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.



Sunday, November 18, 2012

Will is 3 years old and I have no idea where the time went!  It is cliche, but it feels like yesterday that we met this little guy that would turn our world up side down in all kinds of ways.  I can't believe how far we have come.  I mean both him and me.  What a crazy, fun, scary, frustrating and fulfilling whirlwind of 3 years it has been!

 
 

Will had a fun birthday weekend filled with family, goodies and lots of presents!  He really liked the cupcakes and ice cream this year but didn't want to pick it up:)






We went to the nature center today and took a nice hike in the sunshine:)  Then home for more cupcakes since I don't want to eat them all and he needs the calories!






 
A lot has happened since I posted last that I can hardly keep it all straight!  So where are we?!  Really where are we, I sometimes forget I have been so busy with all of this 3 year old transition stuff!  Will is now the responsibility of the Upper Arlington School disctrict as they will oversee his services until he graduates High School.  We will no longer work with the state under Help Me Grow but have a service coordinator from Franklin County that helps us along the way.  Will is the proud new owner of an official IEP (individualized education plan) which is his legal document that spells out all of his goals for everyone involved in his services.  It was a lengthy process.  Will has had several evaluations to determine which services he is eligible for and where he is at in all the major areas of development, which taught me even more about this little guy.  He will stay at the Childhood League Center this year for preschool, as is our choice, and we will look again at UA's special needs preschool this spring to see if it has improved under the new direction.  Will has been working hard at school with all his therapists and teachers and although sometimes they make him mad in the process, they are all getting some progress from him.  He has been working well with his speech therapist at school and enjoys her games on the iPad.  The occupational therapist has been getting him to do some open cup drinking and getting him to sit on the potty.  His physical threrapist is working on jumping, balance and climbing.  The teachers adapted the room for Will so that the toy cars are all up front now, so that Will does not retreat to the back away from the group to play.  They are forcfully inviting Will to participate in activities that he would be happy to observe.  His second private speech therapist this year is changing positions so we are AGAIN searching for a new therapist in leu of being put on a waiting list for another Nationwide Children's therapist.  He had been working really well with her.  On a positive note, he is working very well with his new private occupational therapist and doing lots of good things with hand skills like coloring, beading and throwing.  He is still challenging me everyday with his picky eating and stubborness but that is truly karma!
I love every ounce of this kid though.  He is worth all of it!!!
 
 

Saturday, October 27, 2012

Look what else Lillian taught me to do...



Will re-started private speech therapy last week.  He was able to squeeze in with his old therapist which makes the intro period much easier!  She is happy with how much he is approximating sounds while signing...'ba' for ball, 'mo' for more, 't' for train.  I am happy too that he is making small progress in speech, it just never seems like it amounts to much.  He still doesn't use any words unless prompted, so communication is getting to be an even bigger challenge.  Tonight at Chick-Fila, we were playing in the play space when a little girl asked me how old he was and does he talk?  I said no, not yet, he just jibber jabbers.  She goes, oh, well my brother is two and he talks.  Cute kid.  Sigh.  But on a positive note, Will has conquered the play gym there!  Until recently he needed cousin Ava to help him up the big steps to get to the slide, and would usually have to be saved when he got scared up on top.  Tonight he climbed and played all by himself, except for our little friend and her brother, and was so happy and proud!  He wore himself out going up and down!
He wasn't into carving the pumpkin and touching the goop this year:(  He did like coloring on the pumpkin though!





Ron is off to Maryland to run another marathon so Will and I went to the zoo.  This monkey did not like me taking his picture!

 
 



Monday, October 15, 2012

Two Little Monkeys

It is funny to see how Lillian is starting to become a peer model for Will too!  The crazy girl has been showing Will how to jump.  They are getting a workout of jumping and pullups!

video

Sunday, October 14, 2012

Fun at the Farm!

Will had fun this weekend at the farm with his buddies!  He enjoyed petting the goats and baby cow and liked the hayride too!






