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On “Happy Feet,” “Retarded Teeth” and Carnival Goldfish

win a goldfish
Creative Commons License photo credit: bradleygee

On “Happy Feet,” “Retarded Teeth” and “Carnival Goldfish”

From 1986 (Aaron 12 years, Tommy 10 years)

Carnival Goldfish

Last year at our PTA school carnival, my son Tommy, after numerous tries, threw the ping pong ball in the little glass bowl and won a goldfish. He was thrilled. I was busy working at the Magic Show and was hardly enthusiastic about his new transparent fish in the baggie.

Tommy named the fish “Red and Gold” after the red spot on his back. He wanted to immediately buy a 100 gallon tank, fish food, colored rocks, etc…. We compromised on an old glass and the promise that “if it lived” we would get the needed supplies. As we went to bed we talked about how our friend Billy’s carnival goldfish didn’t survive the first night. We talked about how it would be sad if his fish died, but we would flush it down the toilet. We talked about a friend’s dog that had died and how there was a life and death cycle and only the strongest would survive.

At 5:00 AM a jubilant Tommy raced in with “Red and Gold” still swimming in the glass. Being a tired (it was 5:00AM) and realistic mother I said, “That’s good so far, but don’t get your hopes up.” We fed the fish stale bread for a couple of days because I didn’t’ want to waste $3.00 on fish food. Every day after school, Tommy would race in to check on his “Red.”

Philosophically I had always felt it was more important to put our energy into helping people. I found it difficult to accept that some pets are treated better than people. I had zero expectations this fish could be healthy. Zero expectations its very existence could be meaningful to Tommy. Zero expectations, except that if it did survive it would be just one more responsibility for me. I really just wanted the fish to die, get it over with.

Happy Feet

This same week, we had an appointment with the orthopedist for my son Aaron. Aaron has the labels of autism and intellectual disability; some doctors have also said Cerebral Palsy and extremely flat feet.
The orthopedist walked in the examination office with several interns on his heels. Without even acknowledging the fact that Tommy, Aaron, my husband and I were in the room he spoke into a tape recorder while the interns were taking notes. “Here is a white male, appears to be about 10, with a (something or other jargon…surgery on his ….” He continued for another 3-4 minutes, poking Aaron in different parts of his foot, legs and hips to test this or that reflex.…. He never gave eye contact to Aaron or any of us.

Nervously, Aaron began biting his hand.

At this point, my husband walked over to the Doctor, extended his hand and said, “Hello, I don’t believe we’ve met.” This took the Doctor off guard and he turned off the tape recorder. In the give and take of the next few minutes we explained our concern for Aaron’s gait and balance. We demonstrated the exercises our physical therapist recommended. Did he say Aaron needed surgery? Did Aaron need a new prescription for his shoe inserts?

Instead of answering our questions the Doctor turned and asked me, “Is he happy?”

“Is Aaron happy?” I repeated, not quite sure what the Doctor was asking. I fumbled out an answer of how we try to make Aaron happy. Then the Doctor said, “It would be very difficult to get Aaron to understand surgery, orthopedic appliances, etc., so let’s not upset the apple cart and do anything to his feet that would make him unhappy.”

Retarded Teeth

My friend Susan, also “severely challenged” went to the dentist. At 13 she still had her baby teeth. Her mother was very concerned because her permanent teeth were crowding her mouth but the baby teeth weren’t falling out. The dentist brushed off the concern. “Why bother, she’s retarded, just let her have two rows of teeth. She’s not going to ever be prom queen.”

We actually know a man with Down syndrome whose parents were told their son would die before he was 6 years old. When he was 10 and his baby teeth still didn’t fall out, the dentist told the parents it was not worth putting the boy through the discomfort of getting his teeth pulled because he wouldn’t live very long. Well, the man is not 56. He still has the two layers of teeth. His baby teeth were never pulled. And now, he has impacted teeth which give him much pain and he has to have all his food cut into tiny pieces or pureed.

No Expectations

I wish these were isolated stories.

