My One Regret
I have few regrets about the choices I’ve made raising Aidan. It’s been an intense lesson in winging it; gathering as much information as possible, filtering it through layers of emotion, and making the best decision I could at any given moment.
I don’t regret putting in and then taking out Aidan’s feeding tube.
I don’t regret pumping breatmilk for only six short weeks while taking care of my toddler and being separated from my sick baby.
I don’t regret not insisting on an EEG earlier, sitting naively with those curious twitches that were most likely seizures.
I made the best decisions I could at those moments.
I do regret not giving Aidan a voice sooner.
We followed what now I’m seeing to be the party line.
We got an AAC evaluation that was neither particularly helpful nor decisive. We hesitated, wanting to be sure that if we were going to spend yet another chunk of medical money that it would be on the right device. We waited with hope, wanting Aidan’s muscles to get stronger, his brain to get smarter and for him to finally speak. We sat in a puddle of overwhelming chaos; there were just too many other circumstances vying for my attention.
So I said what most other parents of non-verbal children say, “He communicates in his own way. We’re lucky he’s so social and animated. We understand what he wants.”
I feel so emotionally conflicted about hearing those words now. On the one hand, I want to shout, “DO NOT WAIT.” Babies are born being inundated with language and attempting to communicate. Your child deserves no less. Yes, using a device can feel different and medical and awkward but it’s also about early access and listen to me and watch me learn. I’ve had animated conversations that end with me whipping out my ipad and all but screaming “This has changed our lives.”
Because it has.
I have a hard time listening to what other kids can’t do, or what they must do before they get a talker. I fell hard into this trap. Aidan could barely point, would hardly look at the screen when we finally got him his talker. It would be easy to argue that he wasn’t ready.
Guess what he does quite frequently after nine months of using his talker?
At my nose, at dinner, at Daddy, at my finger, at the blue sky.
Aidan still only scans the screen quickly making me realize how important it is that his words stay in the same place. The first two speech apps we tried with him never had the same words in the same place and he wasn’t really looking at them to know what was there. Now, through motor memory, he’s able to locate even words that he doesn’t use often.
But still I get it. I have tons of compassion for those who doubt or hesitate or are just too overwhelmed to give their child words. I’m still that mom. There will always be something I’m not doing well or soon enough or right for Aidan because his needs are many and complex. It’s hard to add something new to the day. It’s emotional to wonder if it will ever be useful. I’m making the best decisions I can in any given moment.
I was thrilled when Aidan quickly and consistantly used the first three highly motivating words I opened for him on his talker: EAT, DRINK, MORE. I slowly gave him more words and then stopped for awhile. This summer I wanted to make a thoughtful decision about what one or two words I would open next.
But then I got excited and thought, “No more regrets.” I opened almost 15 new words.
I started modelling them right away.
Mommy gets FRUSTRATED when you throw your spoon.
Look, your toys are all over the FLOOR.
Should we ask Liam to DANCE?
And still, damn-it, still I doubted. This wasn’t a well thought out plan. Were these the right words? Is it too many at once?
The same day I opened these words, the same day I showed him where they were on his talker, this happened – We finished dinner and I was really ready to start the bedtime routine. Aidan reached for his talker and said, KITCHEN, HUNGRY, EAT, MORE.
Two new words and two old standbys.
A mis-hit? A mistake? Gibberish?
I think not. Let there be cake.
And there was.
Here is a video of Aidan at physical therapy followed by him having the opportunity and ability to tell his Dad about his day.
Aidan uses the Speak for Yourself app on the iPad with an ion Clipster for amplification and a Daessy mount for his wheelchair.
If you are a parent considering AAC for your child, do yourself a favor and watch this informative one hour webinar by Dana of Uncommon Sense on early communication. Feel free to ask me any questions as well.