True Story: My Son Has Down Syndrome

What's life like when your son has Down Syndrome? How do you navigate life when you have a child with special needs? How can you be your best self and best parent? Click through for one woman's story

What’s life like when your son has Down Syndrome? How do you navigate life when you have a child with special needs? How can you be your best self and best parent? My friend Catherine answers these questions (and many more) today.

Tell us a bit about yourself.

Hi there! Thank you so much for asking me to be a part of this series of interviews! I’m honored to be here.

I’m a photographer/artist, mama and mentor. I’m 46 years old, living in Santa Monica, Ca. I’m a single parent to my son Max who is 6 years old and has Down syndrome. I’m an entrepreneur and advocate. I teach classes online, have a workshop in my home, and have celebrity and high profile clients who need creative portraits for their PR, marketing, book, launches, etc.
For anyone who doesn’t know, what is Down Syndrome exactly? 
Down syndrome occurs when an individual has three rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes some specific characteristics associated with Down syndrome.
Prior to becoming a mom, how did you feel about parenthood?
I never really wanted to be a parent until I decided at age 39 to see what the universe thought of the idea for me. I actively pursued it after I got married. I was pregnant within 8 months and felt that my son was the “yes” to my question.
When did you find out that Max had Down syndrome? 
I found out Max had Down syndrome about 20 minutes after he was born. I didn’t do the Amnio testing during pregnancy because there was a 1% chance the test could harm my child. I knew that any diagnosis wouldn’t change anything for me, so I decided not to do it. The Pediatrician on staff at the hospital told us he had some characteristics of Ds and needed to do a blood test to confirm it.
I didn’t know anything about Down syndrome. I was never around anyone with Ds growing up. All of my beliefs were based on our cultures false perceptions about it. Google doesn’t do you any favors when you just have a baby and want to learn more. It’s all old archaic and negative information.
Luckily, we found other parents soon after his birth who helped us understand what it was really like, what to expect, what to read, where to go. This helped me feel less alone and more empowered.
How has Max’s Down syndrome affected his development and life? 
I actually don’t know how he would be without it or what his strengths or weaknesses would be if he were a “typically developing” child, so I can’t say how it affects his development as far as what he might be like otherwise. We all have strengths and weaknesses.
I actually very much relate to him and his particular way of being in the world. Every human with Down syndrome is unique so I can’t say that Max’s life is anything like anyone else’s who has Down syndrome. He has other friends with Ds that are really different than he is.
If I were to generalize (not my favorite thing to do) I notice that people with Down syndrome learn differently than the conventional way we learn in school with words only. My son learns similarly to the way I learn which is very visual and physical. He needs to see it, say it, sing it, dance it, do it, in order for it to sink it. A lot of repetition.
Most people with Ds have some sort of delay compared to a typically developing child who has a chart of milestones to reach by certain ages. We basically toss out that chart and have our own with Max based on his muscle tone. That means the strength he has inherently when he is born.
Most kids with Ds don’t have much muscle tone and can’t hold up their heads, sit up, stand, walk, speak without a LOT of extra physical therapy and other therapies to strengthen all of those weak muscles. Even the muscles of the mouth. That’s why you see a lot of people with Ds with their tongues sticking out. They didn’t get the therapy they needed to develop the strength to pull their tongues in.
We take it for granted that we hold our heads up, sit up, stand, walk, talk, use a spoon, have conversations with others. But for Max and most people with Ds, everything is extremely epic when they achieve it. Max was born strong, but his muscle tone challenge is mostly in his mouth so his speech is very delayed.
He has speech therapy daily at school and twice a month outside of school with another specialist. He knows the words but can’t get them from his mind down to his mouth and then he can’t form his mouth in the shapes he needs, and can’t use his abs to blow air out of his mouth the way we do to say a word or a sentence.
It’s intense to watch him struggle saying a word. This very much affects his ability to socialize with typically developing kids who walk up to him and ask him questions and don’t know to wait a minute for him to answer. He knows sign language and if they don’t know it they don’t understand what’s happening.
For the most part, this has been the hardest part for me to see is the social element. That’s also partly my own fault because I can only plan so many play dates.
Another challenge for him is a high sensitivity to unexpected noises (just like his mama). So going to a music class, going to a restaurant with plates that clank or people who laugh, all the sensory input with a crowd at a parade, or in a classroom. It takes time for him to get used to it all.
If a child is crying,he was so sensitive that he would cry and not recover. The other child would be fine after five minutes, but Max would need to leave the scene in order to calm down.
School is another topic altogether. He was not included in the school he attended in Utah even though they called it Inclusion. Two years of not being included and being in the corner alone (I knew this because I had to be in the classroom as his aide in order for him not to completely fall apart) was extremely devastating. The parents didn’t include him in play dates. He spent the summer alone without friends.

