AFTER 26 YEARS OF PARENTING, I AM STILL BEING PLAYED :(

The past few days, I've been noticing the mouthwash bottle for Ben (Jonah can't have mouthwash because he swallows it) is filled to the top so that when you open it, you have a major spill of mouthwash down the side of the bottle and onto the bathroom counter.  

Since Jonah is always doing "Home Alone" traps and tricks in the morning while getting ready, I figured he was the culprit.  So for the past few days, I have been scolding the kid to stop adding water to the mouthwash.  

But today it happened again.  So I confronted Jonah if he had been playing with the mouthwash again, and he confessed.  So he got scolded again.  I cleaned up the mess, and we continued on with getting both Ben and Jonah ready for the day, with me keeping a VERY close eye on Jonah so that he didn't do anything else mischievous.  

After the boys were at school, I went back into the bathroom to give it my daily wipe down clean.  I noticed the mouthwash bottle was filled to the top again.  It was then I realized my culprit was not Jonah (because I had my eye on him since cleaning up the 1st mess this morning), but rather my culprit was Ben- who I had not watched closely after cleaning up the first mess.  

Which means for these past few days, Ben has been sitting smugly and watching his brother take the rap for something that he was guilty of...

Well played Ben, well played.  After 26 years, I can still be fooled.  You'd think my accuracy level would be at 100% after all these years, but I still goof up.

Sad that Jonah confessed to something he didn't do- that's a whole other rabbit hole to think about I guess.

Oh well, today after school I will have an interesting conversation with Ben.  I wonder what is reaction will be when he finds out I figured out his deception...

These boys keep me on my toes!

A GREAT MOTHER'S DAY

 Andrew did an amazing job of getting all the kids around for a wonderful weekend together.  He also took us out to a delicious brunch and arranged to have a family photo session at the beach!  I have been wanting to update this family photo for years, and now it's finally been done!  

It was a great day- I felt very loved by my husband and kids.   This song pretty much sums help my feelings about every day as a mother!

And now for the photos:

From this, Summer 2011

To this, May 2024: now there's Ben!

And there's Eric!

FIRST SHOW OF THE SEASON

 Jonah’s plan for our camping this season is to perform a Beatles show at each campground.

First show of Jonah’s Beatles Cover Band Camping Tour in the books!

HE’S DREAMING!

 Jonah’s new favorite video!

Guess where he would like to visit?

THE SPECIAL PART OF SPECIAL EDUCATION!

I have the interesting perspective of parenting 3 typical-developing children and now parenting 2 children with Down syndrome.  Many things are the same, but there are, of course, many differences.  

One area that is a big difference is the unique bond we as a whole family have developed with our children's teachers and therapists.  

With my typical kids, I always had great relationships with their teachers and always felt teary at the end of the school year when it was time to say goodbye.  I have tremendous respect for all the teachers we've had for our kids over the years: their hard work and care and concern for all their students is greatly appreciated!  

However with my boys with special needs, here are some unique characteristics of the relationship that make the bond a little stronger and personal between us and their special education teachers/therapists:

1. Some of the boys teachers/therapists are with them for years.  It is usually never just a 9-12 month stretch.  This is great because it allows the teachers/therapists to get to know our boys and allows the boys to really form a trusting relationship with them.  But it also makes moving on even harder because it's the relationship has been over a longer period of time.

2. Often the boys' teachers/therapists have to know many details of our boys' lives from medical/health issues to behavioral/emotional issues to family situations since all of these things affect their learning and education.  There is really no staying on a surface level with the teachers/therapists of our kiddos with special needs.  It's a complete package.  Of course, when you share more personal information about your kids and family, you tend to feel closer to the people you share with.

3. I'm not saying I never needed help as a parent to my typical kids, but I know I need a lot more help with my boys with special needs.  I am always looking for advice on how to help them learn something or deal with a behavior or handle a particular situation.  I owe so much to the boys' teachers/therapists over the years for helping me figure out so many puzzling puzzles the boys presented.  Often times it feels like these professionals are co-parenting with us!

