Dancing King

Will loves to dance!  Here he is dancing and jumping with his cousins at the lake.  Take note that he barely takes his eyes off his cousin Jonas...he wants to do everything Jonas and Ava do.  Which is a very good thing because it is very motivating.  He is trying desperately to jump like Jumpin Jonas!  Jumping is something that is hard for kiddos with low muscle tone to do, so it is Will's next big goal that we are working on.  Yet another amazing feat that most kids just do on their own, but it will take some work for Will.  He has the motions of jumping down, but now he just needs some air:)

The Preacher Returns

Will the preacher was back last weekend at the lake.  He is trying to tell us something very serious and important...we just don't know what it is!

 

Which leads me to say that the harder and harder I am listening, the more and more I am hearing what Will is saying.  He said 'apple' clear as day this week while watching his signing video that has the signs for fruit in it.  I am sure he has many more words that I am just not picking up on yet. 

The great, great news is that he went back to speech therapy this week expecting to start from square one with a new therapist, and in walks his old therapist.  She had her baby several months early and is already back from leave.  Her baby girl is doing well but in NICU for awhile.  We were so happy to see her!  She got Will to count 'one, two, three'!

Will also had his first occupational therapy appointment with a new therapist this week.  I can't really say how it went for sure.  Since the only time available was in the middle of the day when I have my nieces and nephew, I couldn't go back to the room with him.  The therapist said he did 'ok'.  She said he played with trucks, but since he already knows how to do that I am not sure if he accomplished much.  I hope to have him improve his utensil and coloring skills along with just general improved play skills.  He is just going to do the OT for the summer since he will get a lot of theraputic play when school starts up again.

Luckily Will makes us laugh, because he is deep in the midst of the terrible twos!  As I have said before, all the pictures I post of Will are cute and funny, but we have had several moments lately of screaming, crying and whining which I chose not to document on his blog.  I am sure it is mostly a stage and a sign of extreme frustration on his part, but it seems to be getting worse.  Which reminds me how much I hate it when I tell someone new that my son has Down syndrome, and they reply 'oh they are the nicest, sweetest people'.  That sterotype didn't bother me in the past, but it does now.  He is not any more like ALL people with Ds, than I am like ALL people with blue eyes.  He has the normal highs and lows that everyone experiences, and I am here to tell you, he is NOT always happy.  He is getting more picky with food, more angry when he doesn't get his way and more whiney when he wants something.  He is trying my patience for sure.  It is hard to not wonder if something else is going on with him since I can't ask if something hurts.  I hope this phase passes soon!

Will also had fun last weekend visiting a bison farm near the lake and playing in the lake and on the boat with his cousins.

Special Needs Moms

Sorry this came out small but if you click on it it will make it bigger.  It is worth the extra click!

Will's Adventures

Will had a busy and adventurous weekend.  He had his playgroup on Saturday morning with his Little Buddies (Little Buddies is the name of our Ds toddler group), then he went to the Yellow Springs Street Fair, camping and hiking at John Bryan State Park and on the way back home he played at Young's Dairy.  He had a lot of fun eating fair food and dancing to the bluegrass band, exploring the camp site and sleeping in the tent and really enjoyed himself at the dairy with the animals, play area and ice cream!

I feel that it is somewhat exceptional that Will tolerates all the Ron and I plan for him.  Both because he is 2 and because he has Ds and sensory issues, which can sometimes cause him to get overwhelmed when he is out of his comfort zone.  He seems to rise above these little 'challenges' we put in front of him and usually has fun doing it.  It was funny to watch him clap and dance along with the music at the fair.  He can be a stinker at times, but he really is a very sweet, funny and mild-mannered toddler!

He is on a break from all therapies right now...not by choice.  I have been juggling the schedule this past week because his speech therapist had her baby very early and since there was no one to take over her patients, we had to move to a different time.  Will also had his occupational therapy re-evaluation last week.  Thank you Grandma Sandy for taking Will while I was at work, because otherwise we would have had to wait until August!  So I have been trying to coordinate OT with ST and the rest of our life, to see where we can fit this all in.  Much to my dissappointment, I never found him a good summer program or camp to attend.  They were either too expensive, too far away or too old for him.

Physically he has been under the weather.  His right ear is infected from surgery, so he has been on drops for that.  He fell on his little face while chasing his cousins and sustained the injury you see in all these pictures.  Someone told me it makes him look tough:)  And he has had a little stomach bug too.  So we are looking forward to being healthy again soon and free to enjoy our summer!

Preacher

Will decided that the back porch at the lake cottage was his stage last weekend.  He used the toy mallet as his microphone and told us all we were going to heaven...well at least some of us!  We figured this is a combination of his Rockin Ronnie concert at school last week, his constant imitation of Ava who is ALWAYS performing and, at least I would like to think, I little bit from being at church.  This boy is so funny.  He makes us laugh!

DSA Race

We had a 5K last week for Down Syndrome Achieves.  DSA is a national organization that was started here in Columbus that funds research and legislative advocacy for individuals with Down syndrome. 
www.dsachieves.org

Loving the Lake!

Will had a great weekend at the lake!  He really had fun playing in the lake this year especially now that he can walk.  Papa even made a slide for the seawall that Will and his cousins enjoyed.  Here Will is having fun in the shade on the raft and in the baby pool.

Will and Lillian are 'sharing' the sandbox.  Not sure why they have to be in the sandbox to play with it, but they both insisted on it!  They are not necessarily enjoying each other's presence:)

Hanging out in the cottage and enjoying a snack!

