no happy camper, Elvis and hugs

A Joyous Merry Christmas to all of you from Erik and me.

I was in the middle of baking today and suddenly felt like talking to Erik.  Called up the group home and Shirley, one of his supervisors, answered.   I asked how Erik was. She said he's been ok -- up until last night.  For some reason something bothered him in the night and he got upset and it disturbed his sleep. Made me sad. She said he sometimes has these angry episodes at work.  Shirley's his work supervisor and she said you always know when he's upset.  He'll throw things on the ground, clearly not a happy camper.  It doesn't take a long time to talk Erik back to his old self but it's frustrating because no-one really knows what set him off.   I thanked her for helping Erik so well when he's agitated.  Then Shirley told me that she had a special spot in her heart for Erik.   Lord, thank you for sweet Shirley.   


She said sometimes when they're working (assembling plumbing parts) the music will be on and Erik will sing along. But, one time Elvis' Teddy Bear song came on, and.... Oh, she said, he belted it out - singing and twisting his hips.  I wish I could have seen that. Erik has always loved Elvis. Right about then, Erik appeared in her office.  His ears had perked up as he heard her talking to me about him from the next room. so funny.  So I got to visit with him.  He's happy about Christmas coming.


I've learned from Erik's past few visits that being away from the group home is harder and harder for him.  I think many of the residents who live there are the same, they're eager to get back.  When Erik was here over Thanksgiving he appeared very sad. I asked him if he missed Aldersgate and he nodded.  I told him he was going back real soon which made him visibly happier.  


 Returning Erik after his break, my hubby and I unpacked his case in his room, spoke to the weekend houseparent on duty.  We stepped outdoors to go see what was happening at the other house.   Outside in the other yard we saw Penny and Roxanne (2 residents) walking the dog.  Well, Erik started RUNNING over to Penny with his arms outstretched wide, and Penny smiled real big and RAN over to Erik with a huge hug....it was like watching a scene from a movie!  (note: Erik never runs anywhere; his normal speed is slo-o-o-w)  Penny hugged us real hard and told me, "I watch out for him, I always make sure he's ok".  Oh Lord, thank you also for Penny, the "Little Mama" of the group home.  Delight to our hearts.

Erik and Penny, taken in '08.

The Pajama Showdown.

Five years ago Erik lived with us for a while.  During that time I noticed he needed new pajamas so I bought him a pair at Target.  Here he is, happily wearing them for the first time.

Erik has really become uber-attached to these pj's.  They are all he wants to sleep in summer or winter.   The inevitable has happened.  They're getting worn out.  The bottom part of the pants (the part he sits on) are wearing thin.   Erik has not been aware of this and really doesn't care. He's not jumping up and down to retire this pair because we've tried.   Last week when he was visiting us I saw how bad the bottoms were and decided that I just had to try again.  I went shopping hoping to find a set, a pair of matching tops and bottoms because that would be similar to the beloved set.  No luck.  So I bought a new pair of striped pants, ones he could wear with the current button-down top.  I knew they weren't a perfect match but....in order for Erik to like them they'd have to be exactly like the ones he had and there's no way I'd find exact replicas.

I brought the new pants home and put them on his bed.  He found them later, took them in his hand, came to me in the kitchen and... just looked at me and looked at the pants.   Me: "Oh Erik, those are your NEW pj bottoms."  He wasn't smiling.  I took them back to his room and friends came over so we got busy.  Later after friends left I mentioned to my husband that I bought Erik some new pj pants.  Erik was listening and after a bit he got up and walked to his room.   We heard the door close.   Hubby and I wondered what he was up to.  I had a suspicion, and it wasn't that he was joyfully trying on the new pants, which, by the way, I had spent an hour hemming!   He emerged wearing: yes, you guessed it, his old trusty pj's.   I guess he thought if they were on his body they weren't goin' anywhere.   oh boy.

