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JONAH'S HEALTH HISTORY

Thursday, August 17, 2023

OPEN ARMS



I think most people like to be welcomed with open arms.  It's not a pleasant experience to be in a new situation and feel like either no one wants you there or doesn't even notice you.

Jonah started youth football this August, playing for the 5-8th grade team.

Jonah, and us as parents, could not be experiencing a more warm welcome to the team!

The coaches are doing everything they can to make Jonah feel part of the team.  They are being totally understanding of what might not work for the little guy, in terms of ability and attention span.  They are super excited and patient to make this work!

Jonah's teammates, who are also his typical classmates at school, are so encouraging and including of Jonah.  They are always offering a fist bump, high five, or "Good Job" to our guy.  It warms my heart to see kids be accepting of kids with differing abilities.  Great job kids (and parents/teachers/coaches for fostering this mindset)!!!!

We are not sure if Jonah will participate in every practice/every game or even the whole season.  We are letting him take the lead on this one because this is not the type of experience where we feel as parents we can push him to stay committed.  The physical and cognitive effort it takes Jonah to participate in regular/non adapted football is HUGE.  We are not going to push him if he doesn't feel comfortable with this.  But so far, he puts in 30-60 minutes of practice where he really tries to do what every other kid is doing and then he tells me "All done"  We are taking this experience day by day, but it's nice knowing Jonah has a bunch of coaches and teammates who want him to keep coming back!

That is pretty special!


Some cute things so far in Jonah's experience on the team:

1. Since we weren't sure if this would work for Jonah to play football, we first suggested to Jonah maybe he would want to be the team manager/water boy.  He emphatically said, "No, PLAY"

2. After his first practice, he told me "Good news, Mom- Green Bay Packers!"  He thought his next move was to that team!

3. Jonah noticed team photos from other years hanging in the equipment shed.  The background on the photos is a rocket blasting off.  For his team picture day today, even though I have tried to explain no, he is quite sure there will be a real live rocket for the team to pose in front of.  This kids lives in the land of eternal hope!

4.  At his first scrimmage last night, because he is very unsure of what he is suppose to do (plus I think has very little peripheral vision with that big helmet on his little head-haha), when the rest of his team took the sidelines to have a break, Jonah just stayed in the middle of the field.  He ended up in the huddle of the next team up to scrimmage.  I don't think he ever noticed he wasn't with the right team until one of our coaches noticed him and got him back to the fold.  


 

Wednesday, July 26, 2023

GROWING UP DOWN SYNDROME STYLE

 


Ben and Jonah transitioning from boys to men is going to be an interesting process.

With Down syndrome, there is the biological age which tends to parallel typically developing kiddos.   

But then there is cognitive age which tends to lag behind typically developing kiddos.  

For example, our boys are going to be in 7th grade, but their math and reading levels are closer to 2nd grade.  They also play and watch TV shows/movies that would be at the early elementary age level.

NOTE: Of course, cognitive development for Down syndrome is individually based so some kiddos with DS might be farther along than others.  Each person is unique and has his/her own set of abilities and gifts.

So as the boys grow up physically, it will be interesting because cognitively they might still be processing things as a young child.

Case in point:

 This is what Jonah wants for his 13th birthday in September.
Little did he know a REAL shaving kit might be in his very near future...
His eyes got very BIG when I told him that this morning!




WHAT IS YOUR REACTION?




I came across this flower during my morning neighborhood walk.

What is your reaction? 

Are you thinking this flower doesn't belong in this place 
or are you thinking this flower is beauty in a unexpected place?

This photo could be a metaphor for life: 
how do we deal with the challenges and difficulties in our lives?

It could also be a metaphor for how you feel about people who are differently abled...

It will be interesting to see what this neighbor does with his surprise sunflower- remove it or drive around it?  I hope he EMBRACES it!




Monday, July 17, 2023

WHAT WE "GOT" ON THE SEVENTH ANNIVERSARY OF BEN'S GOTCHA DAY


Ben on a recent hike at Governor Dodge State Park

Ben became our son through the Lithuanian court system on 7-15-16.  

