Veteran's Day

Today is Veteran's Day and I'd like to say how truly thankful I am to all the men and women who served or are currently serving our country.  The sacrifices you make are so truly humbling.  Thank you for your service.  God bless you and God bless America!

I'm also reminded today of the effect Veterans have had on the disability rights movement.  I'm not sure if many people are aware of this, but it was the WWII vets that really started the disability rights movement.  Some came home disabled and wanted the same rights they had before they left.  Others came home and had children, some of those children were disabled.  Their generation said they fought for their country and they were not about to put their disabled or mentally challenged children in institutions.  It was their strong spirit, their willingness to fight for their children's rights, that started us on the path we are on today where people - old and young - with disabilities now have protections within the law.  And for this reason veterans have a very special place in my heart.

Thank you for all you have done and continue to do!

Faith

I've been thinking of my theme for this year - Faith.  Faith that all things are possible.  Faith that I am exactly where I am supposed to be on my life journey.  With a little over 7 weeks (yikes!) left in the year and with Thanksgiving coming up, my mind is spending some time reflecting on this year and I find myself often coming back to my theme of Faith.

I have to confess that there were parts of this year when I didn't always kept the faith.  I wasn't sure that Emma would make as much progress as she has.  I wasn't sure she would ever give a consistent Yes/No response.  I wasn't sure she would participate in her new school program, that she wold make gains in her communication skills, or that she would figure out a way to walk in her KidWalk again after her growth spurt.  I tried to keep the faith that she would make all these goals, I really tried, but sometimes my mind would just not stay on board.  And I would worry.  Of course I wouldn't let anyone know that I had anything but 100% confidence in Emma, but silently I sometimes felt a little bit of doubt and then I'd feel some guilt at my doubt.  And then I'd notice a few new gray hairs and knew any worrying just wasn't a good idea ;-) and that I had to come up with a plan of action, because nothing comforts me better than a well composed plan of action!

It sometimes took the additional gray hair to remind myself that the theme I chose for this year is Faith and my plan of action was usually to practice it more, flex my Faith muscle so to speak.  Over this year there were times when my faith was at a high and others when it was at a low.  I think this is normal for me and actually think it's probably normal for most people.

I know that I've come a long way on my Faith journey this year.  I rarely need to "borrow" faith from others these days.  I spend most of my time believing that all things are possible and that I am spiritually and mindfully exactly where I am supposed to be on any given day.  At this time of Thanksgiving, I have so very much for which I'm thankful.  And I have Faith in what the future holds.

Sesame Place

There is a wonderful amusement park in our area called Sesame Place.  As the name implies, the theme of the park is the tv show Sesame Street.  Characters such as Elmo, Zoe, Abby Cadabby, Bert, Ernie, the Count, put on shows, make character appearances and star in the closing parade.

But this is not an ordinary park;  this is a park with heart.  Every year they team up with Variety - The Children's Charity and close the park to the general public in the spring and the fall and invite families that have children with disabilities to come and have fun.  And they do this for free.  The only cost is for parking and all that money is donated to the local Variety chapter so they can continue their work dedicated to promoting and protecting the health and well-being of children around the world.  Amazing generosity!

We have attended several Sesame Place days with the girls with the most recent even this weekend.  It was a beautiful sunny, cool Fall day and the park was the most crowded I've ever seen.  Chris' Aunt Mary Lou works there and she told us they sent out 15,000 tickets and I think the turnout must have been close to 100%.  Emma's favorite tv show is Sesame Street and I think this year she appreciated meeting the characters more than years past.  She kept trying to jump out of her chair to go up and greet them - it was the cutest thing!  Julia brought her baby doll this year so she could introduce her to Sesame Place and both girls were treated to some special gifts by Aunt Mary Lou (thanks so much!!!)!

Julia has become unusually attached to her Snufalufagus doll and is using him as a stand-in for Puppy on our outings.  Puppy is her most favorite stuffed animal and we don't let her take him places for fear of leaving him behind (a good rule implemented only after numerous late night searches that included car rides to locate Puppy).  Emma loves her Zoe doll and wants to hold her in the car.  She looks around for her when she is put in her car seat and when we ask her does she want Zoe Yes/No she always answers yes and makes happy sounds and movements when Zoe appears!  She picked an Abby Cadabby doll as her vacation memento last year and it seems like Zoe is becoming more of a favorite than Abby.

Sesame Place has a few rides but a lot of climbing and gross motor areas.  The park is very accessible and wheelchair friendly, but if you can't walk it's hard to participate in many of the rides.  The nice thing is that there are a lot of shows/mini plays that happen throughout the park and a large parade at closing time.  We arrived around noon this year and stayed through the parade.  We didn't see any shows because we did do a couple of rides, the bounce mat area and met some characters and since the park was so crowded these each took a bit of time.  Aunt Mary Lou suggested an area for us to camp out close to parade time and the seats were perfect!  The girls really enjoyed watching the parade and having the characters do their musical dances right in front of them.

