The Very Best

Erik has been going through some challenges the past couple of weeks.   His bedroom carpet became sopping wet due to a leaky air conditioner and his room started to smell horrible.  It actually became un-livable.  There was an empty room across the hall which Erik moved into temporarily. I'm worried though because Erik has "bonded" with this new room even though there are sparse furnishings, no TV and plain, empty walls. But he's just been as happy as a clam in there, probably because it smells okay.   

Another recent challenge: I took Erik to the dentist a while ago, hesitant as I was to find out what would be discovered.  As expected, his teeth and gums aren't in good shape. I was so humbled to sit next to the dentist chair as his teeth were cleaned and examined because he was such a trooper. I could tell he didn't like being there but he tried hard to cooperate. Just getting him to be comfortable lying down on the dentist chair took time. Trying to get him to keep his mouth open was a lesson in patience. His hygienist and dentist were wonderful dealing with his limitations. And that's what I wanted to write about today. Over and over after entering someplace with Erik, me full of worry and confusion, I've found myself walking out saying "Oh Lord, I think You sent us there."  

Earlier this week, in the midst of the flooded room, I couldn't help but notice Erik was walking bent over and clearly in pain. Oh no. Did he fall or hurt his back?  It was so hard; he couldn't tell me. I took him to my house for a while and decided to try and get him in to see my chiropractor. 

We were able to be seen that very day and while the doctor was examining Erik's back I found out that he had done most of his training on special needs children. Oh wow. Erik was declared the "new favorite patient". Turns out he had strained his back so he got some wonderful therapy. But the loving attention from the staff warmed my heart.

Erik getting his back muscles stretched

This morning, I took Erik to get some new shoes. I went to a place that helps to fit people who have foot problems. We walked in.  Again, me hopeful but worried because Erik wasn't feeling himself.  He was tired, repeatedly falling asleep in the car.  A young woman began helping us. As she was measuring his feet, she said "My youngest son has Down syndrome."  (Oh really?) She took such good care of Erik. We ordered his new shoes and will go pick 'em up soon. I know the Lord sent us there.  I'm hoping we get to speak to that same woman again.

Also, this morning we went to pick up Erik's new glasses. The friendly, young technician who had helped us on our previous 2 visits was waiting. This man has continuously blessed me as he has interacted with Erik. He treated him like a dear friend and fellow sports fan. He clearly wanted to do everything he could to help Erik feel valued.  

Erik showing his new friend how the glasses look

Don't I look amazing?

I've seen Erik, with all his limitations, bring out the very best in people lately and my heart is rejoicing.  It's jumping up and down with happiness. So often as I've been holding Erik's hand leading him someplace I have been strongly wishing that someone would just hold MY hand too and just tell me what to do....I think Someone is!
Love to all of you from Erik and me.


For You are my Rock and my strong tower; 
go in front of me and be my guide...Psalm 31:3

Mom's visit

Over Memorial Day our mother visited us from Colorado for a few days.   I had mentioned to Erik that she was coming but knew he probably wouldn't remember.  She arrived and we went to his room but he wasn't there.  So we set out to find him.  He was sitting at his normal seat in the dining room even though it wasn't mealtime.  He was digesting his delicious lunch, I guess.

Erik, look who's here!

big hug

I asked, "Would you like to come over to swim and eat dinner?"    

I was so thrilled to see Erik take to the water again.  He got in very slowly but once he was in and felt safe with his 2 noodles to hold him up he went to town!  Back and forth, to the deep end and back to the shallow end, splashing my husband along the way and grinning like crazy.  Oh, it made me so happy.  He even swam without the noodles a few times, not putting his head underwater, but he did a few laps.  It was great.

While Mom was here we took Erik to another eyeglass place.  We still need to replace his glasses because the lenses are not secure in his current frames.  Did you know that there are special eyeglass frames available specifically for those who have Down Syndrome?  We found a place not far from us that offers them and now we're waiting for our order to arrive.  If you notice, in most of the pictures of Erik, his glasses have slipped down on his nose; they just don't stay up.  Hopefully the new ones won't do that.  Erik is going to be ONE handsome dude.  Here is the link for those special glasses. 


