Tuesday, September 21, 2010

Letter to parents

Let me introduce you to my daughter, Mary.

Mary is a student in your child’s class. She has been sharing information about herself with the children via her DynaVox. Her Dynavox is her augmentative communication device – it is a computer that can talk when she activates it with a switch. She is learning to communicate that way because she was born with Arthrogryposis and cannot use the muscles in her mouth very well. Because Mary’s mouth muscles don’t work very well, she has a tube in her neck for breathing. It is called a tracheostomy – we call it a trach (pronounced trake.) Sometimes Mary needs secretions suctioned out of her trach. It doesn’t hurt her and it isn’t messy when she needs this. She has a nurse with her all the time and her nurse uses the suction machine to help Mary. She also uses a wheelchair because her joints and muscles in her legs don’t work the same as most people. Mary’s wheelchair is purple, one of her favorite colors! Some of the other things she likes are horses, Dora, swimming, playing outside, and reading.

If you have questions or concerns about Mary’s condition or friendship with your child, please feel free to call me.

Chaney, Mary's Mom
This is the letter I wrote for Mary's classmates' parents.  I am pretty pleased with the way it turned out.

Random words of a busy mom

I have been too busy to post.
School has started and I am back at work.
Mary loves PreK and her teacher - she made a best friend on the first day! lol
Her teacher wants me to write a letter to the parents explaining Mary's medical issues.  Mary used her DynaVox to explain them to the kids and the teacher wants to be sure the parents hear the same version.
Mary lost both her top front teeth.
I got sick on the second week of school.
Mary got sick a few days later.
We visited a pumpkin patch and Mary showed me how strong she is by pushing a bunch of pumpkins around.  She also enjoyed the haunted Tee-Pee with Jack-O-Lanterns and glow-in-the-dark stuff.
I'm exhausted.
When is the first school vacation?

Thursday, September 9, 2010

Doctors and Labs

Mary is experiencing some odd lab work and visits to new specialists.  If you live near a pediatric motility specialist, please let me know about it.  There are only a few in the country.
I can't wait until we get her DynaVox VMax with the accessories so we can travel to the doctors appoinments with it and she can answer questions.  I tried to ask her about pain at an appoinment, and all she could do was laugh at me.  If we had her DynaVox, she could have at least answered yes/no or used her body parts page.  Another month and it should be here.
Mary has been having fun with friends before her school starts.  She had a playdate with a new friend and they played dress up.  She also went to the zoo with a friend and enjoyed the rhinos and playing in the animal playground equipment. 
Mary has been playing with her stuffed animals, too.  She recently saved her pony from Swiper the fox.

Sunday, September 5, 2010

Inclusion for my child

I am choosing to put Mary in an inclusion district-based program this school year.  A friend led me to an online magazine with this article that describes a child in a similar situation that is working well!  I am going to share it with Mary's teachers and Spec. Ed. Chairperson and hope they take some of the good ideas from it!