Imagine you are 7 years old.
Imagine being 7 years old, and wanting to play with the toy in front of you, but your muscles just can’t coordinate well enough to do it. Even if your muscles worked a little better, the buttons are hard to push and you just couldn’t quite get it to work. So, you sit there, and look at the toy, and maybe imagine how fun it would be if you could just get it to work, and play with your brothers and sister. And instead you watch them play with it for you, and you can laugh along.
When my daughter Cici was 11 months old, she choked on a piece of fruit while eating dinner, and suffered a severe anoxic brain injury. When we brought her home from the hospital 6 weeks later, we looked around, and realized that we didn’t know how to play with her anymore. Her twin sister was learning to walk, and playing around with typical one year old toys – walkers, board books, toddler stuff. But Cici, well, we weren’t really sure what to do with Cici. She came home from the hospital on December 6th, right before Christmas, and we didn’t have a CLUE what to get her for Christmas that she would actually enjoy. We weren’t sure how much she could see, and she definitely couldn’t track anything with her eyes, she couldn’t reach out for anything purposefully, she couldn’t grip anything, even an infant toy, her senses were overloaded all the time, as her brain was trying to make sense of what it had lost. Was she in there? How could we know? How do we figure out what she likes? How can we help her enjoy life in this body that doesn’t do anything she wants anymore? We were lost.
Fast forward seven years and it is STILL just as hard to buy birthday and Christmas presents for Cici as it was then. However, we have learned more about Cici every day after that point. By using switches with very subtle hand movements we are able to ask her questions and figure out what she likes to do and what she wants to do, and are able to interact with her and give her more independence every day.
It turns out she is a normal seven year old kid in there! She likes princesses and hearing her brothers and sister get in trouble, and she likes to listen to books and she LOVES when she can control her environment, and make things happen in her world. I look back on the time right after her injury, and wonder how frustrating it must have been for her – to sit and look at a toy, but not be able to do anything with it. We tried to choose toddler and infant toys that she could attempt to control, but most of them needed more force, and more coordination and more stretching, and her body just couldn’t do it. It still can’t!
We started to explore button switches and adapted toys a few years in, and now Cici communicates by using small hand or head movements with button switches. Last year, we requested a toy from Santa’s Little Hackers, and I chose to get involved with the organization as well. I wanted a toy that all four of the kids would like and that Cici could actively play with too. So naturally, with four kids eight and under, I requested the Minion Fart Blaster. Because, well, this is the age for that kind of thing!
Here is when Cici got to see her toy for the first time. I want you to note that we didn’t see a smile from Cici for about a year after her accident. NOW, we get them often. Not all the time, but they are getting faster and more responsive. This was the most excited I have seen her about a toy in a long time. You can see her working to move her arm towards the button, and activate the toy.
Little brother playing with it too!
You see, being able to activate a toy like this, and working on the skills for play and for fun, is the absolute KEY to communication. Because if she can activate a button or toy purposefully then she can communicate. And we can use these same skills with a communication device.
Cici’s teacher just wrote me a note the other day. It said: “In my (almost) ten years teaching, I have never worked with a child as eager to learn and curious about the world as Cici! Cici challenges me to be a better teacher every day. I promise I will do everything I can to help her access her communication, the curriculum and the world!”
Since we got this toy a year ago, we have worked with it, and several other toys to refine the button activations with both her arm and her head, and she is now using an ipad and basic arm movements to answer questions and communicate. She is more active with classroom activities and home activities by answering questions and being involved in the process of, well, life. And fun is part of life, and just like all kids, she learns through play, but these toys aren’t available at Target (they are, however, available online for over double the cost of the actual toy itself to be switch accessible)!
Please consider a donation to Santa’s Little Hackers to help kids and adults like Cici access play:
https://fundly.com/santa-s-little-hackers-2015-toy-drive (link inactivated)
Or buy a toy from the Wish List:
http://smile.amazon.com/registry/wishlist/1QR9PB6DBWVY1 (link inactivated)
Or attend the toy making event on December 5:
https://www.eventbrite.com/e/santas-little-hackers-2015-toy-making-workshoppe-tickets-19349265173 (link inactivated)
Because this non-profit relies entirely on fundraising to be able to give a toy free of charge to every family, please connect with us if you have any corporate or other connections for donations at