The Talk: Introducing Down Syndrome to Brother

I have been giving a lot of thought recently to my latest task as Joel & Alvaro’s mom.

I have the honor and responsibility of sharing with Joel – that his brother has a condition that he has largely been unaware of.

There is a sense of sadness that I feel as I think about it. The sadness does not in any way stem from Alvaro’s condition or extra chromosome.

When Alvaro’s diagnosis was delivered, my lack of knowledge about Trisomy 21 (or Down syndrome) was profound. This unintentional ignorance led to a gamut of fears that weighed my heart down low the first few weeks after he was born.  

I was told by a number of people that once the initial shock and feelings of sadness subsided, that I’d look back and wonder what all the fuss was about. I was told by some very helpful medical professionals that my son was “normal” just like any other baby. It would just take him a little longer to do some of the things his typical peers were doing. They said before I knew it, life would feel and be “normal.”

I’m not sure I was skeptical of that. But I was so emotional and scared that it was hard to believe.  But sure enough, within a few weeks of bringing my baby boy home, life was indeed normal. Alvaro did all the same things babies do. He ate and slept and pooped. He cried when he was hungry and dirty. He smiled and cooed and laughed at his big brother’s antics.

In our household, Alvaro isn’t “different.”  In our household, Alvaro isn’t “special.” Alvaro is no more special than Joel and no less special than Joel. I love both my boys fiercely and am working hard to make sure to raise them to be loving, respectful, intelligent, and helpful contributors to society.

Part of me is a little bit sad that Joel will eventually learn that society won’t always see Alvaro like we do. I fear the day Alvaro is treated as “other” because of his condition. In our household Alvaro is just Alvaro … and that has been a balm to my soul these years as I have begun to engage with some well intentioned but ignorant or rude comments from other people.

Nevertheless, I have started to begin to lay the foundation for explaining Down syndrome to Joel. I’m not quite sure he fully understands what chromosomes are. But he knows we have 46 and Alvaro has 47. He knows that because Alvaro has 47, he has Down syndrome. And he knows that Alvaro has 47, because that’s how God chose to make him.

I am purposefully refraining from using the words “different” and “special.”  Everyone is different from each other. So there is no reason to categorize Alvaro and place him in a distinct label or grouping. And while Alvaro’s personality is sweet and inviting, that has more to do who God made him to be as a person, and less to do with an extra chromosome. 

Joel has begun to notice that Alvaro doesn’t talk as much as he does. He also has noticed that he doesn’t always understand what Alvaro says. When this subject comes up, I explain to Joel that Alvaro’s Down syndrome makes it a little harder for him to talk. But Alvaro is working very hard to talk more every day. Then I’ll even draw Joel's focus to the plethora of words his brother does say.

Likewise, Alvaro’s cousins are beginning to ask questions. If he’s 3 and not a baby anymore, why doesn’t he talk more? That’s allowed me to also lay the foundation of sharing about Alvaro’s condition… and explaining that he has some challenges, not unlike some of their own challenges. But that he’ll eventually learn to talk more, just like they did.

As I think about this responsibility, I realize I get to be the lucky one. I get to teach my son and my nieces and nephews about acceptance and inclusion in a way that pales in comparison to acknowledgement and tolerance. Acknowledgement tips its hat at you and says, “I see you” and Tolerance says “I’ll put up with you in spite of your difference.”  Acceptance and Inclusion says, “You are more the same than you are different, and you are one of us.”

My hope is that I don’t just teach my son that his brother’s challenges are opportunities to overcome obstacles, but that his acceptance and love for his brother will in turn teach him how to love and accept other people. No matter their differences and challenges.

Yes, that indeed is my responsibility.  I pray I do it well.