PATIENCE, TUBAS, AND "IT TAKES A VILLAGE"

Since Memorial Day 2019, for whatever reason, Jonah became very interested in eagles and tubas.  I think the connection happened because of the American flags and the marching band at the Memorial Day activities in our town.  But I don't know why these 2 items caught Jonah's attention as compared to a zillion other things that could have caught his attention.

His eagle obsession has been rather easy to accommodate.  For his birthday we gave him an eagle birthday cake, eagle book, eagle tshirt and eagle lawn ornament.  Throw in a few YouTube videos of eagles and we are good to go!

The tuba obsession has been more of a challenge.  Jonah wants a tuba.  Please note: no one in the WORLD makes a toy tuba!  I found tuba ornaments (this is actually quite a thing.  I don't know why?).  I found tuba books and tuba tshirts.  But no toy tubas.  

Now could we have bought him a real tuba.  Yes, we probably could have found one somewhere at a reasonable price.  However, my practical side told me this obsession might end as quick as it started so why bring a tuba into our life if it might not be useful for long.  My practical side also told me that I don't want another bulky useless thing in our house- we already have too much junk that serves no purpose.    Plus do I really want to hear 2 boys trying to play the tuba?  That sounds like a migraine waiting to happen...

So Christmas came, and Jonah really wanted a tuba.  We were very proud of Jonah for how gracefully handled the fact that on Christmas morning there was no tuba.  

I'm not going to lie to you- now that his like for tubas is going on 10 months, there have been times I have felt extremely guilty for denying a tuba to this cute little boy who doesn't ask for much in life.  

Have I been a mother who missed a moment with her child simply because I didn't feel like being a mom to a tuba besides 5 kids?  I don't know the right answer.  

We have tried to never over-indulge our kids.  We want them to appreciate the simpler things in life and realize that material possessions are not that important.  So why then does my heart tug so when Jonah asks for a tuba?

Well, the amazing teachers at our school came to the rescue along with a high school boy who volunteers in the boys' special ed room.  This high school boy worked it out with the band teacher for him to bring a tuba to the boys today in school. 

 Jonah's wish came true!  Jonah who has handled his request for a tuba for the past 10 months with unusual patience finally was rewarded.  Jonah got to play a tuba!  Ben, as the other half of the dynamic duo, got to play the tuba also.

What a fine day it was for these two little boys!

Do I still feel guilty I haven't bought a tuba?  Yes.  But maybe today taught me a lesson also.  Other people are ready and willing to help out with the boys and fill in the gaps that I can't make happen for them.  That's pretty neat!

Now enjoy the photos! 

GOING DEEP

The previous post was a light-hearted look at our life with the boys.  Lots of fun, lots of laughter.

However, now it's time to go deep. Because being the parent of a child with special needs often opens you up to things that are difficult and painful to watch and experience with your child.

Our child's social interactions are one of those areas that can cause us to feel pain in our hearts for our kiddo.  

Kiddos with special needs can have a difficult time making and maintaining friends especially with typically-developing kids.  This difficulty can manifest itself in feelings of loneliness, rejection, and even hurt if other kids are mean to them.

No parent wants to see their child hurting.  The reality though for a child with special needs is that the likelihood of him being hurt is probably higher because of his difficulties with social skills as a result of his special need.

Fortunately, I was able to attend a great seminar at the Medical College this past weekend.  It was about helping special needs kiddos with social skills.

The speaker was Richard Lavoie.  I would highly recommended his book!

Click HERE to read about book It's So Much Work to be Your Friend

Click HERE for Rick Lavoie website

The information I learned at this seminar will be useful to me because of instead of just saying the blanket statement "My child has problems with social skills.", Mr. Lavoie gave a breakdown of specific social skills so I can narrow down the exact area (or areas) where our boys might be struggling.  

Here is brief summary of the information he provided:

1. Timing/Staging issues: unable to realize that getting to know someone takes time and work.  Problem with coming on too strong or considering someone your best friend because he said "Hi" to you.
2. Social Memory issues: forgetting consequences of prior good/bad behavior and not applying that to present or future situations.
3. Social Prediction issues: unable to anticipate effect of behavior, not able to choose behavior based on what may or may not happen as a result.
4. Recuperating Strategy issues: unable to fix a social mistake that was made.
5. Feedback Cue issues: unable to assess how others are reacting to behavior and then using those cues to correct or improve behavior.
6. Poor Language skills: physically hard to say the words or to be understood, difficulty making good conversation (Question, comment process) etc.
7. Social Contract issues: unable to understand unwritten expectations of interaction with others, ie. waiting in line versus budding in line.
8. Transfer of Information issues: unable to take good behavior in one situation and apply that same good behavior in a different or unfamiliar place.
9. Reputation issues: Adults (hopefully) have learned to be more flexible with their opinions of people and make those opinions more situational.  For example, just because someone was rude at work doesn't mean he is a rude person all the time.  However, for children, their opinions are more permanent and pervasive- if child is mean during recess one time in 5th grade, then that child might be off the list as a friend for a very long time.

This breakdown will be very useful to me.  Now when the boys come up against some difficulty getting along with peers, I can try to assess the situation and see which area we might be dealing with and be more focused in how to help the boys learn a better way to interact.

