My Son Has Down Syndrome, But He’s Just Like You — Deserving of Respect
By Maria Baranowski
Photo © tdyuvbanova/Twenty20
Jul 20, 2021
My youngest son was born with Down syndrome in 2015, and since that day I've had to prove his worth to plenty of people.
Because I'm not just his mom, I'm his advocate. So I've not only had to become an expert on his diagnosis, but I've had to do a lot of convincing.
I've had to prove my son is worth a person's time, attention, respect, patience and consideration.
All of which my son is rightfully owed.
Just One of the Boys
Down syndrome can be defined as a having an extra copy of chromosome 21.
But I can appreciate how this definition may not mean anything to some people. I know it didn't to me when I first heard it.
I was much more interested in knowing what I should expect day to day and if I needed to do anything differently. We all want concrete answers, but no one can tell you everything to expect. Not really. Because just like everyone else, people born with Down syndrome are not all the same.
When I received my son's diagnosis, the doctor told me to simply treat him the same as my other sons, and love him. I knew I could do that.
But not everyone can see beyond the diagnosis; the label. There are so many assumptions about what my son may or not be able to do or say or achieve. This lack of understanding has come from all kinds of people in our life, even professionals at times.
And it has been exhausting and disappointing — sometimes I feel like I can't count on anyone.
When your child gets a diagnosis, you often have to do a lot of your own research and become their biggest advocate.
I often feel like I know more than healthcare authorities. But how could that be possible? I guess that’s what happens when you gain personal experience every single day — you kind of do become an expert, at least about how your own child is experiencing their diagnosis.
After receiving his diagnosis, my son was automatically referred to a variety of specialists for assessment, monitoring and therapy.
We were well taken care of and lucky to know at least a couple of wonderful professionals who really became confidantes to me during those first few years.
We did everything the professionals told us to do. We went to all the appointments and we completed all the homework. It was hard work but it was worth our time. I still get goosebumps every time I watch the video of my son taking his first steps with his big brothers cheering him on. I am so proud of all my boys.
Entering the school system coincided with changes to the way in which services were delivered.
They were mostly reduced.
Which, after following an intensive therapeutic schedule, can feel like a letdown.
For five years we witnessed the effectiveness of consistency and practice for so many skills. I thought I had a good relationship with his teacher and community service worker but struggled communicating with other professionals. Sometimes my questions were ignored and my concerns were dismissed. I was even accused of being critical because I asked a question and my ‘tone’ was referenced.
But I persevered.
I do not always find it easy to communicate with someone who holds a position of authority, especially when it feels like they aren't making time to understand my point of view as a mother of a child with Down syndrome.
Too often I've felt as if I was being persuaded to believe their perspective, which almost always lacked a lens of personal experience and — on occasion — knowledge of current practices or policies.
We all know that you can never really know what someone else is going through, about anything, no matter what their job title is or how much education they have received. But I believe with some patience, there are always opportunities for people to ask questions and listen to what someone else has to share from their own experiences. That is really the only way to truly find out what someone is going through.
His Biggest Support
Being a parent advocate comes with the territory. It is really as simple as that.
It is not a career, nor is it temporary.
Does my youngest son need more help? Yes, he does. But who doesn’t need help sometimes? If I identify a barrier in my son’s life, I will try to remove it or minimize its impact so that he has the same opportunities as anyone else.
Just like any other parent on the planet, I want what is best for all my boys.
Don't get me wrong, I am grateful that we have received services to help my son and our family. But that doesn't mean I am always satisfied. Don't we all wish for more when what we have is simply inadequate? Especially for our children?
I know it's his diagnosis, but honestly, it may as well be my own. And I understand that no one will ever truly care as much as I do, because I'm his mom, but nothing will stop me from ensuring my baby has what he needs to succeed.
We All Want a Little Humanity
Ultimately what I'm after is care, compassion and a little consideration.
Children with Down syndrome present differently, so I can't speak on behalf of all kids, but with mine I know this:
Please lend a hand to clean his face after he's eaten, because he likes to be clean. If you're talking to him virtually, it's helpful if you take off your mask. If you can't take off your mask where you are, let's talk later.
If he puts his shoes on the wrong feet, it's OK to help.
When he is talking to you, you may not understand everything he's saying, but he's trying to tell you a story so do your best to listen.
He's just like you, and is curious, so please ask him questions and give him time to answer them. Speak to him directly, not around him. And make eye contact.
Don't be afraid to challenge him to do more or learn new skills. He is smart and capable. Give him a chance. He has a lot of energy and love, and wants to be included and encouraged like most other children.
And please, remember his name, not his diagnosis.
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