely cute kids for a commercial . No such luck. I was driving in the car with Ethan in the back seat when I got the call. The doctor said that although he couldn't give an official diagnosis , he felt that Ethan had a lot of red flags for autism and that he would be sending him for further testing and referring him for Speech and Occupational therapy. I had already had several of my own concerns on the matter but had hoped that they were unfounded and that the things we were seeing in Ethan he would grow out of, but to have a licensed doctor tell me "red flags for autism" I could no longer deny it or so I thought. I broke out in tears which is nothing new for me as I'm pretty sure that no one cries as much as I do , but I looked at Ethan in that moment in the rear view mirror and my vision of watching Ethan play basketball, playing guitar, me getting him flowers to give to his first date, going to college and getting married all seemed to slip away. What did this mean for Ethan ? So began my 5 stages of Loss and Grief.
Many people do not experience the stages in the order listed below, which is okay. The key to understanding the stages is not to feel like you must go through every one of them, in precise order. Instead, it’s more helpful to look at them as guides in the grieving process — it helps you understand and put into context where you are.
1. Denial
2.Anger
3.Bargaining
- If only we had sought medical attention sooner…
- If only we got a second opinion from another doctor…
- If only I was a better person…
Secretly, we may make a deal with God or our higher power in an attempt to postpone the inevitable. This is a weaker line of defense to protect us from the painful reality.
4.Depression
5.Acceptance
Well if you ask me Julie Axelrod my list goes something like 1. Denial 2. Bargaining and now I flip flop between Anger, Depression and Acceptance.
For a year of two after the diagnosis I still had some denial as I still had hope that he would talk as my mom said that she didn't talk until she was 3, but when his 3rd birthday came and went without any words I had to go through the whole loss process again. I bargained for a while and will still but rarely visit the bargaining chip tool. "If only that nurse hadn't given him the wrong shots at 9 months or If only I hadn't vaccinated him at all". Going down that road is a waste of time , lots of people play the what if game but until Doc Brown masters the time machine it can band aid the wounds but never heal them. My red get it done personality forced my acceptance as Ethan had to have the official diagnosis to get the treatment that would help him. So I accepted that my son had autism. But does that mean I accept him just as he is ? I like to think so but if that were true then why do I still bounce between the last two stages of Anger and depression? How can I truly accept it when I feel like my little boy was stolen from me that in a way I don't TRULY know my son at all . When I play my what if game I try to ENVISION what it would be like if Ethan DIDN'T have Autism. Instead of listening the his I pod in the empty bath tub right now he would be in a regular kindergarten class, asking to ride his bike after school and play video games. He would have been waking us up on Christmas day to go open his presents . He wouldn't have gluten free birthday cakes.Ethan is very tall for his age so even though he is six he looks much older than he is . So comments from strangers in the store of "What football team you got him playing on ?" although well intended can ELICIT a whole new wave of Sadness. I don't know where the real Ethan and Ethan with Autism meet . I told Tommy yesterday that this is not what God could have possibly had in mind for Ethan we have to be able to fix this ! In his INFINITE wisdom Tommy replies" Do you think Ethan is unhappy?" The answer to that is simple .... No ! Ethan is very happy , If I gave Ethan his I pod all day long I would hear nothing but giggles and pure joy pour out of him all day long. It's when I put him through hours of therapy to form him into what I and society think is "normal " is when he fights and throws a fit. So is the acceptance stage getting me stuck from moving past depression and anger? I realize I am not working to heal Ethan for Ethan I'm doing it for me . I DON'T want to be changing poop diapers for the rest of my life, I don't want people to stare at me at the grocery store, I don't want to lose my 6 year old in church, I don't want to have to work $500 a month into my budget for therapy. I want to watch as he learns to read, I want him to memorize bible versus I want him to FIGHT with Hailey and I want him to be able to talk and tell me he loves me. Realizing this doesn't make it any easier to implement in real life because life with Autism is hard but its a starting point. I in so many ways feel that God gave Ethan this condition to teach me a lesson as Ethan isn't SUFFERING from Autism, I am, and until I "Get it " ie: patience , kindness, tolerance, humility and most of all learn to trust him he will continue to use Autism to teach me everyday. As God is the ultimate healer he knew Ethan before I did. He knows every hair on his head every strand of DNA and every neuroreceptor and without a blink of an Eye can heal Ethan . So that being said , Who is the real Ethan Haggerty ? Let's see where Ethan meets Ethan with autism.
Ethan with Autism Ethan Haggerty
Wanderer Explorer
Can't sit still Excited about Life, Lots of Energy
Can't Talk Abstract Thinker
Chews on Clothing Love of Fashion? :)
Walks on toes Strong Calves
Sensory Issues Loves Big Hugs
Doesn't like new situations Is Happy just as he is
Oblivious to the world around him Doesn't see how cruel this world
Can be
Ethan also brings joy to those around him. His smile is infectious . He loves music and loves to share that with anyone who will sit and sing with him. He loves to swim, swing and jump. if there was sport for endurance of jumping Ethan would win everytime. he loves snuggles . He doesn't have a malicious bone in his body. I guess what I really want is for everyone to see ethan the way I do. best way to make that happen is for me to love him for who he is and watch it radiate!
