THESE ARE A FEW OF MY FAVORITE THINGS

These are my 2021 Christmas favorites!

1. Christmas Joy: "Let It Be Christmas"

Click HERE for "Let It Be Christmas"

2. Christmas Wonder: "His Name is Wonderful"

Click HERE for "His Name is Wonderful"

3. Christmas Love: "This Christmas Love"

Click HERE for "This Christmas Love"

4. Christmas Gift: "Emmanuel" by Hannah Kerr

Click HERE for "Emmanuel" song

5. Christmas Cheer: The Glory of Christmas videos    

Click HERE for Mary video

Click HERE for Joseph video

Click HERE for Shepherd video

Click HERE for Wisemen video

WALKING IN A WINTER WONDERLAND

I know snow removal is hardwork (Thank you Andrew).

I know driving in snow can be tedious and at times dangerous 

(Please Lord protect those traveling today).

But there is a very beautiful side of snow.

How lucky am I that I got to walk in a winter wonderland today?

 

NEED MORE TIME

Jonah usually needs more time than typical kiddos to accomplish milestones and tasks.

I guess Jonah's left kidney is following that pattern also.

Today's ultrasound shows little improvement from the September one which showed little improvement from the April one.

However, the doctor is hopeful.  He sees improvement in today's ultrasound that the radiologist didn't indicate on his report.  

It's his opinion that Jonah's body is just going to take more time to reduce the size of the left kidney.  

So we continue on a 2 hour voiding schedule, continue on the medication to help with voiding muscle control, and continue with the daily antibiotic- for another 6 months.

The doctor is not having us come back in 3 months because he feels that would be too soon since he feels this is going to be a slow process.  

If at 6 months, there is still little to no improvement, then he might pursue a renal test that would check kidney flow.  

Jonah already had a renal scan last fall to check renal function, and his left kidney contributes to 41% of his renal function which is good (usually kidneys are a 50/50 split).

So not good news because this kidney saga is still not over, but good news in that the doctor seems hopeful we are on going in the right direction, just very slowly.  

I'm glad the doctor warned me the ultrasound report would sound worse than the doctor's impressions.  Report states: 

"Persistent severe SFU grade 4 [most severe grade] left hydronephrosis."  

Yikes...

 

FLASHBACK VIDEO WITH A CHRISTMAS LESSON

 

This morning I remembered Jonah's performance in the 2015 Christmas program at church.

The preschoolers walked down the aisle up to the stage looking for Baby Jesus as the words of the song indicated.  

Jonah, much to our fear, took the lead.  He marched down that aisle and up the stage steps with determination.  

When he reached the top step, his eyes locked on what he was looking for: Baby Jesus in the manger.  

He went and grabbed the baby out even as his classmates were still trying to position themselves on center stage.  

We were both mortified and amused by Jonah's antics as we watched from the pew.

Jonah went off script since the children had been instructed to gather around the manger, not wildly yank the poor baby out of his bed, holding him by one arm.  

However, as I thought about his misbehavior, it actually made sense.  

For weeks, the children had been practicing the actions to this song in their Sunday School room.  During those practices, there was no manger with a baby.  So on this night, Jonah heard the familiar words of the song, directing him to find Baby Jesus by following the star.  Jonah was probably filled with great excitement when he started to walk down the aisle that Christmas Eve and he finally had Baby Jesus in his sights!  He was determined to claim the victory.

I think there is a larger life lesson in Jonah's enthusiasm to get to Jesus on that Christmas Eve in 2015.  

How many Christmases have we celebrated talking about the birth of Jesus but then never really claiming Him as a presence in our lives the rest of the year?   How many Christmases do we lose sight of Jesus by getting caught up in the hustle and bustle of gift-giving, Christmas get togethers, and all the other things we do to prepare for Christmas?  

Maybe this Christmas we should be very determined and excited to march down that aisle and claim Jesus as the most precious gift we could ever have in our lives.  And then keep Jesus with us all year long instead of storing Him in the storage closet until next year's program.  

Once again, a little boy with Down syndrome has a wealth of wisdom to share...

Now watch the video and be prepared for a whole lot of cuteness and comedy!

