Home > In Their Own Words > In Their Own Words – Expectations

In Their Own Words – Expectations

This “In Their Own Words” essay is written by Erin Perry. Her son was diagnosed in March of this year. You can read more about Erin and her family at their website Autism Village.

Life is full of expectations. From the minute we all enter the world, we are expected to do things like walk, talk, go to school, have a first kiss, graduate, get a job, have a family – the list goes on and on. So entrenched are these expectations that we live our lives by them, become upset or disappointed when we don’t meet our own (or more likely when other people don’t meet ours) , and we judge others according to them. Expectations are a powerful tool – but when you have a child with autism, in an instant every expectation you once had, is ripped away leaving you feeling raw, vulnerable, and frankly, scared.

I have always been a very driven person. I expect a lot of myself, and I expect a lot of others. So when I found out I was pregnant, I built up in my head what my life would be like with a child. I imagined taking family vacations and watching my son play sports. I thought about  the late night conversations we would have when he came home too late for curfew. I expected that it would all be typical, normal, and even (dare I say) easy.

With Brayden’s diagnosis, I have learned there is only one thing to expect – the unexpected. The first adjustment I had to make was letting go of those later in life dreams, for now. No more thinking about college and grandkids – my son lives in the moment, and I had to learn how to alter the way I thought to only include the immediate future. Instead of looking forward to college, we work with every breath to hopefully get Brayden to kindergarten, and maybe even in a mainstream classroom, but that is about as far in the future we go.

On the other side, when we heard the final diagnosis of autism, certain expectations also go along with it. It’s the long list of things your child may not and will not ever do. But that’s the funny thing about autism – just when you expect your child to never do something, he will blow away that expectation. My child has a frequent habit of doing  just that. For me, I believe it’s his own little way of saying, “See, mommy, I can do it – keep pushing, keep going.”

Today at Brayden’s new developmental preschool, he sat in a classroom full of seven or eight of his peers, and when the teacher sang “Old McDonald had a…” and stopped, waiting for one child to shout out an animal so the song could continue – my son screamed out, “A COW!” For those unfamiliar with my son, he very rarely says anything without a prompt by an adult to do so. What most people would expect a child of 2 1/2 to do naturally and easily…turned out to be the best unexpected surprise of my day – and another little moment that whispered in my ear, “Keep going, Mommy.”

When Brayden was diagnosed, we expected many things that never came true. We expected to have a better support system, we expected insurance would cover therapy, we expected that people would be accepting of our son. But when our support system crumbled, insurance wouldn’t pay, and people started judging our son and us – other, more positive things, have filled the damaged parts of us. We never expected the support and kindness of so many strangers. We never expected so many people to reach out to us the way they have – and fill our lives with hope again. And we never expected people to be willing to give up time, money, thoughts, and prayers – all for our little boy.

So while we now are learning to let go of expectations – it is these positive unexpected things – that make me still have faith in the world (as cliche as that sounds), and push me to keep going for Brayden every day.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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  1. July 28, 2010 at 10:57 am

    Great post!!! I agree and have had similar thoughts :) Best of luck to you and your family, here’s to learning to expect the unexpected!!!!

  2. July 28, 2010 at 12:06 pm

    So very true. I get remarks from others about what my granddaughter probably won’t ever be able to do and at this point they slide off. I know the things she CAN do, and that she’s not interested in doing some “typical” things. I also know how hard she has worked and how far she has come, and that no one can really know what the future holds. She too, lives in the now. And while we do have to consider the future, it is only in the now that we can actually do anything to help her.

  3. July 28, 2010 at 12:23 pm

    WOW! That’s about all I can say as I feel like you just took my life and put it on paper. My son just turned 4 last week and was diagnosed over a year ago. Thank you for your words of honesty, as well as words of encouragement about those precious moments like your son had with saying “a cow” with no prompts!

    • July 28, 2010 at 3:24 pm

      Thank you to Autism Speaks for posting my blog. I continue to be amazed at the love and support that exists in our community! I cannot express my gratitude in words.
      @laurie – Best of luck to you as well!
      @Shelia – the sky really is the limit, isn’t it? No one knows what the future holds – I like to think we will continue to help our children write their future until they can do it for themselves. I believe they all have amazing stories to tell and futures to pursue!
      @Melissa – I am so glad you identify! Autism can be so lonely sometimes…I find that acknowledging the little things, and connecting with other parents help me through! – Thank you all for your kind words!

  4. July 28, 2010 at 6:02 pm

    Low expectations never benefit anyone, especially a child on the spectrum. My son has achieved every milestone they told us he would never reach when he was diagnosed at age 3 (he’s 9 now). I have come to realize that my son does things his own way, in his own time. And I am so perfectly ok with that – ending up proud and amazed by every milestone, no matter how small. Because to a child with autism, those small steps (a word, a gesture, a connection) are leaps. And my heart leaps with them.

    http://www.facebook.com/pages/Words-4-Autism/323956325331?ref=ts

  5. Jennifer
    July 28, 2010 at 8:04 pm

    When people ask me what do I see my daughter doing after high school, I always tell them that I have no idea. I have no idea how far she will go. If you would have told me 10 years ago she would be doing the things she is doing now (coming home and letting herself in the house, happily folding laundry, being totally responsible for her own self care, making pancakes from start to end, cleaning up and everything)I would have said, “No way.” She has become the most delightful young woman. She amazes me everyday. She has changed me completely.

  6. Angela
    July 29, 2010 at 12:01 am

    Erin – I am so proud of you and your family and especially Brayden. Your love and perseverence are paying off

  7. July 31, 2010 at 11:09 pm

    This is a great article!

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