so much to share... so little time

Mary has been a busy girl and I have been a busy mom.  Sorry I haven't posted anything recently.  Holidays are upon us and Mary has been having some medical things. -nothing serious.  Mary had some MRIs and we are trying Botox on her salivary glands - no results yet, but I am hoping!  We also have an appointment in a motility clinic next month!  Yea!  Hopefully they can help her body move things along better. :)

In DynaVox news.... Mary has her switch mount and ear pillow for her wheelchair!  She can use it perfectly!!!! yeah!!!!!!  It was awesome - the minute it was put together for her, she understood.  And she is a little chatterbox!  At the doctors, she communicated well with the Dr. and then she asked me if I washed my hands after I used the bathroom.  (she's learned how to be fresh with it already)
At the Christmas party, she said, "Merry Christmas," and told me when she needed to go to the bathroom and when she wanted to get out of her chair.
Unfortunately - 2 things.
1. Mary is freezing her teachers out at school and crossing her arms instead of using the DynaVox when requested.
2. The DynaVox Mount that we requested was denied twice, so we have to go to 'fair hearing' to try to get it approved through the insurance.

Mary has also played dress up with Dora using her DynaVox to tell us which piece of clothing to put on Dora.  She wants a new dress up Dora for Christmas.  Mary and I played Candyland last night with a friend.  It was the first time Mary played and she was excited about it.  She used her DynaVox to choose to be the green piece.

Things are going well here.  We are getting buried in snow, but that is par for the course in Western NY!  :)

This free ecard generated with Smilebox

Mary and I spent a lovely mother/daughter day together.  We don't live by family, so there is no big meal for us today.  Mary and I went to the movies and enjoyed the newest Disney princess movie, Tangled.  It was a good one and Mary really enjoyed the music, in particular!  I hope everyone is enjoying the blessings in their lives.  I am really enjoying my first Thanksgiving with my daughter!!!!

I just don't understand

-how I can see how smart Mary is and others can't.
-why Mary uses her DynaVox independently at home and at the doctor's, but only HOH at school.
-why I do the majority of programming on Mary's DynaVox when she has 2 speech therapists, an assistive tech. specialist and a teacher.
-why it takes multiple phone calls to GI to get one referral to a motility specialist that I was told was going to happen 2 months ago.
-why Mary's DynaVox accessories have not been approved and arrived yet.
-how come Mary's seizures can't be the kind that can be obvious and able to be well controlled.
-why I can't find a nurse I like to work on Saturdays

Mary Story

Mary's speech therapist wrote this story for the kids in Mary's class.  What do you think?

Mary cannot use her muscles like most people, so she does some things differently. She cannot use her mouth muscles to talk or swallow, so she uses a Dynavox to talk. And Mary cannot use her leg muscles to sit, stand or walk, so she uses a wheelchair.

One thing that is different is her Dynavox. Her Dynavox is like a computer and she can use it to talk. Mary might hit a button with her arm to make the Dynavox talk or her teachers may help her hit the button. She might use her Dynavox to tell you something or to ask you a question.

Something else that is different is her trach. It is a hole in Mary's neck that lets her breath. Mary's nurses, Juanita and Sonya, use a suctioning machine to get saliva out of the trach. This makes a loud sound but it does not hurt Mary. Sometimes Mary might cough to get saliva out of her trach. She is not coughing because she is sick, she is just doing it to clear her throat.

Another thing that is different is the way that Mary sits and moves around. She might lay down or sit in special chairs. The special chairs help Mary to sit up. Mary uses a wheelchair to move around because she cannot walk. Her wheelchair is purple, her favorite color!

 

Mary loves the color purple! She also likes horses, Dora, swimming, playing outside and reading books. You can ask Mary to play. She loves playing with friends! She especially likes to play on the floor and singing “Row your boat, Head Shoulders Knees and Toes” and “Shake your sillies out”.

 

Halloween... a bit late

Better late than Never?
Well, Halloween came to our house and we went to a party.

First, there was the decorating contest in the town.  Mary made sure she did her OWN work and not cheat like some others who obviously had their parents work on their pumpkins.  (I offered to help her, but she was adamant to do her pumpkin BY HERSELF!)  Mary stood in her stander and finger painted her pumpkin for the contest.  It was very original and beautiful. :)

 Mary's is the one next to the glittery cat.

Mary and I met some friends for the corn maze a few weeks ago.  It was a sunny, but cold day.  We had a nice time.  I posted about this here.  Mary also got to ride on a cow train and everyone said 'moo' the whole ride. 

hi mom!

We got our pumpkin to make a Jack-O-Lantern at the Country Way, where the corn maze was held.  We (I) worked hard on the pumpkin while Mary did a good job supervising from her pony walker.  She was very proud of the the Jack-O-Lantern, but not interested in getting the goopy stuff on her hands! 