My other goal for the summer is to get Erik to a dentist.  I found one through a referral who has several patients with special needs/Alzheimer's.  I have an appointment set up and I can't wait for his teeth to be cleaned.  I'm hoping- hoping- hoping they're in good shape.


Happy Summer to all of you!

Tricky Ricky

Once upon a time there was Erik and his sister Liz and they both wore blue shirts.  Erik's glasses were not fitting him well so Liz took him to a vision center to see what could be done.  After that they went to a hardware store so that a copy of Erik's key could be made. An exact copy for Liz.  After that they were hungry, especially Erik.  Did you know that Erik loves food and loves to eat?   They went to Subway.   Erik got chips, roast beef sandwich, soda and little cookie.  As they sat down Liz's sandwich fell onto the floor of the restaurant and she had to go get another one.  When she returned she noticed Erik's mouth was full of chocolate and his fingers too.  He had eaten his little cookie right away before his other food.  Can you believe that?  I can because I was there.    

Well, the two of them returned to Erik's room and Liz put on Erik's cap because it matched her shirt so well.

Then Erik decided to tell you very seriously that ... if you don't watch it, he will tickle you.

or take his cap and put it on his own head.

 "yep, you better watch out.  I'm talking to YOU."  Doesn't he look like he means business?

"Yes, and here's my soda.  My cold, delicious Diet Coke.   I am very attached to it."

Then, you'll never believe what happened.  Erik started to tickle Liz behind her back. Sneaky-like.

"Hey!  Who did that?  Was it YOU?  Was it you, Erik?"

He tickled her again!   She said, "There's a big bug on me!"

 "Did you see it?  It was YOU!  Ok, you are being a stinker again."

 Erik would not admit to anything.  He just tried to tickle her again.  And here is the proof.

He tried to get his hand away before she saw him but she knew it was him.  The End.

Moral of the story:  He who remains silent lives on to tease another day.

Wanted: a new home for some nice pajamas.

How doth Erik humor me?  Let me count the ways.


This morning I walked up to Erik's room hoping and praying the door would be unlocked.  If it's locked I'm in a pickle because he has the only key and he guards it like it's the key of power.  So if he won't respond to my knocking and calling out "Er--ik", I have to go all the way to the front desk and borrow their key, go all the way back to his room, unlock the door and walk in -- usually finding him sitting there watching tv like he hasn't a care in the world.   "Erik, didn't you hear me knocking??? He looks at me as if to say, "what is the matter with you?"  Today the door was open (aha) and he was standing in the doorway with a small photo album, open to a picture of him getting ready to eat a hamburger.  I bet he was waiting for the housekeeper vacuuming down the hall to get to his room so he could show it to her.  ("Here, look at me and this juicy hamburger!")


Erik greeted me, big smile and sweetness.  He hugged me and showed me over to a chair.  First things first, he pointed to his refrigerator and looked at me.  "No, I didn't bring any cokes with me this time.  But next time, I will."


He was dressed in his favorite striped shirt and black wind pants.  But, wait.  His wind pants were on inside out.  That's a new one.  He's had them on backwards before but not inside out.  I just have to laugh.


What have I learned the past few weeks about Erik?  He needs some intervention.  He is turning into a hoarder.   Sweet and Low packets from the dining room.   He's beamed with delight when he opened his 2 drawers and shows me ALL the little pink packets.  Then he pulled out 3 MORE from his pocket.  I guess there may one day be a sweet and low shortage and he will be in business.   How am I going to get those out of his room and return them to the kitchen?  That remains to be seen.


