March 28, 2012

Go The Distance!

How can I share the latest on Erik?  There's just so much.   Let's get the sad part over with.  The staff have been telling me that Erik's going through some periods of sadness and sometimes anger.   This isn't new. He's had periods of this sort on-and-off for years.  But I hate hearing it.  I so want Erik to be happy all the time. 

One day last week during my visit he was having an off day.  I kept asking him, "Erik are you doin' ok?" and he'd just sort of grunt.  He seemed distant and sad.  I had arrived during sing-a-long and we enjoyed doing that together.  Then one of the sweet older men who lives in the facility asked if we'd like to see his paintings.  Since I'd attended his art show a few weeks earlier I was very eager to talk with him about his hobby so we went to his room and Erik sat (a little impatiently) in a chair while we visited about his art.  He even decided to give Erik a small original painting of a bird, it was so pretty.  When he asked Erik if he wanted it for his room he had the gall to say "No".  I said "YES you do and we're going to put it up in your room this very day."  We returned to Erik's room and I think he cheered up to have more of my attention.  I was encouraged to see Erik start to tease me.   I went into the bathroom to wash my hands and he closed the door on me and then started laughing.  He calls it "putting you in jail."  Well, I try to milk it for all it's worth so I knock on the door like I can't get out and plaintively say "let me out" ... all to help him enjoy the joke as much as possible.  He did, but I could still tell he wasn't himself.  So we went out walking around the building.  It was one of those perfect spring days and about 4 in the afternoon and I thought, "hmm, maybe I can take Erik out for a short drive before dinner."  So I told the receptionist, "We're going out, be back by 5" and off we went.  What would cheer Erik up?  Maybe a coke.  So we got into the car, cracked the windows.  I found a country station and cranked it up.  Erik was thrilled!  He sang along with gusto to a song about a man who "ate cornbread and chicken."  This was the ticket!  Erik was a smiling, clapping, happy guy.   I said, "hey, my car need gas, let's go get gas."  We sang all the way there.  I pumped and afterward asked Erik, "Would you like to go into the little store and get a coke?" Haha, of course.  So we went in, and they had NO soda fountain.  But, a-ha...McDonalds was next-door.  "Hey Erik, let's go get a coke there."  He was all in for that!  So we went.   I got him a large cup, he filled it up and then I wanted to get back into the car so we could make it for dinnertime.   Erik had other plans.  Didn't I realize that he was IN McDonalds?  He points to the counter.  "Oh, you want food too?"  He nods, sincerely.  I say, "but Erik, this time we're only getting a coke because it's almost 5:00, you know, and you'll be having dinner...blah blah..."  We're sitting down at a little table by now.  Erik is not happy, he is frowning.  He turns his back to me.  I am being shunned.  He sighs and puts his forehead in his hands.  He's not even touching his coke.  How can my sister DO this to me?   I'm thinking how can Erik do this to me?   What to do. Time passes.  "Erik, would you like a hamburger?"  He looks at me and nods.  Then quietly he whispers "Pleeeeease."  Oh my goodness.  Well, I can tell when I'm beat and...after all, it IS World Down Syndrome what if Erik eats 2 dinners today!  I go get him a burger a fries, to go.   We get into the car and he's a little bit happier.  I put on more country music to help.  We arrive back at his home right in time for dinner. He walks in and holds up his McD bag and coke to show everyone how lucky he is.   I took him to his dinner table and helped him get set up with his ketchup and he was a-ok. I still don't know if he ate two meals that night.  But I was reminded...don't take Erik near a McDonalds unless you're willing to go the distance. 

hanging in Erik's room

Special visitor for Erik

Yesterday Erik received special visitors.  A friend who I've known for a few years has a 16-yr old son with Downs.  She had been wanting to meet Erik for a while and for her son Collin to meet him...and... yesterday was the DAY.   Erik and I waited for them in the lobby and - wouldn't you know, they came in and both Erik and Collin were in red shirts.  They looked like buddies already.   Collin's like most kids with Ds, he befriends you the instant you meet him.   Collin reached out to Erik with such kindness.   I wish Erik could have gained the use of his words for one day to be able to talk with Collin.  They could have talked about the many things they have in common.   Both like food, like sports, like to dance and both wear glasses.   But Collin likes babies~!  Erik, not so much.    But, you know, Erik used to be a young dude; I don't often think of that.  Collin helped me remember him in that way.

Here we are on the way to Erik's room.

So cute!!! Collin was the SWEETEST!  The four of us played the balloon volleyball game in Erik's room. Oh, and we tasted blueberry pomegranate juice from Erik's fridge.  (I had forgotten to bring cokes AGAIN!)  Erik wasn't so hot on the juice, but I think Collin liked it.  I should have given it to him.  I know Erik won't touch it again.

Even though Erik was a little quiet I think he enjoyed it.  Here they are before saying goodbye.  