Christmas Even program from 2015 

Click HERE for Christmas Program video

SOME MEMORIES

Came across some good memories this morning:

Click HERE for Adoption Songs Playlist

These songs all had special meaning to us during Jonah and Ben's adoption processes.

Click HERE for Jonah and Manger Scene video

This video is so cute.  It was used as part of the Advent devotions at our previous church.  Since Jonah was non-verbal, this was how he shared his part in the devotions.  Video is from November 2015 so Jonah is 5 years old.

 

EVEN SO, COME LORD JESUS

A community an hour away from us experienced horrific tragedy late yesterday afternoon.  

Someone broke through the barricades of a community Christmas parade and raced down the parade route, killing 5 people and injuring over 40 people.  

Obviously, the investigation is ongoing so we do not know all the facts of why this person did this.  We also don't know the official number of victims yet as many are still being treated in 6 different local hospitals.

Click HERE for the news story of this tragedy.

When I heard this news last night, I was shocked and saddened.  

Now even a Christmas parade cannot just be an innocent and fun celebration anymore?  

I know the above verse from Revelation 22:20 is actually referring to the second coming of Christ, but as this verse entered my mind this morning, it made me think about Christmas this year.

After all the ugliness of this past year and half: COVID and all its controversy and tension, politics and all its controversy and tension, race issues, police issues, and senseless acts of violence like yesterday that continue to happen,   I am made aware once again of the brokenness of our.  The effects of our sinful choices are heavy and leave many feeling hopeless.  

Our hope and prayer this Christmas as Christians is that the Lord Jesus come into all our hearts and comfort and strength us as we face this difficult life.  

Our prayer as Christians should be that those who are rejecting the Lord as their Savior would instead be awestruck by His love and sacrifice for them and that they would come to know Him as their Lord and Savior.

Yes, it would be nice if all the problems of this world would be fixed, but what we need most is that hearts would turn to Jesus.  He is the way, the truth and life.  Only He can heal us from the brokenness of our sinful ways.

"So Lord Jesus, please come to us in a powerful and meaning way this Christmas.  Let the beauty and wonder of your birth that we celebrate at Christmas be the start of seeing your love and sacrifice.  For it is you Christ that showed us amazing love when you gave your life as a ransom for us when you died on the cross."

That is my prayer this Christmas.

Click HERE for resources about how know Jesus as your Savior

 

A TENDER SOUL PLUS A WOUNDED SOUL HOPEFULLY EQUALS

two tender souls....

I witnessed something very heartbreaking but beautiful this weekend.

Ben hit Jonah on the head with a recorder instrument.  Jonah cried.  Andrew directed Ben into our bedroom so he could talk to him about hitting his brother.  

Ben has very unique reactions to getting caught.  He often lies and says he didn't do it.  He often tries to blame Jonah.  But when you really push through and continue confronting Ben on his wrongdoing despite his denials and excuses, he goes into shut down mode.  He hides his face and will not give you eye contact.  This is the pose he took in our bedroom.

At this point, Ben usually reacts next in one of two ways:

1. Very defiant and angry at you as you scold him/talk through the situation OR

2. Very remorseful.  This reaction happens less frequently.  Ben tends to react with anger.

So Andrew went to talk to him and as he approached Ben, Ben let out a gut-wrenching scream combined with a growl like an animal.  To us, it sounded like Ben was trying to protect himself and keep Andrew away.  

Now I can never know this for sure because Ben can't or won't talk about how he was treated at the orphanage his 1st  6 years of life, but this is my guess why Ben screams/growls like this.  

Ben probably got away with lots of stuff at the orphanage because he would react with this way.  If he got caught, he probably growled and screamed and hissed so the orphanage caregiver would back off and leave Ben alone.  Of course, the other possible scenario I'm thinking could have happened, is God forbid, if the caregiver was more rough with Ben, this is probably how Ben defended and protected himself from getting hurt.  

Again, I can't say this for sure, but these are my thoughts of how things may have happened at the orphanage.

So Ben, even when guilty of doing something wrong like hitting his brother, comes out fighting and protecting to keep himself safe.  He reverts to survival mode.  

What he still doesn't understand at these times is that we are not orphanage caregivers.  We are his mom and dad.  We love him.  We want whats best for him. 

