Down Syndrome: communication ups and downs

Most of the time we all have conversations effortlessly.   Lately I'm learning to see the precious-ness of that. 

All his life, Erik has been slow at conversation.   You had to allow him extra time to get his words out, but he got them out in his simple way and made his needs/wishes known.
As I've written before, things have really changed in this regard.   This has been one of the largest set-backs for Erik we've experienced and it's very sad.   He's not been officially diagnosed with Alzheimer's but for a few years now, he's been on 2 of the drugs that slow that horrible process.   The last few times Erik's visited our home he did a lot of his communicating by pointing at what he needed.     Or he'd try to get the words out and we'd wait.   Often it was clear he was struggling so we'd finally take a guess at what he was trying to say, then he'd say "yeah".  He seemed relieved that we helped him.    Knowing this is an area that Erik where Erik is losing ground makes our phone calls more sweet and meaningful.   I'm just happy to hear him on the phone even if the same conversation happens every time!


here's how it goes most every time:
"Hey, dis Erik."
"Well, Hi Erik!  How are you??"
"I fine!  How you?"
"I'm just great Erik, it's so good to hear from you.  Did you have a good day?"
"Oh yeah!" (said with such sweet feeling)
"Oh good, did you work today?"
"Yeah."
"That's good, you're such a good worker Erik."
"yeah."   pause.... "How's ..... big Mike? (my husband)
"Mike's fine Erik, he's at work now."
"at work?"
"yes."  
pause......."How's ....um... How-you been doin?"
"I'm great, Erik.   Did you see your friends today?"
".....um....um.....Penny say hi."  (Penny is his very favorite friend at his group home)
"Oh, you tell her hi from me, ok?"
"ok (long pause).....How Mike?"
"Oh, he's just fine, just fine."
(then we might go into one or two other things)...
"well, I got go now."


I remember a time when Erik would call and tell me in great detail what he had for lunch and how good it was.   (Food, one of his favorite things.  True for us all.)


He'd call with ideas he had for something..."Hey, I got good idea!"   He would tell us the good idea and we'd say how great it was and then he'd point to his brain as if to say "I know!"


If Erik did something we weren't too happy with, something that was dangerous, (like leaving his condo garage door open) we'd give him a little talk "Now Erik......"   he'd understand it all but would put the conversation to a close by saying "Be Cool."


Whenever he and Mike were driving around he loved to tease Mike by telling him (while cracking up), "hey Mike, you missed your turn!"


Also in the car he'd get in a mood, where knock-knock jokes spilled out of him.  Erik would make up his own....as in:
Erik: Knock knock!
Mike:   Who's there?
Erik:  Shoe
Mike:   Shoe who?
Erik:  You have a hole in your shoe!!!   Then he'd look so triumphant, laugh and do another one.


 He also would tell us in great detail why someone at the group home had made him mad and how he felt about it.    He would get very worked up and animated and always end the outburst with, "I don't like that!!"   (Oh really? thank you for letting us know -- we weren't sure.)  :-)


Or, oh my goodness, he reminds us of his upcoming birthday and how old he's turning.  Last year when he was turning 50 that was, of course, a huge thing.  He kept saying "I gon be 50.  Five-Oh!".  For the past 20 years, that fact (his birthday) was the second-most frequent topic he'd want to talk about.   


But by far, the most beloved topic Erik wanted to talk to us about was (trumpets sounding) to make sure we didn't forget to change our clocks when day-light savings time came around twice a year.   He told everyone, I mean everyone, not to forget that!  Sadly, he hasn't told us about this in months or even been aware that the time changes have happened.
So, my question for you is...have any of you experienced this kind of slowing down of communication with your family members?   What was it like for you?  

"I know all the words"

You know, I wonder if others with Down's sing the way Erik sings. It's quite a unique experience. If you ever heard him sing you'd think he didn't know ANY of the words of the song or how to keep time because he's a little "off". But he'd be singing in such a sincere way you'd start to think maybe you are the one who has the words wrong, it's just so cute to see him give it his all. And, oh my, does this boy like music? When he worked at the hospital and they'd hold talent shows he'd dress up as Elvis or George Strait and give it all he had. Wish I had pictures of that to show you.

