Field Trip and Play Date

Last Thursday we went to the Oklahoma Aquarium with Carrie, Mollie and Henry. We explored and looked at lots of fish and the girls got to touch a few things (a star fish and shrimp). It was a little difficult to participate in everything, as the hands on things aren't wheel chair friendly. It was neat point out to them all the big, small, typical and exotic creatures. I think the one-on-one time with Mollie was just as beneficial as the activities we did. The girls spent so much time giggling in the back seat on the way there and back.
We had a play date at our house on Friday morning. Lisa and the kids came over and everybody pilfered through the piles and piles of toys. They drew on the playroom walls with chalk and even had a few arguments over toys. Ahh, how wonderful it is to have friends you can fight with like sisters. What a blessing.
This weekend has been great family time, taking it easy and just hanging out together.
Starting tomorrow, we are back on a good schedule with therapy. Monday, Tuesday, Thursday... 2:15-4:15. That is a great schedule for the girls and puts them at getting a good balance of speech, physical and occupational therapies again. Oh, and it gives me 2 hours, 3 days a week all to myself! I can be a better mommy and teacher with a little bit of time to myself now and then.

Art & Sight words

Yesterday we sat in the floor and colored on coffee filters with markers. No rules, just being creative and watching how the marker ink soaks into the filters. Taking off and putting on the marker lids is also good fine motor practice (as well as writing and drawing), though it is a difficult task as Emma's tremors progress and Alex's hands and fingers draw up more and more.

As I was helping Alex put a lid back on a marker, Emma took it upon herself to paint her fingernails with her marker.


Here were our finished products.


We also spent some time yesterday making flash cards. Instead of taking the typical approach to sight words (learning basics like 'it' 'the' etc), I decided that familiar objects would be more functional knowledge for them. As I said before, they can identify 'Alex', 'Emma', 'Mommy', 'Daddy', 'Harris'. So, we made cards with the names of family and a few basic things they like.
We were supposed to have a play date this morning, but had to reschedule for Friday, so instead we did more school work. I used the chalkboard on the playroom wall to display the names and we cut out pictures of (almost) everybody and put them above each card. That way they can see the object or person and the word together. We will just keep going over these things dad after day in the hopes that some of them will stick. As I have learned (and the developmental psychologist confirmed last year), repetition is the key for our girls. She explained that due to the nature of things we may go over and over something and one of three things will happen... one, they will get it and keep it... two, they will get it and lose it... three, they will never really get it. Because learning is so difficult, it is important for us to focus on things that will be most useful and functional for the girls, now and in the future.

One last thing. Yesterday I went to speech therapy with Alex and we met with a therapist that specializes in augmentative devices. That is, devices that will speak for her when she is no longer able (or even now when it isn't always clear what she is saying). After trying several things, we settled on a device that looks something like a cross between an iPad and a laptop. It has a touch screen and can be programmed (and reprogrammed) to the needs of the child... however basic or advanced is needed/desired. The possibilities with this device are really unlimited and it should last as long as the girls need it, since we can modify as needed. We will get a special attachment for the wheel chair so that Alex can easily access it, but it can be removed and held in her lap or on a table if so needed. She just touches the emblem she desires and the computer will say it for her. Really, very cool.
In all of this work (that they have been doing all summer) we have also decided to go ahead with the process for Emma also. She seems to be running only about 6 months behind Alex in the progression of many things, so we want to be prepared. It is a lot like the process of getting a wheel chair, with lots of paper work and red tape for insurance to approve it, all before it can be ordered. We expect they will get them around Christmas time.

Declaration

It's August and that means that school starts soon. We have never really stopped learning, but we are about to jump back in a little bit. I have posted our goals to the right. They are reasonable and necessary goals. The biggest push for us is the goal of learning more sight words. I'm not sure we have the ability to grasp phonics (thought that doesn't mean we don't work on it often), so we are going to focus on sight words. Both girls can identify their own names and a few other words (Poppy, Nonnie, Mommy, Daddy, Harris). They seem to identify words by the first letter. Alex and Emma both know their letters quite well. The last few days they have rediscovered their Fun2Learn laptops. Instead of just pushing letters and saying them, Drew taught them to play a game on it. It shows a letter on the screen and they have to find it and push it on the keyboard. Alex got to level 5 the other day! Emma's biggest deal seems to be disinterest. She will ask me "What's this?" when she obviously knows the answer. I think she just craves the interaction with me, and there is the fact that her attention span is very short. That just means that while I encourage her to do it on her own, I also make time to participate with her.

They are still getting physical and speech therapy twice a week (for one hour each session) and Friendship has now hired an occupational therapy assistant that will be seeing the girls. I'm glad to have them back in OT and working on fine motor skills and planning. Also, having a new therapist provides the opportunity for fresh activities and exercises. In speech, Alex is working with a therapist that is trying out augmentative devices. This will definitely be needed and beneficial in the near and long term future. Whatever device we decide on should help her (and eventually Emma also) to communicate when her words are no longer understandable.

I will continue to make a point of involving the girls in household responsibilities (picking up toys, putting away clothes, etc.) While getting out and about is more difficult than it was a year ago, we will not stay cooped up in the house all the time. Shopping, visiting and caring for friends & family, and letting others help us is/will be priority. We will get back into the routine (after a crazy summer) of at least a weekly play date and attending Sunday school. I also make a point (and will continue) to involve the girls in their own personal care. Sometimes it is easier to just do things for them (and I am guilty of that), but I want to encourage their sense of self by allowing (and encouraging) them to do/assist with their feedings, clothing & pull up changes, bathing, etc. Also, things as simple as choosing their own clothing, activities, etc. seems to give them more feeling of control and stability. Striking the balance is sometimes difficult. Too much freedom or responsibility makes them feel overwhelmed and frustrated (to the point of melting down or getting weepy), while no choices or control can produce the same things. Balance. Oh, and I can't forget play. I believe that play is very important and Drew & I will continue to encourage it. Playing outside, playing inside, playing with others, playing alone, playing with mom & dad, playing with the dogs, playing games, etc. Alex & Emma LOVE playing games and I often use games to teach. They think we are playing, I know we are also learning.

So, there it is. Our approach to teaching and helping the girls develop to their fullest.

Pictures of recent art work.

Alex spent hours drawing in her new journal (one of Daddy's presents from California) the other day. Her focus... pictures of family. She works so hard and is always so happy to share her work, sometimes asking me to label things (or people) for her.

Emma's drawing/writing is still pretty scratchy. She can draw circles and scribble, but nothing very legible. Her tremors are much worse than Alex's, so that is a big factor.