You know that Erik is very picky about pajamas.   If not, read this post and you'll learn just how much he loves certain blue, striped pajamas.  Those "certain pj's" are so past their prime, I had to try again to get him to upgrade.  So I bought new blue, striped ones at Macy's and again, altered them and took them to Erik.   He didn't look very excited.  (of course) but I left them and hoped hoped hoped he'd use them.   Well, the next few times I went to his room they were nowhere to be seen.  I looked and looked but ... nowhere.  Earlier this week I decided to look again.  I was staring at the bed and it hit me...he probably stuffed them underneath!  Yes, HE DID. oh my goodness.  I took them out and showed them to him, "Erik, LOOK, your new pajamas!!"  I hugged them and told him how wonderful they were.  (yes, I hugged them)  Did Erik smile and look happy?  He just stared at me.  not excited.   I left them on his bed and hoped again he would wear them but, no.  I think he threw them away.  (of course) One of the caregivers found them. Sigh...what am I going to do??  His old ones are in my laundry room and I think I need too take them back to him.  He'll probably hug THEM.


Erik and I have a little game going on.   He (secretly) pokes my arm or my head and I act like I'm scared, shocked, upset, or totally surprised.  Then he bursts into laughter.    The more I ham it up the harder he laughs. Well, lately when he pokes me I look at him with a shocked expression and tell him "there's a BUG on me!" He loves that. Or, I'll say a word he made up when he was young; I'll say "I-chi-wa-wa!!!"  He just loves that too.  Don't know what it means but if it gets him to laugh then I'll say it with feeling.  Because seeing Erik laugh like that is the best thing ever.


like the new look of the blog?  I was drawn to the rough, wooden background design.  We're from Texas and we're rough and tough around these parts.  ;)

NO soda left behind

Over the Easter weekend my son and I went by Erik's room.  He was his old teasing self.  When I saw this picture of the two of us I thought that I looked like a giant standing next to Erik.  He's always been a short, stocky guy but lately he seems shorter somehow.   I know I haven't grown taller.

Anyway I was a little worried about him as I left for a week-long vacation with my hubby.  I called and checked on him and heard that he was doing well ... except for one day when he kept pointing to the front doors with a sad expression on his face.  The receptionist there was wonderful.  She asked if he missed me and gave him a big hug.  What a blessing the staff has been to him - and to me.

Well, we returned from our trip and  I had to go see Erik right away to get his laundry AND to let him know we hadn't forgotten his birthday.   He turned 52 while we were on our trip.   Erik used to anticipate his birthday for months, always reminding me of it whenever we talked, I mean EVERY time we talked.   Now after speaking to him about his birthday when I got back I'm not even sure he knew what I was talking about.  
Anyway we had a plan to celebrate the occasion - whether he understood what it was or not.   We (hubby and I) went by his room with a gift from mom. Inside was a new shirt and cap.  He wanted to put them on right away.  Doesn't he look great?

So handsome for a 52 year old.

We told him we were taking him out to dinner.  That got him excited!  We got into our van and drove to Appleby's.  He was thrilled to be going to a restaurant.   When we sat down we looked at the menu and I pretty much knew what he'd like, a cheeseburger.  So we ordered that and he was smiling and winking at us, so happy!!  He got his soda and then his burger and fries.   Toward the end of the meal he made a motion to me like he was drinking a soda and I thought he was telling me he wanted to take the rest of his soda back home so I asked the waiter to bring a to-go cup.  The waiter said he'd bring a fresh soda in a to-go cup.   He did and it was time to leave.  But Erik was not leaving without finishing his first soda.  He gulped it down. There would be NO soda left behind.   We left and got into the car with his fresh soda.   Hubby and I were a little concerned that he not have too much to drink because lately he's had a hard time making it to the bathroom in time, especially when he's had lots to drink.  So I kept the fresh soda in the backseat, thinking he'd forget about it - hoping he would.  I know, horrible sister.   


Well, we got back to his home and, then guess what!   He refused to leave the van.  He sat there, arms crossed, grinning, listening to our pleas to "come on, Erik, time to go".  He just sat.  Nothing would get him to move UNTIL I retrieved the to-go soda out of the backseat and held it outside the van!  Then he got out and we went in, all while he was laughing at us.   That stinker!   We went to his room and got him situated and we started playing with his Dallas Cowboy football.  He was acting so tough, throwing it very hard at my hubby and then looking at him with a tough guy look and laughing.

