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.
I can't believe it has been so long since I posted! I have been a busy mama and this fell on the back burner. Sorry to all who followed us for so long.
I know at least one person that will be happy we are back...he happens to be Will's godfather...but I am curious who else checks in on Will's blog? Let me know via a comment if you still stop by the blog.
Which brings me to my second point...I had to change the settings on the comments since I had a 'sicko' make a comment about a picture. So not only did I remove the pic, but I will now have to review your comment before it is posted. Since only Gaga and Papa Brough and Uncle Ricky make comments though, this shouldn't be too annoying for most:)
So back to why I am here...Will! Will is doing well. He is doing great in school and trying some new activities out of school. Still going to weekly therapy and busy being an ornery little 4 year old boy! Since June he has had a lot of fun stuff happen in his life...he was ring bearer in his Uncle Ricky's wedding, walked the whole way in his 5th Buddy Walk, celebrated his birthday, Christmas & New Years with family, has taken music class and swimming lessons and enjoyed playing in the snow this year. This winter has been challenging though, as we have been sick, but we are excited for spring to be here so we can get out and play! Will loves to be outside!
I will try to be better about posting, if I think there are enough people checking in on us...other than Uncle Ricky! :)
Will loves his speech therapist at school. He lights up when she comes in the room and really likes when she plays with him in the classroom. She had great success getting him to use his voice and say words in a one-on-one setting when he would be pulled out to work with her, but was having a hard time getting him to do so in the classroom. The last month of school William really progressed! She started working with him more in the classroom and he started using his little voice more:) I hope this continues next year and we don't lose our progress over the summer. Ms. Marty is awesome!
Gaga Judie says its 'Terrible Two's' and 'Trying Three's'...well William was definately 'trying' me this day. When we got home and out of the car, I had several things in my hands including a sleeping Lillian and he wanted to be carried. I told him to use his big boy feet and walk to the door, but instead he sat in the driveway for the better part of a half hour crying and whining. I am sure that both Grandma's are saying 'awww' right now, but eventually I have to out stubborn this kid! So I watched him, very closely, from inside and repeatedly told him to use his walking feet to walk to the door. Took a couple pictures too. After a half hour of whining, crying and getting sunburned by Will, Jonas just got up from playing, without saying a word, and took matters into his own hands...literally...and went and got Will. This boy is so stubborn!!!
We are excited that summer is here and school is out. Will has been making a lot of progress with speech and physical therapy related things and I hope we can keep the momentum going thru the summer! He is enrolled in a speech therapy social group once a week and will continue to do his private speech and occupational therapy. We are trying to find another session of soccer that works with our busy schedule, but for now, he is getting so much better at kicking and running with the kids in the back yard. He is also getting really good at hitting the ball off of his tee and this keeps him entertained for a long time since he then chases it, puts it back and hits it again. All of this is so good for core strength and balance. We hope to do lots of other fun things with cousins and friends too!
It is raining today so we painted cookies:) I sneeked in a little OT while they were having a treat!
Will went to an Indians game last weekend.
Will's last week of school with all his little classmates!
Will playing with friends and cousins at the park.
I love this time of year when there are reminders of Holland on every corner. Will has had a busy spring and continues to keep us on our toes! We haven't posted since 3.21 but we have done a lot of fun things and continue to see a lot of great progress with Will.
He is back on his thyroid medicine despite my belief that he would not need to, and seems to be doing ok on it. He was making so much progress with speech and his behavior was better and he just seemed to be more aware and focused, that I thought for sure his TSH would come back normal. It was very high at 9.5 so he is back on levothyroxin at a slightly lower dose per my request.
Will is slowly adding more words to his vocabulary and starting to string 2 and 3 words together with prompts from me. So if he wants more crackers and he comes to me and says cracker, I repeat back to him with signs, 'more cracker please' and he signs and says it back. We have a pretty good system going! He has also been very excited to label things he knows how to say for me and will come tap my leg, show me a car and say car. He is very proud that he can label certain things and of course, gets lots of praise.
He has been going on the potty here and there when we put him on it. We aren't really potty training at this point but just trying to gain some awareness. I think that moms that potty train kiddos with special needs must have nerves of steel and most certainly have a special spot in heaven!
Will has started soccer on Saturdays with daddy and has been running around the yard playing t-ball, frisbee, bubbles and in the sand a lot this spring. He has also become very fond of his wagon and insists we take it to the park instead of the stroller so he can pile in his dump truck, soccer ball and whatever other toys are chosen that day.
