August 23, 2011

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 The information about fertility in people with Down syndrome is very outdated and based on research in institutions where men and women with intellectual disabilities were kept apart.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.

August 21, 2011

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.

August 6, 2011

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.