We never know what out visits with Erik will be like.  This visit was confusing on many levels but that's kind of 'what it is' now.   The following night a family party was held at his home. Entertainment and refreshments.  They're always fun.  So we went.  Erik absolutely loved the singing, he sang right along, loudly, with tears in his eyes.  He tried to eat a cupcake. I rescued the paper part of it right before it went in with all the rest, his fingers, clothes and face totally covered in cupcake.  Oh my goodness.   One day I saw him with the snack they gave everybody, some banana bread cubes and orange slices.  Before I could prevent it, he took the orange slice and ate it, rind and all!  


Today I got a call that his belt broke and he was pretty upset about it.   I'll be buying him a new one first thing tomorrow.  Life with Erik is not boring.

Thankful

Hi everybody.  Greetings from Texas again.  

How are things with my brother, Erik?  The happiest news I've had lately is that on 2 occasions I've gone into E's room to visit him and found him napping on his bed and NOT struggling with sleep apnea.  He was breathing peacefully.  I cannot tell you how glad I was to see that.  I don't know if this is happening all the time and what brought it about but thank you, Lord! 

See that key around Erik's neck?  Well, it goes to his room and it was given to me when Erik moved in.  I was unaware it fell off my keychain onto Erik's floor.  Well, Erik found it and latched on to it.  Then he kept losing it. (Erik doesn't keep track of many things well, except maybe sodas or his beloved blue pajamas.)  One day I found it stuck in a drawer.  Then it went missing again, for about a week.  Until today. The staff finally discovered it, don't know where.  I had looked all over his room for it.

 This picture is of Erik and his favorite furry friend.  I've been told he sometimes spends up to 45 minutes gently petting her.  What a blessing for both of them.

 A few weeks ago there was a big family party at Erik's home. They have them every month.  My hubby and I went and it was a blast. A musician was invited to come and entertain everyone.  He sings all the oldies and everyone loved it, especially you-know-who!  He kept smiling, clapping and singing.  The entertainer did an Elvis song (Hound Dog) and, if you know Erik, he was very happy.  He even got up and danced.

 They served cheesecake at this party and that's one of Erik's favorites too. He polished off his plate and before I knew it, he took my plate and finished it off too!   I'm so glad we got to attend this party with Erik.  He'd been a little grumpy day that day so it was a good ending.  And the fact that he was wearing his black wind pants backwards that evening just made me chuckle.

 Several of the residents at Erik's home have stopped me and told me things that have made my heart rejoice.  One lady said "Erik came and shook my hand this morning".  Another said "Erik comes and sits with me when I play solitaire".  One lady knows Erik loves to tease and she gives it right back to him.   Another woman told me Erik brought "his book" to her to share.  She liked it because it was about his previous group home.  I've seen Erik with some of these ladies.  He's soaking up their attention.  I saw him, surrounded by a group of them, actually point to his cheek and hold it up to get a kiss. That sly guy.  


Last weekend my son visited Erik with me and Erik was in the mood for fun.  He pointed to a corner in the room to get his attention over there all the while preparing to blast him with his tricks.  Look at that face of determination.

Hey Uncle Erik, you tricked me again!

I've grown very fond of Erik's teasing.  I know I mention it often but I'm just so grateful to have this interaction in our relationship since Erik is non-verbal.  It shows me he's in a good mood, gives us something to laugh about and brings us closer.  Haha, I wonder what he'll do today.  

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 Day....so 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...

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.

DOWN SYNDROME INTERNATIONAL PRESENTS THE GLOBAL VIDEO EVENT “LET US IN - I WANT TO LEARN!” IN PARTNERSHIP WITH 68 COUNTRIES FOR WORLD DOWN SYNDROME DAY 2012.

PLEASE WATCH THIS VIDEO AND HELP US CREATE A SINGLE GLOBAL VOICE FOR ADVOCATING FOR THE RIGHTS, INCLUSION AND WELL BEING OF PEOPLE WITH DOWN SYNDROME ON 21 MARCH.

THANK YOU!

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.