When I worked at the Parent Center, every day we would hear of people with disabilities being denied communication devices, tubes in their ears, surgery for tight leg muscles…because there were no expectations, no intrinsic worth or value to their lives.

“Red” is fine, but my face is red.

At Tommy’s persistence, we eventually bought a real fish bowl and real fish food. Even though “Red” is totally dependent on Tommy, I’ve watched Tommy feed him and change his water, proudly introduce “Red” to his friends and alternate dropping his GI Joe men into the fish bowl to give Red some variety in his life.
An animal that can’t walk, talk, jump or play–“Red” had given much to Tommy. In spite of my initial prejudice and negative attitude, “Red” has become a valued part of our family.

It embarrasses me to think I made “Red” prove his worth before I would meet his basic needs of more space and real food. Nothing was wrong with the fish. I was the one with the problem.

Happy Ending

This year’s Carnival was yesterday. Tommy sang Happy Birthday to “Red,” and guess what? Tommy spent his first ticket winning a playmate for “Red.”

Comments:

Anyone else want to share an embarrassing story about low expectations, surprises? Have any of you had similar experiences with anyone in the medical professions? Schools? Community?

Keep Climbing: Onward and Upward

All the Best,
Mary

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32 Responses to “On “Happy Feet,” “Retarded Teeth” and Carnival Goldfish”

  • Jaclyn says:

    Hearing stories like this make me so sad. I was friends in high school with a boy named Dustin, who had a mental disorder of some type. I was always nice to Dustin, and everyone treated him great at my school. Dustin ended up winning homecoming king. It shows you that it people can treat everyone the same, and someone with a condition like Dustins CAN end up as king.

    • Mary says:

      It’s wonderful that the students in your school saw Dustin’s gifts and strengths. I’ll bet he was so proud. Plus, it says a lot about the students in your school. There are so many everyday successes, we just need to hear about how high school students are caring and learning how to be good citizens.

  • Nuriya Gavin says:

    Stories like this are devastating and heart breaking. Because of my brother’s Down Syndrome he has medical complications. He had heart surgery when he was very young, his tongue is also a bit enlarged and needs to be shaven down, he has hip problems and I could not imagine being told their was no point in perform any of the corrective procedures to hep improve his quality of life. Its just wrong. People with disabilities are full citizens and deserve the right to the same quality of life and access to resources that will better their quality of living!

    • Mary says:

      The good news is parents are savvy and can figure out ways around most situations. Bet your family also has lots of stories and how they beat the odds. Thanks for sharing Nuriya.

  • Ian Silver says:

    I had a little trouble understanding the theme of each of the stories. There is a reason why you put them on the same blog.. What do they have in common? How do they relate?

    • Mary E. Ulrich says:

      It’s all about people’s expectations–the doctors wouldn’t treat Aaron and Jenni because they were “retarded” and the doctor didn’t want to waste his time so he told them they didn’t need services (even though each of them had the dental and orthopedic services from other doctors) and the carnival goldfish was my admitting I didn’t have high expectations for Tommy’s goldfish and they both surprised me. Okay?

  • mary says:

    I can feel your emotion boiling up. 🙂 I wish you were there Alli, it would have been great to watch you do battle like a seasoned advocate.

  • Alexa Miller says:

    I just would like to comment on the “Happy Feet” and “Retarded Teeth” stories. I am just blown away by the unprofessional words that came out of both of their mouths.

    Concerning “Happy Feet” that was so rude of the doctor to come in and completely ignore you, your husband, and your son. I think that is ridiculous. The doctor should have talked to you right when he came in to try to better understand the problem. When the concern was addressed, all he asked was, “Is he happy?” If Aaron needed help with his feet, he should have been helped by that doctor!

    In regards to the “Retarded Teeth” story, I am also in shock by the actions of the health care professional. He/She didn’t help at all because the patients were “retarded” and he/she didn’t want to upset her. What?! Obviously two sets of teeth is not a good thing. I am not a dentist, but I can tell you that much. Who is a dentist to say that the child is going to die soon anyway so there is no point in fixing it? The dentist obviously does not know this. No one knows when they are going to die. That is just so unprofessional. It should not have happened like that.

