So far in 2012

I thought I should give an update on all that is going on with Will developmentally and medically.  First here is picture of Will and his new friend Alex:)

He is doing well overall but we have had some small bumps lately.  He had an eye and ear infection last month and has been fighting a cold via a snotty nose since Christmas.  He is STILL working on the same 6 teeth and has days where I can tell they really hurt.  In the past several months we visited the endocrinolgist, ENT and pediatrician.  The endocrinologist seems worried about his lack of significant weight and height gain and so am I.  His pediatrician has seen him over a longer period of time and is not concerned so I have put that one on the back burner, at least temporarily.  I know he will be small, its not that it bothers me that he is still in some 12-18 month clothes, it is that he is in the SAME 12-18 month clothes he was this time last year.  As with everything else I suppose we have to be patient.  My new favorite song is 'Fast and Slow' by Laurie Berkner Band.  It has become our theme song!  http://www.youtube.com/watch?v=oZgHeJ6yO1c
The ENT had to really clean out William's ears which is traumatic for both him and me since I have to hold him down while he screams bloody murder.  The doctor said that the tubes look good for now,  but might need to be changed in a couple months since apparently his ears are the thing that is growing!
Two year check went well as well.  We are still trying to find a solution to his eczema on his cheekies but otherwise we are relatively healthy.  I bombarded Doc Parsons with a bunch of crazy questions and Will got a shot and we were on our way.  Will tried peanut butter for the first time and loved it so that was the big 2 year old right of passage for him.  You can not live in our house and not like PB!

School and therapies are going well too.  We dropped physical therapy for awhile since Will is walking and can no longer be kept in one place to focus on a task!  We will need help in the PT world again soon but it is nice to have a break.  He is walking really well and keeping his balance too.  Next up is kicking, pivoting on one foot, stepping over things, stairs by foot and jumping.  In our time off we are focusing on speech since we need lots of work.  Will is going weekly now and has been signing more and more.  He tries so hard to imitate the sound but most everything comes out as a 'b' or a 'd'.  We just ordered a DVD that we have heard good things about and we really hope will help with sounds and object recognition.  Will's speech just isn't progrssing beyond 'b' and 'd' sounds and he has no real words.  It is a very simple DVD and book combo that is all based on repitition.  Shows the object and says the word and we need to watch it most everyday.  Since Will has a hard time sitting still I am not sure how it will go, so I just ordered the first one.  I really hope he likes it!  Others in our group have had great results!
He continues to do well at school.  Still wimpers a bit when I put him in Aunt Mere's car but once he is there he has fun!  He has been participating more and more and doing new things in the classroom and gym.  Here he is rolling out playdough!  So focused!
  

It is funny going to our support meetings now and hearing the new parents concerns and remembering being there such a short time ago.  Yet sometimes it feels like a lifetime ago that I was worried about those things.  My new mantra is 'just do what is next'.  So thats what I am doing with Will's challenges because otherwise I get overwhelmed and try to focus on too much.  Again the theme song fits here...we don't want to go fast, we'll go slow:)

Dance Party at the Browns House

Will is dancing with his cousins to Party In The USA.  Hate that song but love to see him dance.  The boy loves music and loves to dance!

December at the Bartosch House

 We were very busy for the month of December.  Here are some pictures from Christmas and some others.  I have said it before but I honestly have no idea what I did with my time before Will came along because I really thought I was busy back then.  Life is just a whirlwind!  We had a great holiday season and had a wonderful time seeing family and friends!

Will getting on his new bike!

I get 50 miles to the gallon on this hawk!

OSU basketball game with mommy and daddy!

Watching intently as the king of Indiana basketball walks on the court...

Bob Knight!

Enjoying WildLights at the Zoo!

Will's New Year's Resolution

Since Will's New Year's resolution was to get in shape, he is taking a gym class:)  I think I wrote about this organization months ago.  They host gym and dance classes for special need kiddos.  The gym time is donated and all the instuctors are volunteers.  Most instuctors are either gymnasts or physical therapy students and they pair a volunteer with each kiddo while they do different activities at the gym.  Will did really well!  He walked on the balance beam (with help from his volunteer), rolled down the mat and jumped on the trampoline.  You could stay on the gym floor with your kiddo if needed but Will was such a big boy and did it all by himself.  I was really proud of him!  He had a lot of fun too.  He is workin out here with his buddy Evan.
http://kidneticenergy.org/index.htm

 Will has been very busy since the last post...more posts to come soon!

Will the Elephant

Sorry I have been slacking on posts...it is crazy around here.  If Will's appointments, therapies and school aren't enough...its Christmas time and I just started my winter job.  I know everyone has stuff in their life so I am not looking for sympathy...just an excuse:)

Anyway, here is Will signing and imitating an elephant!  Both huge accomplishments for him.  Another accomplishment being 'flared' in this post is his new ability to climb in the big chair.  He pulls out the footrest and uses it as a ladder and then just sits up there so proud, sometimes 'reading' a book that he had placed there earlier while planning the whole thing. 

Will's animal sounds are getting better and make Ron and I roar in laughter:)  More to come!

We Have a Walker:)

When I found out what it really meant to have Down syndrome and that all Will's milestones would be not only be hard for him, but very delayed it really bothered me.  Smiling, sitting, talking, crawling, walking, clapping, teething, pointing.  All the things you excitedly call grandma to tell her he did.  All these things that just happen one day to most typical kids.  They take a lot of work and patience for Will.  At somepoint I accepted Will and I's fate but in my head I have still set goals for him.  The range for a child with Down syndrome to start walking is 18-36 months and so I unofficially decided that Will's goal was age 2.  I feel very proud that he met this goal and that he was walking on his second birthday:) But I am even prouder of all the work and progress along the way.  It is amazing and agonizing watching him try so hard for so long.  It was even harder to watch much younger typical kiddos do it overnight.  Hopefully someday that pain will go away...for now though...we have a walker!

