The autism diagnosis

June 2nd 1993, a day that felt like the beginning of the end of the dreams that I had for my young son who had just turned 3 years old. It was the day that my husband and I received the news that our son had autism. I remember the specialized team at the Children’s Hospital sitting in a circle with us looking quite somber and serious as they spoke. What hit me the most that day was when the social worker took out a 8.5 x 14″ form that read Assistance for Children with Severe Developmental Disabilities. I shut down at about that point, it was way more than I was ready to hear.

Back then I didn’t have a computer to do any research. I didn’t know what autism was other than having watched Rainman movie with my husband a few short months prior to our son’s diagnosis, which was probably not a coincidence… that’s all I knew about autism. It was impossible for me to fathom my little guy being an adult one day and having this challenge. I could not comprehend the magnitude of the news that day and what lay ahead for us.

I was in pain… I was crying… and I was grieving. I couldn’t understand how I could be feeling such a deep sadness when my son was still alive… yet it felt like he had died… I felt like I had died as well. I felt so confused.

Yet nothing had changed with him. He was still the same little cute guy with the same needs as before, but somehow it felt so different. I refused to read anything on autism for the first 6 months… I was dealing with a slight dose of denial, not to mention anger and rage at God for giving me this challenge.

I blamed myself for years trying to justify the diagnosis even though I couldn’t think of anything that I had done wrong to cause this. I never even had a glass of wine while pregnant. I was not a smoker. I never did drugs. I thought that I was a good mother and wife… so where was this coming from? Why him? Why me? Why our family? What did it all mean?

This couldn’t be it…agencies, social workers, special needs developmental workers, occupational therapist, speech therapist, appointments, calls to make, forms to fill out with all the things he couldn’t do, advocating, workshops, nursery school… it all felt so foreign. I just wanted to be the mother to my two young children, that was the job I wanted not all the challenges that autism brought me. I felt robbed of having a normal opportunity to be a Mom. As wonderful as most of the people we dealt with were, it felt invasive to have so much coming and going in our home.

Little by little I started researching autism, and taking in more of what the professionals were sharing with me. The following year we purchased our first computer and the world of the Internet was at my finger tips (looking back there was very little online in those days but it was a lot to me). I dove into researching every aspect that affected him… it was endless and I did this for what felt like 24/7. I was determined in my mind that I was going to get him out of this mess. He was not going to stay handicapped if I could help it, that was my mission. I attended what felt like hundreds of workshops and became involved with doing fundraisers for the local autism society.

I also had put so much of my life on hold. I gave 100% of myself to my son and figuring out all that he needed. The rest of my family suffered because I was so focused only on one thing. I was often distant and into my world… the world of autism. I prevented myself from enjoying and living life to the fullest. I had a promise to keep and that was to keep going until I had turned over every stone imaginable for my son.

Over the course of all these years I was often told   ~God chose you to be Kyle’s mother because He knew you could do it~   there were days when I heard this that I felt so angry that I simply wanted to scream. Life was not normal. Life felt very challenging. I felt that I had to do extraordinary things and that was a tough and lonely job. How could others who didn’t understand what I was living tell me this. I had no training or no manual to raise a child who had autism. I felt so angry I could not see the gift in the autism, all I saw were the challenges. All I wanted was my little boy back the way I imagined him to be with all my dreams for him intact and I wanted my old self back. I wanted my family back as I knew it before that day June 2, 1993.

It took years probably twelve years or so from diagnosis to start letting go and start accepting what was. I had to find a better way to cope, accept and live my life… I owed it to myself and to my family, but especially to my son and also to God… I discovering that if He brought me what felt like a challenge He would be there to see me through it… and I was beginning to see the unfolding of the gift that autism had brought me.

Today I’m still very much a work in progress, as I continue to evolve, grow and learn from my experiences with my son. He has been my greatest teacher of life.

Today marks the 19th anniversary of our son’s autism diagnosis. For years I grieved so much around that date. Now I rarely ever think of it, which is enough to prove to me how far I’ve come on this journey.

