To My Fellow Caregivers in the Waiting Room by
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(87 Stories)

Prompted By Caregiving

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Cartoon by Marcia Liss

Some of the most loving people I have ever seen are the parents and caregivers in waiting rooms of speech pathologists, occupational therapists, play therapists, physical therapists, and almost any place that works with children who have disabilities. Waiting can be very challenging for these children. Sometimes the kids scream, cry, throw toys, have tantrums, or act aggressively. Having waited in these rooms as the grandparent of twins with special needs for many years, I have witnessed countless acts of kindness, patience, empathy, and love.

Some of the most loving people I have ever seen are the parents and caregivers in waiting rooms of speech pathologists, occupational therapists, play therapists, physical therapists, and almost any place that works with children who have disabilities.

I have watched adults sing or read stories to kids to keep them calm. I have witnessed tender moments filled with lots of hugging for some and calm words of endearment for others who don’t want to be touched. I have held the door for people juggling walkers, wheelchairs, and wiggling younger siblings. I have seen people with their own challenges to manage offer to help others with theirs. I have smiled to see parents glow with pride when the therapist emerges at the end of a session to share even the smallest kernel of positive news.

The National Center for Learning Disabilities once ran a contest for parents, asking them to submit their stories in just six words.  They received nearly 2,000 entries. Here are just a few:

  • He succeeds when given the chance
  • She sees life in amazing ways
  • Two autistic boys, twice the love
  • Not a puzzle piece, a person
  • Hope today, fear and worry tomorrow
  • We will always celebrate little miracles
  • Our strengths, not weaknesses, define us
  • Parent: motivator, advocate, cheerleader, “squeaky wheel”
  • We have the courage to believe
  • Our differences make us all unique

The last one is one of the important things those of us who share waiting rooms learn. Unique. Different. And yet valued and accepted. When one of my granddaughters was three, we often sat together on the floor of a waiting room the size of a closet while her big sister went to speech therapy. I would never trade those precious moments we spent together. Sometimes we colored, drew, played cards, or read books. Other times the therapist loaned us little animals and she created elaborate stories with them. The other adults who shared this tiny space with us were awesome. They always had something nice to say about both of my granddaughters as they waited with and for their own children.

I especially remember a mother of two boys with autism, one of whom was a teenager.  While they waited for his younger brother, she worked very hard to engage the older boy, who would sometimes make loud sounds. With everything that was on her plate, the mother worried that he was frightening my young granddaughter. To the contrary, he was teaching her a valuable life lesson. Like most children her age, my granddaughter noticed the boy was different but had no negative association to his behavior. Seeing him receive love and attention from his mother and being able to talk about his behavior in a matter of fact manner helped her develop empathy. She learned that, even if he yelled and made strange sounds, he was someone worthy of love and respect. Years later, as a seven-year-old, she wrote this in response to Martin Luther King’s I Have a Dream speech:

“My dream for the future of the world: I wish people with disabilitys [sic] could do things we can do. I wish it in my heart because my sisters have disabiltys and I love them with my heart. Having that would be a lot to me. I wish, I wish.  People with disabilitys can’t make friends easily. I want to fix that and talking easily. I wish, I hope, I have a place in my heart for it.”

 My young granddaughter learned a lot about what really matters in that tiny waiting room. And so did I. For me, the six words that best describe those parents and caregivers in waiting rooms are, “We shall travel this road together.”  And if I had to choose just one word, it would be love.

This is an excerpt from my book Terribly Strange and Wonderfully Real .I invite you to read my book and  join my Facebook community.

Profile photo of Laurie Levy Laurie Levy
Boomer. Educator. Advocate. Eclectic topics: grandkids, special needs, values, aging, loss, & whatever. Author: Terribly Strange and Wonderfully Real.

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Characterizations: moving, well written

Comments

  1. Laurie, this piece is lovely. Your daughter and granddaughters are so lucky to have you.
    My nephew Michael is autistic, and I remember my sister telling me she was counseled to understand that although the journey she, her husband and Michael were on was not the journey they had expected, it was another journey they would now take together.
    Sadly my sister became disabled herself, and I write about her this week.
    Thanx Laurie for the reminder that we all have burdens to bear and they all can be enlightened with love.

