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JONAH'S HEALTH HISTORY

Thursday, May 11, 2017

THE MYSTERY OF BEN

First some fun stuff:

Did you known Batman and Robin live at our house?  
Batman is the boys' new favorite obsession!
So glad both boys have capes- 
see the post about the capes if you want to read a really neat story!


Did you know if you stand on a bean bag chair, you can catapult yourself into your brother's crib?  This is what Ben figured out how to do in the morning.  We have since had to remove the bean bag from the room because the boys were starting to have a wrestling matches in the crib which didn't always end well :)  And yes, to those of you wondering, Jonah is in a crib yet.  We tried a bed for a few months, but Jonah was getting out during the night and jumping on his brother Ben.  Just made me too nervous.  Jonah loves his crib, and both boys get good night sleeps this way.  

Now some hard stuff:

The past month has been hard.  Ben is much more defiant as of late and much more resistant to me.

Did we expect this?  Of course.  We knew this would be a huge adjustment for all of us with many ups and downs.  One of the best pieces of advice we got going into this journey was "This will be a marathon, not a sprint."

Respecting Ben's privacy and dignity, in general terms this is what we are dealing with recently:

1. Defiance over almost anything I request him to do.
2. Often speaking in an angry voice
3. Resistance/reluntance to touch either for personal care (ie. combing hair) or for affection.

The challenge is finding out the "why" behind the behavior.  We think there are actually a few things going on:

1. Ben is dealing with sadness/grief over his past life.  Ben lived 6 years in his orphanage.  I'm sure he has some fondness for his time there.  Afterall, he had his special mama caregiver and friends in his groupa.

2. Ben is fearful or unsure about how long his time in our family will last.  He may not understand or comprehend when we tell him we are his forever family.  He may be wondering when this will end and he will have to leave.  For the past 6 years, he watched caregivers and his friends come and go.  Ben hasn't experienced many permanent people in his life.  Maybe part of is starting to really enjoy our family, but then he comes up against his fear of what if we leave him too?
3. Ben is angry at not being able to get away with things he probably did at the orphanage.  This is most directed at me.  Him and I are one-on-one quite a bit during the day which means I can keep a very close eye on him.  I think he resents my constant presence in his life.  He's never had this much consistency or follow thru in his life before, and he may not be liking it so much.
4. Ben is testing us.  How far can he push us? And what happens if he goes to far?
5. Ben is almost a 7 year old boy.  He's going to be defiant and loud and unruly just because that's what little boys do.
6. Ben has Down syndrome.  In my experience, some kiddos with DS have a hard time with transitions especially when it's going from a highly desired activity to a less desired activity (of course, don't we all?).  Sometimes kiddos with DS are less inhibited and just let their true unfiltered emotions show.  If he doesn't like something, he yells to let me know about his dislike.

So we are aware that what is going on with Ben is probably a mixture of these 6 issues.  Of course, coming up with ways to help Ben and us is a bit more complicated when there are several causes for the behavior.

Here is what we are trying right now:

1. Positive feedback for good behavior.  We are using a reward chart with a miniature candy bar for every 5 stickers earned.  I am picking my battles at this point, and nutrition and good dental health are at the bottom of my list.  Ben loves chocolate, and it very much motivates him!  Our social worker did recommend we give Ben a chance for a redo if he makes a poor choice, and then reward that redo just as if he had made the good choice right away.
2. Clear consequences for poor choices.  We are using loss of a privilege (toy, game, etc), timeout, or quiet time in his room to help him regroup.  Our social worker suggested maybe trying "time in" which I will have to research to see how that works.  It's a new concept to me.
3. Trying to help Ben's sensory diet and helping him experience what he may have missed as a baby/toddler- rocking, wrapping in blanket, sensory bin, sensory videos to help calm, etc.

So for now, we are hunkering down and trying to help all of us through this rough patch.

I choose to share about this because one of my hopes for this blog is to help other families be informed and aware of what is involved in adopting a child from a hard place.  I believe being prepared for the difficulties helps you deal with the difficulties better.

I read a bumper sticker recently that said, "Jesus loves you, I am trying."  That made me laugh.  Then I started thinking about it in terms of Ben.  Sometimes I feel like I am trying to love Ben, but he is resisting me.  Then there are the times I don't respond to Ben the way I should.  This is a messy and complicated thing we are trying to do- bringing Ben into a new life after 6 years of his old life.  It will probably be one of the hardest relationships I will ever have to work for.

