On being "different"

Mike was a guy in the singles class I attended at a church many years ago before my husband entered the picture. He was the unofficial class greeter -- the first to shake your hand when you came in and the first to remember the name of anyone new. He worked at a greeter at a local Walmart. I was kind to Mike, but I found it difficult to really relate to him beyond the compulsory, "Hey, Mike." I expected Mike to be more like me, but since he wasn't, since he was different, I didn't know how to get to know him better.

When I first began working for one of my previous bosses, I found it difficult to relate to him. He was different from me and it felt like we were continually butting heads, for some unknown reason. And then one day, for a reason I can't remember, we sat down together and he told me his life story--about his past, where he'd come from, what his life had been like. And after that, after getting to know him, we clicked and I enjoyed working for him and with him from that time on.

I was reminded about Mike and my previous boss a few weeks ago. We took Buddy for his yearly visit to the Williams syndrome specialist last week, and I was filling out all the evaluation forms they sent before we went. Several of the questions were about his interactions with peers, so I asked his preschool teacher to share her insight. One of those questions was, "Do his peers ever think his behavior is odd or weird?" She (kindly, truthfully, and without malice) answered with the "Sometimes this is true" box.

That stung a bit.

Sure, I can look around and see that Buddy is different from other children. Most kids his age don't keep their hands over their ears because the noise level in everyday situations is too intense for them (a condition called hyperacusis). Most four-year-olds don't burst into tears at the sight of something that makes a noise they don't like (the blender, the vacuum cleaner). Most kids don't have difficulty sitting still for short periods of time or paying attention to the task at hand. Most of his peers don't have trouble tracing a line, drawing a circle, cutting along a straight line, coloring a picture, or building something out of blocks. Most kids don't have difficulty initiating and sustaining a conversation or playing games with other children. Most children don't go around giving hugs to everyone they see.

But he is Buddy. And he is different.

And here's the thing about being different: It's okay.

It's okay because God, Buddy's Creator and the Creator of each one of us, likes variety. And He fearfully and wonderfully created Buddy in His image just the way He wanted him to be.

I don't find Buddy odd or weird. I enjoy being with him, talking with him, and playing with him . . . on his terms (which often include weedwackers). I know him well (I should since I'm his mother, right?), and I know what he's like as an individual, not measured against everyone else.

I know that he's funny, likes reading books, enjoys being around people, and loves playing his harmonica. And while we're working with him to minimize some of the "differences" in areas such as conversation and fine motor skills, we also love him just the way he is.

Whether we know it or not, we expect people to be like we are, and when we find out they're not, we may label them as different, or weird, or odd. I'm fairly sure, looking back now, that Mike had Williams syndrome. His overfriendliness, good memory of faces and names, distinctive facial features, and slow shuffling walk fit the profile of a syndrome that has become part of our lives. But does it matter whether someone has a "diagnosis" or a storied past that helps explain current behavior? It shouldn't--we should be kind to everyone, receiving each as an individual created in God's image for His glory. But sometimes understanding what makes a person different from me can help me embrace those differences a bit more easily.

If you expect Buddy to act like other typically developing four-year-olds, you may find his behavior odd or different. But if you expect him to act like Buddy and take the time to get to know him as Buddy and allow him to be Buddy, I suspect you'll find that he'll bring you a great amount of joy, as he does to us.

(I feel the need to add this disclaimer, which seems silly because this blog is just for friends and family, but I do want to be clear that I'm not talking about tolerating moral differences or tossing aside the clearly delineated moral commands given in the absolute standard of God's Word favor of accepting any type of behavior. We are teaching Kieran to be kind, to share his toys, to obey those in authority, and to follow God's Word. Nor am I advocating accepting the "all roads lead to heaven" approach (Jesus clearly said that He is the only way to heaven). So, there. Disclaimer ended.)

Lora's likes

Some of my friend Lora's favorite things:

I like movies my favorite moves are born free all the James bond moves
I like going out to eat at the olive garden love Mexican food

I like to paint in oils I like al kinds

I like to watch tv I like Leno

I like all the shows on medical like untold story's of the er i like nature and wrestling and moves to on tv

I love meet people from al over the world love to learn what they do I love the net

"My life has been enriched"

I received this sweet note about my friend Lora (who has Williams syndrome) from a friend of hers. She gave me permission to post it here.

I met Lora at Dietert Senior Center when I was volunteering to do the front desk. She and Mark were taking some painting lessons. We had lunch with both of them and later with just Lora. I was a bit taken aback when she said to me "you can ask me anything you want". At first I didn't understand but realized she was a very unique person. As I got to know her, I found Lora to be the most open, honest and cheerful person I have ever met.

My husband and I invited Mark and Lora to have dinner at our house. She expressed an interest and knowledge of animals so my husband pulled out his photo albums from his time in South Africa. Lora was delighted and knew so many of the animals. She said she learned from watching National Geographic programs.

I feel my life has been enriched by meeting and getting to know Lora and Mark. I think Mark must be a wonderful person to have recognized what a very special person Lora is. I have said to many of my friends that I wish I could be more like Lora - so trusting, friendly and innocent - rare traits in today's world.

Thank you for allowing me to comment on my friend, Lora.