Luckily, we moved back to LA where he was born and we found a school who really gets him. He’s fully included and a part of the community. He has blossomed beyond anything I could have imagined. School is not something I’m looking forward to in his future. So I try to just stay in the moment.

How has his diagnosis affected your life?

Max has made my heart burst open in ways I never knew possible. I will fight for his rights to be valued in this culture we live in until the day I die. I never knew what a mama bear I could be. I didn’t think I would be a good mama. I still work on that all the time as I can be very self-interested with my own art projects, etc.

He teaches me what’s important. He loves like no one I’ve ever met. He helps me slow down and appreciate the moments that matter.
Down syndrome isn’t really the issue. It’s the culture that doesn’t value him or others who learn differently. That affects me. Every day I step out of the house with Max I’m either looked at with pity, or they say “Oh, you have an Angel baby.” It’s a horrible thing to have a child that people judge with a stereotype or with false information just from looking at him.
I would love it if people got to know Max and then decided what he was or wasn’t based on who he is rather than a diagnosis. Max is not a “Down’s child.” Max is a human being who happens to have Down syndrome. I feel lucky to be chosen as his mama. I need more support than other mamas may need, but it is truly the most amazing experience in my life. I’m deeply in love. What a gift parenthood is no matter the challenges. We all have challenges as parents, don’t we?
What are the biggest challenges of having a special needs child? Are there any benefits?
The biggest challenge is educating the entire culture that he is valuable. Even the language here is hard because he’s not a “special needs child”. He’s a child named Max who happens to have special needs. He’s not the diagnosis. He is an individual. Fighting and advocating for his rights to be seen, given opportunities, included, honored, celebrated…that’s the biggest challenge.
What therapies, tools, treatments have helped Max the most?
Speech therapy through Talk Tools, occupational therapy, physical therapy, drum lessons, Music Together class for years. Club 21 in Pasadena, CA helped us know how to advocate for him so that was helpful too.
What’s your support system as you navigate this? Who helps you?
I have other friends who have kids with Ds who can relate to the very specific things we all deal with and don’t judge, they REALLY get it. I have a part time nanny who works some days so I can work when I have a deadline. My self-care is bubble baths, walks, yoga, meditation, healthy food, green juice.
In an ideal world, what would Max’s adolescence and adulthood look like?
Fully included, loved by many friends, a girlfriend (or boyfriend depending on his interest in one or the other) working a job with people who respect him. Lots of interests that he is pursuing, safe environments, supported by a community, makes his own money, pays taxes, enjoys his life and becomes whatever he wants to become with whatever support he needs.
Love. I want him to experience deep connection and love. I want him to have any opportunities and supports he needs to be whatever it is he wants to be and do whatever it is he wants to do.
How do you feel when you hear people use the ‘r’ word in everyday language?
I feel sad that I have to bring it up with them, but I do feel a responsibility to share with them that saying things like “ I’m so retarded” is cutting down a group of people that can’t necessarily stand up for themselves in that moment.
There’s no reason to use that word once you know that it hurts people. I used to use the word until I knew how hurtful it was. As Oprah Says “ once you know better, you do better. “ This video sums it up for me.
How do you feel when you hear that someone has chosen to terminate when they discover they’re carrying a baby that has Down syndrome? 
I feel that every woman has the right to make her own decisions how she uses her body and I wouldn’t want to ever force anyone to have a child or force someone not to. Choice is a beautiful thing. I can’t begin to know what any woman is facing. Ever.
I know that false and old information is usually the culprit in many of the woman deciding to terminate based on this specific diagnosis. Maybe if they actually had the experience of being with Max, or another child with Ds for any amount of time, they would embrace it and learn all they could to help support their child in this world we live in.
We know a lot more about how to support people with Ds than we knew 30 years ago when those kids didn’t get all the therapies right away and ended up not being able to do much with their lives. There are people going to college, driving, getting degrees, getting married, living on their own, working jobs they love, in friendships that are meaningful.
We need to expect more from our culture, developing the research and education around Ds so people can make a more informed decision about what a child with Ds is really like.
What’s one thing you’ve learned from this that any of us could apply to our daily lives?
Every human is important. Just because someone doesn’t learn in the same way you do, doesn’t make them less important. Look for the similarities. Lean in. Don’t judge based on how someone looks.
Going to the best college and getting straight A’s isn’t as important to me as having a deeply fulfilling life and experiencing true friendship and love and expressing oneself fully. I have always believed these things as I learn differently than what we consider the “norm”.
We are all valuable and deserve to express ourselves fully. It’s funny to me how much time we spend being small and judging ourselves. My son doesn’t judge himself, but the world does. This has been an interesting thing to witness. What if we lived more fully without reservation? What if we stepped more fully into our greatness and stopped the inner and outer judging of who is important and worthy of our time? Imagine the possibilities if we valued ourselves more and valued differently-abled beings!
Thank you so much for sharing your and Max’s story, Catherine. Do any of you have children or family members with special needs? Do you have any questions for Catherine?