 


Will also went to the Cincinnati Down Syndrome Clinic this week.  He was evaluated and observed by several doctors and therapists including a MD that specializes in Ds, a physical/occupational therapist, a speech therapist, a nutritionist and a geneticist.  The clinicians all had positive things to say about his progress since last year and had lots of good suggestions.  He was a little stubborn with the evaluation process and refused to do several things that I KNOW he can do and say.  Which is really hard to watch.  But that is just part of the evaluation process and part of being a little kid.  The clinicians know that and I know that, but it is still hard.
Will is doing well in school but some days has a hard time.  He doesn't always feel comfortable joining in to the free play time and often perfers to sit back and watch.  Which is also hard for me to see.  During the orgainized activities Will does well though and overall is having a good year so far.  He has really connected with his speech therapist and physical therapist and likes to play games with them.  He has Halloween day and picture day coming up this month!
This week we officially start the IEP process with another set of evaluations.  I am sure they willl be challenging as well but are necessary to get his services.  He is also starting up with speech therapy this week as our funding through the county came through.  Thank goodness!!!  We have lots of fun new activities that Will has been working on at home too.  This little guy never gets bored!
 
 
 

Tuesday, October 9, 2012

Buddy Walk 2012

This year's Buddy Walk was another huge success!  We had a beautiful day surrounded by people we love.  We surpassed our goal and raised $2827 thanks to our generous supporters!  We can not thank you enough for giving to Will's team and for supporting our family and our Down syndrome community.  We appreciate your love, awareness and acceptance of our amazing little Buddy!
 
 
 
 
 


 
 
This is a picture of Will's fellow Buddies!  They are growing up together and we are so happy to be taking this journey with them!
 

 

Wednesday, October 3, 2012

Down Syndrome Awareness Month and Perfect Video



As we start Down Syndrome Awareness Month in October, take the time to watch this video.  It is worth it.  Great story about real emotions.  And coming out a better person with a mission on the other side of that grief.  It tells the same story we have all heard before but it is great to hear it from a man's perspective.
I have pictures of the Buddy Walk and an update to share soon too!
Happy DS Month!






Monday, September 17, 2012

No!

The answer is no.  I am just not sure what the question is!?!
Will has rediscovered the word no.  He really likes it.  He taught Lillian.  Haha!


video

Sunday, September 16, 2012

Perspective



This post is from one of the many blogs that I have read.  Much like keeping a blog, reading blogs is theraputic to me.  This post is so remarkable that I had to repost it.  This woman had a prenatal diagnosis of Down syndrome and she is responding to a forum of other mothers with the same prenatal diagnosis that are looking for answers.  And once again I am reminded that everything is a matter of perspective.

"I have lurked here for years, and although my story may not be welcomed with open arms, I feel compelled to share it none-the-less. Like many of you, I received a pre-natal diagnosis that our precious baby had Down syndrome and a heart defect. It was completely unexpected and devastating, obviously. Like many of you, my first concern was for my daughter. What would having a sibling with special needs mean for her future? I didn’t want to burden her with a brother who would never be anything but a drain on our family. We didn’t have the resources of money, time, family support, etc. to be good parents to my daughter and a child with Down syndrome. I didn’t want to bring a child into the world only to suffer. These feelings were substantiated by the medical professionals involved in my care. They universally agreed that terminating was the right decision. So we made the choice, and I had the procedure. My grief was overwhelming.

About one year after the termination, I was again pregnant. I thought that perhaps we could finally move past the pain of losing our baby. The pregnancy was smooth, an amnio proved that the baby was healthy and that there were no chromosomal abnormalities. Everything seemed great. But at 22 weeks I went into labor, and the drs. were only able to stop it for a few weeks. My precious son was born at 25 weeks due to incompetent cervix, and both my OB and the perinatologist agreed that it was a direct result of the termination procedure. There was no other explanation. After months in the NICU, too many complications to recount, various surgeries and painful procedures, my son finally came home. And I was reminded everyday of the fact that my baby’s health issues and delays, his numerous special needs, were a direct result of trying to prevent having a baby with special needs. The irony continues to astound me.

