20 years after the autism diagnosis: Autism Files

Today June 2nd, 2013… it is 20 years later after our son’s autism diagnosis, on this day in 1993.

As I was working in my flower gardens this weekend and I was remembering the year that we had created our first big flower garden at our home and it was the year after our son had been diagnosed with autism. All of a sudden I remembered what date we were… and realized the next day June 2nd was going to be the 20th anniversary of our son’s autism diagnosis, a day where it feels that our life was changed forever in so many ways.

A year ago I wrote a blog post  about his diagnosis, he had just turned 3 years old and just a few weeks ago he had his 23rd birthday.

 

How is it different for us today than it was for those first 20 years?

We have survived what felt like intense early years. I had so many fears of the unknown for him especially as an adult. I don’t know how it happened, but he’s now a young adult and we got here without fully realizing it. It seemed to happen almost overnight.

Back then life felt like one big roller-coaster ride for so long… so many ups and downs, we were rarely ever coasting it seemed… we were either going upwards at a slower more relaxed page… but mostly it seemed that the ride took us on a downward dive, experiencing what felt like steep high-speed drops. They were painful times to go through. It felt like we had very little control about our situation, like there were no other choices but to hold on for dear life with all we had so we wouldn’t be thrown off the roller-coaster.

Today it no longer feels like we are on a roller-coaster ride. We choose instead to coast through life with our son at the speed that we wish most of the time. I must say that we rarely ever have any speed bumps along the way. The ride is so much smoother. We have learned to navigate life with greater ease. Learning that we could co-create the life we desired for ourselves was such an important stepping stone in helping us get us there. It didn’t happen overnight, but it certainly does feel like we have arrived.

I believe as a family together we have come through to the other end of the autism tunnel. For the longest time I saw no glimmer of light and today all I am able to see is the light. I no longer see the autism tunnel. We have learned as a family how to shine brighter than we ever have and to live life from a much happier and more peaceful place. We are far from perfect or having it all figured out, but the strides we have made is now very clear to us and boy what a feeling that is. Our life feels so different than it did even 4 years ago when he came out of school. With a shift in our focus and also beginning to dream differently for him and our family, it all began to unfold as we saw it with time.

The autism has taught me to let go of so many things over the years. I had to learn to trust God and to trust myself and in the future even when I didn’t know how that would look or what would be available to our son. We are learning to live our life from a happier and more peaceful place and from that place more good things will come, even the things we can’t see yet.

It took me a long time to do this, but eventually I had to learn to disconnect from the things that were driving me over the edge. I could no longer do what didn’t resonate with me anymore. It felt like the fun and joy in my life had been sucked right out of me. The gut-wrenching feelings I experienced all too often were simply trying to show me how to listen to those feelings and learn to trust that they could show me the right way for my son. I had to learn to listen to those feelings, they got so intense I could no longer ignore them. My daughter has been instrumental in teaching me about those gut feelings and what they were trying to tell me. She’s been a powerful influence in my life these past few years as I began to learn to take steps towards trusting and finding my way to my own answers. My husband’s unconditional support all these years has been monumental as well in allowing me to do whatever I felt needed to get done, and this was simply another turn on this journey that he took in stride.

I am now able with greater ease to put my attention and focus on my deepest desires. This has been a lot more fun than how I used to do things. Swimming upstream or against the current so much of the time was never, ever any fun. I am going much more with the flow now, and I am able to attract more of what I wish for in my life because of it.

I rarely ever focus anymore on what anyone else is doing, or what is happening in the autism world. I make conscious efforts to listen to how I feel instead. If it brings me that not so great feeling, I choose for the most part to not go there. If what I wish for my son is slightly different from someone else, I will follow that path that feels right for us instead of not listening to my inner voice. I prefer to keep my energy flowing in the direction that feels right where I know that a world of unlimited possibilities awaits for us and our son.

I have come to realize that our son is showing us what he wants in life. He always believes that what he wants, he can have. He chooses what he loves and eventually, almost always (not quite) it become reality for him. He is teaching us to focus on whatever it is that we want, so we can attract it. He knows that the world is filled with unlimited possibilities when one believes.

autism

Some of the greatest desires that I have for my son is that he always continue to experience an over-abundance of joy and happiness in his life; that he feel loved and supported by those that he is closest to in life; that he be able to get access to all of the opportunities in life that he desires just like us, with no limitations; that he be able to use his gifts and talents and share them with the world. I truly believe that he has many talents that will continue to be revealed. I wish to continue seeing him make his greatest desires a reality and that they continue showing up in his life.

