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JONAH'S HEALTH HISTORY

Thursday, December 21, 2023

CHRISTMAS CHECKLIST



With only four days to go, we are actually doing ok on our to-dos.

1. Christmas presents bought and wrapped

2. Christmas cookies baked and hidden

3. Christmas menu planned 
(Beef bourguignon, Persian food night, hot chocolate pie, possibly a rum cake...)

3. Christmas activities planned 
(Breakfast with Santa, Dude Perfect trick shots, surprise game from Stephen, 
King Tut exhibit...)

4. Christmas story time- We have read about the angel coming to Mary and Joseph, baby Jesus being born, angels visiting the shepherds, and shepherds visiting Jesus.  What we have we have left to read yet is baby Jesus at the temple and the wisemen visiting little Jesus.  What is neat this year is the boys can read a sentence or two for us from from the Adventure Bible!
The boys know the facts of the Christmas story, but we are having a hard time helping them learn the significance of what Jesus' coming means for us all.  I guess the world in general struggles with that lesson...  

5. Some of us sick with a cold, but not all of us so that's good.

Some recent photos
  
Jonah confessed he was joking about feeling sick this morning.  
He said he needed a day off from school.  
So we are making the best of it and watching a "Muppet Christmas Carol" :)

Christmas sweater day at school yesterday
Yes, their sweaters light up!

Grinch Day on Tuesday
Boys dressed identical to their principal!






 

Friday, November 17, 2023

LET'S TALK

 


With both boys "graduating" from outside speech therapy (they will still have speech therapy thru the school), I thought it would be helpful for me to sum up where each of them are at with their speech skills.

This is written in my "mom terminology" and not official therapy words.

1. SPEECH SOUNDS
Both boys have mastered most of the speech sounds which is one of the reasons they have been discharged.  There is still room for improvement because they have trouble sometimes pronouncing those sounds within a word.  For instance, Ben can say the "d" sound, but then he pronounces dog as "gog".  

2. ABILITY TO BE UNDERSTOOD BY OTHERS
This has improved greatly for both boys from where we were 2 years ago!  At this point, Ben is probably more easily understood than Jonah.  Ben's biggest drawback from being understood is sometimes Ben speaks too fast or mumbles which can make it hard to understand his words.  I think what hinders Jonah from being understood at times is he has such big ideas that the words needed to express those ideas can be pretty complex.  Both boys use their speech device, writing, or sign language to help be better understood. 
  
3. RESPONSIVE SPEECH
When asked a question, Jonah does a good job of answering as long as he is paying attention.  Keeping Jonah focused and engaged during a conversation is his biggest challenge.  For Ben, answering a question can be very difficult because of his social anxiety and control issues.  He likes to give a silly answer or not respond at all.  What works best for both boys is to give them choices rather than just open-ended questions.  For example, "Would you like juice or milk?" instead of "What would you like to drink?"  I tend to limit to 2 choices, although it would be interesting to see how 3 or 4 choices would work.
  
4. COMMUNICATING NEEDS, WANTS, IDEAS
With our immediate family, most of the time, we can understand what they boys are asking for or trying to tell us.  Between their speech, writing, sign language, and speech device, the code is usually cracked with relative ease.  However, when we can't figure out what they are saying, the boys- especially Jonah- can get very frustrated and exasperated with us.  Which I totally understand...
  
5. SOCIAL SKILLS
Jonah, unless upset/tired/sick, generally knows how to interact with others appropriately and quite politely.  
As I have discussed many times before, Ben really struggles with interacting with others because of social anxiety and control issues.  However, there have been a few instances in the past few weeks where he has really impressed me with some great social skills.  So he can do it, just not on a consistent basis.

6. SPEECH DEVICE
At this point the speech device is used by both boys for the following reasons:
    a. Clarify what they are saying if we can't understand them
    b. Answer questions or give information that is too complex for their speech ability- for example in Sunday School, they can use the device to answer questions about the Bible story.  Or for show-and-tell, they use the device to tell about something happened over the weekend for example. This is especially helpful for Ben when his social anxiety makes him uncomfortable using his words.  
    c. Help the boys with their writing- they can use it to generate ideas and for proper spelling of words.

7. NEED FOR AN INTERPRETER
In an ideal world, the speech device should be the interpreter for the boys.  If someone can't understand them, they should be able to find the word on the device and let it speak for them.  However, there are some limitations to the device being 100% successful:
    a. Boys' ability to use device.  Sometimes they can't find the word they want or they get sidetracked by other words on the device and lose their train of thought.
    b. For people unfamiliar/uncomfortable with the device, it isn't very helpful to try and use it with them.  The success of the device truly depends on the communication partner's willingness to "listen" to it.

