From Emma’s Granma

“I have four grandchildren, and the youngest is Emma.  She is a beautiful blond with blue eyes and a sparkling smile, she skis like a pro, she swims, she climbs the climbing wall at the rec center, she balances on the back of the sofa (while her granma shudders in fear that she might fall), she sings with near perfect pitch, and she is autistic.  When I was growing up such children would have been hidden away.  Anyone who encountered them would have avoided them, other children would have teased them, or worse still, abused them.

My husband spent the last ten years of his life in a wheelchair.  He told me that in social gatherings people avoided him because they didn’t know what to say to someone who was so obviously disabled.  Today men and women in wheelchairs compete at the Olympics.  They race on prosthetic limbs, those who are blind ski with Challenge Aspen.  I have a friend, one of the founders of Challenge Aspen, who skis in a specially designed chair.  She tells me that she skis better now in that chair than she did eighteen years ago when she had full use of her limbs.

Scientific research, skilled therapists and loving families have helped all these people achieve a potential that would have been denied them eighty years ago when I was born. These people are actually lucky because their disabilities are visible, and so scientists and skilled therapists have been funded with the means to investigate all avenues that might lead to improving their lives.

Autism is not visible, but inside of Emma there is also a person yearning to be understood, to be able to communicate, to tell us of her fears, her frustrations, her desires.  She too wants to be  treated with understanding and compassion.

In the family room we have a stage with a curtain.  Emma loves to draw back the curtain and sing and, as her father says, strut her stuff as if to an enormous audience.  One day she too will reach her potential.  One day she will step down from that stage, her inner person will emerge, and she will still sing like an angel, but also she will speak with clarity, she will laugh with us, play games with other children and be able to step off into the future with confidence.

Such is our hope.

But even if none of that turns out exactly as we might wish, one thing is certain, wherever she goes, however she behaves, she will walk in beauty, surrounded with love.”

To see a survey that my mother participated in on the effects of autistic grandchildren and their grandparents, go to:  http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_apr_2010

6 responses to “From Emma’s Granma

  1. Such a beautiful letter. Thank you for writing this. The impact an autistic child has on the whole family is profound. I will add the link to the grandparents survey so anyone reading your letter might look at the survey too. With all my love,
    Ariane

  2. This should be filed under the “not safe for work” category, says I, with tears streaming down my face and makeup smudged.

    Clearly that beauty is family-wide.

    Thank you for posting.

  3. This is an amazing letter. All your posts are wonderful but this got to me as a near member of the “disabled” community. The idea that people used to be sidelined and now walk among us TEACHING us about our common humanity. It was a joy to meet your mother. Those sparkling intelligent blue eyes that you ALL have.

  4. After having lunch with Amanda, I opened this website last night. I had told her about going to visit my grandson who is 5 and has been diagnosed with autism syndrome. He had been suspended from school for the day on monday for not following rules. Emma’s Hope Book is so eye opening for me. Thank you all for sharing.

  5. Paula from Aspen

    One of the wonderful unexpected benefits of having a blog is that we can communicate with you whom we cannot see. Thank you for responding. I must confess to more tears when I read what all of you have written.
    And Astrid, these heart-breaking things will happen to our grandchildren and we will wonder how can anyone not understand that autistic children do not understand rules, let alone be able to follow them? But we must continue to hope, to smile, and most of all to give loving encouragement.

  6. Thank you, Paula. I will always hope, smile and give encouragement. I feel so fortunate to have that special bond with this grandchild. He is beautiful as are all children, but those who are more fragile will always have a special place in my heart. The opinionated adults have no idea what they are missing in life.

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