The past 20 years has helped us to grow and be in a place that is much more peaceful, fun and light-hearted. If any of this can give hope to another parent of a special needs child or anyone else for that matter… it is my hope that my journey has been able to do that for you. I didn’t have any of this figured out 20 years ago. It took me a long time to understand that I had the power within me to change. You can do it too. Keep reaching for the feel good feelings and dream the impossible dreams.

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Comments

  1. What a beautiful journey, Suzanne! Our children are such gifts to us. They teach us so much. Congratulations to you for allowing the shift to happen. For choosing to live from a place of joy and for having the courage to see that choice through. ♥
    Maryse recently posted..Sacred QuestionsMy Profile

  2. Dawn Conery says:

    Beautiful, you are such an awesome Mom. Your whole beautiful family is a shining light and inspiration. Thank you for sharing so much, I know it touches thousands of lives.
    Huggs,

    Dawn

  3. Wonderful post! I just LOVE how you focus on how you and your family are feeling, not what others are doing. That is such a gift to receive! Blessings to you and your family always! 🙂
    blair shackle recently posted..Revisiting my “I Will” list for 2013My Profile

  4. What a beautiful post, Suzanne. Thank you so much for sharing your reflections over the last 20 years with us all.
    Janice recently posted..The power of prayerMy Profile

  5. It sounds like you and your son are on the same track–going for what you want. A very well written blog. I’m glad things are growing both in your garden and your life.
    Sheila Skillingstead recently posted..The weekend runs down quicklyMy Profile

  6. Thanks for this gift Suzanne! I’ve been down this road with my 18 year old son, Miles, who was never definitely diagnosed. Lots of experts guessed and tried to put him in a box, but as a family we found the best way of holding it was that he perceived and experienced the world in a way that was uniquely his. We, and with my constant prodding, his teachers all learned that it worked best when we met Miles where he was and led him tell us what he needed. Forcing him to conform of perform or meet anyone’s standards or expectations never worked. His heart is SO big and full of love that eventually people learned to let that love touch them and ultimately transform them. I see my son (and yours) as brave souls who came into this world with great challenges. It’s tough growing up a boy and not being athletic or academically strong. He had to learn social skills and navigate many socially awkward situations. The interesting discovery was how awake and spiritually aware he is! He is way beyond anyone I’ve ever met and he became a catalyst for me in a major way, when he was still a child.

    From the outside, few people understand. I love your gentle, open-hearted way of seeing your son and yourself. Beautiful, inspiring piece and much needed as we all need to learn to understand these special children who don’t fit in, especially since there are now so many of them. My nephew, Alex, has Asperger’s and my sister raised him as a single mom while working full-time. Her biggest issue was the cruel way her son was treated by many of the teachers and schools he attended.

    Trusting intuition is the essential ingredient that makes all the difference! I salute you and your family and wish your son his highest dreams!

    • Victoria, I had no idea that we shared a similar journey. Thank you for the beautiful sharing about your own journey with your son. It truly touched me how you helped your son find his way through life’s maze, and your choice to not have him diagnosed. There is no clear picture of how they are to fit into our world. I believe that we need to learn to go into their world. We are the ones that need to change. Miles is truly blessed to have you as his mother. I truly appreciate your sharing with us. Wishing him amazing life opportunities. xoxo

    • wow Victoria, I had no idea either, well done you for watching out for your son all these years. You are an inspiration before I knew this now I am bowing with utter respect for what you and Suzanne have gone through. I feel blessed to have met you both.
      suzi recently posted..2 ways to draw, which way do you see?My Profile

  7. Suzanne, your insights are so touching.Being a mom is not always easy! Thank you for sharing your journey. Blessings, Nancy
    Nancy Lennon recently posted..Shining Light, a gift for youMy Profile

  8. What a lovely post Suzanne. I so appreciate and respect the thoughtful way you reflect on your life’s journey and honor the shifts you’ve made as you navigate the path. You are a shining light and a blessing.

