Hope for the Future

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At work I heard one of our patrons talking to another patron about a family member’s involvement in Special Olympics. I politely and enthusiastically interjected that I have a 4 year old with Down syndrome and am looking forward to when he’s old enough for Special Olympics. She smiled a knowing smile, said she was talking about her son, and that he also has Down syndrome.

I asked if he had ever come in to the library and she said he had, and I instantly remembered feeling encouraged one night by overhearing a man with Down syndrome tell another librarian that he had to pick up some holds. He arrived and left the library on his own. I didn’t leave my post in the stacks to go meet him (I still tend to be shy about that sort of thing) but I was grinning from ear to ear. Most likely this had been the woman’s son (it’s not a large town).

As she continued talking to her friend, I couldn’t contain my questions. I interrupted to ask how life was at the time he was born. She described the doctor handing her her newborn son and saying, “Oh, he’s mongoloid.” (Yes, that was the terminology used for Down syndrome until the mid-1960s.) The doctor went on to tell her that her son would not live very long, and if he did, he would spend most of his days sitting idly in a corner.

We talked about school, and she said that her son was in one of the first preschools offered for kids with disabilities in their area. She said how cute he was riding to school in the little van.

I asked if he lives with her, and her answer was inspiring. Her son recently moved into an apartment. Alone. Her friend had asked if he would get lonely living alone, and she said that her son had already chatted up everyone in the apartment. He has a job at a fitness business, and she said he gets along wonderfully with all of the people there.

It makes me so happy to hear stories like this. It doesn’t matter to me if Kyle wants to live with us forever, but it is encouraging to know there are adults with Down syndrome who do well living alone, living with roommates, living in supportive group homes, and living with their parents.

There are many meaningful jobs for adults with Down syndrome too. They make a difference in this world, and add joy to the people around them. I went to visit my grade school classmate’s brother after I found out he had been working at the public library in my hometown for over a decade. He works in the children’s area, and is one of the most popular storytime leaders. When I talked to him, he was attentive and articulate. Having a conversation with him felt no different than one with a person without Down syndrome.

And as I have mentioned before, many things have changed in the realm of early intervention and schooling. When the woman from the library had her son, she said people did not even attempt to teach kids with Down syndrome. Her son was luckily born when those attitudes were starting to change.

Both encounters left me bursting with hopefulness. I don’t know what Kyle’s future will be like. He is delayed, but makes strides and slowly is acquiring the same skills as typical kids. If he needs to go to high school until he is 21, he can. If he wants to go to college, there are programs available for him. If those programs are available now, I can only dream of what will be available 15 years from now. The sky’s the limit, and I’m walking on air.

teaching puppy

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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

0 thoughts on “Hope for the Future

  1. tanjoven

    Great post! I know that the Gigi’s Playhouse near us has programs for adults now too, which they recently expanded into the past year. They have mentor and training for adults with down syndrome. They also have internships at their Hugs and Mugs store. I spoke with an intern this past summer and felt like it was just like any other conversation I would have. I wanted to ask him more questions like you mention in your blog, but i didn’t have the time (or probably the courage you did). I wonder if it makes people uncomfortable to talk about their lives on the spot like that. I had a cashier at the grocery store who was hearing impaired and a couple of baggers also who seemed to have some kind of disability (not sure what the PC term is these days). I am always curious to ask them more questions, but never find the time or courage to do it. So glad you shared your story! Thanks!

    Reply
    1. Katie J.

      Thanks so much for your comments! I still hesitate to talk to strangers with DS. I guess it’s easier to talk to their mothers since that is who I identify most with right now. You are lucky to have a Gigi’s Playhouse nearby! From what I have heard, many people with disabilities would rather others ask the questions than wonder or make assumptions. I’m with you though, I don’t always have the courage. Thanks for reading!

      Reply
  2. Sarah Michelle Miller

    Love this post! Love when hope finds us. It’s so hard not to now what the future will hold for our kids. Sometimes I wonder if it’s actually a special gift to us – something that forces us to take life day by day, to trust in the grand plan, and not waste time planning a future for someone else who, would end up having completely different ideas about what they want than us anyway like most kids usually do! It’s so hard to trust. It’s so hard not to walk around a big ball of anxiety all day today because of something that may or may not happen in 15 years. I think that most people don’t get to grow and develop in this area like we are being asked to. At least this is what I tell myself, and it does calm me to a certain extent!

    Reply
  3. rosemaryheddens

    What you are writing about sounds so similar to our situation. My daughter is 39. She lives by herself and has a very good job at Costco. She is financially independent and has a huge nest egg saved for her retirement. Needless to say, we are so very proud of her. Kirstin is an avid reader. She had to get a Nook so she could get books on demand. She has a wide range of reading interests. Kirstin grew up at a time when there were little expectations for her future. Your son will have so many more opportunities and choices in his life. You might enjoy reading our book. It is called This Little Light of Mine, A woman with Down syndrome shines brightly in the world. Kirstin wrote a portion of each chapter. I think you will find her comments enlightening. The book is available on line at Amazon, Barnes and Noble, etc.

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