On November 18 2009 at 4:02 am William Alan Bartosch was joyfully welcomed into our family. He weighed in at 7 lbs 9 oz and 20 in long. We were stunned to discover that he was born with Trisomy 21, or Down syndrome. We love him unconditionally from the top of his toe-head to the tips of his toes. We know that this diagnosis will not define him. He is a happy, healthy little boy that just happens to have an extra chromosome.



Follow us on this unexpected and exciting journey as we learn how to live life Will's Way.



Friday, December 9, 2011

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!

video

Tuesday, November 22, 2011

We Have a Walker:)

video

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!

Friday, November 18, 2011

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!





Wednesday, November 16, 2011

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!

Tuesday, November 15, 2011

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!

Wednesday, November 2, 2011

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.
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!

Monday, October 31, 2011

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!

Sunday, October 30, 2011

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...'

Saturday, October 29, 2011

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 clich├ęs 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/

Thursday, October 27, 2011

Messy Boy!



Gym Class

I think Will is going to take a tumbling class at this gym this winter.  The women that started it came to talk to our support group and it is a great program!
http://kidneticenergy.org/

Wednesday, October 26, 2011

The Grandmas and The Grandpas






Will had a great weekend visiting Grandma and Grandpa Crandall and Grandpa Bartosch.  He also got to see his Aunt Amelia a lot too!  We went to visit Grandpa Bartosch at the deli he works at and then spent the afternoon at the Cleveland Botanical Gardens with Aunt Amelia and Tom too!  Will carved pumpkins and played with the cats at Grandma and Grandpa Crandall's the rest of the weekend and made us all laugh:)

Tuesday, October 25, 2011

Stubborn is...as Stubborn Does

I found this article very funny because Will is so very stubborn and I have never once blamed it on Down syndrome.  Often it is "Will's Way' even when I would prefer it be mommy's way, but since Ron is the only person I know that is more stubborn than me, it is quite fitting that our offspring would be as stubborn as God makes them:)  I think this article is quite true about my stubborn baby boy and it helps me approach his stubborness with a little more patience.  She wisely says, 'The only way to help anyone become less resistant is to help them to feel safe enough to try something new or different'.



Stubborn is...as Stubborn Does
by Carol Johnson, Calgary, Alberta, Canada

It is interesting to me how many people talk about their child's stubborn behavior as if it was part and parcel with having Down syndrome. It isn't.
There are many people who are stubborn who do not have DS. In fact, in some situations, being stubborn is seen as a positive trait.
I have heard people say that the reason they came out as winners in a situation was because...“I was stubborn and no one was going to push me around .”
“They thought I would cave, but I was too stubborn to give up easily.”
So, what is this stubborn behavior that we see with students who have DS and how can we think about it?
I see stubborn behavior as a direct result of lacking the skills and/or language to negotiate a position.
Often, we will take a stance on something we care about and, right or wrong, stick to that stance until we understand or agree with another's view.
A student with DS will continue to do things in a specific way because it is safe, it is known and it has worked in the past. When we try to change their behavior, when we try to introduce new things, we threaten their "safe place."
Some of us are open to change and will accept change far better than others. This is the same for students with DS.
Some of us are able to argue our side of the issue, some of us can be persuasive and bring people to our view and not have to change — the other person changes.
Students with DS cannot do this as well. They lack the language, the cognitive flexibility needed in verbal discourse and the larger world view to win many verbal arguments. So...they look stubborn.
Think about it. If you were in a situation where you did not understand what was going on around you and people were trying to get you to do something you were unsure of, what would you do?
You would resist, you would stay doing what you know, you would be seen as stubborn. What if you did not have the language skills to share your views, what if the other party did not understand you or did not care about what you had to say? Then, you were punished or censured because you were seen as stubborn. How would this affect your level of cooperation the next time?
How would you respond to these people who "made you do something you did not understand nor even agree with?" You may become even more stubborn or resistive. And, they, in turn would see this as "noncompliance" or as a "problem." They would respond in a way that assumes that your stubbornness is
something that exists on its own; apart from you having a different view of the same situation or apart from your being unable to communicate, your point of view successfully.

How can we change the pattern?
By letting go of the myth of stubbornness and seeing stubborn behavior as resistance. Resistance to something new, resistance to something that is not understood, resistance to having others be in control, resistance to someone they may not trust or understand. The only way to help anyone become less resistant is to help them to feel safe enough to try something new or different.
When children are young, they will not respond very well to changes and will withdraw. As they grow older, they will use strategies that have worked in the past… withdrawing , not looking , pouting , sitting , throwing themselves down (stubborn-looking behaviors).
The more stubborn a student looks, the more useful this behavior has been in the past; using this repertoire of strategies has allowed the student to remain in a safe place.
Adults are part of the problem.
We have taught children what they need to do so we will stop pushing or so we will leave them as they want to be. Then, sometimes, we become angry. As we become angry, children resist further as they do not understand what is happening and are often upset with the situation as well. How many of us respond to anger if we are nervous about a situation?
How many of us would become less "stubborn" if someone demands that we do something that we are not sure about?

Some of the best people are just stubborn enough to hang in there when many others have given up on a child. So, join them.
Be stubborn about a child's ability to learn and help him or her to feel
safe enough to venture into new territory with you alongside.
Stubborn is...as Stubborn Does.

Sunday, October 23, 2011

Pumpkin Time!

Will had a lot of fun this weekend carving the pumpkin.  He loved the goop:)