I took him to his room and we had a talk.  "Erik, I know you love these pajamas, but there are holes in the back of them."  Erik (aghast) "Where?"   I touched the holes.  He could feel my fingers, I know he could.  I took his own fingers and showed him where the holes were.  I said the new pants would be just great, and he could wear the old top with them and it would be so-o-o-o nice.   He crossed his arms and glared at me.  Then he shook his head at me, unblinking.  Erik's verbal ability is limited but he needed no words to get his message across.

ok.  what to do.  We both went back to the living room where hubby was.  He asked how it was going and I said quietly that we were going to have some issues.  Erik was silent, and tension was present.   Then he got up, went to his room. We heard one door close, then another door close.  We waited a bit and hubby went to check on him.  Then I heard hubby say, "Erik unlock these doors right now."  He promptly opened the doors (thank goodness) came back to the living room, all content and cordial and even gave me a thumbs-up, like all was A-ok.  Hmmmm.

We sat there a while, continuing to watch a Toy Story movie, and suddenly, I knew.  He had done something with the dreaded new pj bottoms!    I whispered my suspicion to hubby and after a bit he went to look for them.  He found them, alright, hidden in the back of the closet.  So, that's why Erik was flashing me the thumb's up.  He took care of the problem and thought "no more ugly, new, bad bottoms for me!"

Hubby took them and put them in our room and the next day when I packed Erik up I put them in his suitcase to take back to the group home.  We chose not to fight this battle with Erik.  In the scheme of life it's a little thing.  But as his family we want him to look well-cared-for and as well-groomed as possible.  Worn-out pj bottoms don't do that.

Erik is resisting change with a vengeance and who can blame him?  A person who suffers with Alzheimer's needs regularity.  I bet at this moment he's happily wearing the old pj's and doesn't care at all about the holes.   I only wish I'd bought a spare pair of those pj's that day in Target 5 years ago.

When I unpacked his suitcase back at the group home, I hung the new pants on the hanger right next to the old ones.  I wonder what he's done with them.

Erik still happily wearing them this past summer.

the power of an encouraging heart

Today I ran across an email one of my friends sent me 4 years ago.  She found a story

about a Down syndrome boy named Johnny who worked in a grocery store.

my friend's email that day said:

Thought you might enjoy this.  Made me think of Erik.

You can make a difference~ no matter who you are or where you are!

click HERE and be inspired.

Chivalry still lives.

I was reminded today by one of the house moms at Erik's group home how much Erik blesses others by being polite, especially to the ladies.   House mom Barbara told me that Erik watches for her to arrive at the home every morning just so he can jump up and hold the door open for her.  So sweet.  Isn't she blessed?  It reminds me of the countless times Erik has done that for me and every other lady he's around.   Many times over the years when we were about to dish up our food or go into a building Erik would say, "Yadies first" (L sounds were hard for him).  He would extend his arm and smile, urging the ladies to proceed as if he had all the time in the world and wanted you to feel special.  He's a gentleman and enjoys being one, even today with his faculties fading.  That just makes me happy.

