Monday, November 24, 2014
In the spring, a sweet lady named Courtney befriended me after seeing a picture of Lucy on the Great Bike Giveaway page. Courtney jokingly says she "stalked" me after falling in love with Lucy's picture. It turns out she also has a daughter named Lucy, but her Lucy has Angelman's Syndrome. Courtney found me via my blog and we became Facebook friends. She then invited me to join a group on FB that is centered around teaching literacy to children with Angelman's. Angelman's and Rett have many similarities, and so the group has been extremely beneficial to me. What is especially fantastic about this group of people is their optimism and their belief in their children, and their belief in all children with disabilities, to learn!
So, one concept I had never heard of before is something called an "alternative pencil". This is any method of writing that doesn't necessarily use an actual pencil. People use paper flip charts, eye gaze boards, keyboards, alphabet charts on their communication devices...you get the idea. I guess I hadn't thought yet about how Lucy was going to learn to write, but I often think of when the day will come that she can just type out what she wants to say and will not need to use pictures to communicate.
Within Lucy's paper PODD book she has alphabet pages she can use.
In her PODD that uses the Grid2 software on her Tobii, she also has an alphabet section where she can practice using letters and forming words.
And this is what each section looks like when it is opened:
Here is a picture of what Lucy wrote the first time she gave it a try, and then she illustrated it by choosing items to make a 3D collage:
This is her writing from another time:
And a few weeks ago we used her alphabet to make a birthday card for her sweet friend, Mason.
This time I asked Lu to help me spell Happy Birthday. In the word happy she correctly found the H and the P! And in birthday she found the B and I believe the R, but I can't find the paper where I originally was dictating her letters.
So, obviously Lu isn't "writing" "words" at this point, but what she is doing is exploring, experimenting, and learning. Children that can pick up a writing implement and grab a piece of paper will spend hours and hours of their life learning about letters. This is how Lu can do the same thing, just, as always, in a slightly different way. She won't adorably make backwards letters, or write her name gigantically across a page, but she will write her name. She will use letters. And what she will do someday is simply type out what she wants to say, and she will truly be an independent communicator. When we are messing around with the alphabet, each time I remind her of how she will be able to do that someday and she will truly, truly be able to say absolutely anything she wants!
Here are a few great links to learn more about alternative pencils, as I am just learning myself!
Both of those links have products that can be purchased if someone chose to do so. I myself, if we didn't already have great alphabet tools, would just make my own. It's not rocket science, but not everyone's first thought is to just make their own of whatever is being discussed, but mine is. I just wanted to share the links for info, inspiration, and guidance.
So, let's get EVERYONE writing!
Tuesday, November 11, 2014
Monday was golden. Lu and I slept in together until 7:30. That made her first feed late, which is no big deal, but we decided not to go swimming at the Y like we usually do on Mondays since we were running late. Lu didn't have any therapy appointments scheduled, and she didn't have any giant shaking episodes. So, like Pony Boy, the day was just GOLDEN. She was awake, alert, and happy. We had no schedule to follow but our own, the sun was shining and it was 60 degrees out!
At breakfast I read a letter to Lu that came in the mail, the real mail, from her friend Maddie. Maddie asked what she did on Saturday. I helped Lu get started on her Tobii to write a response to Maddie. We went to special events in her PODD. Lucy chose to say "present, new" which surprised me because we also went out to dinner and did some visiting, but she did get a present on Saturday also. I asked her if she could tell Maddie what kind of a present she got. It took her a few minutes, but she eventually said, "Halloween", which was correct. I then went to people for her and asked if she wanted to tell Maddie who the present was from. On the third try she chose Grandma Brenda, which is who the gift was from! It was great, and totally what she wanted to say, not what I thought she was going to say.
After breakfast we did some walking and standing and then kept her braces on so she could get even more exercise throughout the day. We had lunch, and then went out to the back porch to do some "gardening". Lu asks to garden all the time, so we do a lot of container gardening. Yesterday we were repotting a "Lucky" clover plant that we started from seed, and a spaghetti squash plant. I saved some seeds from a spaghetti squash a local farmer friend gave us, and just to see if they were hybrids or not, I planted a few to see if we could use them next spring. It not only grew, but is doing amazingly, so Lu and I are going to see if we can grow a squash in the house.
If you scroll to the top of the blog you will see a picture from late in the summer where Lu and I were planting peas. Here is what we observed yesterday:
If you look closely, you can even see a little pea pod. Lu and I actually counted four pea pods total, and we talked about how we will pick them eventually and cook them for supper some night. So, then at supper that night, Chad used Lucy's PODD book to ask her how many peas we have. I told her I would help her answer and I modeled how we could say, "We, have" and then I let it up to her to tell her Dad how many pods there were and here is what she said:
I struggle with the fact that so many doctors, families, school teams, etc. around the world still don't believe that trapped inside of these amazing girls are people who think and learn, and are smart, and have things to say. I reminded Lu in a whisper that we had seen four, so just by hearing the word, she was able to locate the correct number on her screen and add it to our sentence. She completely understood what I was asking her. We work very, very hard every day to help Lucy learn how to communicate and I just believe so, so strongly that a large part of her success comes from not going to school.
Days this golden can sometimes be few and far between, especially lately with the shaking episodes followed by lethargy. But even on the less-than-golden days, we still snatch any opportunity we can to learn. The beauty of being educated by me at home is that we can do whatever we want, and most importantly, whatever we NEED. Sometimes Lu just needs to cuddle, and rest, and she always tells me so. The busy classroom is not conducive to just stopping to rest and cuddle when necessary. And, she needs to cuddle me, not some stranger.
So, on this golden day, we gardened. We learned how our pea seeds are becoming pea pods. We counted them, we did pt, OT, and speech all be ourselves. Lucy told her Daddy about her day, and began writing her first letter to a friend. And we even had time to walk with Finn up to Grammy and Pappy's to get some candy Grammy made. It was just a great day, and a great example of how being homeschooled is what is best for Lucy.