For these reasons, I feel like someone in the boys' inner circle has to be around to help them be understood.  This is what is probably most concerning to me because it's unrealistic to think we can always be there to interpret.  Plus at some point, as the boys get older, I'm guessing they are not going to want someone at their side (especially mom) talking for them.  How do you give them the independence they will want someday knowing there is the risk of them being misunderstood or not listened to if there's no one there to support them?  

***********************************************
All of this explains why the boys will continue to have speech therapy thru the school, and why we will continue to work diligently with them at home and also always be on the lookout for other resources to continue to move them forward in their speech.  Yes, they have come a long way and we are VERY proud of them.  But there is still more work to be done.  They have a voice and they deserve to be heard!

One resource I have recently found is Outschool.  Outschool offers online classes and one-on-one teaching in a variety of subjects.  For Ben, he has just completed 4 weeks of a one-on-one social skills class which has been amazing!  At the end of the month, he will join a group class on social skills.  The teacher for both of these classes gears his material for kiddos with autism.  I feel comfortable with Ben being online for class because I am right there observing and assisting Ben when needed.  In December I am going to try Outschool's one-on-one voice lessons for Jonah since his voice teacher from the past 2 years had to move out-of-state.  We started voice lessons with Jonah because we thought it would be a fun way to get him to work on his pronunciation/speech skills while doing something he loves- singing!  It has been a great experience.  We really think the voice lessons have contributed to his big jump in being verbal over the past 2 years!





Wednesday, November 8, 2023

THAT’S A WRAP




JONAH

13 years, approximately 50 weeks a year = 650 weeks

650 weeks, approximately 1 hour /week = 650 hours

BEN

6 years, approximately 50 weeks a year = 300 weeks

300 weeks, approximately 1 hour/week = 300 hours

So the two of them together have had 950 hours of speech therapy over the past 13 years!

That's a lot of hard work these two boys have put in learning how to communicate better.

We are so proud of them that today they graduated from speech therapy besides what they will continue to receive through school.

Jonah started with speech/feeding therapy at 3 weeks old.  Ben started his speech therapy in the fall of 2016, shortly after he arrived in the US.  

Now that season of life is done.  It's been an incredible adventure.  We've been blessed with an incredible speech therapist over these years.  We are truly blessed in all the help and resources available for our boys.



 


Tuesday, November 7, 2023

WHERE'S THE BABY?

 

Jonah takes things very literally.

The first time Jonah met Eric, he started to talk about them getting married.

As they were dating and then engaged, he started talking about them having a baby.

Our response to his frequent baby requests was "First they need to get married."

So Sunday, at the gift opening, Jonah greeted our guests of honor at the door with a question of "Baby?" and a gift bag containing a note that said baby and a pull-up.  

Makes sense if you think of it literally- we said after they got married.  Sunday was the day after the big event.  So yeah, where's the baby?







Sunday, November 5, 2023

Finally Honored



My 91 year old dad got to go on the Honor Flight this weekend.  My dad is a Korean War Vet.  So proud and so grateful for his service!

VIDEO of ALL PHOTOS is found below!


 



what it's about, how to apply, how to volunteer, how to donate

My parents married in 1953.  Before that, he went over to serve in Korea.  This is the goodbye photo when his sister, mom, and my mom brought him to Chicago where he started his journey to Korea.  They all look very sad.  What a sacrifice service to our country is for not only the soldier but his loved ones as well. 

THEY TIED THE KNOT!



Our oldest daughter Abigail got married to Eric this weekend. It was such a fun and special celebration!

Their love for each other and their love for Christ was very evident in the ceremony and during the speeches given at the dinner.  

We are so happy to see how the Lord moves and works in their life together in the many years ahead!

On a side note, the boys were very well behaved for all the activities during this busy wedding weekend.  But they also had so much fun!  We were so proud of them!

We were very blessed that were able to have 2 “Nannies” for our boys for the wedding.  These girls were so helpful and able to entertain our boys so that we could focus on our daughter for her special day.  

The other side note is how sweet it was to hear from many people at the wedding how much they admire our 3 older kids.  Those 3 kids have always been so kind and loving and willing to jump in and help their younger brothers.  We as parents are very grateful for that love and devotion and it truly warms our hearts.  

Now time to celebrate!

VIDEOS of the PHOTOS below!

