ORPHAN SUNDAY

Our church today acknowledged Orphan Sunday.  We heard a great sermon.  

We were also asked to share our adoption stories.

Click HERE for video of 11-7 church service

 

14 YEARS OLD AND STILL RUNNING!

I mean literally running- he still runs a 1/4 mile with Stephen that ends in an all-out sprint at the end.  Pretty impressive for an elderly dog!

Our dog Tucker just recently turned 14 years old!

He is a very special and loved member of our family.

The three older kids all came home for Tucker's birthday weekend.  As hard as it is to type this, we all know the possibility is great we might not have many more birthdays to celebrate with our dear friend.  

The kids decided to write a letter to the place where we got Tucker.  I think the letter and the photos capture how much this dog means to all of us.

We wanted to send an update on the life of one the dogs from your place. This might not be an email you receive very often, but we thought it’d be nice for you to hear.

We got Tucker “Booker” in the summer of 2008. He was born October 10^th, 2007 with parents Emma and Vinny. When we got Tucker, we also met his siblings Spidey and Corky.

Tucker has had a pretty nice life here with our family. He has two older sisters, an older brother, and two younger brothers- lots of kids to keep him company throughout the day. He loves playing fetch with a football in the yard, going for walks down by Lake Michigan, and running with his older brother. Even turning 14 years old this month, Tucker can still keep up with all these activities- he has been an amazingly healthy dog all these years! He has also grown quite fond of being spoiled by his older siblings. Tucker sleeps on one of their beds each night and has his own blankets, which he has become very attached to.

Tucker has always been a more mellow character. We remember this about him from the first time we met him at Pleasantview Pups. Our first memory with Tucker is playing fetch out in your yard, and after being shy with us initially, we saw Tucker outrun his mom Emma to show off his speed and get to the ball first. He’s been a great playmate, a faithful comforter, and a loving friend for everyone in our family.

We’ve attached some pictures of Tucker with our family from all the years we’ve shared with him. We hope you enjoy looking through them and can get a sense of how much Tucker has impacted our lives. He has truly been a blessing to all of us, and we are so thankful for you at Pleasantview Pups for making it possible for Tucker to be a part of our family.

DAD IS AWESOME!

 Or another way to say that is “Dad is more fun!”

I spent a week with our oldest daughter up in the Twin Cities.  

Andrew was on 24/7 duty for the boys.

He did great!  The boys had a blast:  Culver’s, pizza, camping in the camper in the driveway, corn maze, and apple picking!

OCTOBER IS DOWN SYNDROME AWARENESS MONTH

 

The boys' special ed teacher and homeroom teacher agreed to show the following video and then give a short presentation to the 5th graders about Down syndrome.  I think it was a great experience for all involved!  

Click HERE if video isn't appearing above

Following is the handout the boys gave to each classmate along with a bag of popcorn.

The teachers also did a drawing with DS awareness bracelets as prizes.

Nice and simple but hopefully had a impact.

Every once in a while, differences between us and you POP up.

 But for the most part, we are all a cool bunch of kids wanting to have fun 

and be the best we can be.

Thanks for taking time to learn about Down syndrome!

Ben and Jonah

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FACTS ABOUT DOWN SYNDROME

Down syndrome means we have 3 copies of chromosome 21 instead of 2 copies like you do.

This extra chromosome affects how we

learn

talk

walk

write

behave

Most often we can learn how to do these things just like you. But sometimes, people with Down syndrome have to work twice as hard to learn things that come easy for you. 

HOW CAN YOU MAKE A DIFFERENCE?

Be patient

Be a friend

Be a role model

Offer help if we are struggling with something, but don't do things for us.  We have to learn.

Include us.

THINGS TO REMEMBER

Everyone is different- that's what makes the world interesting

STILL LEARNING TO BE SOCIAL

 

In preparation for Ben's IEP in November, I typed up this summary of Ben's social skills according to our observations.  I'm anxious to hear school's input on this.

