Ever pulled a perfect stranger aside in a Japanese steakhouse to kindly ask if she would give you a heads up before the cake is brought out, so that you could scoop up your little one and hightail it out of there before the merry-making of her birthday dinner lead into a chorus of “Happy Birthday?”
Well, I have, more times than I’d like to admit.
At first the stranger looks at me completely bewildered, then the look shifts to skepticism as she ponders whether or not she is being Punk’d, and then finally understanding and a bit of pity wash over her face as I explain that my autistic son becomes completely undone when he hears the melody of the “Happy Birthday” song.
This undoing is not a tantrum. It isn’t a scream or a cry. He doesn’t put his hands over his ears, as you may be imagining, the way that many autistic children do to block out an unpleasant sound. His reaction is so strong, and so all encompassing, that if you were to see it, you would be crying too. First his eyes well with tears, then his mouth literally turns upside down into a perfect frown. His bottom lip quivers, and as he blinks streams of tears wash all over his face. His despair is completely tangible. His chest heaves, but no sound is emitted, as if he is trying his very best to hold his breath so the hurt can’t come. But then it comes. A long sorrowful howl finally escapes. He repeats over and over and over through the tears, “Is okay. Is aw wight. Is okay. Is aw wight. Is okay. Is aw wight,” in a fruitless effort to self-soothe. The howls and tears continue to spill forth from him. It is completely and utterly crushing.
So, we are proactive, we play our defense strategically. So when we see balloons or gift bags or streamers or confetti, we intervene before the undoing. It’s just one of the many adjustments that we’ve made in our lives since autism came barging through the front door. Exit before the cake makes its entrance, and we’ll be all right.
So, I thank her and she nods empathetically. The burden of her newfound responsibility is visible in the way she holds herself, as if the weight of such a responsibility has ionized the air and sucked the levity out of her dinner. I feel sorry to have dropped the wet blanket on the party, as I make my way back to our adjacent table, feeling a bit ionized myself.
Thus is life.
We have been mindfully working on desensitizing Jonas to this particular song. In his preschool class, they have been routinely celebrating birthdays with no holds barred. They have added the song into their regular routine, and he has been doing beautifully. He has even taken to singing the song when someone says the word “birthday” in mere conversation. I honestly thought that we had the Happy Birthday blues beat the other day when Jonas sang the song with minimal cueing to my brother on the afternoon of his birthday. Happy tears welled up at the corners of my eyes. It was absolutely, positively fabulous, and such a wonderful marker of the progress that Jonas is making each and every day.
But then the evening came, and maybe it was because he was tired and about to turn in for the night, or maybe it was because there was an actual cake with candles on it and a crowd of people, I don’t know, but what I do know is that when the chorus began, Jonas became unraveled. Completely unglued.
I have never seen him more upset than that night. I held him and joined in on his attempts at self-soothing. I reassured him that everything was all right and that we were, “All done with singing. All done with that.” But it didn’t matter. Nothing I said helped him. As time passed, he began to quiet. We talked about his animals and about going to the farm through his sobs. We read his favorite books and sang his favorite songs. After nearly 3o minutes, he appeared to have forgotten about what had transpired in the kitchen. So, I kissed him good night and turned off the light, only to hear him whimpering 5 minutes later through the baby monitor.
“I do a good job. Is aw wight. I do a good job. Is okay. Is aw wight. Hapa bihday Uhca Wyan…” Sobs. A howl.
It wasn’t over. Not yet.
So, I cuddled with him and I told him it was all right. I held him close and talked him through it. Eventually, after more than an hour, the moment passed and he fell into a deep sleep. But the Happy Birthday blues were back, much like the cat. They wouldn’t go away. They were sitting on the porch on the very next day.
It’s a hard row to hoe.
Sounds like you are an amazing and dedicated mother and woman.
God bless you and give you all the wisdom and strength you need.
Thank you so very much for your compliment and wishes. I find so much strength in my sharing. Thank you for your comment.
Oy vey! Perhaps a personalised CD singing happy birthday jonas would help in the desensitisation?
That’s a great idea! Thank you!
I just found your blog through “a diary of a mom’s facebook page” and when I read this post, I was amazed. Our daughter “K” has been diagnosed with HFA and I honestly thought she was the only kid that had issues with the “Happy Birthday Song”. Her response every single time she hears it is very similar to Jonas’s. She’s getting a bit better with the self soothing, but I agree… it really does break your heart to see you child struggle so much with it.
Thank you for your comment, Stephanie. It is so comforting to know that my child is not the only child on the planet who cannot bear “Happy Birthday.” It is so hard, so heart-wrenching and a bit perplexing because my little one is an avid music fan. He simply adores classical music, nursery rhymes, all of the melodies on his electronic toys and such. He requests “booful muzik” every single day as we drive in the car or at home. He simply LOVES the Music Choice Light Classical Channel! But, there have always been certain songs, certain tunes, and certain melodies that send him into absolute and total despair. I read once in one of those Chicken Soup for the Soul books about a mother who was a musician by trade whose autistic son could not handle her singing. It broke her heart. When he was older, he was finally able to vocalize that he couldn’t handle it because it was too beautiful. As if he didn’t know what to do with the emotions that it sparked in him. I sometimes wonder if the happy tears-like emotional component to music is what sends my little one into despair. Is it like that for your “K?”
Wow Aimee… I never thought to ask her what emotion she associates with “Happy Birthday”, I just assumed tears=fear/discomfort/etc. That she’s overwhelmed, too many people, too loud, whatever. I’ll have to try to ask her the next time the situation arises, although she tends to have the most difficulty with her speech when she’s emotional. “K” is very much like Jonas in that she loves music. At 5, we’re already considering an iPOD so she has control of her own music (just be glad that your little one is into classical music… although “K” likes many different types of music, we’re currently being tortured by Big Time Rush!)
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We have the same issue with Happy Birthday. I hope it gets better…