Coping With An Autism Diagnosis

As described by an Autism mom

coping with an autism diagnosis

coping with an autism diagnosis

My name is Deidra, and I am a mom and wife. I have two children. My daughter Maddie is 7 years old, and Keegan is 3.5 years old. Keegan was diagnosed with severe autism last year. One thing we love to do as a family is go to the movies.

It has taken me almost a year to write this. On February 16, 2015 my life changed. Keegan got his diagnosis of severe (level 3) autism. I had known in my heart for over 6 months that it was autism, but prayed that it wouldn’t be, and that the early intervention would start working. I had prayed that his symptoms would go away, but when they didn’t, I had hoped for a diagnosis of mild. Looking at his symptoms I knew it would be more than mild, but I kept telling myself that it could be mild.

After three meetings with Keegan in different settings, including our home, the psychologists said that she could conclusively say that he had autism, and that through her testing he was severe. I burst into tears as my husband sat in silence. It was a cry, the ugly cry, that nobody wants to have in front of strangers. I couldn’t even ask my questions because I was so upset. After the team left, I went onto the porch and continued to cry. My husband had asked the team if he would ever speak. She had said he might, but she couldn’t say that he would for certain, but that early intervention was the best option.

You see, I’m a counselor, and I should know what the stages of grief look like. I should know how to get my anxiety and depression under control. After all, I do this for a living. I went to graduate school to learn all of this. I help my clients to get their lives back in order after life changing situations occur, yet I could not do the same thing for myself. I consumed myself with Keegan’s therapies.

I worked with him daily trying to hear him make a new sound, or do something that would prove that they were wrong, but it never came. I questioned everything. I questioned therapists for a straight answer on quality of life. I questioned doctors, myself, my husband, and even God. I wondered what I had done so wrong during my life, my pregnancy, and after to deserve this diagnosis of severe, non verbal autism. It seemed like no one could tell me anything, and like God had abandoned me.

For about six months, I went through the motions. Go to therapy, practice the tasks at home, go to another therapy, continue. It was like walking through quicksand hoping that one day I would get through to the other side, but then realizing that I was sinking quickly, and might go under before I got there. My husband, he kept saying, “We love him, and a diagnosis does not change that.” I nodded and agreed, but inside I was screaming you jerk I am not saying I love him any less, but I am selfish and want a “normal” kid. My family and friends apologized, or even worse told me about a friend’s second cousin that had severe autism, and is now fine.

At the time I did not want to hear lift me up stories about some long lost cousin that now lived a normal life. I wanted someone to listen, to let me cry, to hold me and tell me that even though it was not alright that one day it might be. I got that from a STRANGER. I was in Wal-Mart, and Keegan was having a meltdown. Normally, I would leave, but I had things that I had to get. I was grabbing them quickly when a woman tapped my arm. I was talking to Keegan, doing compressions, and anything else to try and calm him, so I figured I was just in her way. I moved over and said “sorry.” She said, “autism right?” I turned and shook my head. She said I was walking behind you for a while, and I heard and saw your interaction with him, and you are so patient. By this point I was in tears, and she said “It gets better. Maybe not today, maybe not tomorrow, but it does get better.” She walked away, and I could feel the tears about to come. I held them back, checked out, and got my son to the car. Then, they all came flowing out. The one thing I had needed to hear all those months, and a stranger said it. That day, my perspective changed. Yes, there are some days that I still feel depressed, anxious, and even hopeless, but more days than not I feel blessed to have Keegan in my life. He is the happiest, most loving little boy in the world most of the time, and he is MINE.

So, for any parents out there dealing with a new diagnosis, or for parents that have been dealing with it a while, but feel anxious or hopeless I give you these last words. It will get better. Maybe not “normal”, but better. It might not be today. It might not be tomorrow, but it will get better. So, stay strong, persevere, and fight for your child because you are stronger than you think.

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