  9. Inspiring…your way if life, your words, your love for life!

  10. grateful for the grace and wisdom you share here, Suzanne;
    it’s a beautiful journey and i love the rest you’ve found.
    -Jennifer
    Jennifer Richardson recently posted..enough to just be….My Profile

  11. I’ve often heard it said that our children are our teachers, such wise words. You have been given a beautiful gift Suzanne in your son. From this life experience, you will have learned and grown in so many wonderful and amazing ways! Love and hugs!
    Belinda Rose recently posted..Changing Your Perception Will Change Your LifeMy Profile

  12. I am SO happy to hear that you and your family are all at peace and that you are getting to focus on your self. Such an amazing journey I am sure!

    XO
    Renee Savoie recently posted..BeYOUtiful Souls Art RetreatsMy Profile

  13. I was sent a link to your blog by a friend. My son (3yo) has just been diagnosed with Autism 3 weeks ago. We are still in shock, but not entirely surprised. I am grateful to have found your blog and will be browsing your stories for sometime to come. Hugs & Gratitude xx Dion.
    Dion Dior recently posted..Celebrate AdventureMy Profile

    • I’m so glad that your friend shared my blog post with you Dion. I understand totally what you are going through right now even though it was 20 years ago for us that we were exactly where you are today. It’s not something that gets forgotten very easily. I hope that you will drop by again and that somehow what I will share may help you in some way. You are inspiring me to write more about our experiences from over the years. Love and Blessings to you and your family. xoxo

  14. Each day is a new day. Your family certainly has taken on its share of challenges this lifetime, but with extra challenges come good rewards. You are stronger for them. Thank you for sharing your life, Suzanne. Like Dawn said, your sharing has helped many.
    Amy Putkonen recently posted..Are Your Spiritually Competitive?My Profile

    • Amy that is so true, life challenges make us stronger and through that come the good rewards. For us, I have found over the years when our son learned something new we were over the moon happy and excited. Its been an extremely challenging journey at times, but one that has been filled with many blessings along the way. Its gotten much easier to see the many gifts that came with it.

  15. Barbara Michel says:

    What a wonderful and inspiring post! Your family’s journey offers wonderful insights to all about living in the questions and ultimately finding the answers within no matter what the obstacle…I wish I could think of the wonderful quote that idea comes from!

  16. April 2nd, 2007 was the day two of our boys were diagnosed. The next year, April 2nd, became National Autism Day. Very bittersweet for us.
    I totally relate to you post. I understood it completely.
    We are in the middle of our struggle with schools to get our boys the help they need. This past April, one of our boys lost his IEP. We are fighting to get it back for him. That is not much fun.
    I can’t imagine what things will look like at the 20 year mark – 2027. At this part of the journey for me – it’s day by day, week by week, etc. I suppose that is the way it is when you’re raising kids – but I worry more about my two boys, than my other two at this point.
    Jennifer Ebeling: 6ftmama, Master Gardener & Blogger recently posted..SG501: Olive Oil and Balsamics Epicure Terri Chaffer, Oilerie Maple GroveMy Profile

  17. Double gulp as I read what you shared Jennifer. I cannot begin to imagine what it must be like to have two of your children diagnosed on the very same day. I am very happy to hear that you totally relate and understand what I wrote about.

    I know all too well the struggles and battles with the education system to have our children educated. Been there, done that. I truly feel for what you are going through. I wish for you to have everything come to you that your sons will need so they can learn and get the education that they both need.

    It is very hard to imagine 20 years down the road. I never thought that 20 years would ever come this fast for us. When you are in the midst of the busiest time of your life with your autistic children like you are right now you cannot see beyond today sometimes. Just allow yourself to be in the present as much as you can if I can offer you that one bit of advice. That will help you tremendously. I was constantly worried about my son’s future and wondering what might happen then. Today I am living more than ever in the present, and WE are all much happier because of that conscious choice. I hope that you will drop by again. I would love to have you come read what I have to share about our journey with our son. It is my wish that what I share might help other families with children younger than our son.

    Blessings to you and your family. xxoo

  18. Leanne Strong says:

    Can you please write one about Autism and rigid thinking? Or how about one about what to say or do (or what not to say or do) to people with Autism?

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