Fast and furious describes life these days.
First of all just in Ayden Jane's schedule. She leaves for school about 7:20 or so and gets home about 2:45. Early is actually good for her so we are good there. She has lots of after school activities - Monday: swim team, Tuesday: horses, Wednesday: swim team, Thursday: soccer, Friday: as much out door play as we can find, Saturday: soccer game, Sunday: church and evening church club. We slip in long dog walks, trampoline and other fun with the neighborhood kids and board games with Dad whenever we can.
Then there is homework. Ayden Jane is totally keeping up in second grade but I will say homework is not taken lightly. Spelling she can whip through, other than she needs to take some time to be sure her handwriting stays legible. Reading she loves to do because her teacher set her up on a computer program which allows her to read leveled books and moves her up gradually in the system they use. (Fountas and Pinnell) She is so goal oriented it is perfect for her and she does it 100 percent independent - usually at the table while I make supper. Lastly, math. She finds the math most challenging. It is interesting to work with her on it because sometimes she just gets it and she gets so tickled and just grins from ear to ear. Other times I'd have better luck explaining it to the dog. Usually, just about the time I think maybe she is never going to get it, the light goes on and she flies through the rest of it.
I had her teacher conference just before we headed out for the race. One concern is getting focused and completing tasks in a shorter time frame. Mostly this applies to math. I think Ayden Jane is a little unsure in the math so she is a master of finding other pressing issues - like the need to have the perfect tip on her pencil or to throw something away.... Yep. Pure procrastination. The other thing is that her teacher notices it can be hard for Ayden Jane to focus during a large group instruction. I am sure this is that part of her that struggles to screen out all that is going on. It's the same part that was so overwhelming when she was little that she never spoke and sort of shut down in new places. Like everything in the room is really loud and really bright and she has a hard time making unimportant things fade into the background and focus on the important things.
Her teacher is great and will help her work through these things. Also, I talked to Dr. Miller about the attention piece as I know lots of kids with PWS need help in this area. There are a few medications that seem to have good results. We are definitely not there yet, but it is nice to know there are options as she gets older if the distract-ability gets in the way of her learning.
Lastly, my biggest hope is that the Oxytocin study Dr. Miller wants to do gets off the ground. The things that the results of the phase 1 study indicate as I understand them, seem like they would make all of this that Ayden Jane works and has worked so very hard to gain come easier. It could come for her, like it comes for typical children. Her playing field could be leveled and she could not always be running up hill.
First of all just in Ayden Jane's schedule. She leaves for school about 7:20 or so and gets home about 2:45. Early is actually good for her so we are good there. She has lots of after school activities - Monday: swim team, Tuesday: horses, Wednesday: swim team, Thursday: soccer, Friday: as much out door play as we can find, Saturday: soccer game, Sunday: church and evening church club. We slip in long dog walks, trampoline and other fun with the neighborhood kids and board games with Dad whenever we can.
Then there is homework. Ayden Jane is totally keeping up in second grade but I will say homework is not taken lightly. Spelling she can whip through, other than she needs to take some time to be sure her handwriting stays legible. Reading she loves to do because her teacher set her up on a computer program which allows her to read leveled books and moves her up gradually in the system they use. (Fountas and Pinnell) She is so goal oriented it is perfect for her and she does it 100 percent independent - usually at the table while I make supper. Lastly, math. She finds the math most challenging. It is interesting to work with her on it because sometimes she just gets it and she gets so tickled and just grins from ear to ear. Other times I'd have better luck explaining it to the dog. Usually, just about the time I think maybe she is never going to get it, the light goes on and she flies through the rest of it.
I had her teacher conference just before we headed out for the race. One concern is getting focused and completing tasks in a shorter time frame. Mostly this applies to math. I think Ayden Jane is a little unsure in the math so she is a master of finding other pressing issues - like the need to have the perfect tip on her pencil or to throw something away.... Yep. Pure procrastination. The other thing is that her teacher notices it can be hard for Ayden Jane to focus during a large group instruction. I am sure this is that part of her that struggles to screen out all that is going on. It's the same part that was so overwhelming when she was little that she never spoke and sort of shut down in new places. Like everything in the room is really loud and really bright and she has a hard time making unimportant things fade into the background and focus on the important things.
Her teacher is great and will help her work through these things. Also, I talked to Dr. Miller about the attention piece as I know lots of kids with PWS need help in this area. There are a few medications that seem to have good results. We are definitely not there yet, but it is nice to know there are options as she gets older if the distract-ability gets in the way of her learning.
Lastly, my biggest hope is that the Oxytocin study Dr. Miller wants to do gets off the ground. The things that the results of the phase 1 study indicate as I understand them, seem like they would make all of this that Ayden Jane works and has worked so very hard to gain come easier. It could come for her, like it comes for typical children. Her playing field could be leveled and she could not always be running up hill.
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