Finally, Mr. Lavoie shared an essay he wrote called "Someday".  I think this is a beautiful but heart-wrenching piece that really gets at the core of what it means to walk along our special need child and love and support him through everything he faces.  He has a lot of physical, academic, and EMOTIONAL challenges in front of him.  It isn't all unicorns and rainbows.  Of course, a good attitude always helps to try and focus on the positive.  But the reality is, sometimes it's just sad to see him struggle in life, and this essay gives parents the safe place to say that.

Click HERE for "Someday" essay by Richard Lavoie
note: no intention on featuring this essay as a political viewpoint one way or the other.  Just thought it had amazing insight into what special needs parents face and feel.

BREAD ON A BABY'S HEAD: THIS IS WHY IT'S SO INTERESTING!

   

Quite a attention-grabbing title, right?

My sister took the boys to the children's museum this past Friday.  She was very impressed with how well-behaved and appropriate the boys were during their time at the museum.  She feels like they are maturing!  What great feedback to hear!

However, there was one incident.  Jonah wandered off into an area where a mom was taking care of her baby.  My sister went to get him and apologized to the woman if Jonah was bothering her.  The woman said he was fine except he had put a play loaf of bread on her baby's head.

That really summarizes why life with these two characters is so interesting.  I can teach them appropriate behavior, I can prepare them for situations and how they need to behave in that situation.  I use social stories, cue cards, behavior charts, and bribes- you name it, I have probably tried to use it as a way to help the boys with their behavior.  And as my sister recognized, the boys do have pretty good behavior most the time.  

But it's these unexpected out-of-the-blue actions that there is no way to plan for or prepare for- why would Jonah think to put a loaf of bread on a baby's head?  Is this even a "rule" one would ever think of having to make?  Do we all have urges to put bread on people's head but just have the social filter to know that's not appropriate?  I don't know...it's never been a thought that has popped into my head!

I think it's hilarious actually.  Life with these boys is a hoot.  Just when I think I have them figured out, haha- they throw me a curve ball and give me a new challenge to think about.  

Since I like a life filled with laughter, I guess this is the best life for me.  Thank you Lord!

And now some photos of our funny boys:

At the museum, in the dress up area.  

At the museum, in the schoolroom area.  

Guess who assumed the role of teacher?  

Our little authoritarian...Ben. 

 Boys got to go ice-fishing and snowmobiling this weekend.  

This is what happens lately when we ask them to look at the camera for a photo!

Trying to catch us some supper :)

"YOU CAN'T WALK ON WATER IF YOU DON'T GET OUT THE BOAT."

Living an authentic life of faith...

This doesn't mean relaxing and 

just enjoying the boat ride.

It means being ready and willing to jump out the boat and do whatever it is 

the Lord is calling you to do.

That's where the adventure begins!

20/20 VISION

During my quiet time today, I read Jeremiah 3:8-12

  8 I gave faithless Israel her certificate of divorce and sent her away because of all her adulteries. Yet I saw that her unfaithful sister Judah had no fear; she also went out and committed adultery. 9 Because Israel’s immorality mattered so little to her, she defiled the land and committed adultery with stone and wood. 10 In spite of all this, her unfaithful sister Judah did not return to me with all her heart, but only in pretense,” declares the Lord.

Judah had the advantage of seeing the consequences and ramifications that Israel had to face because of them turning away from the Lord- in 627 BC, Israel was taken captive by Assyria.  However, despite having this information, Judah still decided to commit idolatry themselves and not follow the Lord whole-heartedly.  

Satan is the best "worst eye doctor" in all of history!  

He loves for us to have blurry vision so that we:
1. Can't see the mistakes of the past and learn from them
2. Can't see the possible consequences we might face because of our sinful choices

Satan doesn't like us to have 20/20 vision.  He likes to keep us from seeing the God's truth.  

Please Lord, help me to see you and your wisdom and guidance clearly so that I will follow you with all my heart, mind, and soul.

Satan's eyeglass prescription

God's eyeglass prescription

And now some funny but possibly thought-provoking eye doctor comics:

SICK, NO SICK, SICK

COLDS

All of us...some worse than others.  

Boys in the family took the bigger hit in this category.

SINUS INFECTIONS

Andrew, Stephen, and Jonah.  

All three needed antibiotics for this.  In fact, Jonah needed 30 days of antibiotic to get over his, and now today it seems like he is starting with a green runny nose again.

COUGH

Andrew, Stephen, Ben, and Jonah

STREP THROAT

Jonah, which meant more antibiotics

FEVER

Jonah, 7 days into his antibiotic for strep.  

Doctor thinks he had the bad luck of catching 

a virus along with strep.  

WHEEZING/BREATHING ISSUES

Jonah, doctor didn't suspect pneumonia 

so no chest xray needed.  

Just back on inhalers until the 

cough/wheezing improves 

(pulmonologist had let him go off them this fall).  

WINNER?

If you were keeping a tally, the boys scored higher than the girls in our family, and Jonah is the overall "winner" for most sick.  Poor guy.  

This about sums up the week some of us have had.  Ready to feel better again! 

On the positive side, we are grateful no one tested positive for influenza, and we are thankful there are antibiotics to help.  

Here's to "hoping for feeling healthy soon"

Note: milk is being used, not alcohol :)

Just in case you are wondering: the phrase "sick, no sick, sick" is from one of my 

favorite TV shows,  The Middle.  

For a good laugh, watch Season 3 Episode 6.  

THINK