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!

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!

 

 

 

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:)

www.columbusbuddywalk.org

Go Team Will's Way!

Love

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

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!

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!

I Knew Today Would Come

I knew someday that my niece and nephew would start asking more questions about Will and Down syndrome.  Because they have had to tag along this summer to Will's appointments, they have recently been asking why Will goes to therapy but Lillian, their baby sister does not.  Until Lillian came along, I think they thought that all babies went to therapy.  They are also curious as to why Will has a Buddy Walk, but they don't.  This is a hard topic on so many levels and one that my sister and I have discussed many times.  First, we don't want to say it is because Will is special and imply that they are not.  Second, I especially don't really want them to see Will as different because at this point in Will's life he is more like them than not.  I do think there is a double standard here, and I am willing to admit that I take part in it.  I want the world, and Will's cousins, to see Will as typical and capable and treat him like everyone else, yet I want them to acknowledge and accept his disability and treat him with extra patience because of it.  Third, it is hard to explain chromosomes to kids without confusing and scaring them!

Well the cat jumped right out of the bag today!  I was caught completely off gaurd.  After watching a signing video with all the kids, there was a commercial at the end that mentioned certain videos for children with Down syndrome.  Ava looked up at me and said, 'DD that lady said Down syndrome.  I know William has Down syndrome.'.  My heart sank.  I love these kids like my own and had thought about this moment since Will was born with his special little chromosome and yet I could think of nothing to say.  She said 'What is Down syndrome?'.  So somewhat in contradiction of what I said earlier, but trying to think on my feet, I said 'It is something that makes William a little bit special and a little bit different.'.  Expecting to go on and on about chromosomes and therapies and Buddy Walks and thyroids, I was cut short when she said 'Ok'.  Well that is that.  At least for now.  And all the while Jonas sat there playing with Will's dinosaurs, oblivious to our conversation.  Which is just fine with me.  I love these kids and I love how much they mean to Will and I am happy with how things are for him and them right now.  And I guess I am a little afraid that it will change if they know too much.  I wish they could stay this age forever!

Weekend Playgroup and Trip to FW

A few pictures from our weekend playgroup that I have been a part of this year.  Another mom and I were asked by the organization to start up the group and it has been a lot of fun getting the kiddos together to play each month!  Plus the moms and dads have a great time talking and networking!  This church in our neighborhood welcomed us in and it is a great place to play for our kiddos!



After the playgroup, we went home to Fort Wayne to see 'Icky, Papa and Gaga'.  Will is now saying Papa and starting to say Icky, but not Gaga yet.  He is not necessarily saying them in the order of preference:)

Getting ice cream in his jammies with Great Grandma Brough at Will's (and Mommy's) favorite spot...Zesto's!

Sign up for the Columbus Buddy Walk on 9.23

Join us on 9.23.12 and walk with Will at his 3rd Buddy Walk.  It will be his first walk that he can independently walk for, so it will be a pretty big deal!  We would love to have all of Will's fans walk with him, but if you can't join us, please donate to team Will's Way to show us your support and help us reach our goal!  Any amount is appreciated as it supports our local Ds organization, that has been so helpful to us.  Go Team Will's Way!

Will's Way's Columbus Buddy Walk Profile Page

Spoon Strike is Off!

Will has decided that the spoon strike is off.

He is eating dinner in his birthday suit because it is so hot!

Will has been signing and saying so much more lately.  I am so glad he can use his signs, but I am thrilled that he is starting to say more too!  While on a walk last week he looked straight up at the moon in the sky and signed 'moon' and said 'moo'.  This was very exciting because often he only signs or says something when prompted, but he not only initiated the sign and the word on his own, but he knew that it was the moon in the sky.  I am very proud of him.  Since many of you may not know baby signs, I will tell you that in this video he is signing both sun and moon accurately.  And his appoximation of the word is good too.  His speech therapist encourages us to use approximations, or the beginning or ending of a word, until he can get the whole word.  Like for 'more' we use 'mo'.  I guess something is better than nothing!

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!