Erik always wanted to

Erik knew he was different from other people.  He knew he had Down Syndrome but he didn't talk a lot about it and neither did the rest of us.   But there were instances when it had to be brought into the conversation.   Those times were hard because they involved having to give Erik reasons why he couldn't do something he really wanted to do.  Normal things that people all around him did.

Over the years there were 3 he frequently mentioned.    

1--he always wanted to be able to drive a car.

2--he always wanted to have his own place.

3--he always wanted to have a girlfriend or to get married.

Erik has been able to do 2 of the 3 things on this list.  He had his own place for several years and he had a girlfriend.

When Erik was a teenager he met another girl with Down syndrome who he really liked, and she liked him.  He thought she was so pretty. They would go to dances together and talk on the phone all the time.   She and Erik were an item for years.   But that ended and he told everyone he was looking for a new girlfriend!

Erik's desire to drive a car never materialized and this was a frustration for him.  He thought it looked easy enough, that he should be able to do it.  Our kind neighbor once let Erik sit in the driver's seat of his jeep and showed Erik the brake and the gas pedal.  Well, because of that Erik thought he knew all he needed to know.   Many conversations took place where Erik would tell someone in the family that he wanted to drive.   We'd have to tell him we couldn't let him do it.   He would ask why.   The answer would be because it wouldn't be safe for him.   Erik would be sad and sometimes angry.   Sometimes he'd say, "I wish I didn't have Down syndrome".   

In later years Erik started mentioning how much he wanted a wife.   His buddy Brian had married and he saw how Brian loved having his wife.  Erik thought he should too.  That was a hard one to try to explain to him.   Often we had to say we were sorry it wasn't possible for him to do what he wanted.  We tried to tell him everyone has things like that in their lives, not just him.   I don't want to imply it was hard all the time but to make a point that Erik has normal desires and disappointments.   Those with Down syndrome are known for their happy and loving nature - and that was true for Erik the majority of the time.  

But one thing that gave Erik a lot of joy was the fact that he was an uncle.   He currently has 8 nieces and nephews.  Above, taken last year, is a sweet picture of him with the youngest one.  Uncle Erik's the best!

Mickey Mouse and Erik

In 2000 when Erik turned 40 our mom did a wonderful thing.    She decided he deserved something special and started planning to take him to Disneyworld.  Erik was beside himself.  He had never been there -- our Mom had never been -- and neither had I.  Well, I knew Mom's eyesight was not doing well and volunteered to go along.   Yeah, I know -- big sacrifice.  But Mom might need help, you know, reading the maps of all the wonderful Disney parks. ;-)


I'll never forget Erik's joy on this trip or the expressions on his face.   Also his total lack of fear.  He wanted to go on every scary ride he saw.   I balked at some, but..there was one ride we both rode, waited an eternity in line, but it was WORTH IT ALL - the experience on Space Mountain with Erik started my obsession with that ride.  


It was so fun to go to Epcot with my mom, who's a native Norwegian.   We loved  the Norway section and ate in the Norwegian restaurant (very interesting. You do know Norway isn't known for it's cuisine) But Mom got to speak Norwegian with the staff there and that was neat.   Also at Epcot, Germany section, there was an oompaa band that was performing with people they chose from the crowd.  They were making the people do these funny German dances dressed in funny German outfits.  Well Erik watched a bit, then suddenly handed me his drink and his fanny pack and nervously I whispered, "Erik what are you doing?"  He just pointed right to all the German dancing action and I had to tell him, "Oh, Erik, no you can't interrupt the show."   But, oh my, if I hadn't told him that I know he would have gone into the middle of the show and tried to start dancing along with the group.  But Disney just has that kind of effect on people!  You can't go there without free-falling into the very best of childhood.   And, 2 years later, when I was fortunate to go back with my husband and kids, we (kids and me) rode Space Mountain 8 times in 2 days.  sigh, that was almost 10 years ago, I need to go back. 

Pluto says he can't believe Erik is 40.

Mom and Erik on the Liberty Square Riverboat - Magic Kingdom

Waiting for the amazing firework show at Epcot.

The hotel staff knew we were celebrating his birthday.  Upon arriving back at the room after our first day out in the parks they had left a surprise gift for Erik in our room:  A birthday balloon and a Mickey Mouse photo signed by Mickey himself wishing Erik a Happy Birthday.   Erik's face was priceless, he was sure Mickey had been there and left it for him.  As Erik's 51st birthday approaches that trip remains such a sweet memory.  

what Erik's been doing

I spoke to the director of Erik's group home last week.   She told me how he was doing.   He was well, which was good to hear.
   
She also told me about an experience that warmed her heart.   The week previous, she was walking between the 2 group homes, grappling with a lot on her mind.  Approaching one house she heard something and couldn't place what it was.   She kept walking and came across the front porch of Erik's house she saw him sitting on it, walkman headphones on, singing at the top of his lungs.  He didn't see her.  She couldn't make out what he was singing but every now and then she thought she heard "God" or "Jesus".  She stopped and listened and felt blessed.  There Erik was - singing praises very loudly on the porch - in a way that only Erik could do.   She told me "if I could only have videotaped that moment, every person we showed it to would be equally blessed."  Loved it that Erik was hanging out during the afternoon sending up praises to God.   I can imagine it very well.    Read a previous post about Erik's singing here. 