But Ben is so worth it!  He has a smile that lights up the room.  When he tells me he loves me, it melts my heart.  When he asks for help or wants to sit on my lap, I am reminded our relationship is moving in the right direction.  Ben is such a bright little boy with SO MUCH POTENTIAL!  He is going to go places in life, and I am amazed that our family has the privilege of being part of his awesomeness!  

Ben is definitely a mystery worth solving!

Besides sensory calming videos, I am trying to have Ben listen to scripture lullabies.  
Here is one of my favorites:


Thursday, April 27, 2017

HUMBLED


Today we received a letter from the child we sponsor through the Compassion program.  Marie lives in a small country in West Africa.

If you have never heard of Compassion, check this program out.  It is amazing program that allows you to sponsor a child with a monthly donation of $38 as well as correspond back and forth with the child.  You also have the opportunity to give donations for the child's birthday and Christmas.  

We respect this program because it is managed very efficiently meaning the children receive most of the donation (82%).   

Compassion

In our letter today, Marie explained what her family purchased with our Christmas gift: 20 bowls of corn, soap, a sack of rice, a big bowl, oil, sardines, plastic bucket, beans, etc.

What a different list for Christmas than mine would be!  I was humbled that Marie used her Christmas gift to help bless and support her family by buying basic foods and supplies.  

It made me realize (again) how hard many children in the world have to work to just survive and live.  I realize (again) how grateful I should be for how easy it is to live my life here in US.  

That is why it so important for us to share the blessings God has given us here in this country with those around the world who are experiencing hardships and difficulties, especially children.  

Here is the photo Marie included with her letter to show us what she purchased.  Doesn't exactly look the toy aisle at Christmas, does it? 









Saturday, April 22, 2017

IF THIS, THAN THAT

Spoiler alert: cute photos at the end of this post!

I love reading adoption blogs.  It is so encouraging and inspiring to read about how the Lord works to bring beautiful orphans into families.  It also is nice to be able to relate to what families are experiencing in their adoption journeys- it helps me not feel alone during the difficult phases and is a way to celebrate during the good times.

One thing I notice though as I read blogs is often people write about the progress their kiddo is making with whatever skill or task- learning English, numbers, colors, shapes, etc.  In sharing this good news, they often share things they have done to help their child in this progress- certain toys, certain technology, certain program, certain activity you do with them etc.  Hence, it often ends up sounding like because we did this, our child now has mastered this particular skill.  

That is great when we can help our child progress down the road of learning.  There have been a few things I know I have helped teach Jonah and Ben.  Its satisfying and a nice sense of accomplishment.  And I know people sharing those experiences on their blogs is way to help other families and give them ideas to try.  

However, there are many things I have worked very hard at teaching Jonah especially, that just have not taken.  Just because I have done certain things, we did not end up with the hoped results.  Toilet training is one of those areas as well as things regarding Jonah's speech.  

Does it mean I have failed or haven't done enough?  Since this is always the nagging thought in the back of my head, then reading blogs where everything sounds successful can really make me feel bad.

So I guess today I am just advocating for room for some not so successfuls "if this, than that".  

Not everything works as planned with any child.  In our own personal experience, Ben learns in a much different and often more predictable way than Jonah.  Jonah's way has always been one filled with twists and turns from the very beginning.  That is just Jonah.  He is still an amazing bright and smart little boy, but things just happen differently for him and at a different rate.  

So if you are a mom of a Jonah out there, I am encouraging you and I to relax.  Our blogs might not have all the success stories in them because the success doesn't always happen as planned.  But we are still on a incredible journey that we wouldn't trade for the world, right?

If I didn't have the privilege of these wonderful boys in my life, then I would be missing out on some very wonderful experiences!  Now that is the best IF THIS, THAN THAT!

And now because posts are always more interesting with pictures, here are some random cute (of course) pictures that show our amazing life with our kiddos!


According to Jonah's philosophy of life, 
the question isn't "Why does Jonah have a pull up on his head?" but rather "Why don't you?" :)

Jonah has a 4 legged stalker!

Random breakfast happiness!


Jonah pretending to be our Packer coach, Mike McCarthy.  Note: he came up with this "costume" all by himself.  The pencil is the microphone he saw the coach talking into.  Pretty clever, isn't it?  Never saw Coach McCarthy in a flash cape though...  

Our boys at the Daniel Tiger Live show this past January.  
They were fine as long as they had their headphones on to buffer the loudness.


Wednesday, April 12, 2017

INSPIRED!

Yesterday Jonah had an ENT appointment at our local Children's Hospital. 

While in the waiting room, we met the most wonderful young man who happened to have Down syndrome also.  It was such a joy to talk with him and his mother.  This young man is finishing up high school and also has 3 jobs: supermarket, restaurant, and the major league baseball stadium.  How cool is that?