So for these reasons, the bond between our kiddos with special needs and their teachers/therapists is unique and strong.  These people feel like part of our family.  And because people who go into this area are compassionate and wonderful people, they go above and beyond it just being a "job".  It's a passion for them and they truly go out of their way and beyond the call of duty to help our kiddos.  

All that to say, anytime there has to be a transition or change in our child's "team", it's a heartbreaker for sure.  

My hope and prayer is that every teacher and therapist our boys have ever had will have always known how much he or she meant to our WHOLE FAMILY!  I have such incredible appreciation and gratitude to these wonderful people who make it their life's work to help our kiddos.  

They are truly the "special" in special education!

Interesting excerpt from article regarding the above issues:

https://www.readingrockets.org/topics/learning-disabilities/articles/understanding-concerns-parents-students-disabilities:

School transitions, whether from one level of schooling to another (such as from elementary to middle school) or into a new school (such as after family relocation), are stressful for all families. However, these transitions typically are easier for students without disabilities than for their peers with disabilities (Ysseldyke et al., 2000). Therefore, transitions may raise particular concerns for the parents of students with disabilities. School transitions mean establishing new relationships with principals, teachers, support-service providers, other school personnel, and students and their parents. Parents may feel depressed, pessimistic, and overwhelmed about the need to start all over again with this new cast of characters. These new people will need to be educated about the child’s disability and trained in all pertinent special procedures or equipment. Meanwhile, the child will need to adapt to the new school, new people, and new schedules and routines (Ysseldyke et al.). These changes may be particularly unsettling to a student with a disability who already feels little control over many aspects of his or her life. The accompanying stress may manifest in previously unseen behavioral problems in school or in verbal or somatic expressions of anxiety at home or in school. 

WHAT ARE THE ODDS?

What are the odds?  In this case, about 1 in 10,000...

"Choanal atresia is a rare condition and affects about one in every 10,000 births. It is slightly more common in girls than boys."

For comparison:

Down syndrome remains the most common chromosomal condition diagnosed in the United States. Each year, about 6,000 babies born in the United States have Down syndrome. This means that Down syndrome occurs in about 1 in every 700 babies.

Let me explain.  In a previous post, I explained that during Jonah's tonsil removal surgery, the ENT found that Jonah had unilateral choanal atresia or blockage of one side of his side of his nose.

Just a few weeks ago, Jonah had a CT scan as ordered by the ENT in order to look further into this blockage.  The CT scan confirmed the diagnosis- his blockage is part bone and part tissue.

Last week I was able to talk to the ENT about these findings.  Here is the scoop:

1. Because of finding this blockage, ENT thinks that while the removal of tonsils may improve Jonah's sleep apnea, it will not eliminate it.  The plan is to have another sleep study in June to see what level the sleep apnea is at this point.  I can tell you unofficially that Jonah is back to snoring at night...

2. Depending on the results of that sleep study, the ENT will figure out the extent of surgery that needs to be done besides just opening the blocked nasal passageway because of the choanal atresia.  But it sounds like, from the ENT's opinion, that passageway needs to get unblocked for other reasons besides just its effect on the sleep apnea.  

3.  The ENT said he was very surprised this condition was not found earlier with Jonah.  Most babies with this condition, even unilateral (only one side of the nose), tend to have breathing and feeding issues.  The thing is Jonah did have feeding and breathing issues in his early months.  It's just that he had other conditions that doctors felt were causing those issues: laryngomalacia (floppy throat tissue), reactive airway disease, and atelectasis (similar to scar tissue) of the lung because of pneumonia.  Anyway, the takeaway I got from the ENT was he was quite impressed with how tough Jonah must be that this blockage wasn't found until age 13.  

Jonah is quite a kid...in many ways.

RESURRECTION EGGS EASY READER

Every year we go thru the Resurrection Eggs to help tell the story of Easter to our boys.  It is a great resource!

Click HERE for the Amazon link to Resurrection Eggs

With the boys doing more independent reading as of late, I decided to make an Easy Reader version of the text that goes along with each egg.

Click here for the Resurrection Eggs Easy Reader document

I'm excited to hear the boys read parts of the Easter story to us this year!