Our two beautiful girls

Here comes the bride

Mr and Mrs 



Can’t imagine what this conversation was about!

LONG Wedding Video- 5 min

Short Wedding Slide Show 11-4-23

One more compilation of our own photos with a few from photographer

Boys first time on the dance floor- they were ready!

Because I was feeling nostalgic from Abigail's wedding weekend, I put this together of our wedding memories from March 1994.

Now some interesting repeating of history:

 
Abigail with her brothers who haveDS                        My mom with her younger                                                                                      sister Audrey who had DS

 
My wedding dress and veil                    My Grandma in her wedding dress and veil
                                                                I never realized how similar my veil and     
                                                                dress were to my Grandma's.  Both dresses 
                                                                were tea-length.














Tuesday, October 31, 2023

SPOOKY HALLOWEEN SKY



Tonight at 5:30, after some heavy snow showers, this unusual and stunning sky appeared!  Please note, these photos are facing EAST but it looks like a sunrise or sunset.

Thursday, October 26, 2023

NINE DAYS TO GO!

Our oldest daughter's wedding is in 9 days!

Oh my goodness.  

We are so excited and happy 

for this special day!  

We love you Abigail and Eric!






CONGRATS TO OUR GUYS!

Yesterday was a big day for our two guys.

1. BEN: I had an amazing IEP meeting yesterday for Ben.  The reports I got from his teachers and speech therapist is that Ben is a very hard worker and very determined to get the work done!  He is very smart and is moving ahead in his reading, writing, and math.  He is responsible and quite self-independent.  He is also being socially appropriate most times at school.  It seems like Ben's use of his speech device has been a great help for him in communicating when he is nervous or can't pronounce the complex words he want to say.  That's wonderful to hear! And it seems like people at school really enjoy having Ben around.  We are so proud of Ben!!!!

Ben also got discharged from occupational therapy at school after 7 years!  His handwriting (not his grip, haha- still painful to watch) has greatly improved and his keyboarding skills (hunt and peck) are continuing to move forward.

2. JONAH: Jonah got discharged from outside physical therapy after 2 years of working on his walking (toes pointed in) and his overall core/leg strength to help with his "slippery" knee caps.  Because no amount of therapy will be able to correct his knee caps, we are at the point where he has gotten very strong in his muscles and hopefully with that increased strength plus his knee braces, his knees will be safe.  

SPOILER ALERT: it's looking like boys will also be discharging from outside speech therapy soon.  This one is going to be very hard for me because, especially Jonah, has been in speech therapy since 3 weeks old- that's 13 years at Rehab Resources!  They are like family.  Of course, it's a blessing to not need therapy anymore, but it's always hard to end the connections you make with your wonderful therapists.  I will be meeting with our outside speech therapist in a few weeks to discuss discharge, but school gave me the green light that they agree the boys are ready to only get speech support thru school at this point.

We celebrated the boys' accomplishments yesterday by- you guessed it- Culvers!-and also a donut for Ben.  Of course, right?

Please look at the way Ben grips a pencil.  Because Ben did not have any occupational therapy during his 1st six years of living in the orphanage, he never learned the proper way to grip a pencil.  The occupational therapist at school worked YEARS (2016 to 2021) to try and correct his grip.  Slide-on grippers on his pencils work, but using those 100% of the time on all of his options for writing utensils isn't realistic.  What we finally decided as a team is to just let him hold his pencil however he wants.  Surprising, oer the years, His handwriting has been become quite legible.  Plus the other concern with improper grips like Ben's is it will cause the kiddo to have hand fatigue after writing for long periods of time.  However, Ben's writing capacity is probably 2-3 sentences at the most.  And any longer writing sessions would probably be something that he would be encouraged to type on a keyboard so fatigue is not really a concern.  

It is not a pretty grip to observe, but it gets the job done!

Jonah saying good-bye 
to his physical therapist.



Thursday, October 19, 2023

THEY'RE LOSING SOCKS AND I'M LOSING MY COOL


    

 

Just need to vent.

When you have two boys who

1. Live in the moment

2. Live to have fun all the time

3. Don't have a concept of time to help you understand a few hours ago

4. Have an active imagination

5. Have a hard time with the concept of telling the truth

It makes losing things very frustrating...

Our boys are usually absolutely NO HELP in trying to find something they lost.  They look in the most obscure places- like when looking for a shoe, they lift up one of our table lamps!  Not much help.