He started with another new speech therapist a few weeks ago and so far it has been good. He is still doing well with his current occupational therapist and has been doing well in school lately too. His teachers and therapists report he has been more vocal in the classroom with his peers and continues to want to play along with the others. Today his speech therapist told me that while playing with one of his friends, the friend took Will's toy and Will took it back and pointed at the friend and said 'No! Me play'. This is huge for Will to not only stand up for himself but verbalize it!
So here are some pictures of our adventures!
Will coloring Easter eggs
Will pouting...had to include this one for good measure:)
Will visiting Anheuser-Busch in St. Louis
Watching runners at the St. Louis marathon. Waiting patiently for daddy:)
Uncle Ricky came too! It was an adventure.
Loves to imitate daddy
We finally got him on the carosel at the zoo!
But there was no way he was getting on a horse:)
Will and 'Yi-Ye' (Lily)
Getting fitted for his tux for uncle Ricky's wedding in August
Will listening to story time. His two buddies are on either side of him...Lucas on his right and Mickey on his left.
Daisy one of the therapy dogs came to school last week.
I think they are having a stare-off!
Coloring with daddy. Note that awesome grasp!
The t-ball set was a recommendation by both of his physical therapists and now I know why they thought it would be so great! The process of hitting the ball, chasing the ball, putting it carefully back on the tee and hitting again is great for balance, strength, running and bending and hand-eye coordination. Not to mention it is really making him tired at night:)
So uncle Ricky you can stop making requests for Will updates. In my defense, our computer is not well:( I have some really funny videos of Will singing and dancing, but they will not upload. Thanks everyone for sticking with us and checking in on Will. We get so much support from our families but know that we have a really supportive group of friends out there too! Just your thoughts keep us going on hard, frustrating days. Keep us in your prayers and we will keep you in ours.
I'm feeling lucky to be a part of this world that I dreaded just 3 years ago. I am getting to the point where I can't imagine it another way. The Down syndrome community is like nothing I have ever experienced before. It is like having a special pass to a secret club. Last week an email spread around my local Ds community of a new mom of a baby girl with Ds that was looking to connect with other moms. It spread like wildfire. Other moms were emailing around to get her in touch with people in her neighborhood (me), or with similar complications, or with kiddoes the same age. It was amazing!We all can't wait to meet the newest member of our club:)
Will playing at the Science Center with our Ds Weekend Playgroup
The other really cool thing that happened to me today is that I was checking out at the grocery store when I noticed that the young woman at the end helping bag the groceries had Down syndrome. The cashier waved and gooed at Will and he waved and said 'hi' to both women. The woman with Ds immediately looked at me and said 'does he have Down syndrome?'. I said 'yes he does' and she said 'I thought so'. So we did introductions and she told me she wants to work with kids with Down syndrome. I said maybe she should volunteer at a preschool and then we all said goodbye. The cashier admitted that she didn't even realize Will had Ds, but this young woman picked up on it right away:) Wouldn't it be great for her to work at Will's school?! I need to look into this. But mostly I'm just thrilled to have had this wonderful interaction with this woman. I still struggle with thinking about Will in adulthood and how that might look, but this helped my view a little bit!
I was recently talking to a friend and mom of typical peers at Will's school about how important inclusion is for both my kid and hers. I was telling her how great it is for Will to be around typical kiddos so that they can model things for him in the classroom. The possiblities here are endless...from speech to jumping, painting, eating, to pretending and socializing. I could go on but everyone knows why playing with typical kids helps children with developmental delays progress. What I really wanted to tell her is what a huge service and gift she is giving her kids by putting them in an inclusion program at such an early age. Her son in particular is extremely patient and compassionate towards Will. At age 4 he shows more acceptance for people of all abilities than most adults do. Most important of all is the awareness and exposure to children that might act and learn differently. It will become comfortable for him to be around children that talk different, have different social skills and sometimes look different. Of course I see this from a different point of view than others may because of my personal situation, but if we want patient, compassionate and accepting adults, we need to teach our children these traits through practice. To me this seems to be way more important than our ABC's!
If you need another point of view as to why it is important, read this article. I put it up on Facebook but I don't think most people noticed it. I felt it was one of the most profound articles I had ever read. It is so honest. It also explains why many adults are uncomfortable with disability and why it is so hard for us to accept when our child has different abilities and challenges.
Grandma Sandy was on her way to come visit me when she got a call that my cousin was being born. So she went to meet him and she sent down a lot of fun stuff with Aunt Amelia!
She made me a sleeping bag and I really like it!
She got me rain boots so that I can 'jump up and down in muddy puddles'!
She made me the most beautiful blue and yellow blanket. Blue and yellow are the colors that designate Down Syndrome. You can't see it in the picture but the pattern on the blanket is an awareness ribbon! What a special gift:)