Mary was pretty excited to look at it at nighttime, too!

Mary dressed as Dora the Explorer for Halloween this year.  She adores Dora.  She has 2 Dora dolls and a bunch of other characters and several toys and movies.  Mary thinks it is a thrill to wear her Dora jammies to bed!  So I though it was fitting to allow her to be her beloved Dora for Halloween (even if I, myself, am not her biggest fan.)

Mary loved wearing her Dora mask.  At first she was leery of it, but she insisted on wearing it the entire parade at school.  We added Boots the monkey, Benny the bull, Backpack and Swiper the fox to her wheelchair.

Mary and I went to the church Halloween Party and Haunted house.  The best parts for Mary were the ghost bowling that she is playing in the pictures above and the indoor haunted house.  She loved the flashing lights and everyone saying BOO in the dark!!
During the day, we met my friend and her son at Starbucks and had to have a picture.

HAPPY HALLOWEEN!

Our ramp is featured in an online magazine

The ramp built for Mary is documented in this month's edition of Complex Child Magazine.

PreK Student, Mary

At Mary's IEP meeting last year, I pushed and won to hold Mary back a year.  She is getting an extra year of PreK before starting Kindergarten next year.  My reasons were because she has a fall birthday and she was still getting adjusted to her new home.  She was also still immature in a lot of areas, but I don't really think they took that into consideration since she is a person with a disability. She is doing real well so far this year, I think.
In the 6 weeks or so that she has been in school, I feel she has made many accomplishments!  She is in a regular ed. PreK class in her home district.  She has a 1:1 nurse who rides the bus and stays with her for the 2 1/2 hour afternoon program.  Mary has made friends and we have even seen some out in the community!

Mary sits in this rifton chair during Centers and during Snack

Mary has learned how to color using a specially made glove, made by her OT.  Because Mary's fingers do not bend, she cannot grasp anything.  This glove has a hole in it to hold the markers.  

coloring at school - sorry about the quality, disposible camera












Mary is having great success coloring independently.

We had Open House several weeks ago and Mary was so excited to show me all around her classroom and show me her projects.  She did a Green Monster project that she loved the most.  She also has done projects about emotions and they had just started learning letters.

outside her classroom at Open House
After the concept of Open House was explained to her, Mary was excited to take me there!

Mary is learning a letter a week and she really enjoys this!  She always has enjoyed letters and reading.  To help her, we put a letter 'worksheet' on her DynaVox.  She can work with this page to answer questions in class and to practice the letter, including the sound the letter makes!

I also sometimes give her 'homework' on her lightbox. 

 She can use one switch to activate the DyanVox and one switch to work the light box.

Mary has a few different options for sitting at school.  She also has time to play on the floor, when she usually lies down with friends - they even try to dance/shake sillies like she does!  When she is sitting, she is in the Rifton Chair, her wheelchair or in the chair that I got at a yard sale.  It is her floor-sitter for circle time.  Here she is trying it out for the first time.

we made some adjustments for saftey and support after this trial
Overall, she does very well with this, though.

Her class went on their first field trip of the year recently.  They went to a local farm and had a wagon ride, picked pumpkins and petted animals.  Mary LOVED it.  They were real good about getting the bus for her to participate, but I think next time they will also remember to include her peers on her bus.  (I am pushing for the full inclusion experience.) 

Mary continues to choose to listen to stories at the Listening Center every week.  She really gets into her books.  Apparently, one day the story had a part where the character was sad about the mother leaving and Mary got real sad.  Then she was happy when the story ended happily.

In vision, Mary continues to improve her tracking ability and increase her response time to lights in different environments.  She also is working on color identification.  Her vision therapist is helping us with using picture cues when her DynaVox isn't avaliable.  She also reminds us about glare on what Mary is looking at.

In PT, Mary is doing Outstanding!  She can stand for more than a half hour at a time in her stander and she can stand in a pony walker - she has even moved it independently 2x!!!

Mary is also practicing sitting on a platform swing.  She is belly crawling for up to 6 feet.  She is rolling up a hill.  Mary has gotten very strong lately! :)

Well, I guess that's the scoop on my girl!  She is having a good year so far and I (knock on wood) hope she stays healthy to have a good rest of the year!

The Fall

So what's been happening???
A lot.

Mary was insistent that I let HER decorate HER pumpkin for the town contest.  I couldn't help or give ideas... they were rejected.  Mary used her DynaVox to tell me that she was going to fingerpaint it and absolutely NO HELP was needed.

She is getting that way about a lot of things...
Her riding instructors have noticed....

Maybe that's why her horse keeps walking into walls.......

