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!

TONSILLECTOMY AND TV

How would a parent survive his child's tonsillectomy without TV?

No, seriously, TV/screen time has been an amazing help for Jonah (and me) this past week in dealing with his pain and discomfort after his tonsil surgery last Monday.  

TV/screen time and music has always been a great distractor for Jonah.  If he is upset or angry about something, usually offering a YouTube song or video or watching a show on TV helps calm him down or redirect his emotions to a happy place.  

So this past week, all TV/screen time limits have been thrown out the window!  It will probably be hard to wean him of this unlimited viewing, but we will cross that bridge when he is fully recovered.

Fortunately, Jonah has pretty good viewing tastes so I have enjoyed many good movies and Beatles documentaries while cuddling on the sofa with him!

Over the years of dealing with Jonah and his ailments, I have finally developed a reliable pain scale to know how uncomfortable Jonah is.

1. No pain/baseline healthy: if you tell Jonah it's time to be done with TV/screen time, he very easily gives it up and moves on to another activity.

2. Mild discomfort/pain: Jonah puts up more of a fuss when it's time to turn things off, but after a few minutes, he moves on to something else.

3. Moderate discomfort: Jonah will be complaining of pain, but then once he gets to have TV/screen time, he stops complaining.  However, if you try to turn off the screen, he starts to moan and groan in pain again.  

4. Severe discomfort: Jonah will continue to moan and groan even while watching something.  Or if it's really bad, he will refuse the TV/screen time.

And at each of Jonah's pain levels, he wants/demands to be cuddled.  He wants someone right next to him most of the time.  

Not very scientific, I know, but this is one way to help me guage what Jonah is feeling in terms of pain.  

Interestingly enough, here is Ben's pain scale.  Keep in mind though, Ben is rarely sick even with just little stuff like colds/flu, and we have never, thankfully, had any serious health issues with Ben.  So I'm not drawing from as much data as I have with Jonah.

1. No pain/baseline healthy: As mentioned in the previous post, Ben's usual demeanor is somewhat gruff and grumpy with a little bit of sweetness tossed in every once in a while.

2. Mild to moderate discomfort: Ben gets weepy and points to his head and indicates he's tired.  He appreciates kind words of comfort and is sometimes open to being cuddled but usually resists. 

3. Moderate discomfort: Ben will act very gross and seem like he is purposely trying to infect others with his illness-drooling, wiping his wet fingers over every surface he can touch, licking surfaces or our arms/hands.  He also can be very naughty and sneaky.  It's like he's trying to push you away from trying to help or comfort him.

4. Moderate to a little more discomfort: Ben will hide and act very scared if you discover he doesn't feel good, almost like he is afraid you will get angry at him for being sick.

I think this very unique pain scale for Ben is the result of 6 years of self-soothing when he was sick or uncomfortable.  I'm guessing if he was sick in his orphanage room, he was probably confined to his bed so he wouldn't infect the other kids or the workers.  And probably, the workers didn't appreciate having to do extra work or pay extra attention to a sick kiddo because they were busy enough trying to take care of a room full of kids with special needs-some very severe.  And from what we saw, Ben was one of the higher functioning kids in his group so that in itself meant he got less attention because he didn't need as much help.  So Ben has always been on his own for the most part, whether he was healthy or sick.   

THE SWEETNESS OF BEN

Anyone who is around Ben for any significant amount of time picks up pretty quickly the kid loves sweets.  There isn't a cookie, candy, donut, cake, or ice cream the kid doesn't enjoy!  Before anyone gets ready to pounce on me as a parent, we do keep his consumption of sweets to a minimum unless we need to really bribe him up good- haha.  No seriously, the kid is a healthy weight and has healthy teeth so his love of sugar doesn't seem to be hurting him at this point yet.  

So yes, Ben loves to eat sweets.

However, anyone who is around Ben for any significant amount of time would also pick up pretty quickly that the kid likes to "lay in the weeds" in regards to acting sweet.  Ben's go-to behavior is usually more rough and gruff in nature.  He is happy, but he often presents kinda mad, with a loud/growly voice, and he likes to give directions/commands- haha.  

But every so often, Ben relaxes and lets you see his sweet side.  And boy, is the reward great when you get to see and experience the sweetness of Ben.  What a cute adorable little soul hides behind all that rough and tough exterior.  When Ben acts sweet, I now realize and so greatly appreciate the amount of courage it takes him to let down his defenses and become vulnerable in showing his emotions to people around him.   

This past Friday I got to witness the sweetness of Ben in such a Ben way.   

