Over the last three years, I have been really trying to learn and figure out how to properly navigate this world of having a child with Down syndrome. I am a major work in progress as a mom to all three of my children, not just Archie, but he obviously adds some unique aspects to motherhood. The one part I am still trying to figure out how to handle with tact, grace and patience is other people's reactions to my son. It is such a huge spectrum.
One that I encounter often is the, "Archie should get away with things and get special treatment because he has Down syndrome" philosophy. The idea that since he has a "disability," all the rules don't apply to him. This thought process is problematic on so many levels and will only hold Archie back from being an independent person with socially acceptable behaviors.
Recently, we were at a birthday party and as it got to be time for cake, Archie insisted on standing right next to the birthday boy. Here's the thing: Archie has an obsession with blowing out candles. It's one of the most difficult things for him to control. His impulsivity kicks into high gear and most times, he just loses it. So, as he begged me to stand next to the birthday boy, I explained to him very clearly, "you DO NOT blow out the candles. If you blow out the candles, you will not get any cake." He knew the drill. He excitedly exclaimed, "Yes, mommy, I know. I won't!" And I know that he wanted that to be true. It was a really long shot, but I took a couple steps back and was prepared to give him the opportunity for a huge moment of success, or a major failure. And as the lights went out, and the cake approached with those bright flickering candles, I saw the wheels in his head begin to spin out of control. He sang "Happy Birthday" in his loudest Archie voice, and before the final "happy birthday to you" could get out, he lunged forward and blew with all of his might before the kid even had a chance to make a wish. (Fortunately, his aim is off, so not too much damage was done.)
I quickly escorted him to the other side of the room and calmly explained that he would not be getting a piece of that delicious chocolate cake. (One of his favorite things in the world). I wasn't mad at him. I wasn't upset that he failed. In fact, I was quite happy. I love giving him opportunities to fail and I give them to him often. Those failures, and the consequences that follow, are exactly how he learns. He cried and begged and threw a fit. People looked on awkwardly. One mom in particular stood close by and observed. After I was finished talking to and hugging Archie, the mom looked down at him and quietly asked him, "Would you like a piece of cake?" I was shocked. So was Archie. He looked at me like, is this a test? I looked at him with wide eyes like, yes it is, do the right thing... Then he looked at her and through sniffles and tears said, "Yes, please." (FAIL AGAIN!) She reached her hand out to him to take him to go get a piece and he started to move towards her. In my head I was all, what the?? but I politely said to this mother who I had never seen before in my life, "Actually, Archie here was told that he wouldn't be allowed any cake if he tried to blow out the candles and unfortunately, he did. So we will have to skip the cake this time." She made a frowny face and gave an audible "Awwwww." Seriously, lady?
The thing is, I can say with great certainty that if Archie had been a typical child, she would not have even looked twice. In fact, she may have even thought, too bad, punk. But because Archie has Down syndrome, in her mind, he needed to be let off the hook. Um, no.
His Down syndrome is a major part of who he is, but it's not a golden ticket for him to go around doing whatever the heck he feels in the moment.
Here are some examples of things that Down syndrome does not give my son an excuse to do:
Spank your butt
Grab your boobs
Blow out someone else's birthday candles
Eat food off of someone else's plate
Drink the rest of someone else's juice box
Drop things on the ground to see if they will break
Push your kid down
Cut in line
The problem is, when any of the above-mentioned incidents occur and I correct Archie, most people's reaction is, "Oh, it's OK... no problem... he's fine..." Actually, no. It's NOT OK for my son to lick you. It IS a problem if he spanks your butt. And it's NOT fine for him to cut in the line just because he's got an extra chromosome.
I completely understand these reactions from people. They mean well, and are really just trying to make me comfortable and make sure I know that they aren't bothered by Archie's antics. And while I appreciate that (and I really do), allowing him to act like anything less than the 10-year-old boy that he is, is not doing him any favors.