It has honestly taken 10 months before I have personally come to understand why most parents/carers of a child with a disability like Down Syndrome (DS) say that they just want people to celebrate their child’s achievements and acknowledge the challenges they face, when they come to them.
I had heard a few times in different places that “it’s just stereotyping” when a parent/friend mentions someone acknowledging their child as a “typical child with DS.” – But I didn’t get it. Even after six months of holding my cards close to my heart and feeling quite betrayed when I’d learn that more people knew that our boy was diagnosed with DS then I wanted to tell, I still didn’t understand why a parent might go out of their way to tell people to accept their child as an individual.
That is until recently in the midst of a friendly conversation, one parent spoke up (similar to other parents that have spoken to us in the past) and asked, “he has Down Syndrome, hey?”
My husband and I exchanged a glance and in the moment, I imagined that he was feeling the same as me. My heart sank. It was a quick hit of frustration and disappointment. All I could think of was – why did it need to be mentioned? It’s not like they can tell just by looking at our boy.
The parent continued, “…and it’s cool. They are really loving people hey. There will be challenges, but they will always love you.”
I think, by that point – knowing that our boy is still meeting his milestones well – I was really disheartened. Don’t get me wrong though. I appreciate the positivity. But, I didn’t want to hear it. I’m believing for good health, safety and protection. I don’t want to be told that there will be challenges (like it should be expected) and I really don’t believe there will be any more challenges for our boy than any other person growing through life. We will all experience challenges in life.
I didn’t respond. I didn’t know how. However, I did feel comforted that my husband tried to explain that in contrary to what they just said, our boy was doing well and that his future may have no significant struggles despite his diagnosis of Translocation Trisomy 21 (Down Syndrome).
It took a few days before I could really decide how best to respond to a similar circumstance in the future. I don’t want to push my friends away due to misunderstanding, but in the same mind, I didn’t want to go unheard either. If they feel confident enough to bring it up, then I really need to be confident in telling them about how I feel. So I asked myself… What did it feel like? I was finally able to see it. Polite stereotyping can seem harmless – especially when you are ill informed about a person’s individuality – but never-the-less, it can be hurtful.
I decided in the future that if someone openly shares their opinion about my boy, without asking about him first, I will kindly reply, “I appreciate your opinion, however you are stereotyping. Our son is unique and meeting his milestones just like anyone.” I will then continue to explain further about his unique diagnosis and other specifics if they seem genuinely interested (like the fact that there are more than 50 different symptoms of DS, but not every person has all the same features). Otherwise, I will remain content in the fact that I have at least voiced that they are stereotyping, even if it may be through misunderstanding.
I know it is harmless, but it can be hard for a parent to keep hearing. I am also concerned one day, that someone will say something similar in front of our boy, and he will understand and be hurt by it. I truly hope it never happens, but that may just be one of the challenges that he we need to overcome in his life.
For now though, I will remain faithful in the promises of God. Our son is doing well. He is strong, healthy, clever and meeting his milestones with excellent progress. At 9-months-old he started pulling himself up to stand against furniture, waving hello, giving us high fives and crawling. At 10-months-old he started clapping his hands and side stepping against furniture. And now at 11-months-old his crawling is hard to keep up with, it is hard to keep everything out of his reach that he stands up to grab, and he has started taking his weight and standing without any support, after initially standing against something. Praise God.
Thank you for reading.
If you would like to read an alternative article written about bullying, stereotypes and Down Syndrome from a personal perspective, click here.
If you would like to read more about our progress or about my testimony since our boy was born, feel welcome to browse the rest of my blog:
My First Born: (1) Unexpected Circumstances
My First Born: (2) Praying One Step At A Time
My First Born: (3) Overcoming The Stigmatism of Down Syndrome
My First Born: (4) Becoming Nonchalant
My First Born: (5) Polite Stereotyping – Down Syndrome
My First Born: (6) Fun, Joy and Giggles – Overlooking Down Syndrome
Thank you.
Keeping Faithful 