Best laid plans

     It's that time of year again, when our family plans Erik's holiday visits. His group home closes during the holidays so we go get him and bring him to family -- in either Dallas or Houston. This year our family in Dallas will have Erik's company at Thanksgiving and my sister and brother in Houston will have him at Christmas.  Erik's already looking forward to it, he loves holiday time.   
     Last year the holidays were a blur, a very crazy blur. Erik was in Dallas for Thanksgiving. We had a wonderful Thanksgiving meal at our Dad's. Erik hung out with us all but I noticed that he wasn't glued to the Dallas Cowboy game as in the past. I'm sad he can't follow the game like he used to. He was very quiet and detached.
     And then Christmas came around and we were planning to take Erik with us to San Antonio to spend the holiday with my husband's family.  Erik had never been there so I was a little concerned the unfamiliarity of the surroundings might be hard for him but everyone in the family assured me they'd help him feel welcome and ok.  During the nights, Mike and I were going to stay with Erik at a hotel near my in-laws.  We had it all worked out.  Then, the day before we were to leave for San Antonio, our son came down with a really bad stomach bug, really bad. (earlier that day he had gone to a cajun place and eaten alligator. Yep he really did. We later discovered it wasn't that that caused his bug. But he learned that he'll never eat it again)  We were up with him most of the night. Erik was sleeping in our son's room on a mattress on the floor so we put our miserable, sick son in our daughter's room, and the rest of us played musical beds so, hopefully, no one else would get sick.  Ugh, please, no one else get sick.  We (I) do not do well with digestive issues.   
     So, we were wondering if we should even go on our trip.  Then my dad and stepmom did a wonderful thing.  After hearing what we were going through, they said they would come pick up Erik, keep him with them and take him back to the group home after Christmas. Wow.  I will forever be grateful to them for volunteering to do that. 
     We did make it to San Antonio and we made it to the Christmas Eve service.  After a while our son started to feel more like himself and then...our daughter caught a respiratory cold that wiped her out, and then... in the wee hours of Christmas Eve my husband came down with the symptoms of that horrible stomach bug, and it attacked with a vengeance.   If we had had Erik with us in our hotel room that night and all the following day I don't know what we'd have done.  If Erik had caught that bug...I shudder to think. It was a divine provision that he was back in Dallas.  My hubby and I spent all of Christmas Day in that hotel room, trying to make it through the day.  I didn't catch the bug (thank you, Lord) and when we finally all got together again at my in-law's house we were a very bedraggled bunch.   Christmas Day in hotels is very lonely and quiet, especially when family and festivity is 10 minutes away.   
     I'm learning to accept what the Lord brings. We make our plans but ultimately His purpose prevails. Aren't there 2 verses in Proverbs about that very thing?  Yes, Proverbs 16:9 and 19:21. He's in control.  When I trust Him things work out better.  So, I'm already telling Him I'm trusting what he brings this holiday season.  I'm trusting that Erik will have a good time.  
     And I would love to have holidays with NO you-know-what.

Hi again, friends.  I'm still here.  I know, it's been a while since I've

posted anything.   Everything's fine and Erik's fine.  I've just been 

wondering what to include on this blog that I haven't already written.

I've kind of run out of "Erik stories" ... for now.   

Then today I saw this article so beautifully expressed by Amy Julia 

Becker, mom of a 5 yr-old daughter w/ Ds.  I love her description 

of recounting the stories of her children's birth, and deciding to tell

Penny more about the day she came into her life.    

She is 'right on' in her view of the cultural attitudes associated with families

like hers. She asks the hard questions:  Is a life with Down syndrome a life

worth living?  Is the burden such a life places on a family and society

too great?

Honest and inspiring, so I share it with you.

October 3, 2011, 1:10 PM

Has Down Syndrome Hurt Us?

By LISA BELKIN

Of the growing genre of eloquent parents describing what it takes to raise a child with a disability, Amy Julia Becker is one of the best. She has writtenoften for Motherlode, about how Down Syndrome means life for Penny is different, and exactly the same.

She recently published a memoir of her family’s tale, called “A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny.” To commemorate the moment I asked her to write here for me one last time, about the question every parent asks in one form or an other at the start of the journey.

HAS DOWN SYNDROME HURT US?
By Amy Julia Becker

When a car trip gets too long, when they are stalling before bedtime, on a rainy day, my kids ask me to tell them the story “’bout when I was born.” They can recount many of the details: that William’s head was very big (they giggle every time I explain that the obstetrician had to vacuum him out) and that we had to wait and wait and wait for Marilee and that for all three of them I got medicine to make me feel better when we went to the hospital. They know that their dad and I spent three hours getting Penny’s nursery ready before I called the doctor. But for a while, when I told Penny’s story, I left out one crucial detail. I didn’t tell her what happened two hours after she was born, when a nurse called my husband out of the room and he returned with wet eyes and a sentence I couldn’t comprehend: “They think Penny has Down syndrome.”