Every month, students at our school get to spend their good behavior tickets at the Rocket Shop- basically a teacher-stocked garage sale.  The boys have come home with many items over the years, all items which for the most part they each have kept for himself.  

This Friday, I picked up Ben and brought him home from school as usual.  He rarely says much about his day unless I prompt him to tell me about it.  Today he had no "exciting" news to report, but again, that is pretty usual.  We got home and started our afterschool routine.  Jonah has been home from school all week because of his tonsilectomy on Monday.  After Ben had been home a few minutes, he went to his backpack to get something out: a pink stuffed animal unicorn- kind of weird looking/very girly but very soft.  Then I watched him walk over to Jonah who was laying on the sofa and in Ben's typical growly voice he annouced, "Here Paul/Jonah sick." (remember Jonah's 2nd identity these days is Paul McCartney).  Then he throws the unicorn at Jonah and walks away.  This interaction translated in "Ben Speak" is Ben giving a gift to Jonah.   

The monumentalism (is this a word?) of this overtook me.  Ben used his hard-earned Rocket tickets to get an item not for himself but for his brother.  And Ben really thought it through to get an item that could be comforting because his brother is sick.  

The humor yet reality of who Ben is also struck me in this moment- it wasn't a warm fuzzy interaction of Ben talking sweetly and softly to his brother and declaring his love as he presented the gift.  He basically yelled at Jonah and threw something at him.  

But I knew, this was Ben's sweetness so uniquely revealed by our big guy who had such a lonely life for his first 6 years.  This is Ben realizing that he has a brother who he loves and cares about and wants to help make him feel better after having surgery earlier that week.  This is a Ben powering through all his feelings of jealousy because that brother has been ableo to stay home from school all week and is getting extra attention from everyone.  

This is the sweetness of Ben.  What a privilege and honor to be able to observe.  

The added bonus of all this is Jonah has actually attached to this unicorn.  Jonah has never attached to any stuffed animal before.  But this pink girly weird looking thing he is cuddling with and pressing against his face when his throat is really hurting.  I guess Ben really knew what his little brother needed.

Never underestimate these guys! 

DONE AND HOME

Jonah's tonsils are history- surgery was on Monday, and he came home Tuesday afternoon.  He had some dips in oxygen during his sleep and needed 02 for about a half-hour early Tuesday morning, but by Tuesday noon, doctor said he was good to go home!  

Now that we are home, we are working on keeping up with the doses of Advil/Tylenol and to make sure Jonah isn't too active.  It's a good sign he wants to be up and about, but we have to make sure he doesn't overdo it.  

Jonah in his Pre-Op room

Jonah after surgery up in his room.  His color and breathing were great!  Relief!

During surgery, the ENT did a nasal endoscopy to see if there were any other issues that might be contributing to Jonah's severe sleep apnea.  He discovered 2 things:

1. The back of Jonah's tongue falls back when Jonah sleeps.  Hopefully with the tonsils out, Jonah's tongue will start to "behave".  Another sleep study in a few months will determine how the tongue is working without tonsils.  Otherwise, when Jonah is a bit older, there is the possibility of a sensor that can be placed in the back of his throat that would help stimulant those muscles to keep the throat in place (similar to how a pacemaker works with the heart).  Right now this surgery is only approved for people 16 years and older.

2. Jonah has unilateral choanal atresia- blockage of his right nostril.  The ENT was very surprised to find this condition.  He doesn't see it very often.  The blockage can be made completely of bone or a combination of bone and soft tissue.  A CT scan is needed to determine the severity of the blockage.  It is a congenital condition which means it is something that did not form correctly in utero.  It is rare, 1 in 7000 births.  Whether this needs to be repaired by surgery will be determined by the CT scan and if there is any improvement when Jonah has another sleep study in a few months.  Since it only affects one nostril, it is possible Jonah would not need to have this fixed if removing the tonsils reduces his sleep apnea.  

Click HERE for article explaining Choanal Atresia  

Click HERE for another article

At home, for whatever reason, Jonah feels better with a 

pair of CLEAN underwear on his head!

GETTING READY FOR SURGERY

If someone woke you up at 3 am and offered you a burger, would you NOT be surprised and remember to say thank you?😊

For his 1:15 pm surgery today, Jonah couldn’t eat after 3:45 am.  So we brought him a hamburger up to his bedroom.  He just sat up in bed, smiled, took a bite, and said “thank you”.  No confusion or surprise - just like this was completely normal- haha.  

Now we are waiting in the pre-op area, and he keeps asking for Culvers.  Poor guy, it’s going to be a while before he’ll be ready to eat his favorite food😕