As Jess got on the van this morning to go to her work program, we noticed there was a substitute driver. Rob has driven her several times over the course of the year. However this morning, he asked what was she carrying with her? He was referring to her AAC device. Like most people, he has not seen someone speak through a computer. [Read more…] about One person at a time…
Speak for Yourself
We just adopted a puppy. Like all dogs, Roxy has a spot you can scratch which prompts her to scratch in the air with her back foot. This reminded me that Jess has a spot which prompts her to talk, it’s while we are driving. Of course, I can’t model while I’m at the wheel, thankfully, I’m not needed. [Read more…] about Drive-by talking
Our definition of vacation is anywhere but home. Jess has it in her mind that we are going to Maui. The night before, because I am a geek, we watched the movie Gigit Goes Hawaiian. What can I say? I love old movies, had a crush on James Darren, and Jess likes surf movies. A life time ago, Maui was my home…sigh…. hate to break it to you kid, we are lucky to be getting out of New Jersey.
As we were preparing to leave, Jess was a chatterbox. One of her monologues she said “excited, ready, now, now, now” which contradicts what she said earlier that she was being “patient”. She’s making plans to go swimming, watch movies and has decided what and where we are going to eat. Did I not tell you she’s a foodie?
Once on the road, we thought about playing a game of I SPY. Jess started off by pointing out a police car (using Speak for Yourself). He was parked at the Dunkin Doughnuts. That was just too easy.
After a couple of hours, Husband asked where we should stop for dinner. Jess requested ice cream. I’m sure she will change her mind to Burger King when she sees the signs. We ended up settling for McDonalds. There really isn’t much choice while on the road, but at least they had minions. [Read more…] about Are we there yet?
Last fall when I went to the Closing the Gap conference, I met a few moms who used business cards. The cards weren’t for themselves per se but shared information about their daughter’s who had Rett Syndrome. There is so much we don’t know about people with disabilities. It’s easy to make quick assumptions based on what we see. (You know what they say about assumptions, they tend to be wrong.) Cards allow for information to be shared without having to go into a 10-minute verbal dissertation. It isn’t that I feel the need to explain, but to educate. Honestly, I hate having to educate, but how else are people going to understand unless someone takes the time to share?
This morning Jess could have used such a card. We were at the check out counter at the market. She wanted M&M’s and I said no. Who eats M&M’s at 9 am? Then the cashier, bless her heart, offered to buy them for her? Yes, a kind gesture, but who does that? Jess is 23, not six? She was treating Jess “special” and not in a good way. [Read more…] about Let me introduce myself, here’s my card
Recently I was asked why we chose Speak for Yourself over other AAC programs. It’s pretty simple, SFY did everything that the other programs could not. If you have read any of our story, you may find this repetitive, so just skim till you get to the middle.
Jess had another AAC device for ten+ years. Over time, she wanted to use this less and less. Part of this was due to the fact that we did not know what words to program in for her. We could not guess the words that she wanted to say. Even though it had the capability to hold the language, it wasn’t user friendly for someone that was as significantly motor-planning-challenged as Jess was. She realized it was faster to get her needs met non-verbally than it was to navigate through layers of pages than it was to find her words on the Dynavox. [Read more…] about Speak for Yourself; why we chose this AAC
Every day I find myself repeating these same words, “what did I say?”. Why? Because the person I am talking to is not appear to be actively listening! I’m pretty certain that they heard me the first time, so I don’t repeat the specific request and instead ask “what did I say?”. I’ve put a name to this phenomenon it’s called ‘Mommy deafness”, the inability to listen to one word she says. [Read more…] about What did I say?