Earlier this year Penny and I were alone as I retold the story again, and I decided it was time to let her know that the day of her birth hadn’t been all rejoicing and ecstasy. I got to the end of the familiar narrative and I added, “After you were born, I was scared, because the doctors told us you had Down syndrome.”

She cocked her head to the side. “Why you were scared, Mom?”

“I was scared because I thought Down syndrome would hurt you,” I said. I paused, knowing I had only told part of the truth. “And because I thought it would hurt me.”

“Oh.” Penny blinked her eyes the way she does when she’s thinking hard about something.

My thoughts moved back to the wave of fear and sadness and anger that had engulfed me in the hospital, the darkness that lifted only when Penny was in my arms, when I stopped worrying about the years ahead and instead gazed at her pudgy round cheeks and waited for her deep blue eyes to flicker open and believed for just a moment that everything would be O.K.

And, five years later, everything is O.K. My fears about Penny’s condition were largely unfounded. She hasn’t suffered major health complications and it has not been difficult to love her. I can even say that I’m grateful to have a child with Down syndrome because through her I have learned to value more of my fellow human beings than I might have if I had given birth only to “typical” children.

But I haven’t told Penny that the general cultural perception of Down syndrome continues to hurt us all. The hurt comes in two forms. One, the well-meaning but simplistic pronouncement that people with Down syndrome are “sweet and loving angels.” This attitude dehumanizes individuals with Down syndrome by assuming they can’t and don’t experience the full range of human emotions and needs. A similar hurt comes in the statement I heard all too often when Penny was first born, “God only gives very special parents such special children.” Down syndrome became a litmus test for my parenting skills, but I was well aware that I didn’t know anything more or have any greater capacity to love my child than the woman who gave birth in the room next to mine.

The other way that cultural attitudes toward Down syndrome hurt us is through the assumption that individuals with Down syndrome and their families would be better off not living at all. At this moment, most women who give birth to a child with Down syndrome do not know about their child’s extra chromosome until he or she is born. Only 2 percent of all women seek a definitive diagnosis of Down syndrome or other chromosomal abnormalities through amniocentesis or chorionic villa sampling during pregnancy. But of the women who receive that definitive diagnosis, the vast majority (90 percent) choose to terminate their pregnancies.

Recent advances in prenatal testing include a non-invasive blood test for all pregnant women with 98 percent accuracy in diagnosing Down syndrome in the ninth week of pregnancy. It’s not the test that bothers me, nor the desire to prepare well for the birth of babies. What bothers me, and what hurts our family, is the perception, often reinforced by doctors, that a life with Down syndrome is not a life worth living, or that the burden such a child places upon a family and society is simply too great.

Penny starts kindergarten this fall. She will be learning to read and play and paint and use the computer and express her feelings alongside her typically developing peers. She will help me out around the house by “folding” laundry, by setting the table, by making her little sister giggle as I prepare a meal. She’ll frustrate me when she refuses to go to the potty by herself or when she yells at William or when she whines about not getting her way. We’ll snuggle on the couch and she’ll sound out words on flashcards, with a flush of excitement rising to her cheeks when she figures one out and says, “I can do this, Mom!”

In that moment a few months back, when I finally added Down syndrome to Penny’s birth story, I took her chin in my hand so I could look into her eyes, now a sparkling green with a dark blue outline. I said, “But Down syndrome didn’t hurt you. And it didn’t hurt us. So we didn’t need to be scared anymore.”

“So then you were happy?”

I reached out my arms and gave her a big hug. “I couldn’t be more happy that you are my daughter.”

Down Syndrome fact or fiction?

Several months ago I came across a few "myths" related to Down syndrome.   I thought I'd weigh in.

1.  Fact:  Children with Down syndrome are only born to older parents?    This was not true in my parent's case as Erik was the first of 4 children and they were very young when he was born in 1960.  I know many cases where parents who were in their 20's and 30's have had children born with Downs.

Fiction: 80% of children with Down syndrome are born to women younger than 35. However, the likelihood of having a child with Down syndrome does increase with the age of the mother.

