BIG AWARD FOR BEN!

 

Each quarter the MS teachers choose one student in each of class for an RRK reward- this stands for Respect, Responsibility and Kindness.

Our Ben won the award for his Social Studies class!

We are so proud of Ben because we are hearing from his teachers that he is very socially appropriate in his classes with his peers.  So to win an award because of this outstanding behavior is such an accomplishment for him.

Ben has social anxiety: He's uncomfortable with interactions because his first 6 years of life lacked social interactions both for him to model and to participate in.  Plus Ben likes to be in control so someone asking him something takes control of the situation away from him and gives it to the person requesting information from Ben.  This makes Ben nervous.  

So for him to overcome this anxiety and participate appropriately in a large classroom setting where some of the material being discussed is beyond his understanding is AMAZING to say the least!

Way. To. Go. Ben!

Also, I am understanding somethings about Ben's social anxiety.  For the longest time, I felt like I was his trigger because a lot of his strange and inappropriate social behaviors happens only with me.  

However, his teachers helped me understand something.  They think Ben is very concerned and in tune with wanting to be accepted and fit in with his peers.  This isn't in a bad way in terms of peer pressure, but in the good way as in this awareness helps us all choose appropriate behavior.  He's learning the skill of reading the room- a very useful life skill!  

So Ben knows to keep his social quirks and oddities to a minimum at school because as he tries to model his peers, he realizes those peers are answering questions in class, raising their hands participate, and having conversations that make sense and stay on topic.  He wants to look and sound like the other kids. 

With me, or in group of adults only, Ben probably doesn't care as much about fitting in and/or doesn't care if we are not pleased with him.  And at age 14, it's very normal for a kid to be more concerned about what his peers think of him than what grown ups think.

This made me feel better because I was feeling like I was the SOLE cause of his social anxiety, but now I'm thinking I'm just ONE of the causes.  

If you're curious, the reason I'm one of the causes of Ben's social anxiety is: 

Ben views my role in his life, his primary caregiver, as a threat to his need for control.  So any demand I make on him, including social interactions, he tends to not do as requested as a way of him maintaining control. 

WHAT IS THE PLAN?

Because Jonah's medical stuff can get confusing, I will try to summarize what our plan is for treating his severe sleep apnea. 

In January 2024, Jonah's sleep study showed severe sleep apnea because he stopped breathing 32 times per hour.  His prior 2 sleep studies showed mild to no sleep apnea.   

First, Sleep Apnea Guidelines Adults vs Children:

From John Hopkins Medicine:  In adults, Severe obstructive sleep apnea means that your AHI is greater than 30. You have more than 30 episodes per hour. Moderate obstructive sleep apnea means that your AHI is between 15 and 30. Mild obstructive sleep apnea means that your AHI is between 5 and 15.  Normal sleep means that your AHI is less than five.

From NCBI Website: In pediatric obstructive sleep apnea...An AHI score of 1 to 4.9 events/hour is mild OSA, 5 to 9.9 events/hour is moderate, and more than 9 events/hour is severe

Second, why is it so important to treat severe sleep apnea in a child with Down syndrome?

In general, for all people whether they have DS or not:

Obstructive sleep apnea is a prevalent condition wherein the upper airway becomes blocked repeatedly during sleep, leading to disrupted airflow due to muscle relaxation around the tongue and throat. This condition affects over 18 million individuals, amplifying the likelihood of heart attack, stroke, high blood pressure and related complications.

Taken from Tampa General Hospital article linked below.

Specifically for children and adults with DS:

If the individual is a child, they might: 

• Have tantrums.
• Be less willing to use words to communicate.
• Have trouble learning new skills.

An adult may: 

• Refuse to participate in normal activities.
• Be less willing to engage in conversations.
• Forget parts of their usual routine.
• Have difficulty following directions.   
• 
  
• Taken from NDSS article linked below

Third, what have we done so far to treat Jonah's severe sleep apnea?