That means this July we celebrate Ben being in our family for 7 years.

That means pizza party tonight!!!!!

Through research and the many classes we had to take in preparing for our adoptions, we learned an unofficial guideline of adopting a child from a hard place (ie. orphanage, foster care, etc).  The guideline is that generally it takes as many years the child was in his/her difficult situation for the child to overcome any coping/defense mechanisms in interacting with his/her new family.  

So last year was the even split for us, Ben had spent his first 6 years in the orphanage and his next 6 years with us.   This meant this past year was suppose to show us a Ben free of "orphanage junk".  Is that what we saw?  Not really.  

Ben still deals with social anxiety and control issues.  I knew in my head this guideline wasn't a 100% guarantee, but I guess my heart was clinging to it more than I realized.  It's been a bit of a struggle realizing that some of Ben's more challenging behaviors might not ever go away.  Despite all the time, effort, and therapy over these past seven years, Ben still deals with social anxiety and control issues when interacting with people.

Now before I sound too negative, I have learned through our experience with Ben, that it's always important to look at where we have come.  And all of us have come a long way.  Ben definitely feels like he always been a part of our family, and we love having Ben in our family.  He adds an energy and fun to our life that we couldn't imagine not having.  He is great brother, friend, and playmate to Jonah which was one of our hopes and prayers as we thought of adopting a 2nd child with Down syndrome.  And just as important, Ben seems to love being in our family.  He adores his older brother and sisters.  He loves his dog.  He loves going to school every day.  He loves to learn and be challenged.  He loves video games, riding his bike, swimming in our pool, camping, and playing baseball and basketball.  

And in regards to my relationship with Ben, the two of us have also come a long way too.  Ben had the hardest time bonding with me to bond because I was most like the orphanage caregivers he was use to.  I didn't represent anything new and exciting like Andrew and the others did in terms of relationships.  Plus I am Ben's primary caregiver so I feed him, clothe him, and guide and direct most of his activities during the day.  Just like his orphanage caregivers.  And those orphanage caregivers came and went with great frequency so attaching to them wasn't easy or safe for Ben.  So I think it took a while for Ben and I to attach to each other.  But we have gotten there.  In fact, during our recent camping trip, Ben fell off his bike and scraped his tummy.  He came back to our campsite asking for ME!  He wanted me to comfort and care for his owie which is huge!  Not that I wanted him to get hurt, but it was really cool to be his "go-to" person.  

So yes, Ben has made lots of progress over these past seven years.  But as I said before, what we still "got" with Ben on this 7th annniversary are social anxiety and control issues.  The good thing the frequency of these "flare ups" are less than they were in the beginning.  

Of course, the other thing to consider is Ben's struggles may not be 100% orphanage related because Ben may have inherited some of these personality traits from his birth family.   We never met his birth family so we will never know for sure.

In the end, after 7 years home, Ben is kid who has overcome a lot of obstacles and his thriving in amazing ways- way beyond where he would have be if he had been sent on to the Lithuanian mental institution if he hadn't been adopted.  Besides remembering where we have come from, we always have to remember where Ben could have ended up if the Lord hadn't brought him to us.  

Ben is a unique combination of funny, sweet, smart, and complicated.

He probably thinks the same about his family :)      



Sunday, July 9, 2023

CAMPING WITH EXTRA CHROMOSONES

 

We just got back from a six night camping trip.  

So many great memories, and of course, so many unique (and often hilarious) moments that most likely come from the extra chromosones in our family. 

1. Ben's packing: one square of shelf liner and a pencil

2. Jonah's packing: 4 lunch boxes/3 backpacks/2 baskets filled with Little People and other assorted toys plus 2 US maps (to help Andrew find the campground) and 2 Indiana Jones books.

3. Ben mastering taking a bike ride around the campground with a friend- no parent present.  So proud of him!

4. Jonah mastering taking a bike ride all by himself to our friends' campsite, 2 sites down.  

5. Jonah howling in pain as we left the beach because of personal issues :)

6. Us disciplining Ben by taking away dessert because he was late coming back to campsite for lunch only to find out the reason he was late: he was reading a Bible storybook with his friend.  Bad parenting moment :(

7. Frequent guitar/vocal concerts Jonah.  Selections included Christmas music, Beatles, Disney, and nursery rhymes.

8. Jonah not recognizing personal space while swimming: ended up near a trio of 3 pretty girls on floats, and also kicking a different girl in the stomach while he was swimming underwater.