    These stories make me so frustrated. I don’t understand how professionals that many people look up to can get away with acting like that! That is NEVER OK.

  • Davin Cunningham says:

    Very interesting stories I must say I share the same opinion as you on the goldfish my little girl made me buy all the rocks and a tank and of course the fish died. The story about Aaron’s visit to the doctor had to be one of the most shocking situations that could have happened because generally doctors always introduce themselves first and would ask you if its ok for interns to come in the room all those very violations just make this visit all wrong. I can’t even imagine the conversation you and your husband had after you left the doctors office. These very different stories all tie together how life has those moments that you have no words for at the time they are happening but when you look back you think boy at that moment I felt some kind of way now I can look back and just laugh.

    • Mary says:

      You’re right Davin, some of these experiences are best just laughed at. Bet you have some of your own stories with your family. Guess everyone does.

  • Mary says:

    Hi Abby, Ask your mom if she remembers the “fair fish”–wonder what you will do when you have little ones?

    Some of the best people in Aaron’s life have been speech pathologists. I feel like they got under Aaron’s skin and actually got to know him. Best always.

  • Abby Recker says:

    I do not have any stories of my own, but as a child I had the same encounter with my mother not wanted to fully accept my “fair fish” until it stayed alive for a little while. I am shocked by the responses of the doctors. It is sad to see that people out there view the lives of those with disabilities with such little concern. It is people like that who hold people with disabilities back because there is no way for them to be equal if people with authority will not treat them like regular patients. Stories like this make me look forward to being a Speech Pathologist.

  • Kara Detty says:

    I really thought that this article was interesting and I never really had that perspective on life beforehand. Here I am, similar to you, fighting for equal rights fro humans but often times we expect little things to prove themselves to us and to do something irrational to deserve their respect. I really liked the article.

    • Mary E. Ulrich says:

      Glad you liked the article. Also glad you’re working on our side Kara. It will take each of us working as best we can, one day at a time, doing what we can.

  • Expectations — and education — are the key to everything, I think. I am so thankful to families like yours for paving the way. Because of your advocacy and effort, our road hasn’t been nearly has rough. Both of my children have Tourette Sydrome amongst other neurological impairments. We spent most of elementary and middle school working to educate the adults and children around them, and to “manage” expectations as best we could. The one event that sticks out in my mind occurred when my son was in 3rd grade. He was in the local Children’s Choir and on this day, the kids traveled to 3 different schools around the county to perform. At the first two schools — a charter elementary and a public middle school — the students seemed glad to be out of class, but paid very little attention to the choir. They talked throughout the performance and several even sat with their backs to the choir. Our kids noticed the rude behavior. Their final performance of the day (after lunch when everyone was tired) was at a public high school for kids with severe special needs. When our singers arrived, the auditorium was already packed with well over 200 excited students. As the kids started to sing, the audience joined in. Some sang, others rocked and clapped, a few even got up and danced. I saw a room full of joy — an audience fully engaged in the performance. Unfortunately, the choir director was appalled. She hurried their program and ushered the kids back onto the buses as quickly as possible. Several of the kids were frightened because no one had talked them ahead of time. My son, however, left the event grinning from ear to ear. He heard the melody in the moans and saw the rhythm in the rocking. Having spent so much of his young life helping people see similarities rather than differences, he saw the same joy I did. He will soon graduate high school, and continues to advocate and educate — for himself and others.
    Lori Sauerwein recently posted..I Am More Than My Disease

    • Mary E. Ulrich says:

      Hi Lori,

      Thanks for your memory. The choir director needed some new expectations and education, eh? Music is the universal language, and different movements and different sounds are all part of it.

      Glad your sons are doing well. It’s wonderful that you said they are learning to advocate for themselves and others. There is much hope in our future.