Ear Tubes Times 3

Will's ear tube surgery went well today.  He got two new tubes.  He was grouchy and wobbly afterward but after he drank some juice and ate some veggie straws, he fell asleep watching Signing Times.  We hope these are his last tubes!



Hot Dog!

Will can say 'Dada' and 'Mama'.  He says 'no', 'more' and 'all done'.  You wouldn't know them if you heard them but Ron and I do.  Especially when he pairs it with the sign.  But Will's first, official, intelligible word is 'hot dog'.  I am thrilled but can not believe this is his first real word!  Since Ron and I are moderate vegetarians (meaning we don't eat a lot of meat) this is ironic and also a little sad.  I swore my kid was not going to eat hot dogs and chicken nuggets everyday, but since he really only eats those, veggie burgers and nutella sandwiches, I guess I shouldn't be surprised!

Thank You Will

I am a bit late in posting about Mother's Day but I did want to make note of what a nice and memorable day it was.  I got some nice gifts and spent a nice day with my mom and family and Ron's mom for a bit too.  I think it is nice to be honored on Mother's Day, but I think Will deserves some of the thanks as well. 
Will made me a mom.  He made me a different and yet better person.  And since I am currently reading Kelle Hampton's book 'Bloom', it is hard not to use some of her words here.  He has opened my eyes and expanded my world.   He made me an advocate and helped me to be more patient.  He has challenged me and stretched me to my limits at times, but ultimately made me stronger. 
Some people talk about losing their identity when they have kids, but I feel like I became more of myself.  He made me see things in a different way.  When Will was born, it became much clearer to me what is REALLY important in life.  And that everything is a matter of perspective. 
It is hard to believe that such a ornery little boy can do all that...but he did!

Cousins!

I love these kids!

A Day in the Life...

For the most part I would consider us a 'normal' family.  If there is such a thing.  Like the woman on the World Down Syndrome Day video said, 'Normal is a setting on a washing machine'.  We have typical days that one has with a toddler, with all the typical struggles.  We just have a few extra hurdles.  For instance, we spend a LOT of time at doctor's offices.  Mostly for check-ups...not because Will is sick.  Which also means we spend a LOT of time in the car on the way there for the record.  He regularly sees his pediatrician of course, but also a speech therapist, endocrinologist, ENT, audiologist, opthomologist, goes to both the Cincinatti and Columbus Ds Clinic for check-ups, is waiting to get into the pediatric dermatologist and is starting up occupational therapy again soon.  So since it is part of our life, I thought I would share some recent pictures of Will at the ENT.

Waiting patiently but not happy about being here.  When Will sees tables with paper and adults with white jackets he knows what is up.  Just getting him weighed is a struggle!



Poor cousin Lillian gets dragged along too.  Will and her are 'sharing' the book.

Lily won!  That girl can hold her own!

Still waiting...

What happened next I have no pictues of, but I can tell you it wasn't pretty.  The ENT had to scrape and suck out both ears, while a nurse and I held him down as he screamed bloody murder!  I was sweating and my heart was racing, not to mention breaking.  In the end, the doc couldn't even get his right ear tube free of gunk and so he is going to have to get a new set of tubes anyway:(  He screamed so hard he has broken blood vessels all over his sweet little face.  And afterward as I was comforting him, he looked up at me in between sobs and mumbled something very matter-of-fact and then went back to sobbing.  I am not sure what he said but I am almost certain there was a cuss word in there!

Will is one tough little guy though.  He endures more than most adults would.  Plus the frosty afterward always makes it better:) 

Ear tube surgery take 3 at the end of May.

Will's Way is Back!

We have been offline for a month but have been very busy otherwise!  We rehabbed the house, moved into the house, celebrated Easter, cleaned up the yard, went to the zoo and many other fun things while we were away.  Will has been a great helper in the house and yard and has enjoyed seeing grandmas and grandpas and anuts, uncles and cousins a lot while we moved.  It is so fun to see him explore all the new spaces and especially to watch him have fun in the yard.  He finally has somewhere to get his hands dirty!

It was a long and challenging road for us, but as with all things in our life we just had to be patient.  Which is hard to do.  God must have thought I was the most impatient person in the world!  He did make sure that we had the most supportive family in the world to help us get through all of this.  We are very lucky to have a strong support system that not only helps us get through challenging times with Will, but helped us get into our house.  They cleaned and painted and tiled and helped us move.  We would be no where without them.  They really are our foundation.


So enjoy some before and after pics of the house and some of Will at Easter, in the yard and at the zoo.  He is doing well overall and making small progress with speech each week.  He has school for about another month and we are looking for summer therapy programs for him.  We found some funding for more signing videos and for summer programs and hope to take advantage of that.  He is as ornery as ever but keeps us smiling!

We have lots of big plans for larger renovations, but this house was in pretty bad shape, so we had to do a lot just to move in.  The biggest changes are clean paint in all the rooms, refinished hardwood floors and new floors in the kitchen and bath, since they were down to the subfloors when we took possesion.

Kitchen before and after...

Living and dining room before and after...

Bathroom after...

I didn't get a good before picture, which is unfortunate because it was the worst.  No floors and a really bad vanity.  Not to mention old gray tile on the walls and a painted tub:(

Will's room...

his room mostly just got paint,

 but I thought I should show it since this blog is really about him!

Some of our helpers...

Easter!  Will loved the easter grass and the chocolate covered peep! 

He also liked his books and bubbles!

Will reading his elephant book before Easter morning mass...

 

Visiting the real elephant at the zoo...he signed 'elephant' over and over!

Will by the tulips:)

Will and Daddy attempting to fly a kite...

The bubbles went much better!

Playing in the backyard:)

More on the adventures of Will in his new backyard to come!