Will's Birth-Day of Fun!

Birthday Boy!

Will had a very fun day!  He got his kitchen this morning and is very curious and excited about it!  The dishes and food are yet to come:)

We went to the indoor play place and played with all kinds of fun stuff!
http://www.fireflyplaycafe.com/index.html

Notice he has the same toy in all the pictues!  He wouldn't put this foam star down!

Then we got cupcakes for our afternoon snack:)  http://www.bluefrostcupcake.com/

(Signing 'all done'...then he realized what this really meant and he was not happy!)



Then we went out to dinner with the Brown family and Uncle Ricky.  Will opened up his dishes and food when we got home.  I think they were a hit!

We had one tired little two-year-old by bedtime.  We all had a very fun day:)  More partying tomorrow with Gaga and Papa Brough!  Cheers:)

Happy 2nd Birthday Will!

It has been 2 years since this amazing baby boy came into our lives!  At times it is so hard to believe that it has actually been two years and that we made it this far and at times it is hard to remember what life was like without Will.  He has changed our lives and opened our eyes and already made us better people.  I love him more than I ever knew was possible and I can't wait to see what the next year holds for him!

Happy Birthday William Alan!

Green Toys

I'm so excited about Will's birthday gift!  He is getting a play kitchen and toy dishes.  It's a very 'manly' kitchen and dish set:)  The dishes are made by a company that makes toys out of recycled milk jugs...
http://www.greentoys.com/cook.html
Pictures to come!

What Will's Up To

Sorry I had to take a little break after all that daily blogging!  We have been enjoying the last of the nice weather and getting ready for Will's big birthday!  Will has been doing great with walking and is choosing walking over crawling now!  He is getting very steady and walks most everywhere at home.  He even went up and down a couple steps at school using a teacher's hand!  He also thinks he can do this at home even though our steps are a lot different:)  He is doing very well at school and all of his therapies.

At the neighborhood park.

Picking out toys from the catalog for Santa's list with Ava and Jonas:)  He pointed at everything!

Opening an early birthday/Christmas gift from his Aunt Cindy.  He loves his new racetrack!

Hanging with Grandpa Ron!

Working hard at using my utensils.  I am getting so good I have been eating cheerios in milk!

...but sometimes this is still easier!

Shifting Perspectives

We went to the 'Shifting Perspectives' exhibit at the Dublin Art Museum last night and I am so glad we did!  It was a great display of beautiful photographs of individuals of all ages, races and walks of life doing ordinary, everyday things.  They all also happened to have Down syndrome.  If you live in Columbus you should go visit it this week since it is only here until Friday.

http://www.dublinarts.org/

We also met a really nice new family there with an adorable little guy.  It is always nice to meet new people that have a different story but are walking in our shoes:)

Will needed some convincing that this whole dress up thing is a good idea.  So I gave him a KitKat and he was onboard!

Happy Halloween

School Update

Will is doing really well at school.  He has totally adjusted to being there and is really starting to participate in the projects and play with the other kids.  The biggest help is that Aunt Meredith has been dropping him off on both days and that makes the seperation anxiety a lot less! 

He made applesauce last week, painted a perfect pumpkin picture with finger paints and had a dress-up halloween party last week where he trick-or-treated around the building.  He has been enjoying the sensory table that is filled with corn and gourds, and has been participating in story and song time as well.  He finally gave in and has been having some snack at the table with the other kiddos and has been walking back and forth in the classroom without a walker to get around.

These pictures are from last Wednesday from the observation window...so pardon the glare!  It was picture day so Mr. Will was all spiffed up:)  In the first picture you can see him playing in the sensory table, the second he is having a snack and in the third his teacher, Ms. Darla, is reading to him.

I am happy and relieved that he has decided that he kinda likes school.  His teacher told me that last week he was feeling so comfortable that he was even comforting a little girl that is still having a hard time!  All the teachers, therapists and volunteers there are great with him and all had good things to say at his 'conference'.  It is a great place for him to be!

More Alike Than Different

Although it is sometimes hard for me to think about Will in adulthood, these young adults are quite inspiring.  Amazing self advocates with fulfilling lives!

I also love the saying at the beginning of the video by Maya Angelou...'Human beings are more alike than unalike, and what is true anywhere is true everywhere...'

The Right Words

The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The “s” in syndrome is not capitalized (syndrome).
An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.
Encourage people to use people-first language. “The person with Down syndrome”, not “the Down syndrome person.” A person with Down syndrome is not “a Downs”.
Words can create barriers. Recognize that a child is “a child with Down syndrome,” or that an adult is “an adult with Down syndrome.” Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.
It is important to use the correct terminology. A person “has” Down syndrome, rather than “suffers from,” “is a victim of,” “is diseased with” or “afflicted by.”
Each person has his/her own unique strengths, capabilities and talents. Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that “all people with Down syndrome are the same.”
Most of all never use the R-word.   When “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity.  The R-word, “retard,” is slang for the term mental retardation. Mental retardation was what doctors, psychologists, and other professionals used to describe people with significant intellectual impairment. Today the r-word has become a common word used by society as an insult for someone or something stupid. For example, you might hear someone say, “That is so retarded” or “Don’t be such a retard.” When used in this way, the r-word can apply to anyone or anything, and is not specific to someone with a disability. But, even when the r-word is not said to harm someone with a disability, it is hurtful.
http://www.r-word.org/

Messy Boy!