GREAT NEWS AT IEP MEETING!

We had Ben's annual IEP yesterday.

What a positive and uplifting meeting!

In a nutshell, our little Ben is doing great at school!

The team stated that Ben is learning and working at a 5K level.  

Areas he is making good progress:
1. Reading: sounding out words, learning sight words, and reading comprehension. 
2. Math: recognition and counting up to 60, simple addition and starting subtraction.

Probably the area that most surprised and impressed us was that the social behavior goals/issues in the IEP can now be removed.  The team feels Ben acts appropriate for a 3rd grader with Down syndrome.  He will continue to have supervision because he is not 100% trustworthy (are any of us though?).  But as far as behavior being a concern for Ben, he has made enough improvement in how he handles himself that the school doesn't feel it needs to be part of his IEP goals.  

We are so proud of Ben!  He has had to adapt and transition to so much these past 4 years.  It hasn't been easy for him, and there were times we wondered if he would be able to handle things, but slow and steady wins the race!  Congratulations Ben!

The other highlight was to hear how much his speech and language has improved.  This little boy has quite a command of the English language considering he only started to learn English 3 1/2 years ago. What an accomplishment.  

We are so proud of Ben and so impressed with our team at school.  Their support and dedication to Ben's education and well-being are so greatly appreciated!  

Thank you Lord!

We love our Benny!

  

THROUGH THE EYES OF JONAH

Every once in a while, you hear a weird news story of someone claiming an object looking like something famous.  For example, a potato chip that looks like it has a picture of Jesus on it.  Or two years ago, the cheeto that looked like Harembe the gorilla.  Interestingly enough, CNBC reported that cheeto sold for $100,000 on Ebay.  Someone must have a lot of extra money laying around...

Anyway, today our family had a "potato chip Jesus" moment.  We were eating frozen pizza for lunch.  Jonah started talking very excitedly about eagles.  Remember, eagles have been an obsession for him since this summer.  (Why?  We don't know.)  But today at lunch, we really couldn't make the connection between his pizza and eagles.  Until we noticed he was pointing at the bottom of his pizza slice.  This is what he was pointing at.  It really doesn't take much imagination to see the eagle on the crust.  Pretty amazing actually!  

Then after the good laugh we had about his eagle pizza, Jonah decided to come up with an eagle costume for himself.  Quite clever, really- a brown scarf around his neck and a white cloth on his head.  This kid!

  

Maybe we should all take the time to look for potato chip Jesus or eagle pizza.  After all, isn't finding elephants in the clouds or star gazing one of your favorite kid memories?  Why do we stop doing those things as we grow up and "mature"?  Seems like somethings we should keep in our lives no matter how old we are.  I think the boys will be a good reminder of those things for us over the years.  

Now go open a bag of chips or make a pizza, and then start looking!

If you're interested, here's the Harambe cheeto.  Personally I think Jonah's pizza is more valuable.  Too bad he ate it!

VERY CONFUSING!

The calendar says 10-31-19 which means it's Halloween.  However this is what we woke up to this morning: a blustery snowy day!  

I don't know what the boys were more excited about, the snow or wearing their costumes at school.

Even though the classroom parties weren't suppose to start until this afternoon, Jonah somehow managed to get in his Batman costume by 8:45 this morning.   It looks like he is fearlessly defending his brother in this photo.

The snow had stopped falling by the time the boys were ready to hit the streets for trick or treating. What an unusual Halloween!  

THE LAKE IS ALMOST AS BEAUTIFUL

Abigail and I took the boys on a hike down by Lake Michigan on Saturday. What was intended as a photo to showcase the beauty of the lake ended up being usurped by a beautiful moment captured between our boys.

I just love this photo.  It shows the brotherly love and friendship that has developed between these two over the past 3 years.  

These two will always have/need a lot of support people in their lives- that means some people will come and go for them over the years.  But one constant they will always have is each other.  They will never be alone, without a friend.  That is beautiful!  Thank you Lord for giving them each other.

The boys immediately thought of this being the house of sticks in the Three Little Pigs story.  Jonah tried his hardest to blow it down as the mean wolf!

More brotherly love!

Annual pumpkin carving with the sissies (and dog!)

Ben and Jonah have become gamers!  It really doesn't matter to them if they win or lose in the game.  It's just a super fun activitiy to do with Dad!

And why is Jonah eating toast with chopsticks?  Because he can!  

And also because a segment on Sesame Street showed a family making food and eating it with chopsticks.  Jonah loves to imitate and copy. 

OCTOBER IS DOWN SYNDROME AWARENESS MONTH

The boys bought a treat to school this week along with the following note to their class.  