But what I have learned in the 5 years since he was born amazes me more. I have learned that I do have the strength to raise this child. That yes, the drs. appts. and therapies which at the beginning seemed all encompassing, fade into the past as he grows older. I have seen my daughter grow beautifully into a compassionate and loving person. The experience of having a brother with special needs has exposed her to something that I always said I would teach my children. That different isn’t bad…that what makes a person beautiful isn’t what you can see with your eyes. In the NICU, and since then at the children’s hospital, in specialists’ offices, at the early intervention center, in school…I have seen that children with Down syndrome, and other special needs are not burdens to their parents. These families have challenges, sure, but they also have joy. Their lives are more “normal” than not. I have seen the pride on parents faces (and felt it myself) when a goal that comes easily to others is finally mastered. I have heard stories and witnessed myself marriages and families strengthened and enriched. I have seen that kids with Down syndrome, one of whom is now my son’s best friend, are absolutely not suffering. My son’s friend runs and laughs and plays, tells jokes, and is reading. He loves freely and fully. He had the same heart defect as the baby I terminated…and after surgery he was out of the hospital in a week and has never had any other complications.

I am not sharing my thoughts to cause pain to any members of this board. But I have nowhere to go with the guilt and pain I feel for the decision I made. I do not just regret being put in the situation; I deeply, and painfully, regret the choice that I made. And I think that even though the majority of people who post here seem not to struggle with that feeling, I know that I can’t be alone. I wish that I would have actually talked to parents of children with Down syndrome. Because one thing I know for sure—as capable and helpful as my son’s drs. and therapists are, not one of them can really know what it is like to be his parent, and to see the love that he brings to our family. My son’s needs in fact are greater and more complicated than most of the children with Down syndrome that I have encountered, but his life still has value. I never would have imagined myself in this position…and I didn’t think that I, or my marriage, or my daughter, could come out stronger for it. But we have. And now after the time I have spent with these children and their families, I don’t at all consider them fanatics. But advocates for the kids who have brought so much love to their lives. And I can also say unequivocally that these children and adults with Down syndrome “have a life”. As far as what NICU nurses and neonatologists would advise, after practically living in the NICU for over 3 months, I have no doubt what they would, and do say…Down syndrome is nothing compared to what so many families experience. These children can and do have a great quality of life and contribute to their families and communities, and are not considered a burden even by their adult siblings after the parents are gone.

I am not posting this to cause pain to anyone on this board. But I also cannot just sit back and not express my views on this subject. I do not judge anyone here, including myself…I know that we all made the best possible choices with the information we had. But I have lived both sides of this issue. I have terminated for T21 and now am raising a child with special needs. I wish I had known then what I know now."


As many of you may also know I support an organization called IDSC for Life.  The organization is prolife from the standpoint that they feel all women have the right to recieve up to date, factual information regarding the diagnosis before making a decision, and that they should not be pressured by professionals that don't have a clue what it is like to love someone with Ds.  Their mission is very important to me.  They are amazing advocates for all individuals with Ds and do a great job of spreading the word that 'All Life is Precious'.  Visit their website at www.idscforlife.org .

Saturday, September 15, 2012

Life Is Never Boring At Our House

We have had several weekends of fun, but we are ready to get settled into our new fall schedule.  We like seeing new things and going new places and having Will hasn't really changed that.  We hope by exposing him to different situations and environments it will challenge him to be easy going and tolerant, since he can sometimes get upset when things aren't like he is used to.  He usually tolerates the challenge and has fun doing so!
 
Will went apple picking with his friends. 
 


 
This is a huge accomplishment for this kid.  Not only is he eating something he normally would not, but he is holding it himself while doing so!  Peer pressue is great!



 
Will watched the Buckeyes game with his friends Mason and Harper.  We are sad we don't get to see our Colorado friends more often...so is Harper:(
 
 
Will played on the giant turtle and the hill slide at the OSU arboretum in Wooster on Labor Day.  He had lots of fun with daddy and aunt Amelia. 





 
Then for the first time ever, Will stayed overnight with Gaga and Papa so that mommy and daddy could have a night away.  Will was sick and grumpy but he survived...and so did Gaga and Papa!
 
 
He even had fun at the park!



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!