BEN'S SOCIALIZING/MAKING CONVERSATION

 Issues:

1.      Wrong Answer- Doesn't answer questions appropriately or correctly,  ie. "Cow", "Mom", or just babbles.

2.      Delegate- Tries to get Jonah (or someone else) to answer instead.

3.      Whispers answer or answers into his armpit.

4.      Lack of eye contact.

5.      Not Understood- Talks too fast or has trouble with pronunciation.

6.      Shuts down- doesn't make any response.

 

Why we think this happens:

1.      Speech issues- Ben needs to continue learning proper pronunciation and proper speed of speech.

2.      Social Anxiety-  Ben experienced lack of socialization for his 1st 6  years in the orphanage so Ben doesn't feel comfortable or know  how to interact with people appropriately.  His orphanage years I'm  sure play a role, but we are hoping with each additional year Ben      has with us, this becomes less and less of an issue for him.  However, perhaps we shouldn't underestimate how much not having the basic communication foundations for those highly impactful first years is limiting him even now after being with us  5 years…

 NOTE: in our adoption/trauma education we had to take for           the adoption process, we learned that orphanage behaviors can        fade/drop off after the child is home with family for a longer time      than he was in the orphanage.  We are at year 5 1/2 so we are    almost at the half-way mark!

3.      Control- due to Ben's "hard past" of being in orphanage for 6 years, control is always his go-to emotion/goal.  Ben had to look out for himself for 6 years to make sure he survived and got the limited care and attention that was available to him at the orphanage.  So  everything Ben does, unless you can capture him at a moment   where he lets his guard down, Ben wants to control the situation.  It doesn't matter to him if having this control gets him positive or       negative attention, he just wants to be the one to determine what   he will do, how he will do it, and how others should respond/react   to him.  This means if Ben chooses to engage someone in        conversation, you will see a very different style of communication   than when someone else initiates conversation with Ben.  This is        when the issues 1-6 come into play.

4.      Jealousy- This is probably a subset of Control, but I believe Ben has social issues often because he is jealous of others getting attention.  By others, I particularly mean Jonah.  I will often see better social   skills from Ben when he is alone versus when the 2 boys are together.  Again, even if Ben acting inappropriately gets him in trouble, he considers this a win because he probably got more attention, all be it negative, than Jonah during or as a result of the social interaction.

 What we are currently trying to do to help Ben:

1.      Speech therapy at school and thru Rehab Resources.

2.      At home, we go over these Conversation Rules:

                   a. Listen to the question

                   b. Think about your answer.

                   c. Answer the truth.

                   d. Make eye contact.

                   f. Speak clearly

3.      Use of the speech device to assist him in being able to be   understood by those outside his inner circle.

4.      Building upon and encouraging Ben's amazing strengths   

                   a. Ben is very smart.

                   b. Ben has a fun personality.

                   c. Ben is hard-working and determined.

                   d. Ben has good command of the English language despite only learning it starting it at age 6.

                   e. Ben is resilient.  He is tough and strong.  He is a survivor.

                   f.  Ben's potential to do incredible things with his life.

 Possible Action Steps:

1.      Do you agree with all of this information from your experience with Ben at school and/or therapy?  Or is this something that we just  experience at home and social situations besides school?

2.      Are there specific goals/tasks that should be included in his IEP to help Ben in the social area?

3.      Any other help/resources that may be available to Ben to help him improve socially?

4.      Any help/suggestions for Andrew and I as we try to work on these issues at home?

PROBABLY JUST ONE PIECE OF THE PUZZLE BUT...

 

In July 2021, after having Lyme's Disease, Jonah's TSH level came back at 44!  The normal range should be .5 to 4.50!  

His endocrinologist suspects having Lyme's must have thrown his TSH off, so she upped his levothyroxine dosage from 66 mcg to 100 mcg.  

Starting in Aug into Sept, we started to notice more aggressive and angry behavior from Jonah: defiance, rude, hitting, throwing, kicking. This is not normal for Jonah.  His appetite and sleep stayed normal.

Starting the school year, this odd behavior continued and was even noticed by teachers.

So on 9-15-21, we contacted his endocrinologist to inquire if the higher dose was causing Jonah's irritability.  This is listed as a side effect of too high of dose of levothyroxine.  The doctor order TSH labs.  His TSH was <.10.  Normal range should be .5 to 4.50.  This showed the doctor that his medicine dosage was too high and so she reduced him to 88 mcg.

For his 10-11-21 6mth checkup, his labs were .53 which means he is in normal range.  

But the even better news is Jonah's behavior has evened out since going on the 88 mcg instead of 100 mcg.

However, I am not going to assume the medicine dosage was the only thing affected Jonah's behavior.

