And this is why life with a selectively mute child is hard.

For all the times people come up to my 5 year old selectively mute daughter to ask her normal things –

“What’s your name”. Dead silence.
“She’s shy”, I tell them. I fear if I don’t answer for her, they will think she is deaf or stupid or rude *.

She is none of these. She is selectively mute.

“How old are you”. Dead silence.
“Can you say 5, sweetie?” I ask her, or just sometimes offer “She’s 5”. I can’t stand the long awkward pauses where the silence hangs in the air.

It’s more socially acceptable for me to explain that she is very shy, than to tell them she doesn’t get a good vibe from them or her anxiety keeps her from speaking freely.

But even so, shy is “cute” for a 3 year old. You don’t get as much sympathy when you are older.

You feel judged for not “making” the child be polite. So you are quick to offer some explanation.

* In case you were wondering if I am enabling her to not speak, I don’t think so. I have always expected one thing of my daughter, and that was to acknowledge people’s kindness with a non-verbal response. Usually a hug for familiar people, and a high-5 for unfamiliar people and after I give her a chance to verbally say “thank you”.

I don’t however, expect my daughter to be comfortable with small chat with adults. After all, it’s really not essential for at this point in time for her to learn to make chit-chat with people who are strangers or simply people she doesn’t feel comfortable around.

For simple things like haircuts that are troublesome.

“Tell me if the water is too warm” says the stylist. Dead silence.
“Is the water okay, honey?” I ask, looking for signs that the water is too warm – maybe even uncomfortably so and she’s just not able to tell the girl.

My daughter nods, but I scrutinize her solemn face, looking for discomfort until the stylist turns the water off.

I can relax.

Until I notice her stiff look while she’s getting her hair cut.

Does she hate it? Am I going to hear her meltdown for 20 minutes about how her hair is ruined? Did I mention she’s 5 and is concerned about her appearance all the time? I’m really nervous for the teenage years and how to cope with her dramas.

When it’s over she relaxes her expression and smiles. She likes it. I know I’m not going to have to listen to her meltdown on the ride home.

For the bigger things like medical/dental appointments that can be very exhausting.

When she was 4, my daughter refused every attempt at cajoling her into getting her teeth examined. Even though we prepared ahead of time by reading various “going to the dentist” illustrated stories. Even though she saw her sister go first, and saw almost every part of the procedure. Even after I tried sitting her on my lap. She wouldn’t open up her mouth for anything. The dentist said, maybe we should try again in 6 months. “Lots of kids are nervous in the dentist chair, but they change so much in 6 months, she probably won’t have a problem then”.

So, we tried again when she was 5. Same setup, her big sister went first. Same dentist. My daughter was actually kind of looking forward to getting to visit the dentist. I explain to the dentist ahead of time that she has been diagnosed with an anxiety disorder and we might have problems again to prepare him for the possibility of refusal.

“Okay, honey, it’s your turn now” I tell her after big sister got her teeth cleaned. My daughter just shakes her head.

“Come on honey, just let the dentist count your teeth”. Now she’s hiding behind me.

The dentist, God love that man, said “why don’t you sit her on your lap and let’s see if she’ll just let me look at her teeth”. He asked her if that was okay. She nodded yes.

This time, my daughter sat on my lap and allowed the dentist to look into her mouth. She let him count her teeth.

He said, “okay, now can I clean your teeth?” and he said, “mama, you can continue to hold your daughter and I will work around you both”.

Yes, it was uncomfortable and awkward for both me and the dentist, but I really think that was an amazing thing that he did that for us. I was really worried, thinking that she’d have to be sedated just for a tooth cleaning. I was so relieved.

For the fun experiences that are supposed to be joyful but aren’t

Like performing for the parents in ballet on Halloween. I have video footage of my otherwise relaxed child (in ballet anyway), standing frozen, with tears in her eyes, while all the other children danced around her. She was too scared to participate, but too scared to come sit down with me and her daddy. So there she stood until the entire dance was over. And at the end of the dance, when another girl was supposed to turn to her and they were supposed to clap hands together, the other girl was left hanging, looking very surprised, confused and sad.

And yet –

My daughter’s special needs teacher still can’t apologize to me for telling me to lighten up about my daughter’s experiences in her school.

My family and friends STILL to this day to not “get it”. I wonder if my husband even does. I don’t think he really knows all what is affected by this disorder.

And this doesn’t even begin to cover the issues she has at home. The meltdowns, the strong will, the need to CONTROL everyone in this house. If she isn’t happy, then no one is.

Even walking back to the car after picking up her sister is terrible when the bitter cold makes her crankier than a teething toddler who hasn’t had a nap and doesn’t care who hears it – which is ironic because she doesn’t like being embarrassed in public. But if she’s positively miserable, all bets are off.

Have I mentioned I have been brought to my knees in desperation on more than one occasion because I could not get her to stop being so explosive?

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