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, August 31, 2012

Will's Sophmore Year

Will started his second year at the Childhood League Center.  We are excited to be back for a second year with such a great organization and Will seems to be comfortable in his new room already!  He has all new teachers and therapists but several of the same kiddos from last year's class.  He had a great first day!




Wednesday, August 29, 2012

New York

Will went to New York this past weekend.  Ron had a marathon at Rockland State Park and we made a quick family vacation out of it before school starts!  He did well considering all the walking and waiting we did.  It was a great trip but we were exhausted after 4 days of seeing the city!

Will is playing with the trains at FAO Schwartz on 5th Avenue
 
 
Will and mom in Central Park

 

 
Swinging in Central Park

 
With dad after the marathon

 
Empire State Building...we were there the day the shootings happened but luckily later in the day!
 
 
Survivor Tree at the 9.11 Memorial

 
9.11 Memorial pool at site of the North Tower.  World Trade Center 1 is being built in the background.

 
WTC 1 is complete up to the 104th floor.  It will be the tallest in the US.

 
On Statue Island looking at Lower Manhatten.  Will was mostly entertained with the pigeons.

 
Lady Liberty

 
Waiting in line...

 
Outside the train station in Tarrytown.  Will liked the subway!

 
We also met a family from San Diego with a 13 year old girl with Down syndrome.  I saw them at the Statue of Liberty but wasn't positive that she had Ds because I heard her talking to her mom and her speech was excellent!  When we were waiting at Ellis Island her mom approached us and we talked.  I talked to the young girl who is tri-lingual in english, spanish and french!  We shared some stories and her mom gave me some encouragment.  It was great to connect with another T21 family from so far away!
 
 
 

Friday, August 17, 2012

Zoo

We had a fun weekend with Gaga, Papa and uncle Ricky in town.  We went to the zoo and Will got to pet a tortoise.  He really wanted to climb on his back!  We are trying to get the last little bit of summer in before school starts!  We are still working on hitting our goal for the Buddy Walk and still trying to find a way to fund speech therapy. 
So if you still want to sign up to walk with us this year we would love to have you! Or if you can't make it this year we would really appreciate donations of any amount.  They all help us reach our goal and support programs through our local Down Syndrome Association that benefit us.  Thank you to ALL that have signed up to walk or donated to our cause.  Your support of our little Buddy means so much to us.  We wouldn't be doing so well without all our family and friends cheering for us:)
Go Team Will's Way!




Wednesday, August 15, 2012

Love

Will this kid ever know how much I love him...




Wednesday, August 8, 2012

Zurbert!

So let's keep things in perspective...this kid dosn't know how to say his own name...but he can give one heck of a zurbert!  Kids will be kids!

video

Monday, August 6, 2012

Bath Friends

Since I posted last Will has been working hard on his colors, body parts, shapes, puzzles, signs, word recognition, crayon and utensil use and riding his tryke.  His friend let us borrow some new Signing Times videos and he has been loving those.  He has already picked up a few new signs!  He has been going to OT every other week and had been going to ST weekly, until we found out we 'exceded our maximum'.  I knew we had limited visits, but I figured when we got to the limit I would figure something else out and I thought it would be best to go at speech head on.  Well here we are and I am scrambling to find a way to keep him in speech therapy.  The insurance company won't give us more visits and paying out of pocket is not an option.  If you knew what a 30 minute session of speech therapy cost out of pocket you would choke!  So I am applying for grants, begging the county to help us and asking everyone I know if they know any other options available.  Since it is summer break from school, he gets no therapies from the county until school gets going again and even then he needs more than just what he gets at school.  His speech is making slow progress but he is definately, significantly delayed!  So I have been spending hours on the phone talking to people and asking questions, as well as filling out applications and gathering all the necessary paperwork.  I feel a little bit abondoned by all parties!
School will be starting soon however and I think it will be good to get him back into his routine.  He starts back the last week in August at the Childhood League Center and will be in the preschool classroom this year.  He will go 4 days a week for 3 hours and will be in a larger class with 3-5 year olds.  There will be 6 typical kiddos and 6 special needs kiddos.  I am a bit anxious about all of this but I know it is what is best for him.  He thrives on peer pressure and picks up so much from his typical peers in the classroom.  I just fear that his speech and language are so far behind that he won't be able to interact with his peers and participate in activities, and will be left in the dust.
I have also been busy starting work on his IEP or Individualized Education Plan.  Yet another world I knew nothing about before I met Mr. Will!  From birth thru age 2 Will recieves services from the county where we live.  They provided us with services at home before Will went to school, and then they oversee his services at school and pay his tuition.  Everything changes at age 3.  He will then be given a Service Coordinator by the county, but his services will be provided by our school district.  Since he is going to continue at his private preschool, he will get the services there, but our school district will oversee them and be a part of building his goals in his IEP.  The IEP is essentially a document that follows Will whereever he goes and states his goals and his treatment plan of services.  It is complicated and overwhelming but I hear it is also my 'friend'.  It holds Will's teachers and therapists accountable for making sure he meets his goals.  In a sense it is his advocate.  The next step is the evaluation by the school district which we will have in the next month or so.  The testing is necessary to get a baseline and see what services he will recieve, but it is extremely unfair to have a complete stranger ask him to perform a bunch of tasks out of context in a very limited amount of time.  It is frustrating and heartbreaking but I know it is neccessary.

So I guess I have been so busy, I haven't even taken any pictures this month!
  Here are some old ones.






To end on a positive note, Will's eating and food-related tantrums have been much better of late.  Upon the advice of his pediatrician, we have been ignoring the tantrums when possible, and not forcing him to eat when he throws a fit over what we are having.  I do not make him something else instead, so as a result he has gone to bed without dinner several nights.  This was hard for me since I was raised in a house where you come to dinner when you are called, eat everything on your plate and don't get up until you are done.  And there were NO exceptions!  This laid back approach makes me feel like Will is in charge, but it has made for much more enjoyable evenings and dinners!