  Things were changing in our household starting in mid-August.  Stephen was preparing to go back to college, and Lydia was preparing to start college.  There is a chance that Jonah picked up on these changes and felt some sadness/frustration/stress.  

The boys also started with a new team at school due to being in middle school.  But probably to make things a little confusing for them, they continue to meet up with their old team from elementary school.  So this transition could also have been the cause of sadness/frustration/stress for Jonah.

The other factor we had to consider was with Jonah turning 11, hormone levels may be starting to change which can cause changes in behavior.  

When your child is non-verbal and can't express his thoughts and emotions, it's like a guessing game or process of elimination to figure out why he's having behavior issues.

I'm very grateful Jonah's endocrinologist listened to me and helped us out in this one possible cause.

But I'm suspecting Jonah's behavior dive was the result of all these different issues coming together for the "perfect storm". 

I'm very happy for Jonah (and us) that his behavior evened out again.  He is back to his silly mischievious self which is a whole lot more fun to be around!

NEVER SAW THE CONNECTION BEFORE...

Sometimes it takes me a bit to see things even when they are so obvious right before my eyes.

October is Down Syndrome Awareness Month.

October is also Breast Cancer Awareness Month.

There is great significance to me in October sharing these two causes.

How did I never see that before?

Adopting Jonah was a spiritual high for me.  I experienced the Lord working and moving in incredible ways in our lives, in Jonah's birth family's lives, and many other people lives who played critical roles in Jonah's adoption story.  It truly felt like we were part of a miracle when Jonah was placed in my arms at 3 weeks old in October 2010.

That spiritual high happiness as well as joy of adding a baby to our family continued for the next three months, into January 2011.

But then something that felt very sinister and threatening entered my life: breast cancer.

I didn't see it coming- I went in for my 40 year old 1st screening mammo.  I had no symptoms or suspicions.  Just trying to be a good person and do my suggested health screening.

I lost my footing as a mom as a result of that diagnosis.  I felt overwhelmed to be a parent to 4 children and with one of them having special needs.  I felt like I had misrepresented how qualified I was to be Jonah's mom because now I seemed very unhealthy.  

As much as I loved the new baby in our family, emotionally I wanted to pull away from Jonah.  I felt like instead of me, he could have had a better mother, a better family, a better future.  

It took a lot of prayer and mental gymnastics to get my foundation back.  

Oddly enough, the Lord chose the summer of 2011 (right after I finished my chemo) to have Jonah go on a sleep strike.  He stopped taking naps and chose to start his day at 4 am.  Jonah and I were forced to spend many hours together.  Actually: me, Jonah, and my anxiety.  

It was quite a way the Lord taught me to trust Him and not doctors, or experts, or even anxiety meds.  

My entire family helped me get through my cancer experience.  Even that little 4 month old baby who had no idea what was happening in the world around him.  I fought hard to get through the breast cancer journey for my family, and especially for this little baby who had Down syndrome.  

So how fitting that October combines on of my highest experiences with one of my lowest experiences.

Very significant and I can't believe I never saw that connection before.

Am I thankful for the breast cancer?  Oddly enough, in some ways yes.  

It was caught early which helped my prognosis.  It grew me spiritually in BIG ways.  It made me realize how loved and supported I am by my Lord, my friends and family.

Am I thankful for my now 2 boys with Down syndrome?  Of course, YES!  

It is so amazing to watch them grow and learn.  They are so fun to watch how they do life.  Being around them makes me appreciate what's most important in life.  They live authentically.  They don't play mind games with you and say one thing but mean the other.  They don't act nice to your face but then say means things about you behind your back.  If they are upset with me, they just say it right to my face.  That's refreshing!  But they also generously give hugs and say "I love you" at the most random and unexpected times.  Little things make them happy.

Parenting them is a big responsibility.  I worry about the "what ifs" of their future if I'm not there for them some day.  The Lord is constantly reminding me to trust in Him and to take one day at a time.  Because of the boys, I'm being taught some very important spiritual lessons everyday.  

I am so grateful the Lord allowed me to go on this journey with them.   

So in the end, I'm realizing October has much to celebrate for me!  

I don't often post photos of myself.  But this photo has always been very touching to me.  This was the first time I held Jonah after my breast cancer surgery.  It felt so good to have in him back in my arms again.  However, even though I'm smiling, inside there was a lot of fear stirring up.