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.

LOVE YOUR NEIGHBOR CAMPING VERSION

When you camp, you never know who will end up being your neighbor.  So far, in all our camping over the years, we have always met very nice people at the campground.

Yesterday was no exception to that.

The past few days, we have been camping with another family.  When we camp with them, we decide to "hover" a bit less when our boys want to explore the campground by hiking or biking because this family has boys the same age as ours.  And one of their boys has Down syndrome so what better leader could there be? :) 

So yesterday the gang took off to bike around the campground.  

Ben came back early to give us reports on what the other bikers were up to.  His first report was that Jonah was lost, however, when I got up to look, Jonah was biking right past our campsite.  Second, Ben reported Jonah was bleeding which again turned out to be a false report.  Ben's third attempt to create drama and prevent me from sitting down and relaxing was that Jonah hit a car.  However, when I got up to check, Jonah was pedaling his bike towards me looking perfectly fine.  

When Jonah returned to the campsite a few minutes later, he came up to me breathing heavy and wanted to tell me something.  Jonah tends to be dramatic so I told him he had to wait until I finished the conversation with my fellow camping mom.  

He asked me to follow him, and he was saying something that sounded like "I hit a post".  When we walked out onto the road I did see a small post along side the road.  I asked him if he hit that.  He shook his head emphatically and said, "I hit a bush".  My response was, "You hit a bush?"  

At this point a woman across the road was smiling and said, "He actually did.  My husband had to pull him out the bush by our campsite."  

I looked towards where she was motioning and finally figured out what happened.  When Ben reported Jonah hit a car, he was probably trying to say that Jonah almost hit this couple's parked car.  To avoid it, he rode his bike into the bush. When I went to check on him after Ben's report (which lacked a few crucial details), Jonah had already been rescued and was his way back to tell me of his bush adventure. 

I told the woman to thank her husband for his rescue.  It's probably a sight they don't see often- boy on a bike caught in a bush- but with our boys, anything is possible, right?

So what is the moral of this story?  As the Bible says, "Love your neighbor as yourself".  The camping version of that is if you see someone stuck in a bush in your campsite, pull him out!  His parents will greatly appreciate it!

NEAT IDEA FOR ADULTS WITH SPECIAL NEEDS

Milwaukee area organization is hoping to develop a housing community that would include adults with special needs surrounded by neighbors who can support and encourage them in their independence:

VISION

Provide independent apartments and community homes within a supportive wraparound neighborhood where adults with autism and others with similar intellectual & developmental disabilities have purpose through living and engaging with others. 

Click HERE for Crocus Website

LIFETIME PARENTING

 

When we were thinking about adopting a child with special needs (over 15 years ago now!), one thing some people mentioned to us was that it would mean lifetime parenting.  

Yes, because our boys both have Down syndrome, we will most likely be involved in most aspects of their personal lives for the rest of our lives.  This can feel overwhelming at times for many reasons: lack of our own personal freedom in our older years but also worries about who will care for our kiddos when we are gone.

It's true these concerns are not present with our kids without special needs.  With typical adult children, they can manage their lives on their own with parents playing the role of advisor and encourager. 

At least that's what our older kids think.  They think we as parents can just calmly sit back and watch our kiddos embark on life on their own with no worries or concerns on our part because our job as their primary caretaker is now over.

No. Way.  Yes, that's how we try to present, but realistically most parents of older kids have to work really hard to let go, step back, and not have an anxiety attack-haha.  

In other words, I think all parents are lifetime parents because we never stop loving and caring about our kids no matter how old they are.  

This week I was bombarded with some great resources about parenting older kids which I would like to share:

Click HERE for "Trusting God with your Adult Child" from Focus on the Family

Post I came across on Facebook:

BOY MOMS Someone shared this with me and i knew i needed to share it with you. No truer words. Deep breath. Here we go. You always hear about a girl’s daddy “giving his daughter away” on her wedding day. I had never thought much about the mommas and their sons. But y’all mommas give away something too. Something just as precious. Something I knew I would never get back. I gave away being the one he hugs and kisses I gave away being the one he looks for in a crowd I gave away being the first person he turns to when things get tough I gave away being the one he makes laugh in the middle of day I gave away being his number one girl I gave away a piece of my heart I gave away my son Deep down I know he will always love me but I also know he loves her more. He loves her more than his momma and that’s ok. That’s how I knew he had found the one. But isn’t that what we want? We want them to marry a girl who they will put first even if it means we become second. Mommas, Love him while you are still first Kiss his sweet baby face and linger in those lanky teenage hugs Drive him to school even when he is grumpy and doesn’t say a word to you Listen when he needs to vent and blow off steam Love on his friends Bring the motrin to school for the 100 thousandth time. He may have a headache OR he may just want to get out of class and chat with you for a minute. Sit next to his hospital bed even though he screwed up Soak up every minute under those Friday night lights. Love him, forgive him and forgive yourself for the things you didn’t get right Because one day, you will give him away.... You will stand and watch him give his heart to the love of his life. You will dance and he will say the sweetest things about who he has become because of you. He will hug you tight and it will feel a little bit like a goodbye. You will become his second best girl and it will be so dang HARD. Author: Alyssa Becnel

So in the end, I believe there is the challenge of lifetime parenting for all of our kids.  It just looks a little different depending on the kiddo:

1. Special Needs: they will always need me but I might not always be there for them

2. Typical: they will not always need me but it's hard to not always be there for them

LET IT BE

At the beginning of the 2nd semester, Jonah, on his own, composed a note to his choir teacher asking her if the choir could sing a Beatles song.  

She very nicely agreed!  

At the spring concert the other week, the combined 7th-12th grade choirs along with the audience performed "Let It Be".  

Jonah, who can get stage fright, powered through his nerves and started singing a few moments into the song.  

Ben, who either also gets stage fright or just doesn't like to sing :), was impressive because he sang through the entire song.  Good job, Ben!

And now without further ado...