How could you resist such happy faces?  Collin's arm gesture is his signature photo pose.  I like it!
Coming soon, I have many new stories to share about Erik.  Get ready...

March 21, 2012

Celebrating World Down Syndrome Day 2012

Know what today is?  World Down Syndrome Day.  Watch this video and be blessed by the cutest smiles ever.


Wondering why 2+1=3 was all over this video? 2 reasons!  It represents this day on the calendar but also the triplication of the 21st chromosome which causes the genetic condition Down syndrome.

The aim of the day is to raise awareness and understanding of a condition which affects approximately 1 in 800 births worldwide, and to promote the inherent rights of persons with Down syndrome to enjoy full and dignified lives and be active participants in their communities and society.

sweet brother Erik.  He adds joy to many lives by his kind and gentle manner.
see this post to see the awesome video from last year World Ds day.

March 16, 2012

Erik's Sweeter Than Sugar.

Erik and my son playing catch.  As he threw each pass Erik would assume a tough, "don't mess with me" look on his face.
He looks serious but you can be sure he was about to tease someone with that balloon.
Remember the "fill my fridge" plea?  Well, it worked -- look at how happy he is.   He went through those sodas like the government goes through money.  I know he needs more, I can just feel it in my bones. 
Like my new haircut?

What can I report about Erik these past few weeks?  Well, he's becoming the gentleman of Elmcroft.   He just enjoys showing kindness to everybody.  But isn't that what you normally hear about those with Downs?   I've heard how he's danced with one lady and showed up in the dining room with a lady on each arm.  He sits with a group of men during meals, men who are intent on eating, not talking and that suits him.  But the rest of the day, the precious lady-friends who dote on him are such a gift.  so grateful!

One day this past week as we were doing something he asked out of the blue, "How's Becky?" (our sister).  He hasn't been able to ask me a question like that in a long time.   He's often giving me little things with the sweetest look of "this is for you" -- mostly snacks that he doesn't want to eat, crackers, etc.  Every time I leave his facility he wants to walk me to the front door and hold it open for me.  I think HE is spoiling ME.

Tonight my husband and I stopped by and Erik noticed I hadn't brought any sodas!!  (I forgot...again)  I asked him if he was going to be sad and cry.  He immediately said, "Boo-hoo-hoo" and then smiled.  :)  More sodas are promised tomorrow.

Ps 115:15. May you be blessed by the Lord, the maker of heaven and earth. 

March 7, 2012

Predictability and Surprises

Hello-o-o again.  Spring has "sprung up" in this part of the world.  The weather is unpredictable.  But Erik's days are becoming more predictable.  This morning I walked into the main lobby and he was sitting on one of the couches, keeping company with some of his new friends.  They may have just finished their sing-a-long.  Erik came up to me and it was clear that he's got another cold.  Rats, he just got over the first one.   I had his clean laundry to put away so we headed to his room.   He's so funny.  The first thing he did when we entered his room was THIS:

"Erik, you drank BOTH the diet cokes?!"   "Uh-huh."   He needs no words.  Please bring me more diet sodas, you- you- you- sister.   "Ok, I'll bring some next time."   Notice that he still has 2 of the 3 chocolate milk containers Dad brought him AND the juices at the bottom I brought weeks ago which really don't interest him at all.  With Erik, it's Coke or Dr. Pepper or Pepsi...or else.    We don't fill Erik's fridge with tons of sodas because he'd drink them all at once and be very happy, I might add.  So we stretch them out, much to his dismay I'm sure.

He started coughing and went over to his bed and seemed a bit tired so I helped him lay down.  He fell asleep pretty fast but I noticed something.  He wasn't getting good rest at all.  In fact, he was experiencing all the typical signs of sleep apnea.  Double rats.   I did a little reading on this and it turns out it's very common in Down syndrome children and adults.   I wonder how long Erik has experienced this and no one really knew.  I don't know how he'd respond to a CPAP machine.  I think it would bother him.   My husband wears a dental appliance at night to help open his airway.  I wonder if that might help Erik's breathing.  I'll have to look into this.  I watched Erik attempting to sleep for about 15 minutes.  Then he sat up, blinked real big a few times, looked at me, and smiled a bit.   Then he pointed to the door and I said, Yes let's go find your friends.   We went into the activity room just in time for exercise. Today they used bands for the first time.

They also used the parachute which is a lot of fun.   Erik was the only man in a circle of sweet women, exercising away.  Then it was on to lunch (lasagna) so I headed out.  I saw their nurse and told him what I noticed about his sleep.  We talked about it a bit and she mentioned to me that Erik's loving the dogs who live in his facility.  He's been brushing some of them and spending lots of good time loving them.  I am not surprised at all; it makes me so happy.  We do not own a dog but it's been on my mind for years to think about getting one.  Just think.

So, if any of you have advice about sleep apnea please let me know.  If any of you have advice about dog ownership, I guess I need to know that too.
Have a happy week and be blessed.