Some generous people in our church presented us with this incredible water table they made for Elise. Ez first had the idea but didn't know how to go about making one. His idea got pitched to another person and pretty soon a whole team of people helped construct it. I love how it turned out but most importantly I love how happy it makes Elise when the water turns on. I have seen so many good people go out of their way to brighten one little girl's day and the effects trickle down to the rest of our family. Elise really does bring out the best in others.
Elise has learned a very valuable form of communication: bringing us things she really wants. When she was first learning this, whatever she presented us with, we'd reward her right away to help her learn the concept. Now that she has learned cause and effect we can when needed say, "No not right now" and she understands. Sometimes she'll throw a pretty good tantrum and other times her bottom lip will turn out, her eyes fill with tears and a little cry will come out. I actually am glad to see her start doing this because it shows she understands what I'm saying. These are things she typically brings us that she wants:
my phone which means she wants to watch a show
a bag of marshmallows or a wrapper of some food she's found that she really wants to eat
her music walker toy which is not at all small (I find her dragging this all around the house until she finds someone to turn it on for her)
There are times when I'll be in another room and I'll see Elise carrying with one hand a jar of applesauce. Sometimes I'll get lucky and catch her in time before she kind of tosses it in my direction and other times I'm not so lucky and applesauce spills all over the carpet.
The other day I was getting ready in my bathroom when Elise came running in with her swimsuit in her hand. She sort of shoved it at me for me to take. I looked at her and said, "Elise do you want to go swimming?!" Immediately her head shot in my direction and her eyes very intently looked in mine and a big smile came across her face. It was one of those moments that I'll never forget. She understood me. She totally understood me!
Elise began jumping and doing her repetitive hand movements very excitedly and squealing. She ran into my closet and I found her looking up. I went in there and followed her gaze to our swim towels. I realized she knew that swimming meant getting our towels that were in my closet. I got them down and said, "Okay let's go swimming!" She was all smiles. She loves to go swimming; it's her favorite thing. I love taking her just to see how happy and full of life she is there.
I'm realizing just how smart she is and that she understands a lot more than I give her credit for. Since that day to tell me she wants to go swimming she'll find and hand me her swim diaper, swim towel, life jacket or even sometimes she'll try to drag the sprinkler hose into the house! That's one that always makes me laugh. I've heard it many times but it's really struck me lately to "Always assume competence."
July was good to us! Christmas came early for Elise and she got her new Convaid stroller and Tobii communication device!!
Since January we have used the running stroller almost every day. It has been a life saver and has helped in so many different situations. However we realized that if we used it at the rate we are now it won't last us as long as we had hoped.
In February Elise started physical therapy (PT). It was something I've been meaning to get her in but hadn't gotten around to it. After starting at a new facility for OT, the PT there dropped in on a session and said she'd love to put Elise on her schedule! She only had a couple openings and one happened to work with our schedule. After Elise's second session she told me we could qualify for a stroller through Medicaid. There are some things that we work and work relentlessly on with Elise and other times Heavenly Father places things into our laps. The latter is what happened with her PT who has been a huge asset to Elise's progress and getting us a stroller.
The stroller came in July. It already has been a blessing and the answer to our stroller problem. It is considered a wheelchair but is more like a larger and sturdier umbrella stroller. We will use it for parks, stores, and just everyday stuff. The other stroller will be more for recreation: running, biking, hiking, and cross-country skiing. We love to get Elise out of the house as much as possible and she loves being outside so both of these strollers will help her be able to do those things.
A couple weeks after her stroller came, Elise's new communication device arrived. We used to use an iPad with a communication app on it. It worked well but beginning of the summer the iPad ended up twice in the water. The first time it survived getting thrown in the bathtub but the second time it was thrown in the washing machine and wasn't quite so lucky! After those incidences along with some other things we realized realistically iPads weren't going to work for Elise or us. We'd be replacing them every year or two.
Her new speech pathologist had suggested months before that we switch to the Tobii device. I was hesitant about making the change but after learning that Medicaid would cover the cost and they were the best devices for Rett kids I began the paperwork to get her qualified. I love this device because it is solely a communication device, not a toy. Elise knows that is her voice and is how she tells us what she wants. I love that the setup is so easy. I also love that it has the capability for eye gaze. If in the future her hand use worsens and direct select finger pointing isn't accurate anymore then Elise could talk to us with her eyes instead. It's the same program, just a different mode of how to speak.
I'm continually amazed at how we are guided and led as parents and caregivers to what Elise needs. I see it all the time. We aren't left alone in knowing how to care for her. Little by little we are guided to certain therapists or are led to know what to do for her. These two new therapists and what they've helped us get have all been a huge blessing for us and Elise!
I LOVE being a mom to my 5 kids; one with special needs. There is no greater joy than being a parent! I love each one individually but this blog will mostly focus on our daughter with special needs and our journey with her. Thanks for reading!