no, actually, it's not okay for my son to lick you

Tuesday, September 9, 2014



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 pitiful 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 on 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
Lick you
Pinch you
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 okay....no problem....he's fine...." Actually no. It's NOT okay 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 ten year old boy that he is, is not doing him any favors.

Thanks for letting me share,

23 comments :

  1. I feel ya, sister! (Great post title, too!)

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  2. I call it The Disability Discount! Just wait till he gets free food and drinks in fast food restaurants! I'll be sharing this on my book page!

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  3. You "love" giving him opportunities to fail? Doesn't life do that? While I agree that children like ours need boundaries as do all kids. Our are simply more unique. (We used to grab boobs!).That said, I have to admit I do not think we agree on child rearing. :-)

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  4. Thank you for the beautifully written post - very true!

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  5. Agreed. Often I am telling my son "it's not ok to....(fill in the blank)" when the person will say "it's okay!" Like you, I think there is an aspect to this of them wanting to assure me that they understand that he has a disability and might behave differently. I have started to reply with "thank you for your understanding, but it's not ok." That usually clues them in that I am trying to teach my son and they are interfering with that teaching moment, but still acknowledges their desire to be understanding and not freak out about what happened.

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  6. Wonderful. Keep up the hard work (writing-wise and kid-wrangling-wise).

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  7. I love it. Because you know that when he's not 10, people won't give him a pass anymore and then it's REALLY a problem. I face this too as a special ed assistant-hard to get people to understand sometimes!

    Hang in there :)

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  8. Wonderful post!! We struggle with this with our son, too. And since he has dwarfism, we always hear "he's so cute" as he's spanking a strangers butt or kissing their arm, or not making good choices. And since he looks like he's two instead of 5 1/2, I really appear as the mean ogre when correcting him!

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  9. Hi, I love this, and I agree completely with the basic premise. I had just a small question/suggestion. When Archie gave you the "is this a test?" look, I suspect he was looking for more of a "hint" than the look you gave him back. I know with (typical) young children, this kind of situation would call for "Now, Archie, what did we just say about the cake?" or even "Archie, remember you are not supposed to have any right now." So yes, he'd still have to respond to the woman himself to "pass the test", but he wouldn't have to do it solo. Of course, these things are always easier in Monday morning quarterbacking..... He is an amazing kid, and you are doing a super job with him (and his siblings)!

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  10. I whole heartedly agree! I just had this same conversation with a friend the other day concerning my own son and some of his peers. Great post!

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  11. Absolutely hit the nail on the head with this one! Couldn't agree more! Says a mom who just happens to have a 14yr old girl with DS...we could be kindred hearts!

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  13. Thank you so much! I have a friend whose son is autistic and I needed to hear this... Cause quite frankly I have been one of those people who says "It's ok!" You have shared this so beautifully now I understand those looks that say "Really Lady???" Keep up the good work Mom and God Bless!

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  14. Thank you for a beautifully written post and right on the mark. My nephew's son has down syndrome. What people don't get is they have to learn to live in this world the same as any other child. In order to become all they can be and productive citizens, they have to learn impulse control. Your son is a very lucky young man because he has a Mom who understands this and wants the best for her child. Thank you again for such an inciteful post. It was right on the mark!

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  15. Not having dealt with this same problem, but one similar, I am thinking as long as people have gone before you and are saying that this form of discipline works in the long run, that's fine, but what if the damage to the brain is such that those lessons can't be learnt? I don't envy your life.

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  16. Great post! (I write as I tell my blind, nonambulatory kid to get her little self in her for her bath... and she will, too, because high expectations lead to high achievement and low expectations lead to learned helplessness).

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  17. I used to be one of those people who said "It's okay". Now I have a child with Autism Spectrum Disorder who does all these things and I understand the need for conformity in social situations. We don't use ASD as an excuse, only an explanation but we never get "It's okay". We get a lot of verbal abuse and accusations of being slack parents instead. I guess that's the difference between a visible and an invisible disability. For a while I couldn't cope with social situations because of the "not okay"s, I've since had to get tough on myself and face those situations because they are essential learning opportunities. I still cry myself to sleep at night afterwards though.

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  18. Love this! I live this life daily having a visually impaired child who is "neurotypical". I refuse to let her grow up with the attitude that the world owes her because she has no vision. To allow her that mindset would take away her ability to live her life to the fullest extent!

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