In 1993 the autism (ASD) prevalence was 4-5 children per 10,000 born would receive this diagnosis. Today the prevalence in Ontario (Canada) where we live is 1 in every 165 births that will receive the ASD (autism) diagnosis.

I truly feel that there is a deeper spiritual meaning behind autism. And if we open our minds and hearts to these children and adults they bring wonderful gifts and opportunities for us to learn about ourselves.

This is our son Kyle a week before he was diagnosed with autism at age 3

I would love to hear how someone with special needs has changed your life.

Blessings,
Suzanne xo

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Comments

  1. Beautiful, brave post Suzanne! Thank you for sharing your difficult journey and how you’ve come to accept and embrace what is. I could so relate to seeing that sheet of paper with “severe developmental delays,” which we received regarding our little guy. I recall feeling so stunned. The increasing rate of autism is scary, and yet I also believe that there is a spiritual factor here that’s impossible to research. There’s an aspect of looking inward and being connected to the RIGHT NOW that’s impossible to ignore. xoxo

    • Liv, you really understand all of this as well as a parent yourself of a special needs son. Thank you for writing and sharing. I often wonder what discoveries we’ll have made in the next decade or two with regards to autism. What is it trying to teach us? xoxo

  2. Suzanne, I work with adults who are labeled developmentally disabled. Some of my clients are autistic. The labels don’t matter to me because I have learned over the years that each and every one of them is an individual with their own spark of grace and beauty. You are so right about the gifts and opportunities they bring to the rest of us if we are only open to it.

    I’ve long said that our children are here to teach us. The number one lesson I’ve learned from raising mine…to let go and accept them for who they are. xo

    • Susan I really enjoyed reading your comments and hearing that you work with the adults who are autistic. They are blessed to have you accept them for who they are for their own spark of grace and beauty. Beautiful. xo

  3. Suzanne, what a lovely, touching post. I truly believe too that, if we only looked deeper, those with autism bring so many wonderful and needed gifts to our world.

    My cousin, Jenny, has down syndrome, and she is one of the brightest lights I know. She brings so much love and joy to the world, if I could only have her enthusiasm for one day – I would be so thrilled.

    Love and peace to you! Blair 🙂

    • Hi Blair, thank you for sharing about your cousin. People with down’s syndrome are such bright lights I see it in those who have this syndrome that I know. Glad that you have Jenny to bring that and more to your world. 🙂
      Suzanne xo

  4. Suzanne, being a mom is not easy, is it! We so want things to be perfect for our children, or to “fix it”. I have a brother with learning disabilities. Thank you for your heart felt post! Blessings to you and your son. Nancy

  5. I can totally relate to the physical pain you felt upon getting the diagnosis, Suzanne. To this day, I cannot find words to describe what I felt in those first 48 hours. But, like you, over time, I’ve come to learn that we are not (nor can we be) in control of EVERYTHING in our lives. We may have a plan, but it’s not necessarily THE plan that is meant for us to live. Once I came to terms with that, I was better able to pick up the pieces and move on.

    For a long time, all I could see was the diagnosis. And, one day, I decided to just look at him – at my son, for the individual he was (and is). I realized that I had to stop projecting my sadness upon him because, in reality, he was (and is) not sad in any way! Now, on an off-day, instead of feeling sorry for myself, I look to him and ask myself, “What is he thinking right now?” His smile, laughter and gift of “living in the moment” is all I need to help me answer that question.

    Thanks for sharing, Suzanne!

    • Gabriella, you shared beautifully about your own son and your journey of accepting. I cannot begin to imagine you having to do this as soon as he was born. There’s no easy way that is pain free for parents… we need time. Thank you for sharing with me.
      Suzanne xo

  6. Thank you for sharing this Suzanne. Both of your children are blessed to have you as their mom. You have given them more than you could even begin to imagine. Continue to inspire and motivate and learn and grow. That is what life is about. xo

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