Wednesday, September 10, 2014

Letting go of "Normal"

We had our first Mommy and Me Ballet today. Much fun was had by all--well, mostly by Elanor. That girl loves her some dancing.

Somewhere between the "Stand Up Warm Up" song and the galloping across the room exercise I realized something. For the first time in a long time, Elanor displayed no trappings of her disability. I had left her talker and her orthotics in the other room with our shoes. She was just a normal two-year-old, and since the other kids in the class were on average 6 months younger, she fit in quite well. She even spoke about as well as they did, telling the teacher "gee" for the color of scarf she wanted. At some point she even said something that the instructor interpreted as "I like green mats" (although I think it was "I like to dance.")

Here she was, the "normal" child that I had always wanted, or at least expected. I reveled in it briefly, trying on how it would feel to have a typical child all the time. What would we do all day without the endless appointments? What insignificant things would I worry about? Would she sing the ABC'S at the top of her lungs? Would she expertly climb up the playground stairs and go down the slide?

But that ended as we got in the car and I put the talker in her lap. "Blue candy lollipop" she tapped out and laughed, pointing to the lollipop in her mouth. "More candy please." This is the normal Elanor, the whole Elanor. The one that can say anything she wants in any way she wants. She deserves to be the whole Elanor, not the shadow of the child I once expected her to be.

I've talked to a lot of parents who are worried about getting a diagnosis. Or once they have that, they're worried about going to speech therapy or getting an AAC device. I think they still have that vision of a "normal" child, and as long as their child continues to appear normal to others, they feel they can hang onto that. I understand that feeling, I absolutely do. But it's not fair to either of you. Withholding help from a child that needs it will not turn them into a typical child no matter how much you want it to. But you will be absolutely amazed at who your child becomes with the tools they need. I promise.

Sunday, September 7, 2014

Building the Foundation for Speech

A couple of weeks ago, Elanor (we?) had her/our first anniversary with the private speech therapist. I bought the therapist a card and some stickers for Elanor to decorate it with. Of course, by the time it came to decorating, the stickers were lost.

Elanor is not good at finding things. 9 times out of 10 if I ask her where something is she will point under the easy chair (where I have found exactly 0 things ever.) However, 1 out of every 10 times she really does know where the thing is. She points to it or goes and gets it and the thing and I are reunited and all is right with the world. It's the memory of these times that bring me to ask her again and again despite so many disappointments.

This particular time I did not have high hopes. I would not have stored expensive, enticing stickers at Elanor-level for obvious reasons. I asked anyway.

"Elanor, do you know where the flower stickers are?"

My speech-impaired little daughter opens her mouth and, with perfect clarity, says, "I don't know, Mama."

I immediately forgot all about the flower stickers. 


"I don't know. I don't know, Mama."

So calm. So matter-of-fact. She seemed to have no idea why I was surprised. 

This was the beginning of the Avalanche. The Summer of AAC had brought about trickles, so many marvelous trickles like "ball" and "orange" and "Daddy." With the Avalanche came "I don't know" and "the balloon went up" and "where did Steve go?" Her eating got better too, and in the last few weeks we have added chicken nuggets, sandwiches and unthickened water to her previously stark diet. It's as if suddenly everything is falling into place. 

Now, let's not get ahead of ourselves here. I still only understand about 10% of what she's saying, but boy is she saying a lot. She can repeat now too, at least more than she could before. Speech therapy isn't all about the talker anymore.

The Avalanche has me excited. It has a lot of people excited. Elanor saw a speech therapist last week who she hadn't seen in a while and when the session was over the therapist came up to me, beaming. "When did Elanor start talking?"

"Thursday," I said, without even a hint of sarcasm. It had been that quick, that concrete.

Along with the immense excitement of the Avalanche came this little bit of worry, this tiny, dark fear that everything I'd done over the last year was for nothing. What if this would have happened anyway? I'd heard of other children with apraxia having similar explosions, occasionally at the same age. What if I'd wasted a year of my toddler's life on appointments and therapy? I'd spent thousands of dollars. I'd spent hours and hours and hours on worrying, on researching, on modeling. If the Avalanche was destined to happen, what was the point?

I spent an embarrassingly long amount of time on this line of thought before finally coming to a realization this past week. We really can't know if the Avalanche would have happened anyway, but I can tell you for sure that this last year wasn't for nothing. Imagine a world where we had spent the last year waiting for Elanor to talk, no signing, no speech therapy, no specialists, and certainly no AAC. Can I really say that I lost a year to appointments when the alternative would have been to lose a year to silence?

Elanor spent the last year learning to communicate. She learned to get her partner's attention and to take turns. She learned language in the form of hundreds and hundreds and hundreds of words. She learned how to participate in speech therapy. She learned to be confident, and that what she had to say was important. We didn't push pause on her development in hopes of coming back later, when she was good enough. Instead, what Elanor and I have been doing for the last year is building her a foundation for speech, so that when the Avalanche happened she would be ready. How could I possibly regret that?