Yes, we will discipline him and talk to him sternly if its warranted, but we will follow that with love and comfort and then getting back to the fun of life.  We aren't just there to give him food and clothing and shelter.  We are here to live life with him, through the good, the bad, and the ugly.  His home and his family are his safe place where he will be loved unconditionally.

He is a wounded heart who is healing and learning to love and be loved.

That was the heartbreaking part of this incident.

The beautiful part was after Andrew talked to Ben about how wrong it was to hit his brother, Ben was still curled up in a ball in the corner of our bedroom.  He did not want to look at Andrew, and we felt he needed some minutes to collect himself before coming back in the living room.  Andrew left him with our bedroom door open so we could keep an eye on him.

A few minutes later, after Jonah settled down from being hit, Jonah approached Andrew as the red bump began to form on his forehead.  Jonah indicated he wanted to go in the bedroom by Ben.  Andrew let him go in, and Andrew watched as our tenderhearted Jonah went up to Ben and gave him a hug.

I was so proud of this little boy.  He had just been hit by his brother and his first reaction after getting over crying was to reach out to that brother and comfort him.   

How much could we all learn from that?  Is this not the epitome of "turning the other cheek" that Jesus commanded us to do?  

Those two little boys are a lesson in humanity.  

Ben, with his wounded soul, being brave and courageous as he learns to trust and love.  

And Jonah, with his tender soul, guiding and loving this brother that was thrust into his life 5 years ago, and choosing to forgive and forget when Ben hurts him.

It is our hope and prayer that with Jonah's continued guidance, patience, and love (and ours of course, but Jonah actually humbles me- I think he is better teacher than us grownups), one day Ben will have only tenderness in his heart.  The wounds of abandonment, loneliness, and fear will be healed.

One tender heart + one wounded heart = 

hopefully two tender hearts.

That's the math we pray for...

How blessed am I that I get to watch and learn these amazing life lessons from these two amazing little boys.  

Thank you Lord!

 

ANOTHER THANKSGIVING OBJECT LESSON

 

I found this neat way to go over the story of the very first Thanksgiving with the boys.

I also found this nice book to read to them also explaining the first Thanksgiving.

Click HERE for the video "Squanto and the First Thanksgiving"

STARTING THE CONVERSATION

...about Attention Deficit disorder regarding Jonah.

For many years, we have wondered if this was an issue for Jonah.  We would always ask the IEP team each year if they felt it was a problem for Jonah and for many years we were told "Not yet" or "Not really."  

Then in 2020, in 3rd grade, his team began to indicate they thought Jonah was now showing some clear signs of attention deficit being a problem for him.

But then like most things that occurred in 2020, COVID happened and this conversation got put on hold.

Then for 4th grade, Jonah's health took a severe detour with kidney and bladder problems.  Plus his schooling was very different- a combination of virtual learning, mom-schooling, and shorter hours of actually at school.  Most kids I think were challenged with attention issues during all this hybrid schooling.  

His team said they definitely felt like Jonah was struggling with attention issues, but we did not feel like last year was the time to start addressing a new issue for Jonah with everything else that was going on already.

So now Jonah is in 5th grade in person full time at school.  And yes, his teachers are quite sure Jonah has attention issues.

I don't know how to feel about this.  

I know Jonah has trouble focusing, especially when he is in a distracting place.  

I know Jonah can sometimes "act up" when he is sick of focusing on a task for longer than 10-15 minutes.  

I know that sometimes Jonah can just zone out on you, and you just have to wait it out for him to come back to you.

I know that Ben rarely struggles with staying on task.  Ben is very driven and wants to get things done.  

However, I also know that many times I think Jonah is not paying attention only to realize he heard each and every word I was saying.  

I also don't completely understand how much of his inability to stay on task is because of Down syndrome versus attention deficit disorder.

I also don't know how much of Jonah's difficulty to stay on task is a personality issue?  Ben has a very different personality than Jonah.  Ben is a more forceful serious person with more drive.  Jonah is more laid back and likes to have fun.

I also know that Jonah's ability to have many "movies" playing in his head at one time is part of what makes him so special and unique.  The kid is always creating or re-creating scenes in his head.  He is always making associations between what he is currently doing and something he previously did.  He has an imagination that I can't begin to imagine it's potential sometimes.  

