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When People Ask 'Is He Walking Yet?' About My Son With Down Syndrome

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If I’ve answered the question once, I’ve answered it a thousand times. “Tell me what Miles is doing now. Can he walk yet?”

Miles is 26 months old, and he can’t stand up yet, so no, he isn’t walking yet. When he does start to walk, everyone will know, because I will post pictures, videos and celebratory songs over every social media outlet available.

No one wants to celebrate Miles more than I do. We spend our days doing exercises to help Miles excel in his physical and speech development. We have therapists in our home on a weekly basis, giving us the knowledge and tools we need to help him. We believe he will be able to do anything he wants, and he will do it in his own time, and we are OK with that.

A person asking me questions about Miles and his development does not bother me. If anything, I am honored when others express interest in him and concern for his progress. But, I have noticed the questions I am asked over and over again about Miles are almost always centered around his developmental milestones and nothing else.

Now, this line of questioning doesn’t seem unique to kids with disabilities. We ask about typical kids’ milestones all the time too. As kids get older, we ask how they are doing in school (meaning if they are getting good grades.) If they play a sport, we want to know if they are any good at it. We do it to adults, too. “What are you up to these days? Where do you work?”

As people continue to ask me about whether or not Miles can walk, I’ve found myself feeling the need to tell them what he can do instead. “Well, he can’t walk yet, but he is pulling up on his knees now.” “He is still taking all food via g-tube, but he eats more bites of food than ever before.” I want to show people that although Miles isn’t hitting the typical milestones on the usual schedule, he is still doing well, and I am still proud of him.

It hit me the other day that almost no one asks the questions about Miles that I wish they would ask. “What do you enjoy most about Miles?” “What are the biggest challenges Miles is facing right now?” These questions would allow me to truly talk about my son, not just what he is “doing.” I would instead be able to talk about what an amazing person he is. How he wakes up smiling every single morning, and patiently waits for us to come get him. He’s started expressing his frustration about things with loud grunts and raised fists, which might be the most adorable act of defiance I’ve ever seen.

It is so much more important to me that people know Miles for the special guy that he is, rather than for the things he is currently able to do. I want people to know that Miles is the sweetest guy I’ve ever known, not because he has Down syndrome, but because he was born with an awesome temperament — it’s who he is. Miles has a deep hearty belly laugh, but he won’t laugh at just anything. Things that strike him funny one day are of no interest to him on other days. My husband Timothy and I have been known to act completely goofy in an attempt to earn one of his prized laughs.

Miles also adores his brother. He lights up whenever he enters the room and wants to be a part of whatever he’s doing. Miles is a very loving child, and still lets us hold and snuggle him every day. I imagine when he finally does take off walking and running, those days of lengthy snuggles will get fewer and fewer.

Miles continues to teach me about himself, myself, and about life in general. People’s performance doesn’t impress me as much as who they are, and how they make me feel when I’m around them. I’ve realized that when I’m around Miles I feel happy, peaceful, and thankful. I’m one proud Momma.

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Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

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Originally published: October 12, 2016
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