On the flipside she also told me how she had seen Erik's stubborn-ness come out one day.   He's got a reputation at his group home for being easy-going, which is usually true.  But not this day.  The Promise Singers had just given a concert and they were being fed lunch.  Erik had his tray of food and sat down, but not at the table that had been reserved for their group.   The director went over to Erik and tried to get him to move and he looked at her like she was asking him to do the craziest, hardest thing ever - and he was not going to move - he wanted to EAT his food.  (you remember how Erik feels about food?)  Nothing worked.   She said she only wished she'd had a Dallas Cowboy cap or something to place at the other table then maybe he would have moved.  That's funny, it might have worked.


But this reminded me of another time my mom told me about.  When Erik was growing up sometimes things didn't go his way and he would be upset.  So he'd take his little suitcase, put some things in it, and go sit on the curb outside our house.  He'd sit there.  Waiting for someone to come take him away from where he wasn't getting what he wanted.  We don't know who he thought would rescue him from his fate. (Batman? John Wayne?) It was good his little rebellions never lasted long.  

Celebrate WORLD DOWN SYNDROME DAY 2011. Watch this video.

March 21 is chosen as World Down Syndrome Day because the date "3/21" represents the triplication of the 21st chromosome. People with Down syndrome have 3 copies of the 21st chromosome instead of 2. It is celebrated by Down syndrome organizations all over the world.

This video honors World Down Syndrome Awareness Day 2011 and is made in partnership with 45 countries. Precious faces and radiant smiles from all over our world. This makes my heart happy. If you have a son, daughter, brother, sister or friend with Down Syndrome this tribute's for you too. 

Let the heavens be glad and let the earth rejoice!   Psalm 96:11

Dallas Cowboys "True fan"

Erik doesn't know I'm writing a blog about him.  I'm not sure he would understand what a blog is or what it does or what the name means.  Maybe 10 years ago when his thinking was clearer he might catch on a little but now he wouldn't.   He'd like seeing pictures of himself on the computer though.

I wish he knew I was writing because I think he'd like it.  But, IF he knew, he would insist I tell you one thing.   Imagine in the picture above he's saying it:  

"I a True fan" of the Dallas Cowboys.  

(I don't know where he came up with this "true fan" expression, but he said it all the time and it's so cute)

Those of us who already know this fact will chuckle, because it's an understatement of sorts.   Erik loves this team. Most of his life, Erik felt like he was THE first and foremost fan of the Dallas Cowboys.  There was never any other team for him, only them.  When they scored Erik high-fived everyone in the room. Erik watched them, wore their colors, would call me and make sure I knew when they were playing.  If he could have worn Dallas Cowboy underwear or pajamas, I think he would have.  But he's had Dallas Cowboy socks, caps, shirts, phone holder, wallet, mugs, keychain, blankets, rugs, etc.   He missed them during offseason and would call and tell me, "Cowboys play in August". 

When Erik's best friend, Brian had a birthday, it wasn't too hard to guess what he'd give him.  Seeing Erik here - it's so sweet.  He's, of course, wearing his jersey, and is intently watching Brian's reaction to this gift.   "Wow, a Cowboy jersey!"

When Erik moved into his new home in Brownwood, this was his room...Cowboy territory.  You can't see, but there' a big screen TV on his dresser where he could watch the games.   


When  Erik found out the Cowboys were building a new stadium, oh my goodness, he was so excited.    I would show him pictures of it on the internet.   Once we drove by it while it was being constructed and he was glued to the window, with such an expression of awe.  Last year we had planned to bring Erik to town for his summer visit and tour that stadium.    Because of health problems for me we never got to do that.  I hope we'll do it this year.  Erik's mental decline has made me sad in that now when there's a Cowboy game on he doesn't follow it like he used to and it sometimes doesn't even seem to register that the game is going on.  It's not like it used to be.   When we take him to the stadium I wonder how he'll take it in.  I hope he'll be able to enjoy it.  

Here's Erik last Christmas.   We really need to stop giving him so many Cowboy things.


But that reminds me, there was one special Cowboy item he received several years ago.    Our dad was able to get Herschel Walker to sign a Cowboy T shirt specifically for Erik.    After hearing that Erik had participated in the Special Olympics, Herschel wrote on the back of it:   "To Erik, from one Olympian to another." and signed his name.  In fact, I think the shirt in the picture above is that special shirt.  For the longest time we wouldn't let him wear it because it was so important.  But he's wearing it now!

watch this movie "Temple Grandin".

Last night my daughter and I watched a movie that had me cheering for a courageous woman with autism.   The movie, a true story, was produced by HBO and called "Temple Grandin".   Have you seen it?   Temple's story is a testimony to those have special needs and struggle to live in a world in which they are not understood but in which have much to offer.  It's just a fascinating movie.  I also like it because it contains animals and cute western wear.    


