Struggling to Accept an Autism Diagnosis

 

Leading up to the Autism Diagnosis

Last school year my son started faking being sick to try to get out of going to PreK and having uncontrollable meltdowns when he did go. Then he began telling us about the kids at school being mean to him. He also started coming home with marks on him that he was not able explain. When I could not get answers from my son or his teacher, I went to the principal who called a meeting with himself, the teacher, the teacher’s assistant, and my son’s speech pathologist.

My husband and I were there to find out what in the heck was happening to our son during the day. Because they recommended it, they knew we were waiting on further evaluations to be scheduled for him. So they were there to tell us we should go ahead and prepare ourselves that the diagnosis from the upcoming evaluations was likely going to be autism

AUTISM. Autism. Autism. Autism. . . a word we had avoided. A word that on occasion we had justified against considering in whispered tones. A word we were not prepared to hear. 

Although our son struggles with sensory and speech issues, he goes through periods of extreme progress. Between that and his pediatrician not being too concerned my husband and I held on to the idea that he just needed more time. There we were though in front of four professionals being told otherwise. I have read for some parents that a diagnosis told them what they already knew or brought a sense of relief to have answers to all of their questions. Even though this was not an official diagnosis, that was not the case for me. Not even a little. I was overcome with grief and worry. 

I have never projected my own hopes and dreams onto my kids. Now though I wondered if he would even get the chance to at least be an average Joe. I thought about the struggles he may have ahead, and that created a hurt so deep within me that it felt like it would break me into tiny pieces from the inside out. Sometimes thinking about it would creep up out of nowhere, like at work.

I would struggle against breaking down into strong, silent sobs at my desk. To try to hold myself together I built a temporary angry exterior that my husband unfairly got the brunt of. 

The process for the evaluations was long with a lot of waiting in between each step. Wait for a call. Schedule a meeting. Wait for a call. Do paperwork. Wait for a call. Schedule observation. Wait for a call.

Nobody could have said or done the right thing to help.

My husband and I had months to prepare ourselves for what we might be told about the findings of the evaluations. I withdrew and mostly did not tell any of our friends and family about what was going on. I was trying to sort out my own feelings. While I did that, I absolutely did not want to hear what anyone but my husband thought. No matter what anyone would have said or done, it would have been wrong. I know that is not fair, but it is true. 

Sometimes I could be rational and sometimes I would end up emotional. I could not tell ahead of time which way it would go. So I could literally take something someone said different depending on the second I heard it. 

What? You think my son DOES HAVE autism? Why would you think that, and if you did, why would you not have said something before?

What? You think my son DOES NOT HAVE autism? You are not around enough to see our everyday struggles. 

What? You are there for us? Is that ALL you have to say?

The Diagnosis 

When “autism” came out of the psychologist’s mouth at our evaluation review appointment, we took a deep breath. This time hearing that one little word was less upsetting. Everyone there was able to provide encouragement and a plan. With help they think our son will be able to go onto typical classrooms and learn to cope with the things that cause him stress. 

Looking back I think I went through, and maybe still am going through, the stages of grief.  I am mostly at acceptance. 

I pray as hard as I can everyday for guidance and strength to be able to provide my son with what he needs to be successful today and in life. More than anything though I do not want autism to define him. He is so much more. He is an inventor, a builder, a boy with a kind heart. My son may have autism, but autism is not who he is. 

He is so much more. HE IS AMAZING NO MATTER WHAT.

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8 Responses to Struggling to Accept an Autism Diagnosis

  1. Rhonda Sittig November 2, 2017 at 12:04 pm #

    Lacey– I love love how you summed this up– Autism is not who he is. It’s so true that he is an inventive, dear, loving little guy. He’s so blessed to have you for a Mom to walk through life with him.

    • Lacey Hamilton
      Lacey Hamilton November 2, 2017 at 12:28 pm #

      I think that’s part of the reason I struggled with speaking with speaking about it. I wasn’t ashamed or embarrassed, but I don’t want who HE is to be shadowed by the diagnosis. Thank you for your words, Rhonda.I appreciate them so much.

  2. Nikki November 2, 2017 at 9:24 pm #

    Lacey, this is such a wonderful piece with so much to offer to so many. Your honesty touched my heart and sharing your story will help others see that a diagnosis is just that…a diagnosis. I wish you and your family love and peace.

    • Lacey Hamilton
      Lacey Hamilton November 3, 2017 at 7:18 am #

      Thank you Nikki, and that is SO true. It’s just a diagnosis. Now I can get more information to help my son.

  3. Kelly Koutahi
    Kelly Koutahi November 3, 2017 at 9:29 am #

    This was such a heartfelt post, and I know that there are many parents who will be able to relate to the turmoil you feel inside when facing a diagnosis like autism. There are services through the school systems that can help A LOT. We went through something similar with my youngest daughter, also when she started Pre-K, so just letting you know what a typical plan might be like. She worked with the school’s speech pathologist for four school years and then was released from services. It was a break for her from the busy classroom to go work one-on-one with the SP for 45 min in the middle of the school day, and she could relax a little and focus. Mostly they worked on thinking skills and social behavior, and two years into receiving speech services, the SP started pairing her with younger kids to work together and that was amazing! We also had great results reading books together about social behavior. Some the speech therapist clued us onto, and we actually WROTE some books together (homemade-style) about different social situations like “What if you are someplace new and have to go to the bathroom?” Every child is different and you will discover together methods that really click with your son and help him gain developmentally over time. Wonderful post!

    • Lacey Hamilton
      Lacey Hamilton November 3, 2017 at 11:06 am #

      Thank you Kelly! It’s encouraging to hear success stories of older kids. My son does like to write our own books together. So doing it about social behavior would be an easy spin we could add. I’ll also look up social behavior books to read. I hadn’t thought of that but think it could be helpful!

  4. Fofoflor November 12, 2017 at 11:40 am #

    I understand how scary that could be, and what makes it so complicated is the way we never think or plan for that when we are having our little mind life plans of how we are going to live happily ever after, but no matter how unprepared you may feel you have the basic and strongest tool, the love you have for your son, also don’t worry too much about what he can accomplish, as long as he has love, he will thrive and you will be surprised! its not easy but you got this, am sending you strength x

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