They also answer yes to every question you ask them in trying to figure out where the missing item must be:

"Is it at school?  YES.  "Is it in the car?"  YES  "Is it in Antartica?"  YES.    

Every once in a great while, the stars align, and one of them will immediately know where something is, and thank goodness, because it's usually in the most unexpected place- like a DVD inside our piano or a placemat in our fireplace vent!

Lately they have been misplacing socks.  This is because when Jonah gets undressed he has the horrible habit of just throwing his dirty clothes anywhere but the hamper.  I have found shirts hanging from the bathroom cabinet and pjs in the bathtub.  I am working very hard to get him to nicely put his things in the hamper, but please note I am not only battling mischeviousness but also some OCD tendencies.  For Ben, he frequently gets hot so he will just toss his socks wherever he is when he gets his hot flash- I actually can relate to that...haha.

Now lost socks have been a plague of humanity since the beginning of time or sock-wearing at least.  We all have the unexplained of phenomena of a sock that goes in the dryer but doesn't come out- it's the magic trick you never wanted to work.  While it's weird and slightly annoying dealing with these MIA socks, it's never been something that made me grit my teeth in frustration.

But the boys' losing socks is a different matter.  Because when no-show socks slide right off your feet and you don't have the dexterity to manipulate a crew sock over your heel and up, meaning your mom has to help you put on socks but you offer absolutely no help with your foot/leg to help get that sock on, finding and keeping the easiest socks in the world to get on is very important to us!  So losing some of these "miracle" socks really bugs me.  Over reaction on my part- probably, but somewhat justified, right?

For those of you in my age group, does my quest for the perfect sock at all bring up Seinfeld's Mr. Pitt and his sock drama?  SEE BELOW!

To top it off, we are currently trying to find Ben's glasses.  Usually Ben is very careful with his things, beside socks.  This isn't quite is MO to lose something so important.  I'm suspecting his little brother may have played a role in this...  

The problem is when I asked Ben where they were he said his teacher took them (LIE).  He also looked in his sock (oh, the irony!) for the glasses (NOT A HELP).  

* UPDATE: Ben's glasses were found late yesterday afternoon.  They were actually in a very logical and expected place: next to his computer at school that he uses during his gaming club on Wednesdays after school.  I guess we overthought the possibilities of where they might be and overlooked the simple- our boys keep us on our toes.  Plus, the little brother had nothing to do with the disappearance- I'm sorry we wrongfully suspected him.

“Hold everything in your hands lightly, otherwise it hurts when God pries your fingers open.”- Corrie Ten Boom

I guess the boys are trying to teach me a very important life lesson.  And it's only socks, and glasses, and shoes, and books, and DVDs, etc- haha.

Of course, they are awfully cute!

Click HERE for Seinfeld "Mr. Pitt's Socks" video

I'm not sure if I'm Elaine or Mr. Pitt...

Sunday, October 8, 2023

Thursday, September 28, 2023

THREE STRIKES and YOU'RE OUT

 

Jonah had strep throat in February 2023 as explained above.  He also had strep throat in June 2023.  Now he just finishing up a 10-day regimen of antibiotics after testing for strep on 9-20-23.  The standard of care is after 3 "strikes" in short period of time, you get referred to ENT.  

Our ENT has since retired since last seeing him in May 2020. Jonah was dismissed from his care when his ear infections stopped when Jonah was home quite a bit because of Covid shut downs and then Jonah's kidney/bladder issues- unexpected blessing.  

So in December we see a new ENT.

TIME TO CATCH UP

:

How are we already almost done with the month of September?!
Time flies when you are busy having fun.


One of Jonah's favorite movies continues to be Home Alone.

In early September, we visited Stephen at Loyola in Chicago and made a stop at the ACTUAL Home Alone house in Winnetka, IL.  Jonah was beyond thrilled!

The boys got to experience true Chicago by riding the bus and the 
elevated train from Loyola to Lincoln Park Zoo.  

Then on 9-16, Lydia and I hosted Abigail's bridal shower for my family and her friends.  It was coffee themed- "Love is brewing".  What a fun and special day!

My beautiful girls!  I love them so much.

After the shower, Lydia continued the festivities by hosting a bachelorette party.

Then last week we sent the boys off to school each day and were able to relax at our campsite at Harrington Beach State Park.  On this day, we spent the morning in beautiful Port Washington, enjoying breakfast, coffee, croissants, and the lake.  
So much fun!  
We don't get many dates so we were very excitedto have this time to ourselves.  
Note: our first day "alone" 
Jonah was with us because he came down with strep throat :(