1. Removal of tonsils.  This was actually done for two reasons: 1) constant strep throat 2) very enlarged tonsils which can be A FACTOR (not generally the sole cause) in severe sleep apnea.

2. After Jonah's tonsils were removed, another sleep study was done.  While he is still considered to have severe sleep apnea, he went from 32 events per hour to 19 events per hour.  So removing the tonsils definitely helped but didn't stop the sleep apnea.  

3. During Jonah's tonsil surgery, the ENT Dr discovered that Jonah has choanal atresia which is a bone blocking his right nasal passage.  Since this can affect his ability to breath properly both while awake and asleep, the next step was to make a opening thru this bone blockage.  This repair surgery was done yesterday.

4.  After Jonah recovers from this surgery, he will have another sleep study to see if this opened airway makes any improvement in his sleep apnea scores. Doctor is thinking there will be some improvement from the score of 19, but it doesn't seem like he is confident Jonah will move out of the severe apnea range even with this repair surgery. 

Fourth, what happens if Jonah's sleep apnea score continues be to 10 or above?

1. Besides enlarged tonsils and this blocked airway, the biggest contributor to Jonah's sleep apnea is that his tongue flops back and blocks his airway.  This is why sleep apnea is very common in people with DS because of larger tongue and floppier muscles.  

2. A CPAP device can prevent the tongue from flopping backwards.  However, the doctor doesn't think this is a good option for Jonah because:

a. The amount of air flow needed to prevent severe apnea would have to be very high and could be very uncomfortable/intense to deal with.

b. CPAP devices are not easy to deal with for anyone, but especially for an individual with DS who may have sensory issues and then also not be able to cognitively understand why he is being subjected to this.

3. That is why the ENT doctor thinks Jonah would be a great candidate for a new treatment available to kiddos over age 13 with DS: the Inspire implant currently being offered to the general adult population.  

4. So while this idea is way down the road and only a possibility if Jonah's next sleep study continues to show severe sleep apnea, this is option is part of the plan going forward.  

Click HERE for Tampa General Hospital article explaining the Inspire implant for kiddos with DS

Click HERE for National Down Syndrome Society article about sleep apnea

BEN'S ANNUAL IEP

 

Last week I participated in another great IEP for Ben!

Over the many years of doing this annual "thing", I have never had a bad experience.  I am grateful for this because I think the experience in other school districts can sometimes be very difficult and full of tension.

But even this year, with a new special ed teacher AND having to think about transition to high school next year, I felt very comfortable with everything that was proposed for Ben in this next 12 mths.

In a nutshell, what will being happening in the next 12 mths is switching from strict academic goals to what academic goals do we need to help with life and job skills?  For example, this means math is now calculator focused instead of actually having Ben do the adding, subtracting, etc.  Handwriting is switching to typing skills.  Reading skills will continue but at a functional level versus trying to obtain a certain grade level of reading.  And reading comprehension will be the big push for Ben in order for him to understand work instructions, work emails etc or enjoy a good audio book.  

The attitude from his team is very much "We will try this and if it doesn't work, we will make adjustments to make it best for Ben."  I love that!

Now having said all that, I will admit I am nervous about high school for both the boys.  It is a more independent environment- it is very likely the boys will no longer have a 2 for 1 aide with them all the time.

This means all accomodations in the regular classroom will have to be done by each individual teacher with the help of the HS special ed teacher.  This means a LOT more people to work with and make sure everyone is on the same page for EACH boy as an individual.  That's a lot to ask of a lot of people.  That makes me nervous.

I am also concerned how to determine the line between having the boys spend almost their entire day in the typical classes in HS vs working on life/job skills with the special ed teacher.  But I have to trust the team will always be willing to make adjustments as we go along to figure out what is best for the boys.

Now just a few thoughts about the eighth grade year for the boys.