Erik lived with our family for a while in 2006. I'd drive him to to work in the wee hours of the morning and we'd listen to a CD with hymns together and sing them all the way there and back home that afternoon. Hearing Erik's praises to the Lord must bring such delight to Him. Oh... such a precious time. The picture here is of the time Erik lived with us. Our sister, Becky, sent him an ipod shuffle that her kids weren't using and we put some Johnny Cash on it and gave it to Erik. He put those earbuds in and off he went, as I took this picture -- I wish I knew what particular song he was singing. Once our dad asked him about his singing and Erik intently said "I know all the words"! Well, between you and me, I don't think he did, but it mattered not at all because Erik singing is such a sweet, joyful thing. Last Christmas Eve he went to church with Dad and Carol, our stepmom, and they said he again - gave it all he had. :)

Down syndromes are the gifted ones

If I didn't have an older brother who had down's syndrome I'm pretty sure I would not know how to behave or interact with people like them. It'd be easy to stare and think how different we are from one another. I guess most people who don't personally know someone with this handicap could be unaware that they are very much like them with similar emotions and dreams.

Down's Syndrome occurs because of the presence of an extra chromosome, they are born with 47 instead of 46. This is also now medically referred to as T-21. I loved something I read on another blog where a young girl wrote about her DS sister: 'My sister thinks she is like a cake that has extra sugar...."I am just sweeter, and more sugar is better anyways..." People who have Down's Syndrome are notorious for their sweet, fun spirit.'

I know this is true. Erik touched lives and is continuing to do so w/ his gentle, sincere manner. Many things stand out from his life in this regard:

Anytime I spoke to Erik and told him I didn't feel well or that anyone in our family was sick he always responded, "Awww, I pray for you", or " Awww, I pray for them".

Growing up, he appointed himself as the welcome wagon in our neighborhood. One neighbor told me as they were moving in Erik came along on his bike wanting to say "Hey, I'm Erik!" Another neighbor told me that Erik knocked on her door and said Hi and ended up visiting for a while with her elderly father-in-law. She said he never forgot about his visit with Erik.

One night many years ago my parents were next door at a dinner party with friends, Erik made his way over there to say hi and see what all the fun was. He sat at the table with them and noticed one man was smoking. He looked at this man (who was a very successful businessman) and said, "Why do you smoke? Smoking killed my granddad. I don't want you to die." This man said later he decided to quit smoking because of Erik's gentle words to him.

Erik's co-workers at the hospital always loved having him around. He checked on them and they watched after him. Erik's retirement party from the hospital where he worked for over 25 years was a huge event. People were in tears having to say good-by to him. His boss arranged with the mayor to have that day - January 31, 2007 - declared as "Erik Barret Day". The picture below is Erik at the party holding the proclamation. Whenever Erik is back in this area and we take him to visit the hospital, he is showered with love

Erik continues to touch lives and he doesn't even know he's doing it. God uses him. At his group home he's made such amazing friends. Seeing them together is so moving. One time we drove Erik back to his group home after a holiday. We arrived as his friends were eating lunch. He hi-tailed it over to the lunchroom, opened the door, went in, threw up his hands and announced "I'm back!!!!"..... resulting in more showering of love.

God uses Erik in my life, he helps me to have a softer heart. I need lots of help in that area most of the time.

Have you heard of a man who used to coach the Aggies and the Dallas Cowboys, Gene Stallings? He had a son Johnny who had Down's. Johnny passed away at age 46 and I found a tribute to him which sums it all up:

Every life matters. The life of Johnny Stallings teaches us that God can use anyone, no matter how insignificant in society's eyes, to make an impact on others. Johnny had none of the things that you and I take for granted, but Johnny touched countless lives in ways none of us can even begin to imagine. Our materialistic, success-driven culture doesn't really know what to do with people like Johnny. Society certainly didn't know what to do with Johnny when he was born 46 years ago. But God did.

Erik and his best buddy

Erik loves to hang out with his friends. A few years ago he was working in a large hospital. I kept hearing him talk constantly about this man called Brian. Then one day I called Erik's condo and a strange voice had left the message on the phone recorder saying that 'you've reached Erik's place....' Well I thought, "WHO is this person?" It was Brian. Once I met Brian I knew he was a gift from God to Erik. Erik loved having him over to his condo and watch sports. Brian and Erik became best buds. If Brian liked something Erik liked it and if Brian didn't like it, well, Erik didn't either! Then Brian met someone at the hospital, a nice sweet girl he married and Erik proudly served as their best man. Erik and Brian and Michelle did lots together: the State Fair and other fun things. What a blessing. When Erik retired from the hospital and moved it was hard on Brian .. and on Erik. But they've stayed in touch and managed to see each other when Erik's in town. This picture was taken last summer when Erik's choir, "The Promise Singers" sang in downtown Ft. Worth. Brian and Michelle were there - cheering Erik on. Watching Erik sing in that choir makes Brian cry. He has the biggest, softest, most beautiful heart. And today is special because it's Brian's birthday. If Erik could I know he'd give Brian a huge "HAPPY BIRTHDAY BUDDY!!" with smiling high-fives. Thank you Brian, you are a God-send to your buddy.