    • Laurie Levy says:

      Dana, I did take a quick peek at your story in draft form but will read it more carefully tomorrow after I recover from our weekend with the Indiana grandkids. I hope all of the children and young adults on the spectrum find ways to live happy and productive lives. One of my granddaughters with severe language disabilities just sung Taylor Swift’s “Mean” in her special education school’s talent show. So proud of her.

      • Thanx Laurie!
        My nephew unfortunately is on the low end of the spectrum, and is now in a group home in what seems a wonderful placement in Rockville, MD where his father lives.

        I’m glad to hear that your granddaughter is in a much better place, literally and figuratively and is nurtured by a loving family.

        Unfortunately my sister’s story is both sad and ugly and I fought my brother-in-law in court for my sister’s guardianship. When we’re next in Chicago or you are in NY (if we can ever travel safely again!) I’ll tell you the whole story over a glass of wine!

        • Laurie Levy says:

          I would love that, but for now I fear we are all grounded. A case of coronavirus cropped up in the Indiana school, system where my grandkids go to school. My granddaughter has cystic fibrosis so I guess she’s one of those Trump doesn’t care about because she has an underlying condition. Luckily, the school system shut down for 10 days and then through spring break. The kids will do e-learning. My granddaughter is doing amazingly well living with CF. She’s a long distance swimmer and runner. Great lungs on that kid!

  2. Coincidentally I just finished reading this story in your book, Laurie, and am again moved not only by your compassion and intelligence but by your personal experience. Your family and community have been so fortunate in having you as a member! This is as good a time and place as any to tell you how much I’m enjoying “Terribly Strange and Wonderfully Real,” although I’m not sure “enjoying” is exactly the right word. You’re a gifted writer who takes her readers through the ups and downs and ins and outs of life in such a relatable way that it sometimes hurts. I’m in awe that you found your calling in so many ways. Thank you for sharing your journey!

  3. Suzy says:

    As always, Laurie, you are so wise. We at Retrospect are lucky to have you in our midst. This was very moving, and made me think about things that had never occurred to me before. Thank you for sharing it here. Now I certainly need to read the rest of your book!

  4. Marian says:

    Laurie, your story made me want to give a shout out to all those parents, siblings, caregivers, and professionals who work with special needs kids. I’m so glad that we are more enlightened today and kids aren’t treated as badly as they once were. It’s been so rewarding to see the children of some friends of my stepdaughters. One has autism, the other, who was adopted, has fetal alcohol syndrome. Their devoted parents and community have helped them to lead happier, more productive lives as they have reached young adulthood. A very upbeat story!

    • Laurie Levy says:

      I am hopeful about the younger generation, Marian. Many more of them show kindness and empathy for differently abled peers and peers confronting gender and sexual preference issues. My granddaughter who was so compassionate about people with disabilities as a young child now calls herself an ally. Too bad our President models such opposite values.

    • Marian, It’s good to hear the happier special needs stories.
      I have a severely autistic nephew Michael now in his late 20s. My brother-in-law is difficult and my sister was disabled herself, and for years Michael was not getting the intervention that could have helped.. Now thankfully he is thriving in a group home in a good program with a caring guardian. I’m thankful for small blessings.

  5. Betsy Pfau says:

    What a lovely story, Laurie! I sat in an OT waiting room for several years while my Asperger’s child was in the gym. I agree, it was an eye-opener. I frequently sat with the owner (or his then-wife) of the Boston Celtics, who have a blind son and was in the gym at the same time. They were always pleasant, as we chatted. Disability does not spare the wealthy.

    The caregivers in my mother’s nursing home were absolute angels. No matter what how much abuse they took from the aging and demented patients, they never lost their cool, were always kind and patient, and always exceedingly pleasant to me. They were SO special and I told them so in my mother’s final days. Even after she passed, when I went back to help the activity and music directors, I’d go visit, show them photos of my kids, ask how they were doing.

    Thank you for pointing out the influence of modeling kind behavior as caregivers to others.

    • Laurie Levy says:

      Thanks, Betsy. There are so many unsung heroes out there who do their jobs with dignity and compassion and who make the best of less than ideal circumstances. When you care for someone with a disability, you learn to celebrate the small victories.

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