For grades 4K-7th, the boys spent most their time in the special ed room.  They would only join their typical peers for art, music, gym, lunch, at in MS homeroom.  I really liked this setup because I felt the boys learned best in a smaller more adaptive environment of the special ed room.  I wasn't a "have to include" parent. I believe whatever is best for each child is the best approach. 

Before I knew about a new teacher taking over, I assumed this would be the plan for 8th grade and the big jump to spending more time in the typical classes would start in HS.

However, the new teacher had the idea that we start working on that transition during eighth grade where the boys would still have the help of their 2 on 1 aide and where the MS school layout is smaller and less intimidating than HS layout.  

What I'm finding out is this roll-out transition plan seems like a great idea.  However, I think the old way would have had great points too, mainly being one more year with very specialized instruction for almost 6 hours a day.  Since both ways have merit, I think our boys would be a good place with either approach. 

Being flexible is certainly something you need as a special ed parent!

How cool that our boys are in a situation where both Plan A or Plan B offer them cool opportunities and possibilities.  We feel truly blessed by our school system!

WOW!

 

We are very blessed to have lots of "WOW" moments with our boys.  

And these past few days have certainly provided us with some great ones!

At Jonah's football game on Saturday, he got to be one of the team captains.  Then he made is usual halftime touchdown.  However, we were in for a surprise- that's wasn't the end of his participation in the game.

The last 30 seconds, the other team announced they would just take a knee for their last downs because their lead over us was quite substantial.  Unexpectedly, Jonah's coach called for Jonah to go in as a nose tackle on defense.  This was the first time Jonah ever played in the actual game!!!!

Jonah went in and did great tackles (haha) on several players.  Then Jonah, for whatever reasons motivate Jonah's ideas, decided to make a run for the end zone even though he didn't have the ball.  He scored a "ball-less" touchdown if that's even a thing- I'm guessing not.  He got to our end zone and proceeded to do his touchdown dance, which our game announcer has named "The Lavey Wavey"!

How fun but also inspirational to see Jonah embrace life and live out his dream of being on a football team!  How fun to see that you can achieve your goals even if you don't have everything you need- like a football in your hands...

Then at Jonah's Tuesday football practice, his coach mentioned that he thinks it might be possible for Jonah to be on the High School football team next year!  We weren't sure if this would be a possibility, but it sounds like it could be...

Now on to parent-teacher conferences.  I had the privilege of sitting and listening to the boys' homeroom teacher, spec ed teacher, and speech therapist tell me how great the boys are doing in school so far!  I was blown away by how hard they are working and how appropriate they are acting.  This year there have been some big changes for them: new teachers and a new schedule where they push in for science, social studies, and language arts.  But they are crushing it.  

 

In fact, Ben is actually excelling even more than Jonah.  Ben is always a hard worker, Jonah sometimes loses focus or says he's tired.  That is usually the way things roll at school.  But the unexpected was this: at school, Ben is more outgoing and social (what?????) compared to Jonah who is more shy and reserved (what????).  

I am so proud of both the boys, but I'm especially proud of Ben because I know how hard social situations are for him.  Yet he is making an effort (yes, it might be his charming tendency but we'll take what we can for school) to really act appropriately at school- good for him!

The other place Ben has really been rocking it is at Sunday School.  This year we decided to split the boys up.  Jonah is with his peers in the 5-8th grade class.  Ben is with the 3-4th grade class.  We thought it would be nice to give the boys a break from each other and see how they do.  I help in Ben's room and I'm observing amazing social behavior on his part!   

Anways, to explain the above photo, in the beginning of each class, the kids get to play with Legos which Ben really enjoys.  So after a little convincing, Stephen and Andrew parted with a few of their Lego collections and let Ben play with them at home.  He loved it.  It's a good activity for him while we watch the Packers game each Sunday! Jonah, of course, has to watch the game because that's his next goal- to be a Green Bay Packer!

FALL UPDATE

 

Hard to believe we are already 

one month into the school year! 