Mary has made so much improvement in her riding.  She can sit up for the entire lesson, holding her head up, keeping her back straight(ish) and her hips where they should be... She is riding a lot longer than when she started in April because not a lot of time is being spent repositioning her!  Too bad her mean mom is making her stop during the cold weather.  :s

Mary is 5 years old and very proud of that!  She had an awesome birthday party and 4 of her friends came.  The next day, she used her DynaVox to tell her classmates about her party. I am told she was super excited about it!

Mary and I have done a few fall activities this month and last.  We went to get some pumpkins and into two huge teepees.  They were real dark inside with lighted jack-o-lanterns - Mary thought it was cool!

We also went to Country Way Corn Maze which was awesome because there was a huge bale of hay for Mary to play in!  We also got another pumpkin and watched some duck races.  Mary played with a friend there, too.

 She is doing real fantastic things in school which I hope to post about later this weekend!

Got It!

Mary's got her blue DynaVox VMax!  Her reaction to it was great!  Very happy.  The following day, her nurse came and Mary rolled over to her new device eager to show it off!!
We are still waiting for some of the accessories to make it truly work for her, but we make do for now.  Mary uses it at school the best she can and she uses it at home.  We have started to take it out in the community when feasible.  She has used it at Sunday School and at the doctor's office.
At church, Mary used it to make choices during a coloring project.  That was successful.
At the doctor, Mary carried on a long conversation with me in the waiting room.  She was there for her yearly physical and wanted to know if the Dr. was going to look in her ears and mouth.  She also requested to lay on the bed (the pediatrician has a fun bed to lay on).  In the exam room, Mary said 'hi' to her Dr. and then asked if she was going to get a shot.  That was the end of the DynaVox, though... tears... 3 shots were coming her way.  :(
This afternoon, Mary used her DynaVox to let me know how she wanted to decorate her pumpkin.  The town has a contest for 4-9 yr. olds.  Mary chose to use fingerpaint on her's.  She will enter it in the contest next Saturday. 
Tomorrow Mary will try to use her DynaVox at her birthday party.
I will try to get some pictures up this coming week!

Do Unto Others

Do Unto Others

Think about this blog post when voting on the next election and healthcare issues

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?

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.

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!

IEPs by Dr. Suess

IEP

Veto by the boss

Mary chose blue.  The votes came in and the first place was pink, blue was second, and all the others had one vote each.  However, the boss spoke and she chose blue.  So once the leaves fall, Mary should have her blue DynaVox VMax with accessories: ear pillow, wheelchair mount, switch, switch mount.
School starts a couple weeks before it all arrives, but we have a loaner device until her's comes, thanks to her therapists at Clinical Associates of the Fingerlakes!
These are some of the icons on the device that she uses independently.  She is still talking on the phone with my mom about once a week.  She also tells her caregivers what she wants to do during the day.  Mary has a page that helps her tell people about herself and how she uses a DynaVox and a wheelchair.

Mary uses this page to tell people about herself.

This is the page she uses during various therapies.  Each icon links to open another page with choices, activites, concepts or whatever the therapist needed Mary to be able to access.

Mary uses this page to tell people how she is feeling.

Mary can call me to her and tell me what she needs at that moment.

Mary uses this page usually to tell her nurses what she wants to do during the day when she has 'down time.'

Trip to NYC

Yes, I travel with my daughter.  By myself.  Why wouldn't I?  She is a little girl who likes to go places. And so do I!
We recently went to NYC for the day.  Yes.  FOR THE DAY.
We took an airplane (JetBlue is the best!) in the morning and came back at night.

on the airplane - very excited.  She go the window seat, of course!

It was a long day, but not a bad day.  There was a medical reason for the trip (unfortunately) but we managed to have a little fun, too.  It was Mary's first time in Manhattan.

She liked the subway, but wished she didn't have to sit in her stroller the whole time.

From JFK, we took the AirTrain to Jamaica Station where we took the E subway train into the city.  We got off at Union Square and found a park to play in!

Mary liked this swing in Union Square Park!
14th and 4th

We had our appointment (very loooong) and then made our way to the subway again.  We went to Times Square so Mary could see DORA up in lights!

Right on top of Toys R Us was the celebration of Dora's birthday and Mary got excited to go in and pick out her toy.
She chose a Dora guitar and has been playing music ever since!

Mary slept most of the way home - through the subway ride back to Jamaica Station, the AirTrain to JFK and through the plane ride.

For tips on traveling with a person with a disability go here.

Mary's Favorite Things

Horses - any kind, anywhere! She loves pictures of them, sounds of them, talking about them. She loves the carousel, her stuffed horse, REAL ones!

Baths! Mary loves bathtime so much that it is one time that she gets so excited that she sometimes vocalizes!

Mary loves to swing and to be outside, in general. She usually tells her nurses at least once at day that she wants to go out.

 

Mary loves her sleep!

Mary loves books and has dozens and dozens. She is really into the Junie B. Jones series right now.
Another thing - Mary loves Dora the Explorer. It is her favorite TV show!