9. Jonah dressing as Indiana Jones for our tour at Cave of the Mounds.

10. Jonah having a bit of a meltdown when he couldn't wear his Indy backpack during the tour.

11. At the end of the tour, when the tour guide asked if there were any questions, Jonah asked her where the ark of the covenant was.  She was speechless...

12. Around the campfire, Jonah acting out the Moses and Pharoah story.  He was Pharoah and used a piece of paper towel and a baseball camp as headpiece.

13. Ben taking a four mile hike with Andrew.  This kid is tough!

This is from one of our hikes.  See me in the background?  
This is progress from 2 years ago when I had to sit right NEXT to the boys 
to keep them from falling/jumping in the stream :) 

This photo isn't from camping, it's from the 5th Indiana Jones movie- Jonah went in costume!




Wednesday, June 14, 2023

JUST HAVE TO BRAG

 

I just have to brag about Ben and Jonah.

We camped at Devil's Lake State Park the past 4 days.

Ben has always been a very good hiker.  
Jonah is a much improved hiker from last year.  

But the boys did a hike on Tuesday that we could not believe 
they were both able to complete.  

They hiked up and down this trail.  
Some of the "steps" looked like this.

And some were actual steps.

This is what we were hiking to- Balanced Rock.

The park literature states 
"Difficulty: Challenging...A difficult, steep, climbing trail with stone steps on the south face of the East Bluff... .4 mile, Approximate hiking time 1 hour"

Our total journey there and back took 1.5 hours.

The boys showed incredible strength and endurance.  We are so proud of them!
  
Interestingly, Ben was scared going up, and Jonah was more scared going down. 
 
Also, Jonah was pretty tired coming down so he needed lots of encouragement, rest stops, and distractions (ie. singing Beatles songs) to keep him moving. 
 
And shout out to two guys we encountered on the way down the trail.  They were very encouraging to Jonah.   Jonah was in the middle of a sit-down protest because he didn't want to go any further.  The guys told him he was tougher than they were because they hadn't even made it to the top yet.  It is always so nice to encounter people who comfortably interact with our guys. 

This is from our hike on Monday where we hiked along the bottom of the ridge.  I think this photo is funny because it looks like our boys caused an rock avalanche.

I love this photo.  You can really see the love between these two.  

Sometimes it just hits me how cool it is that these two goofy guys have each other.  

Friday, June 9, 2023

REASONS I LIKE CAMPING

 


For those who know me, I won't be the first person you would think of who would love camping.  I don't like bugs, I don't like chaos, I don't like to be too hot, and I don't like public restrooms.  

So why in the world do I like camping?  

Here is the mystery revealed:

1. Wisconsin State parks are awesome!  So many pretty trails and lots of nice campsites.
2. My "to do" list is much smaller when camping:    
    a. Meal prep/clean up
    b. Watching the boys
    c. 5 minute cleaning of the camper each day
3. Plus there are items on my camping "to do" list which rarely get included in a day at home:
    a.  Take a hike
    b. Go to the beach
    c. Get ice cream
    d. Read a book
    e. Watch a movie
    f. Take a nap
    g. Play a card/board game
                Notice that absent from this list is laundry, whole house pick up,                         yardwork (for Andrew), errands, therapy appointments, and book                         work.
4. Nobody cares what you look like when you are camping!
5. Falling to sleep with nature sounds surrounding you on all sides of the camper is really cozy!
6. The boys love camping, and it's fun to watch them have an activity they love and are good at.
7. I'm quite spoiled being able to camp in our nice camper instead of a tent. 
8. When I get home, my normal house seems like a palace. 
9. Hiking and biking are good healthy activities for all of us. 
10.  Good reminder of God’s glory and majesty as I enjoy the beauty of His creation. 

Here's to another summer of hopefully great camping memories!