Here's what's been happening:

1. School seems to be going quite smoothly despite the fact the boys do not have the same special ed teacher they had for the past 6 years.  We are very grateful that they have special ed aides that returned from last year as well as their speech teacher.  And the new special ed teacher was an awesome sub for them many times over the years so we know her and feel comfortable with her.  She is doing a great job in her new role!  

2. Ben participates in Special Olympics bowling and loves it.  His first game each week tends to have lots of gutter balls.  Then by the time the 2nd game rolls around, he figures out how to throw his bowl and he ends up with a score between 60-80 for the game.  He loves being independent during this activity- I try to sit off in the background and just let him maneuver and figure out best he can.  I think he likes having an activity that is just his own, not one he shares with his brother Jonah.

3. Jonah is loving being on the school football team.  It's the same format as last year.  Jonah attends 30-45 min of practice/2x week and then makes his touchdown run at the beginning of half time each game.  So this kid has awesome scoring stats!  As was the case last year, we are amazed and so happy for the coaches' and teammates' excitement and willingness to help Jonah be on this team.

4. Ben has his annual IEP meeting in a few weeks.  This one will be a bit more involved because Ben is now 14 so we have to start talking about transitioning to high school as well as the emphasis switch to job/living skills vs academic skills.  How did we get here so fast, right?

5. On 10-29, Jonah has nasal surgery to correct the blockage on his right side.  Expected recovery is 3-4 days so hopefully this all goes 

nice and smoothly for him (and us 👀 ) 

6. Fall camping is coming to a close.  "Boys only" weekend coming up and then our last time for all four of us in 2024 is at the end of October- 

again, how did we get here so fast, right? 

Below is a photo from our camping at Kohler-Andrae State Park in mid-September.  We had beautiful warm weather so, yes that is Jonah swimming in Lake Michigan in September!  Ben just waded in the water.  It was a fun week!

GOLDEN BOY JONAH

For those familiar with the popular YouTubers “Dude perfect”- you’ll understand the golden boy reference…otherwise just know that today was Jonah’s birthday, and it was extra special because he turned 14 on the 14th!

Could he wake up any happier for his birthday?

Jonah aka Paul McCartney singing the Beatles Birthday Song- 

please note, this is at 6:15 am this morning in our bed :)

Gift opening: shark shirt, Culver's shirt, TWO Beatles shirts, Beatles costume, Beatles Uno game, Beatles Little People set, tickets to Mary Poppins play, and a Culvers gift card.  What more could a boy ask for?

And Beatles birthday cake for the boy who doesn't EVER eat cake 

but still loves having cake at his party.  

We even had more than 2 candles in the house this time- 14 candles to be exact!

This guy is a joy to have in our family!  He has filled our lives with love, fun, and adventure since the moment we found out he was coming.  

He has taught me so much in his fourteen years, mostly how to trust in the Lord even when things don't make sense and how to be grateful to God for even the little things of life.  

Jonah is excited over the big things of life- like a Beatles Cover Band concert.  However, he is also thrilled about the little things of life- like his dad grilling a burger for supper.  He lives and loves to the fullest!  

I can't wait to see what God has in store for this boy as he gets ready for high school and young adulthood- the sky is the limit!  

SO LONG SUMMER!

 

Another wild, crazy, fun and fast summer in the books!

School starts the day after Labor Day.

One final weekend to clean up from our past week of camping, hopefully swim in our pool one last time, and prepare the boys for school.

Here are a few glimpses of our summer adventures:

Free Beatles Cover Band concert at Manitowoc park

Another season of Miracle League

Sprucing up our latest lawn ornament 

(the windmill- not Lydia.  She's repainting some parts of it)

One of many Beatles campsite concerts

Very impressive sunset!

Golfing a 3 hole course with Stephen

One of many camping trips

Another season of Rocket football for Jonah.

For his special activity this summer/fall, 

Ben is participating in Special Olympics bowling.