2.  Fact:  Children with Down syndrome are always happy?  Erik was a very happy baby, my mother says, and for the most part he remained a happy person.  But he had his bad days too like all of us.

Fiction: People with Down syndrome have the same feelings and moods as everyone else.

3.  Fact:  People with Down syndrome cannot form relationships?  Erik was more than able to make friends and enjoy people.  He loved people from the moment he met them and wanted to spend time with them.   He was always inviting people he had just met to his condo to watch football and have a coke.   Today he shakes hands with everyone he meets and is a sociable guy despite his aging mind and body.

Fiction: People with Down syndrome are perfectly capable of forming all types of relationships with people they encounter in their lives, be it friendship, love or dislike.

4.  Fact:  People with Down syndrome cannot have children?  Don't know much about this subject, I have to admit.  Our family never considered Erik having a relationship involving marriage or anything along those lines.  But he definitely had a capacity to love.

Fiction: Women with Down syndrome can and have had children. It has been recorded that two men with Down syndrome have become fathers. The information about fertility in people with Down syndrome is very outdated and based on research in institutions where men and women with intellectual disabilities were kept apart.

5.  Fact:  All people with Down syndrome will eventually develop Alzheimer’s disease (dementia)?  This fact has proven true with our sweet Erik.   He is 51 now but probably operates like someone 20+ years older.   His body and mind has now aged beyond our parents.  I confess I often wonder what the near future holds for him.  This promotes gratitude for the simple things, which is always good.  Like hearing his voice on the phone or seeing him smile and laugh real hard about something.

Fiction: Although many people with Down syndrome do develop dementia in their later years, this is by no means inevitable. Research indicates that the incidence of dementia in people with Down syndrome is similar to that of the general population only that it occurs 20-30 years earlier.

****************************

When Erik was born in the 60's medical care and knowledge about this handicap was so far behind our present day.  Erik's life is such a success story.  Those who have babies with Downs now will have the benefit of advanced care and tons more support from online communities and educators.  I anticipate we'll see those with Down syndrome accomplish things we never could never imagine.  One thing for sure, they forever influence those with whom they share their lives.


here read about Erik's influence on others.
here read about Erik's job at the hospital.

Sweet welcome for Erik

 Erik's smile and sweetness blesses everyone.

As I mentioned before, a few weeks ago Erik visited our house for the weekend.   Originally, he was going to return to his group home on Monday.  But due to a sudden death in my husband's family we had to change our plans; so our son and daughter ended up driving Erik back to Brownwood on Sunday evening.  Erik enjoyed being at our house but it was clear to us that he was happy to be returning to his friends.

Before his visit I had come across some old photos of Erik with friends and an awesome one with Erik dressed as Elvis receiving 1st prize at a talent show.  My daughter said he looked at those pictures over and over on the way home.  Maybe they triggered some memories for him.

When they pulled into Aldersgate Enrichment Center.  Erik, all of a sudden, was a man on a mission.   He didn't want to even take his stuff to his room, he wanted to put it down inside the door and go.   My kids persuaded him to at least take his things to his room which he grudgingly did but... after that, he charged out of the house, right over to the other group home where he knew things were happening!   He walked in, threw his hands up in the air with a huge smile - and, oh my goodness, I know if he could have he would have yelled out "Hey! Here I am!!!"

The response he got was "Erik!! you're back! we missed you, come have an ICE CREAM FLOAT!!!!"   His friends immediately started joking with him, poking each other.   They have lots of inside jokes there.  They talked about how Erik likes to "put people in jail."  He holds the door handle so they can't leave their room, all the time smiling and laughing.  (hmm, now I know why he tried to do that to my husband Saturday night.)  Penny started asking Erik,  "Erik, how many girlfriends do you have?"  Erik held up 2 fingers.  Penny is one of those 2.