9 Comments

Karen

“Max is not a “Down’s child.” Max is a human being who happens to have Down syndrome.”

This. So much. It grates on me so much when people lump other people together in a tag because they just don’t understand.
I love how you see him as an individual, his own person. It took me such a long time to be able to do that with my own brother.

Growing up with a brother with mental disabilities (such a big difference from a disabled brother) I hated the stares and all the unwanted attention. I felt not ashamed as such but just like: don’t look at me! I’m just here walking with my mum and brother just like everyone else.
Having moved away a lot less people now know that my lovely brother has disabilities and I do experience a lot more of ‘information moments’ when people use r-words and such. Interesting how they’re like: what are you effing talking about until I explain my family. *headdesk*

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Sarah Von Bargen

Karen, I’m so sorry you’ve had to deal with such insensitive people – you’re making the world a better place by taking the time to tell them your story. <3

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Dana

Thanks for this! As a regular ‘lurker’ of the True Story articles, it was great to read one that really resonated with me. I recently (2 months ago!) had a daughter – and we found out she has DS when she was born. The learning curve as a parent has been huge (she my 1st, so learning how to care for ANY baby is a lot), especially when you start to throw in all the specialists & therapists she’ll need. It’s great to see how other families are adjust to life and what their honest struggles are…

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Michelle...

One of our research assistants has DS (I’m a scientist in a soils lab). We spend a lot of our time laughing. And she’s representing New Zealand at the Special Olympics in Los Angeles in July. She’s a rock star and I love working with her 🙂

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Lamesha

Thank you for sharing your story with us. Your son is beautiful. I admit, I know hardly anything about Down syndrome at all. When I was pregnant with my youngest, the perinatologist told us she was a girl and that she had a “soft market for Down syndrome”. I wish I had your story back then instead of Google and the doctor’s words, which did little to comfort me. Even though Layla was born without Down’s syndrome, your story has inspired me to learn more and to advocate harder for all parents. thank you

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Thea

This was one of the best and most touching posts here on yes and yes for a while!

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Angie

This was a wonderful, educational story. Thank-you for sharing! I am still appalled that a school had Max in a corner, I am so glad you found a better school for him.

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