Like this morning, in his first 15 minutes downstairs from his bedroom at 6 am, he had created the Museum of Natural Science from the movie "Night at the Museum".  He had "exhibits" that stretched from our living room to our front door.  It looked like a major mess to me, but in his mind, he was Larry the security guard walking the halls of the museum in New York City.  

Is this a problem?  

Or is this creativity a gift?  

Do we medicate that away?  

I don't know.

But I think we at least have to start the conversation.

So our pediatrician wants us to fill out behavior rating forms as well as Jonah's teacher.  Then our doctor will talk to Jonah's teacher.  From there he will assess if he feels attention deficit is an issue for Jonah.  Then I'm guessing he will present his ideas on how that might be treated.  Then Andrew and I will have to take all that information and assess what we feel is in Jonah's best interest.  

Here is a good resource I found.  It contains the behavior rating forms that the doctor provided us with.

Click HERE for more info about ADHD

Click HERE for Vanderbilt Parent Scale for ADHD pdf

 

DOCTORS AND HAMBURGERS

 

For our boys, especially Jonah, any medical appointment is usually followed by Culver’s drive thru.  It’s what gets us through appointments 😊

Today Jonah had his 11 year check, and Ben had a 6 month endocrine check.  Both boys are doing great according to their doctors!

Both boys are under 10 percentile for weight and height when compared to typical kids.  Both boys are in the 30-50 percentile in weight and height when compared to other kiddos with DS.  So they are much smaller than their fellow 5th graders at school.  

Busy day but a good day.  

It felt good to take Jonah to the doctor because he’s healthy and not because there’s a problem.  The past 12 months were rough for Jonah, but here’s to a smooth road going forward!

THANKSGIVING OBJECT LESSON

Today we did the following object lesson to teach the boys about thankfulness.

1. Thanksgiving Eye Spy to go along with the theme of looking for clues.

Click HERE for FREE Thanksgiving I Spy PDF

2. Listen to the song "Evidence" by Josh Baldwin.  Explain evidence is finding clues that prove something is true.  Every time they hear the word "evidence" in the song, we had them pretend they were looking through a magnify glass for clues.

Click HERE for song

3. We showed the boys 2 of their jackets and asked how someone would know which jacket belongs to which boy.  Sometimes it's easy to find evidence.  For instance, if a jacket has a name tag on it, then we know whose jacket it is.  But sometimes, we have to look hard for that evidence.  We looked in the pocket of one jacket and found Jonah's favorite blankie.  We told the boys this was evidence that showed this jacket was Jonah's and not Ben's.

4. Then we talked about sometimes we have very good days, and so it's easy to be thankful and find "evidence of God's goodness".  But on hard days, we might have to look or try harder to find that evidence because we might be upset or sad.  But Psalm 68:19 teaches us that every day God blesses us with things to be thankful for even if we are having a bad day. Then we made this craft that shows things we can be thankful for each day.  After the boys had placed the pictures on the paper, I cut out the middle of the magnifying glass to remind them we have to look for things to be thankful for each day: Evidence of God's goodness.

Psalm 68:19 Blessed be the Lord, who daily bears us up.

 

WHAT A GREAT IEP!

 

Today was Ben's IEP meeting.  

Today I had the privilege of sitting for an hour and listen to his special ed teacher, regular classroom teacher, speech therapists, occupational therapist, adapted phys ed teacher and special ed director all talk about how GREAT Ben is doing in school.  Here are some of the comments I heard:

1. He is funny.

2. He is smart.

3. He is hard-working.

4. He is very focused and determined.

5. He is organized.

6. He is a very good independent worker.

7. He is a good negotiator: he knows how to communicate what he wants, but he is also responsible about keeping up his end of the bargain.

8. He is moving ahead in reading.

9. He is moving ahead in counting, adding and subtracting.

10. His handwriting is improving even though he does not have a proper pencil grip.

11.  He is good at typing using the "hunt&peck" technique.

12. His speech is improving.

13. His core strength is improving.

This boy is rocking it!  

How nice to hear how much his teachers and paras enjoy teaching him!  

In regards to my concerns about Ben's social issues, the school team doesn't really see inappropriate social skills from Ben.  It seems to be something he struggles with at home (probably a defiance thing) and out in public (probably too many variables and unknowns for Ben).  