I appreciated how the connection was portrayed between Temple and her college roommate.  Her "uniqueness" had scared off previous roommates.  But, wouldn't you know, the roommate she needed came - another person with special needs.  Seeing how they accepted and befriended each other makes me think of my brother Erik and all his buddies at Aldersgate.  I could write so much more about it but don't want to spoil it for you...


check out the promo for this film here.

Erik's home in the country.

I've mentioned before that Erik moved 4 years ago to a group home.  He had been living on his own in a condo right across the street from his job at the hospital.    It worked ok for a while but he started to need more assistance.   So we began to look for a different situation.   Our dad heard of a group home for mentally challenged adults in Brownwood, Tx and we went to check it out.  It's called Aldersgate Enrichment Center.  

Here's a picture below of that day.   Here Erik's in the workroom discovering what some of the residents do in their jobs.   In this area, they assemble plumbing parts.  

As we checked it all out we were impressed, and Erik was very interested so we decided to move him.   To be honest, I really struggled with him living so far from us, 3 hours away.  For a long time, we could reach him quickly if he ever needed anything and that would change dramatically.   But he seemed genuinely glad to be moving to the country so that was a good sign.

Here's moving day below.   Erik got a nice furnished bedroom.  That's my husband helping with his things ... and there's Erik, glad that he can put up all his Dallas Cowboy stuff, which - if you know Erik - he could never leave home without.

Driving away from him that day was hard.   I kept wondering - would this be the right decision?   But now I know.   Erik's so happy in this place.  He lives in one of 2 group homes set high on a hill with beautiful Texas views.

He has buddies close by and there are caring house-parents around the clock.  They have devotions every morning and walk down the hill to the workrooms and do their jobs together and afterwards kick back and relax.   They eat their meals together, watch football games, sing in choir, go bowling and go to dances.   And Erik still gets to earn a paycheck, isn't that amazing?   He loves going to Walmart to cash it and buy his carton of diet sodas. 

  

We try to visit Erik as often as we can.   Here's one of our first visits after he moved in.    We're sitting outside his home and I can tell by Erik's smile he's happy.  I remember the friend on his left was so sweet to help Erik get acclimated to his new place.

I've come a long way in my feelings since we moved Erik to his group home.   I've let go of my notion that he "needed" his real family.  I now know it's the most wonderful situation for him we could ever find.   Over the years he's been there he's received love abounding.   There are the normal struggles as in any case with people having to get along, but I've learned so much from seeing him and his friends interact.  They are examples to me. 

The picture below shows Erik again outside his home with his most special friend.  This sweetie is a treasure.  She's so helpful to Erik, always making sure he's ok.      

I believe he's the only resident there currently who has Downs.  And he ended up working in the part of the workshop that assembles those plumbing parts and it fits his stage of life well.  I'm so proud of him!

I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well.  Psalm 139: 14

Down Syndrome: Expectations exceeded

Many who have Ds in their family wonder if their loved one will ever get to live a normal life.  Many do - they exceed their expectations.   There are challenges with having a handicapped family member but when you look back on their life and see their accomplishment, it gives cause to be grateful.

Erik was my parent's first child.   When he was born in 1960 it was clear that he was handicapped.  The doctors actually sedated my mother out so she wouldn't know right away.    It took days later for her to find out.  My parents were advised to put this baby in an institution, the common occurrence back then.  

They were shaken-up but took him home, loved him and treated him like any other baby.    A few years later they were able to give him occupational training at a special school near our house.  

I've mentioned before that Erik worked at a large hospital for a loooong time, over 25 years.    I don't remember when he started that job - I was probably in high school though.   His job was a perfect fit and he loved it.   I'm not sure but I think he started out cleaning the floors.   He had a hard time with the buffing machine or something so for the majority of those years Erik worked in the laundry department, collecting linens.   This was great for him because it meant he got to make the rounds all over the hospital, seeing friends along the way.  As you know a hospital is like a miniature city and he knew it like the back of his hand. 

I remember: he'd come home from his workday, settle down to rest with a diet soda and sigh a big sigh like he'd done a good day's work -- which he had:  arriving at 6 a.m, walking long distances and lifting heavy loads.   He was strong as a horse.

People with Downs make the most wonderful employees.  Erik was always on time, rarely sick, extremely dependable.   He received "Employee of the Month" awards frequently.   Do I sound like I'm bragging?? 

   

Last November Erik was visiting us and he wanted to go back to the hospital and see it.   As we were walking down a main hallway we came across the employee wall.   Erik's picture is still on it even though he retired 4 years ago.   Here he is:

And here's the man! wearing his uniform, ready to do his job.    This makes me smile, it was obviously taken during his "I want to grow a mustache and be my own man" stage.   Shaving was never something Erik relished.

Do any of you know of any other handicapped young adults who are being productive employees?    There's a young man at my local grocery store who has a mental handicap.  He bags groceries and is such a sweetie.  He always tells the ladies that they're gorgeous and calls everyone his favorite customer.  People love him! (of course, wouldn't you?)  He amazes me and makes me think of Erik every time I'm there.  I love love love seeing businesses hire handicapped people.