Thanks so much to Sesame Place, Variety, and all the volunteers that made this weekend possible!  We truly are so lucky to have the opportunity to enjoy a great day out with our family.

School News

Today Chris and I are feeling really good about the school decisions we made for both Julia and Emma.  As a parent it is hard to know if we are making the right choices and it's wonderful to have a day when you can sit back, take a deep breath, and know that for now we are exactly where we are meant to be.

The future is so bright, she has to wear shades!

Chris and I had our first parent teacher conferences for Julia, making it our first parent teacher conference ever (because there is no way that I'm counting the endless hours in IEP meetings for Emma as a parent teacher conference)!  I'm happy to say that they seem to love her almost as much as we do!   They see the same sweet, genuine, caring, brightness that we see in Julia and are thrilled to have her in their class.  Julia has been in kindergarten 37 days to date.  Her teachers showed us her journal with her writing from day 1 to now and it is striking how mature it is getting after only 37 days.  There is punctuation, capitalization, spaces between words now where it didn't exist on day one.  She is on track for many of her pre-literacy and math skills, participates readily in all the class activities, and has many friends.  They described how Julia plays with others, the activities she enjoys (dramatic play tops the list), and the unique qualities she brings to her class.  It was wonderful to hear more about her school life from people who have been brought into Julia's world only recently.  As I said to her teachers, Julia was born with a great heart and compassion and we can't take the credit for that but we are truly honored to get to raise her as our daughter.

Since it was parent teacher conferences, Julia had the day off from school and joined me to drop Emma off at school.  It was her first time seeing Emma's school and she was so happy about it!  Miss Anna (Emma's teacher), Miss Marie (Emma's aide), and many of Emma's therapists put out a warm welcome to Julia.  Emma was smiling from ear to ear, too, while Julia toured her classroom, saw the equipment she uses, met her teachers and therapists and friends, and walked the school halls.  Julia often wonders about Emma's time away from her and always has a lot of questions about Emma's school.  It was so nice to be able to show her what Emma's day is like so she could put faces and places to my descriptions of Emma's daily routine.

As is typical, Emma rode the school bus home and Julia liked seeing Emma's bus and meeting her bus driver and driver's aide.  My parents were here, too, since I was at Julia's school for the conference.  Emma was delighted to see everyone waiting for her arrival!  This child loves people and having her grandparents and sister greet her at the bus likely put the biggest smile on her face.


When I got home I looked in her communication book so I could ask her about her day and saw this note from her speech language therapist:

• "Emma did a great job using the DynaVox (AAC device) in the classroom to make song choices.  I have hand puppets for some of the songs that she likes to sing.  We sang 5 Green & Speckled Frogs on Tuesday with hand puppets (which she loved!).  She went right to that choice and used her hand switch to select it.  I looked in my bag and realized I forgot the frog hand puppets (oops!).  Then I told Emma "I don't have the frogs today, but I do have Twinkle, Twinkle and Old McDonald."  Before I could look up to help her make the choice, Emma used the DynaVox to say Twinkle, Twinkle!!! She is doing so well :-)"

Our big girl is going places (with her communication!).

Wow!  I have tears in my eyes writing this now.  This is only the 2nd time Emma has used the DynaVox ever and the first time in the classroom with all the kids in the room.  And Emma wanted to communicate!  She wanted to play the games.  She wanted to use the DynaVox to tell her SLP what song to sing.  And, the 5 Green & Speckled Frogs is the 6th choice out of 6.  Emma had to use the head switch 6 times to get to that choice and then use her hand to select it.  The DynaVox she uses is with switches, not eye gaze yet.  The fact that she has figured out how to use this system after only ever seeing it for 2 times give me so much hope for her expressive communication options.  Chris and I are 100% sure we made the right choice in moving - it's amazing how a different approach to communication can open our child's world.  


Tonight we will rest a bit easier knowing we are exactly where we are meant to be and that is not something we take for granted.

Halloween Adventures

What a fun halloween we had!  Julia dressed up as a bunny and Emma was Cinderella and then we headed out for some trick or treating fun.  This year there was snow on the ground - our first white halloween! - but much of it had melted and the weather was in the high 40s so it turned out to be a nice night for the children.

Our neighborhood is filled with children and all the kids on our block huddled up for a photo before heading out to trick or treat in our large group.  They were so excited running door to door for candy and mostly remembered their manners.  A handful of houses had haunted porches and the kids just loved it!  I thought Julia would be scared but she held her own in the group and had a ball.  Emma was thrilled to see all the children running around and not as interested in the candy gathering as last year.  I forgot to bring her iPad programmed with Trick or Treat (like we did last year) and I considered going back to get it but decided against it - with so much action, lights, and kids there was no way that Emma would even look at her iPad let alone use it to say Trick or Treat.

Our candy bags overflowed with all kids of goodies.  I think it must weigh 5 pounds.  Tonight we'll go through it and select some to keep and then donate the rest.

Happy Halloween!