The school setting is one Ben feels very comfortable in, has a lot of structure and routine which Ben loves, and Ben experiences lots of success at school which helps him to feel comfortable and confident in a good way.  

So the school agreed to help us with Ben's social issues by "setting up" situations for him at school where he has to interact with people or students he doesn't know and then help him work through appropriate ways to act in those situations.  I appreciate school's willingness to help us with this.

I don't think I give this little fella enough credit sometimes.

When I think about all his life has been before he came to us and all he has had to adjust to since he came to us,  it's incredible to see how great he is doing.  What a miracle!

I was watching a special needs mom I follow on YouTube, and she stated that she hates IEP meetings because it's an hour of hearing how unsuccessful your child is.  I have actually never felt that way in any of the many IEP meetings I have attended over the years for both boys.  I am always excited to hear about their successes and encouraged to know the school is willing and able to do what needs to be done to help them in the areas they need work.  

But today was even beyond that because today I heard Ben is one incredible little kid that school enjoys having in their classroom each and every day!

Great Job Ben!

ORPHAN SUNDAY

Our church today acknowledged Orphan Sunday.  We heard a great sermon.  

We were also asked to share our adoption stories.

Click HERE for video of 11-7 church service

 

14 YEARS OLD AND STILL RUNNING!

I mean literally running- he still runs a 1/4 mile with Stephen that ends in an all-out sprint at the end.  Pretty impressive for an elderly dog!

Our dog Tucker just recently turned 14 years old!

He is a very special and loved member of our family.

The three older kids all came home for Tucker's birthday weekend.  As hard as it is to type this, we all know the possibility is great we might not have many more birthdays to celebrate with our dear friend.  

The kids decided to write a letter to the place where we got Tucker.  I think the letter and the photos capture how much this dog means to all of us.

We wanted to send an update on the life of one the dogs from your place. This might not be an email you receive very often, but we thought it’d be nice for you to hear.

We got Tucker “Booker” in the summer of 2008. He was born October 10^th, 2007 with parents Emma and Vinny. When we got Tucker, we also met his siblings Spidey and Corky.

Tucker has had a pretty nice life here with our family. He has two older sisters, an older brother, and two younger brothers- lots of kids to keep him company throughout the day. He loves playing fetch with a football in the yard, going for walks down by Lake Michigan, and running with his older brother. Even turning 14 years old this month, Tucker can still keep up with all these activities- he has been an amazingly healthy dog all these years! He has also grown quite fond of being spoiled by his older siblings. Tucker sleeps on one of their beds each night and has his own blankets, which he has become very attached to.

Tucker has always been a more mellow character. We remember this about him from the first time we met him at Pleasantview Pups. Our first memory with Tucker is playing fetch out in your yard, and after being shy with us initially, we saw Tucker outrun his mom Emma to show off his speed and get to the ball first. He’s been a great playmate, a faithful comforter, and a loving friend for everyone in our family.

We’ve attached some pictures of Tucker with our family from all the years we’ve shared with him. We hope you enjoy looking through them and can get a sense of how much Tucker has impacted our lives. He has truly been a blessing to all of us, and we are so thankful for you at Pleasantview Pups for making it possible for Tucker to be a part of our family.

DAD IS AWESOME!

 Or another way to say that is “Dad is more fun!”

I spent a week with our oldest daughter up in the Twin Cities.  

Andrew was on 24/7 duty for the boys.

He did great!  The boys had a blast:  Culver’s, pizza, camping in the camper in the driveway, corn maze, and apple picking!

OCTOBER IS DOWN SYNDROME AWARENESS MONTH

 

The boys' special ed teacher and homeroom teacher agreed to show the following video and then give a short presentation to the 5th graders about Down syndrome.  I think it was a great experience for all involved!  

Click HERE if video isn't appearing above

Following is the handout the boys gave to each classmate along with a bag of popcorn.

The teachers also did a drawing with DS awareness bracelets as prizes.

Nice and simple but hopefully had a impact.

Every once in a while, differences between us and you POP up.

 But for the most part, we are all a cool bunch of kids wanting to have fun 

and be the best we can be.

Thanks for taking time to learn about Down syndrome!