  • It embarrasses me to think I made “Red” prove his worth before I would meet his basic needs of more space and real food. Nothing was wrong with the fish. I was the one with the problem.
    I love what you said about how nothing was wrong with the fish, and that you were the one with the problem. This is such a great revelation. A lot of people have problems with what people say and think about them, but I love how you go about it with this attitude. The doctor had a problem with the way your son was, your son didn’t have a problem. I know that I tried out for my high school ice hockey team which consisted of all boys, and the coach had low expectations. I didn’t make the team because he said I was too short, but he let a kid that was one inch taller than me on the team. I blamed myself for a little while, but then I figured out that my shortness was the coach’s problem, not mine. I couldn’t help that I was a girl or that I was short, and thinking about it now, I wouldn’t even want to be on a team where the coach had such low expectations of me. I shouldn’t I let some stupid coach get to me and my self esteem, just like your son shouldn’t let that doctor get to him, or the dentist get to your friend.

    • Mary E. Ulrich says:

      HI Audrey,

      We all learn. I hope that coach has now accepted that girls can be valuable members of the team. But, you’re right. Some people are so bound by their prejudice, they miss wonderful life experiences.

      Attitudes are everything. Mary

  • Dan says:

    Lastly an excellent writing about the subject, continue the great work also I hope to learn much more within you in the longer term.

  • El Edwards says:

    I wish these were isolated stories too. But we humans do this to each other all the time don’t we? It’s not just people with disabilities who we expect to jump through our hoops. We expect people to prove themselves before we let them into our world and woe betide anyone who doesn’t conform to our way.

    Great stories Mary. I can’t think of any of my own right now but I’ll be sure to come back and add them if they pop into my brain.

    El x
    El Edwards recently posted..How to get stuff done for superheros that’s you and me!

    • Mary E. Ulrich says:

      Hi El, glad you understand. I think we each have our transformational moment when we question what we think we know are facts. Guess that is part of the change and growth cycle.

      off to check out your blog. Hope you’ll come back and subscribe. Mary

  • Wow, what attitudes! Reminds me of a day in 1983 when I spent the day in a school for children with special needs. They were given the labels, in those days, ‘educationally sub-normal.’ One girl, who would probably have had the label autistic, would bang her head. Over and over. Her head shape was distorted from her banging. She would scream and wail. She was kept by herself away from the other children, in a ‘cage’ with only intermittent human contact. It felt like a scene from a Victorian novel. But at the age of 19, I had no answer or experience and I ended the day and didn’t look back. But I have often wondered what became of her.

    I love the way you tie the two stories together. That’s real storytelling 🙂
    Alison Golden recently posted..Do I Need Special Equipment For T-Tapp

    • Thanks Alison. Sometimes I wonder how far we have actually come. We know better. We just can’t seem to pull it off. I’ve spent lots of time thinking about this. My feeling is that it all goes back to a trained and caring staff. BUT, it also takes supervisors to make sure the staff is doing their job.

      Thanks for the storytelling comment. I’m trying.
      Mary E. Ulrich recently posted..The “R” Word- A Challenge to Bloggers

  • Marti Otten says:

    Mary, All species contribute to the sustainability of a shared planet. The Native American musician, Carlos Nakai is also a storyteller. He imparts the following wisdom to his audience: The two-legged, the 4-legged, and those that fly, all coexist on the planet. We are the stewards of the bountiful Earth. I add, his Great Spirit has spoken.

  • Kathy McMahon-Klosterman says:

    Mary,
    your blogs are powerful reminders of what is important in life. I will use your blogs as teaching tools next semester (when I teach the 256 intro class). As always, Mary, you keep us thinking and moving forward. Thank you. Kathy

    • Mary E. Ulrich says:

      Thanks Kathy, you are such a good teacher it would be an honor to have your students read. I’d love to hear their comments. 256 was always my favorite class, the first chance to get the students on board for inclusion.

      Did you read yesterday’s post on Friendly Fire? You might change your mind:)

  • Thanks. I appreciate your comments. So, any good stories?
    Mary E. Ulrich recently posted..The “R” Word- A Challenge to Bloggers

  • Farouk says:

    i like the post and the whole aim of your blog , keep it up 🙂

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