What One Young Man with Down Syndrome Wants You to Understand
Yesterday I learned a little bit about a man with Down syndrome named Stephen, and his mother, who wished he had never been born. I don’t know much except what I read from a tabloid article written by his mother. When Stephen was very young, about three years old he cried in the night, a lot. He cried for many hours because of…Pain? Confusion? The article did not say, it was not his story, it was his mother’s, so we learned that she also found that time to be painful and even, in her desperation, considered killing Stephen as a solution.
After that Stephen spent several years in an institution. Later, as an adult, but still faced with severe communication issues, he was taken onto an airplane where he refused to sit in the seat and put on a seatbelt. I wonder if that seatbelt in this strange situation reminded him of a restraining device from his past. Again, his story was not disclosed, only his mother’s deep humiliation over the episode.
For me, the complete article was hard to read; some commenters commended Stephen’s mother for her honesty in her confession she wished he had never been born, or even that she should have let him die as a child. Another blogger and mother, Walkersvillemom, detailed the article and asserted that as an advocate, sharing stories and their truths are important, even for those who don’t agree or want to see/hear it in “When the Truth Hurts.”
That’s the thing about truth, it can be different for different people. It’s malleable. And as Hayley Goleniowska noted, this mother’s truth came from a different era.
Still, as I tried to sift through the intentions of both the author and the media source, I worried about the potential consequences of such hurtful words and thoughts, and how those words affect someone I care about.
This mother’s words distracted me, I sighed while re-reading the news on my phone and broke from conversation to interact, instead, on Twitter. So Marcus, asked me, “What’s going on?”
I sighed again. “Oh, bad news.”
Often if I say, “Bad news,” he replies with, “What’s the bad news like?”
Marcus can’t read the news crawl on the screen (too fast and distracting) and limits his Twitter interactions to pictures or words he dictates. I do not want to tell him of these articles, of mothers who feel that their children, who look a little like him, are “better off” dead. That there are people who claim that those with Down syndrome are not worthy of life. I do not want to tell him these things.
But then he surprised me, as he has before and doubtless will again, when he intuitively knew more about the situation than I shared. He looked across the table and said, in his way, “Maken Understand.”
“Maken understand” is the phrase that comes up when Marcus struggles to get someone to understand a word or phrase. After he’s repeated and we’ve repeated and there is an impasse, he’ll throw up his hands and say, “Maken understand!” It is his shorthand for, “Why can’t I make you understand?”
But at this moment, there was no frustration (from him), no other phrase, no other word. So I asked, “Maken understand what?”
“Love,” he said.
Yes, friends, true story. His answer to the situation. There it is.
I stared at him in amazement. Of course, he’s right.
I was angry for the chosen words and for both the stated and implied intention of the media outlet, while my heart broke for Stephen and all of the times he was unable to make himself understood. And yet, my heart also aches for his mother in this, her attempt to be understood. Two separate stories lived together but so far away from understanding. That is pain.
I still desperately want the world to understand that for people with Down syndrome and their families, stories like Stephen’s and his mother’s is not the only story. It is not Marcus’ story. It is not our truth. So we will say again, we wish so, and will continue to try to maken the world understand…love.
There is room for this love, there is room for learning, there is room for teaching, in the end, that is what Marcus and I want you to understand.
I’m reposting this, originally written and posted in October of 2014. I have refreshed it as part of the Love Blog Challenge hosted by Belle Brita. The Prompt for today is “Challenge.” We all have many challenges, but no one sums up the answer to these challenges better than Marcus. The answer is, and always has been: love.We all have many challenges, but no one sums up the answer to these challenges better than Marcus. The answer is, and always has been: love. Click To Tweet
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Way to go Marcus! <3
Tears are dropping onto my laptop. I love you Marcus and Mardra. Thank you x
Marcus & Mardra – what can I say.
My son is unable to speak but will ‘make you understand’ by signing gesturing typing on a iPad, laptop, DynaVox and if that is not quick enough he drags me to what it is he wants to show me or bring it to me.
So you see Marcus & Mardra everyone can understand if they want to 🙂
I’m so glad he has a mother who listens to whatever method he can grab. Everyone has something to “say.” Best wishes to you and your family. – Ms
We have our grandson Charlie who has DS was a big shock for my son and his wife,but they done the best they knew how,and now at 9yrs old we have the most happiest boy,whos doing realy well,swims dances,etc,but most of all,hes the best thing thats happened to us and all the family,he makes US happy,and hes loved by all.
Thank you for your lovely note, I’m very glad to hear that Charlie is teaching everyone so well <3
Best wishes to you all! - Ms
Tears. He so often gets what we miss. He knows so much.
Oh my, that original article was tough to read. So grateful for Marcus’ response.
Thanks for sharing this.
I am thankful that things have changed and we don’t continue to institutionalize children or adults that don’t fit a certain mold. I am so grateful that we were able to break our children out of their shells and continue to do so on a daily basis. If perceptions and therapy options hadn’t changed, were would my family be today?
Me Too! The more I learn history, the more my heart breaks for those who endured. Also the more admiration I have for those families and caretakers and leaders who created change and who *did* love and care for people within these environments. SO hard.
Beautiful! Marcus is very wise!
I have a daughter name Tiffany, I was 19 when I had her, it was shocking for me, but I loved her even more. Tiffanny is now 9yrs old she Will turn 10 next month, but Tiffanny is a beautiful loving ,caring,little girl, she wants to be the adult caring for babies is what she loves to do. Tiffanny has been taking care of her cousin since she was a new born of course under supervision but she does a great job from changing pampers to making bottles. On her free time she loves to be a model so she changes clothes and plays with make-up , curls on her hair or playing with straightner and let’s not forget the Selfie picture don’t leave a phone behind cause you will end up having more then 10 pictures of Tiffanny. One thing that Tiffanny has a problem that she found out her Dad doesn’t want her because he doesn’t understand her. So she knows he is a truck driver and most of the time she see a 18 wheeler she will say “my dad.” Besides that Tiffanny is very well known for her love and caring at her school.she is a happy little girl who makes sure she is center of attention.
Thank you for coming by! I relate exactly to your situation. And I already love Tiffany too. She sounds like a great source of joy for those around her. I’m sure you and she together are teaching your community and your world a better understanding of love.
You got it!