Ben and Jonah

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

FACTS ABOUT DOWN SYNDROME

Down syndrome means we have 3 copies of chromosome 21 instead of 2 copies like you do.

This extra chromosome affects how we

learn

talk

walk

write

behave

Most often we can learn how to do these things just like you. But sometimes, people with Down syndrome have to work twice as hard to learn things that come easy for you. 

HOW CAN YOU MAKE A DIFFERENCE?

Be patient

Be a friend

Be a role model

Offer help if we are struggling with something, but don't do things for us.  We have to learn.

Include us.

THINGS TO REMEMBER

Everyone is different- that's what makes the world interesting

STILL LEARNING TO BE SOCIAL

 

In preparation for Ben's IEP in November, I typed up this summary of Ben's social skills according to our observations.  I'm anxious to hear school's input on this.

BEN'S SOCIALIZING/MAKING CONVERSATION

 Issues:

1.      Wrong Answer- Doesn't answer questions appropriately or correctly,  ie. "Cow", "Mom", or just babbles.

2.      Delegate- Tries to get Jonah (or someone else) to answer instead.

3.      Whispers answer or answers into his armpit.

4.      Lack of eye contact.

5.      Not Understood- Talks too fast or has trouble with pronunciation.

6.      Shuts down- doesn't make any response.

 

Why we think this happens:

1.      Speech issues- Ben needs to continue learning proper pronunciation and proper speed of speech.

2.      Social Anxiety-  Ben experienced lack of socialization for his 1st 6  years in the orphanage so Ben doesn't feel comfortable or know  how to interact with people appropriately.  His orphanage years I'm  sure play a role, but we are hoping with each additional year Ben      has with us, this becomes less and less of an issue for him.  However, perhaps we shouldn't underestimate how much not having the basic communication foundations for those highly impactful first years is limiting him even now after being with us  5 years…

 NOTE: in our adoption/trauma education we had to take for           the adoption process, we learned that orphanage behaviors can        fade/drop off after the child is home with family for a longer time      than he was in the orphanage.  We are at year 5 1/2 so we are    almost at the half-way mark!

3.      Control- due to Ben's "hard past" of being in orphanage for 6 years, control is always his go-to emotion/goal.  Ben had to look out for himself for 6 years to make sure he survived and got the limited care and attention that was available to him at the orphanage.  So  everything Ben does, unless you can capture him at a moment   where he lets his guard down, Ben wants to control the situation.  It doesn't matter to him if having this control gets him positive or       negative attention, he just wants to be the one to determine what   he will do, how he will do it, and how others should respond/react   to him.  This means if Ben chooses to engage someone in        conversation, you will see a very different style of communication   than when someone else initiates conversation with Ben.  This is        when the issues 1-6 come into play.

4.      Jealousy- This is probably a subset of Control, but I believe Ben has social issues often because he is jealous of others getting attention.  By others, I particularly mean Jonah.  I will often see better social   skills from Ben when he is alone versus when the 2 boys are together.  Again, even if Ben acting inappropriately gets him in trouble, he considers this a win because he probably got more attention, all be it negative, than Jonah during or as a result of the social interaction.

 What we are currently trying to do to help Ben:

1.      Speech therapy at school and thru Rehab Resources.

2.      At home, we go over these Conversation Rules:

                   a. Listen to the question

                   b. Think about your answer.

                   c. Answer the truth.

                   d. Make eye contact.

                   f. Speak clearly

3.      Use of the speech device to assist him in being able to be   understood by those outside his inner circle.

4.      Building upon and encouraging Ben's amazing strengths   

                   a. Ben is very smart.

                   b. Ben has a fun personality.

                   c. Ben is hard-working and determined.

                   d. Ben has good command of the English language despite only learning it starting it at age 6.

                   e. Ben is resilient.  He is tough and strong.  He is a survivor.

                   f.  Ben's potential to do incredible things with his life.

 Possible Action Steps:

1.      Do you agree with all of this information from your experience with Ben at school and/or therapy?  Or is this something that we just  experience at home and social situations besides school?

2.      Are there specific goals/tasks that should be included in his IEP to help Ben in the social area?

3.      Any other help/resources that may be available to Ben to help him improve socially?

4.      Any help/suggestions for Andrew and I as we try to work on these issues at home?