Their teachers also read the book 

What's Inside You is Inside Me Too

We feel like our boys are accepted by their peers in an awesome way.  

We felt this was a great way to continue fostering that beautiful acceptance and awareness of 

Down syndrome.  

Thank you to all of the teachers for taking time to celebrate our boys!

Click HERE for the book What's Inside You is Inside Me too

      This was the note given to each classmate:   

*****************************************                         

TYPICAL: 46 Chromosomes

DOWN SYNDROME: 47 Chromosomes because 3 copies instead of 2 copies of #21

Thanks for letting this be such a small difference

between you and us. 

That's "down" right nice of you. 

We appreciate your friendship!

Jonah and Ben

***************************************

Click HERE for 31 Facts About Down Syndrome

WE'RE IN A GOOD PLACE!

Yesterday Ben had his cardiology check up.  

Ben had open heart surgery on 9-2-12- Ventricular septal defect repair.  He was 18 months old.  The surgery happened at the hospital in Vilnius. 

As we were waiting for the appointment, I noticed this sign in the waiting room.  The specialties our boys frequent at Children's Hospital of WI are:

1. Ben: cardiology and endocrine (thyroid)

2. Jonah: endocrine, pulmonology, urology (no longer since his kidney/bladder surgery in 2011) and ENT.  

The only department not listed on this sign is ENT.  However, we have experienced amazing care through that department also.  

We are so grateful and blessed to have this incredible top notch facility only 45 minutes from our house!  They have taken good care of our boys!

So now on to Ben's cardiology appointment.  Ben had an echocardiogram and then met with the doctor.  The doctor says everything continues to look great for Ben's heart.  He is still very impressed with the surgery done over in Vilnius in 2012.  Ben is doing so good that our next cardiology check up will be in 3 years!  

I'm obviously very happy and relieved to know that Ben has no heart issues.  However, what impressed me most about yesterday's appointment was Ben's behavior.  He was so relaxed and friendly to everyone.  

Ben gets very nervous and scared about doctor appointments, especially ones that require stickers/wires and scanning.  Ben is very weird about physical touch.  

We really tried to prepare Ben for this appointment since his fear translates to him being a very strong and angry/mean wiggly worm on the exam table- in other words hard to control and not nice to be with.  

His first echocardiogram back in 2016 when he first arrived home was quite a struggle...many doctor/dentist appointments since then have been struggles.  

He is very fearful about being hurt.  We try to be sympathetic and remember that this little boy faced all things medical (including open heart surgery) ALL ALONE for 6 YEARS!  Obviously that shows he is quite a brave boy, but he also may have some negative baggage from all those experiences that make things even worse now.  However, as is the case with Ben quite often, scared/sad presents as mad which makes comforting him very challenging.  

So to prepare for yesterday, we watched a YouTube video showing what is involved with having an echocardiogram and talked lots about what to expect.  We also made it clear that we expected him to be nice even if he was scared.  We used the phrase "Quiet means Quick" to encourage him to cooperate.  And we dangled the Culver's carrot- if the appointment went smoothly, we would stop for a hot dog on the way home.  

Ben started out a little shaky when the wires were being place, but then he pulled himself together and was able to lay very quietly for the scan.  He went on to be very friendly and polite to the tech, nurse and doctor.  

Ben really amazed me today! He looked to me for comfort and assurance, and he showed great bravery in facing his fears and anxieties.   We love you Ben!

His scar from his heart surgery.

And of course, what is Ben without his faithful sidekick Jonah, right?

Love these boys!

ONE MONTH CHECK

We survived one month of school!

Actually, the boys' school year 

is off to a great start.  We have heard such good reports for both boys.  

We are so proud (and relieved) to hear that Ben is a happy and friendly boy at school.  He seems to be doing quite well with social interaction so far this year.  His teachers are also impressed with his reading and math skills and how eager he is to learn new things and work hard.  

Jonah is having fun interacting with his peers.  If the teachers can get him to stay focused (still a challenge), he works hard on his reading and math skills and is having some success.

We took the boys to a birthday party for a classmate this weekend.  We were very impressed with how appropriate our boys acted during the party.  It was so much fun to watch them have fun with other kids without needing a lot of guidance and interference from us.  

I really think the boys are maturing in their behavior!  I am so proud of them!  

Two weekends ago we visited our 2 college kids up in Minnesota.  Lydia stayed home because she had to work, but it was still nice to have most of the gang together.

The boys insisted on bringing their Batman costumes to Minnesota.  And yes, they went full costume for their playtime in a city park.  

Living life without inhibition sure is fun!