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  • Writer's picturePaula Ferrari

A little help, please.

Having a child with Down syndrome, our family has learned to adapt and be resourceful over the 3 short years that we have had Auggie. We’ve learned that Auggie, like many other will do things on his own time and may just need to do things a little differently. He has overcome so many obstacles and achieved so many goals but lately there is one thing that is giving us a run for our money. Enter the face mask. An item designed to protect, an item I, as a mother never dreamt would be a staple in our home but here we are, quarantine is coming to an end and it is time to face the music. We can’t hide in our house forever. We have tried and tried and tried. We have shown him videos, we have put the mask on toys, we try just wearing them around him and I am worried that I may be doing more harm than good. Auggie has exhibited a lot of sensory issues in his life; some are just phases while others we continue to work on. For example, he at one point was terrified of feathers, yes feathers. We could not figure out why but we worked with him along with his amazing team of therapists and that is now a thing of the past. But the mere sight of a mask sends him into a frenzy. And I don’t mean he just doesn’t like it, the child screams like his life is in danger. Yesterday myself and Gio decided that we would try again as we are now looking forward to a camping trip and understand that if we have to venture into public the mask is going to have to be something we deal with. Also, when school starts even if he will not wear a mask, we can’t have him terrified of everyone who does. I started by showing Auggie pictures of kids on Amazon wearing masks, he was a little intrigued with the patterns and colors. I asked him if Auggie wanted one and he said yeah, Dinosaurs!. I thought we might be making progress.  We then went and sat on the floor and Gio and I both put on a mask, womp womp womp-progress out the window. Auggie began screaming and scooting away from us, he was so scared that he could not even get his footing to get up an run away. The gammit of emotions that ran through my head was overwhelming: do I keep trying, am I causing him distress, is he going to remember this, are other families dealing with this, what do I do? I decided to give him a minute and then I went to him mask in hand, an olive branch of sorts. I asked him if he wanted to hold it. Enter tantrum number two. He threw that thing as hard as he could but what came next hurt my heart. He began to bang his head, my poor sweet boy was just so upset and as a parent that is the last thing you want to see. Mask practice was then over. I know he is an exception to the rule because he has a disability. But like everything else for a parent raising a differently abled child, we just want them to fit in. I wonder, if we go out in public do I announce to the world upon entry: “Hey guys, he doesn’t wear a mask because he has Down syndrome!” Or do I just go with it and let them stare anyway because I’ll be that mom with a child who doesn’t have a mask on.  I decided to put this issue on the back burner and salvage what was left of my day. Then I saw a news story of a mom who had the cops called on her because her son was not wearing a mask. I write this to ask, in a time where judgment and hate are running rampant in our world, please give each other a little grace. For now, I am calling on the amazing community around me for tips, pointers or just an ear to listen as we will continue to try to figure this out.


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