Pat, who I've mentioned before in this post, told our kids he didn't know Erik would be gone that weekend and was worried about him.  Pat has become such a treasure to Erik, as are all the house moms and dads.  He helps him shave (yay!) and works with him to help him talk more.  Pat says to him "You know, if you're gonna be my friend, you've got to talk."  He is so patient with Erik because sometimes he can only get out one or two words.   Pat also remarked again about Erik's legendary appetite. (we are not surprised)  Pat said one time they were all in a restaurant and one of the residents went to the restroom and while he was in there Pat saw Erik take his plate and finish it off, then finish off his own steak, then have dessert!  He's just an eating MA-chine leaving people shaking their head in amazement.

Pat also shared how Erik gets to sing on Sunday at church.  Erik tried to tell us about that but he couldn't get out anything other than "I-I-I sing".  But from what Pat said it sounds like Erik goes up to the front during worship time and sings most Sundays. I would love to see this. Pat says it's such a beautiful sight he often finds himself crying.

What a heartwarming return for Erik!  My heart swells in gratitude that he lives in such a loving place.   In case you're interested, here's a link to the group home where Erik lives and works in the Packaging Department. (you can see his picture on that link)  I've said it before and I'll say it again, those with mental challenges often excel in loving others and that's clear in this unique community at Aldersgate.

Erik's visit -- singing, swimming, laughing

Well, Erik visited last weekend and I'm pleased to say everything went pretty well.  My son and I picked him up in Brownwood and as soon as he got into the car he started smiling from ear to ear.    He settled in for the 3 hr trip.  We put some music on and he sang, clapped, tapped his hand on his legs ...  and pointed (the cute thing he likes to do when he sings - like he's an entertainer pointing toward his audience).

Smilin' and singin'

 On the trip home while driving through a small town I saw a billboard for Altzheimer's awareness.  There was a picture of an elderly person on the billboard with these words:  

 I know what I want to say but just can't find the words to say it.  

That's sums up Erik's world, he tries to get the words out and sometimes succeeds, even if it's just one word.  Most times he tries and gives up but we tell him it's ok.

Erik adjusted well to our new house.  We were able to get him in the pool and he ended up really loving it.  We had such fun with him there.  I'm so grateful.  We had family and friends over to see him and that made it even better.

keepin' cool.

Erik laughed, kidded and, of course, enjoyed his meals.   Oh, it was great to see him throw his head back and laugh real hard.

He did the same old "Erik" things, wanted to show off his watch and the contents of his wallet numerous times.   He kept talking about singing so we put on some hymns and Erik sang along.  He sang with such sincerity and tears in his eyes, it really was a "holy moment".   You know it's interesting, he doesn't have the same hesitation singing that he has with speaking.

What's in your wallet?  Erik will be happy to show you what's in his.

I learned some things while Erik was here.  

1.  Don't ask him to make a decision or to choose.  Just make it for him.  Too many choices - his brain can't process them.

2.  It's going to take a while for him to do personal things - longer than usual.  My husband helped him shave, brush his teeth, and get dressed.

3.  It's a really good thing he agreed to wear disposable underwear at night.

4.  Erik doesn't sleep through the night anymore.

5.  Adjusting to change isn't as easy as it used to be.
I would guess that most of these are normal old-age related issues, right?

6.  And last, but not least, Erik loves his group home.  He mentioned some of his friends there the 2nd day he was here.  I asked if he missed them and nodded.  As much as he loved being with us in his old hometown, he loved returning to his friends. (more about that in a future post)  That fact gives me such comfort.   Being a long-distance care-er is hard enough but knowing he's so happy where he lives is a blessing to his family.

I guess all who see a loved-one lose their mental abilities through Altzheimers grieve at the loss of communication.  We're grateful that he's not belligerent, angry or hard to be around.  But we miss the old Erik who could converse in depth, tease even more, and tell you ALL you needed to know about the TV schedule or the bus route or the weather report -- areas in which he was the expert.

If any readers are experiencing life with an aging Down syndrome adult I'd love to hear about your experience.  I hope your summer is going great.