What an inspiration to me for our boys!  

And can I just say a big thank you and thumbs up to the amazing businesses that hire individuals with Down syndrome.  You are very forward thinking and have tapped into an amazing segment of our work force!  Thank you for blazing the trail for our boys in the future.

Another source of inspiration for me was this weekend, the boys and I attended a music class at Gigi's Playhouse.  These playhouses are located in many cities across the country.  They are Down syndrome achievement centers.  What a great resource for families!  They offer music, art, and movement classes, one-on-one tutoring, playtime, and many other social events for families.  All of it is FREE!!!!

I am so grateful we have one just 35 minutes away.  

Hopefully someday I can give back and be a volunteer there.  

Here is the link if you would like to learn more about them and where the one nearest to you is.
Gigi's Playhouses- Down Syndrome Achievement Centers

The thing that continues to amaze is how much support and how many resources are available to families with kiddos with Down syndrome.  You are not alone!  There are so many wonderful people who want to help your child reach his or her fullest potential.  This awareness of help was one of the reasons we felt so encouraged to adopt Jonah almost 7 years ago.  We knew Down syndrome can have its challenges, but so many people helped us see what an incredibleness to life Down syndrome brings!

Here are the boys at the music class at Gigi's:


STICKS AND STONES

For all that Ben has had to adjust to, we are very proud of how amazing he is doing with it all.  For the most part, he is a bright and happy little boy who seems to really enjoy his new life in his new country and family!

However, one area that continues to be a struggle for him is in the area of play.  Ben just doesn't know what to do with toys most of the time.  Jonah will be busy playing with his blocks, Little People, etc, and I will often find Ben just laying around sucking his thumb and waving some object in front of his face.  When I try to encourage him to play (and I confess, sometimes it feels more like force), he often gets angry at me.  But I think the anger is really more confusion- he just doesn't know what I am asking him to do.  Creativity and imagination are not part of his repertoire yet.  I am seeing some progress in the area thanks to his wonderful role model Jonah!  But it is definitely still in process.

That being said, outdoor play is much easier for Ben. I think this is because his orphanage schedule was 2 hours of play outside in the morning and afternoon.  And the thing about Ben playing outside is he doesn't really need toys to occupy himself outside.  Not to sound "orphany" (I know this isn't a word), but he really just loves to play with sticks and stones (and dirt and grass).  He can keep himself busy just wandering around our yard.  This is where I see the most creativity and imagination in Ben. 

Does this make me happy?  Of course, I think a child's imagination is one of the most beautiful things about childhood.  I like watching Ben have fun and play rather than lay there and stim with a object in front of his face.  

However, there is a part of me that is sad that sticks and stones are all this boy ever really had to play with.  I am not advocating that kids need toys to be happy, but I feel sad that Ben's life was so empty of what most kids just take for granted.  I wish Ben would have had a family that surrounded and filled his life with love and attention from the very moment of his birth instead of being left at the hospital because there was such a fear of his Down syndrome.  I am sad that his birth parents missed out on having this precious boy in their lives.  I am sure they feel a loss and sadness that I can't even imagine because of leaving him that day.  

We are making up for so much lost time.  I want to give him so much so seeing him most happy with stick and stones is a bit humbling.  Not bad, just humbling.  

Here are some photos from our walk on Sunday- the boys had so much fun playing with....you guessed it sticks and stones!



 


Thursday, April 6, 2017

MATH ACCORDING TO GOD

In follow up to the Power of One post:


INTERNATIONAL:
The international orphan crisis affects more than 140 million children.  In the United States alone, 137 million people claim to be Christians of some denomination.  If only 1% of the Christians in this country adopted just ONE CHILD, 1.37 MILLION CHILDREN from abroad would have loving, Christian families to grow up in.  

(Taken from http://showhope.org/3-things-orphan-crisis/ and http://reecesrainbow.org/background/staggering-statistics)


DOMESTIC:
U.S. statistics indicate over 500,000 children in foster care. These numbers should move us to action. If one family from every three churches committed to adopt one child and those three churches committed to support that family, there wouldn’t be children waiting to be adopted in foster care. Sure, there would still be temporary placements and other similar constructs, but the foster care system as we know it would be destroyed. 
(Taken from https://drgrcevich.wordpress.com/2015/09/30/what-if-the-church-destroyed-the-foster-care-system-as-we-know-it/ and https://chosenforlifeathens.com/what-we-do/foster-care-inititative/)


God has worked out the math for us- 1% of Christians in this country or 1 family in every 3 US churches....
we just have to act on it!