Erik never met a hamburger he didn't like.

Erik is a foodie. Mealtime -- is it! Eating -- serious business. Especially if it involves a hamburger, soda and fries.

So many times I've heard Erik emit little noises of delight while eating. This was very nice particularly if I happened to be the chef. Sometimes he'd stop eating just long enough to look up and say quietly, "Is good". Then, back to eating.

We never knew where he put all the food. He rarely left any on his plate. The photo above was at Fat Daddy's in Coppell. (their burgers are good!)

The picture below isn't a hamburger, it's at Subway, another of his favorite places...BUT look at that face. He's enjoying life.

This one below is at Chili's in Brownwood TX, near his group home. His eyes are saying: Liz just let me eat. I know that's true because when Mike and I were engaged we took Erik out one day for lunch. Mike really wanted to chat with Erik, get to know him better. Erik was trying to eat his wonderful lunch (chicken fried steak) and he got a little frustrated with Mike and finally said these now famous words: "Mike... eat now, talk later."

This one below is my favorite, taken on his birthday in 2006, at Fuddruckers in Irving, TX.  THIS is happiness.

These pictures are so fun to look back on but they remind me of the last time we took Erik out for a burger, 2 months ago; it didn't go so well. He didn't have his usual eating gusto and it seemed like he didn't feel well but he couldn't tell us what was the problem. As I said before, he's having such a hard time getting sentences out now. So we were just left with trying to guess what he needed. We worked it out, but as when all of us age, things change. Erik's needs are changing and we'll adjust to help him as best we can.

Find rest, O my soul, in God alone; my hope comes from Him...Psalm 62:5

know my bro

Erik has been an easy person to know. He's never been complicated. Having him in our family has given me an appreciation for simplicity. His conversations were rarely deep or complex, and I'm prone to that style of conversing most of the time as well. I wish I could remember more about him when we were little but I mostly just recollect that he was always there. I was born just over a year after him. I don't remember fighting or arguing much with him which is good. My younger sister and I - ha, that was another matter. But Erik's presence when we were growing up was just a natural part of life.

Now, much later, with all family members dispersed it's harder to maintain continuity. For the past 4 years Erik has lived 3 hours away from me. Other family members live farther. So most of our communication with him is over the phone or the few times of the year we see him. Just today he called and said, very haltingly, "I want see you; go over there". Hearing him say that was sweet.

But back to knowing Erik. Here are things that made him happiest:

eating food! more on that later

diet sodas -- probably too much

The Dallas Cowboys - "I'm a true fan"

His birthday - he starts talking about it months in advance

laughing and teasing

singing -- Elvis, Country music and in the choir, "The Promise Singers"

dancing

bowling

when he was young, riding his bike around the neighborhood being friendly

meeting people - never met a stranger

Chuck Norris, Mr T

his friends

I'm sure there are many I'm forgetting. Erik's age limits him so much now, it's hard for him to even get a complete sentence out. But I can tell you what he likes and that makes me happy.

Can this connect us to each other?

I do not consider myself a good writer at all, but many things prompted me to start this blog. The main thing is, of course, Erik's life. He's the first-born of 4 (I came after him). His life is an amazing story of what a dis-abled person can achieve. In his case, he achieved far more than anyone could predict. He's been very blessed, had good health, some education, was a Boy Scout, participated in Special Olympics, and the most impressive things of all, held a job at a hospital for over 2 decades. But now he's growing older. About 4 years ago we started seeing signs of confusion. It was time for him to retire from his job. Last April he turned 50. Quite rare for someone like him to reach that milestone. And now he's showing some advanced stages of old age, it breaks my heart. And it make me wonder what's in the near future for him and for us. It seems like there is almost no support for families of adults with Downs syndrome or a way to connect us to each other. Maybe this will be a way.

When I was trying to name this blog, I thought of what I've heard countless times when I answer the phone. "Hi, this is Erik!"  It's so funny, Erik's voice is so distinct I always know it's him -- but he wants to make sure. :)

Hi there, friends! I'm so excited. This is my first attempt at reaching out to the blog world.

I'm Liz and this is my older brother Erik and he's the reason for this endeavor. Through this blog I hope to meet many others who have siblings (or other family members) who have Downs.