 Ann

Lora's jobs

Tonight, I had a nice time chatting with my friend Lora about jobs she's had in the past.

can you tell me about the jobs you've had over the years?

ive had so many

ive worked in a nurseing home ive worked for a camp ive worked for 3 day cares

ive worked for mcdonalds ive worked for church chiken

i worked for the county

do you have a favorite place you've worked?

churchs chiken thats where i meet mark

im trying to think

if i could have any job it would be working in a zoo working with the big cats

i love cats

i think most of us with ws love animals

that sounds like it would be a fun job!

i worked for a vet that was fun

i worked for the pound

i cant think of the other jobs ive had

what kinds of things did you do at the vet?

i cleaned cages would help being the animals out

chang animals a round

fridays where fun there i got to go in and wach them do sugerys

working for the pound was hard

why?

had to put a lot of animals down


oh, that's so sad.

yes

obe time we had to put a dear down that was alfull she was going to have a baby she got hit and ran in to a fence got stuck

i loved working for the day cares

all thos kids runing up to me huging me

what kinds of things did you do there?

would do runing for the teacher like runing off papper they neeed i helped to put kids down for there naps i worked in the kichen

cooked

put kids in time out lol

how old were you when you worked there?

was in my lets 30s

i al so worked for a work shop for handicampped aulds

anything you enjoyed doing there, in particular?

when we would stuff envalops

i like to do colateing puting letters together

stuff like that

we did a lot of diffent things there

what did you do at McD's and Church's Chicken?

i was their gretter i clean tabels i got drinks for them

Thanks for sharing, Lora!

Interview with Lora

Lora is a friend I met via Facebook. She's a 48-year-old woman with Williams syndrome who has been married for 20 years. She's been an inspiration and encouragement to me and I wanted to share her story with you. With her permission, I'm sharing a chat session we had the other night. I'm hoping to have many more with her. If you have a question you'd like Lora to answer, leave a comment and we'll post her answer!

How old were you when you got your diagnosis of WS?

I was 6 years old.

When you talk to parents of children with WS, what do you like to tell them?

That it's so important not to hold them back

In what ways?

In all ways. A person with ws should be looked at as a prison not as some one who can't do any thing.

I want propel to see what we are made of don't tell you child you can't do this tell them thy can.

ive had a very ruff life but at the same time ive learned a lot to a bout who i am what i am

So, how do you see yourself? How do you describe yourself?

i see my self as a strong woman with ws

can i ask you someing

Sure.

is it hard for you

Hard for me to be the parent of a child with WS?

yes

i dont get to talk with prants with child with ws i wish i could talk more to them

Hmmm. The hard parts for me are seeing the struggles that my son has and wishing things would be easier for him, hoping that he doesn't get teased for being different as he grows up and goes through school, and, in the beginning before we got his diagnosis, wondering why he was having so many physical difficulties and not knowing the answers. It can be difficult to keep up with all the therapy and doctor appointments and intentionally spend time with him teaching him how to do things that come naturally to other children, but he has also brought so much into our lives that we wouldn't have if we weren't on this journey. And, most importantly, God has been good in giving us the grace and mercy we need as we parent him-- and in that respect, it's not "hard" being his mother -- it's a joy.

amen. this may sound funny but i think if you put any kind of child with a hadicampped im a home it will chang lifes for ever

that is for sure -- it definitely starts you a journey that you didn't expect to be on.

true

So, which of the physical aspects of WS have you had to deal with? Any heart problems?

yes. when i was little. no heart surgeries. i been blessed with that.

Any other physical problems?

not that i know of.
mom says i didnt start walking tell i was a little older.

What kinds of things have you gotten involved with as an adult?

i been to 3 conffcers
i vontteer for our hospice

What do you do for hospice?

i help with a lot of diffent things we have a group that gos to nurseing homes and we read to them i back cookies and do other things

i al so vontter for our art museum
i greet peopel as they come in love it

Can you tell me about how you met and married your husband Mark?

 i was a gretter at a fast food restaurant he was a ranch hand he would come in and sit in the middel of the restaurant

he was so shy it was sweet

we dint talk to eachother much

you know when the right man come in to your life at the right tim

i was going to a singles group just to fime a friend

he walked in to one i was at i al most fell out of my chair
i was working for charch fried chiken
he looked at me and sied your the chiken lady
lol
we started to talk a bout diffent things
then my friend who drove me there was geting ready to leave i thought
if i dont talk more to this guy i want get to again
so i told her ill fine some one to take me home
guess who i asked to take me home lol
so he took me home
telling my mom that i was in love was hared for me
i dint know my own feelings for this guy was to be honst i was scared to deith
our frist deat was on one of the ranchs he worked on

im a city girl here i am in the boonies

with goats and other things i never saw be for

it took me a few moths to trust him

so after a few moth deating i knoew i was in love

i asked him to marry me

Wow!

then we heared my aunt was very sick had to go see her

you talk a bout god puting me throw a test

my aunt had cancer i dint know a bout it

my aunt is stll alive healed of cancer

here i am now 48 been married 20 years

To be continued . . .

Bribe attempts and blubbery

You know how before you get married/have kids, you say those "I'll never (fill in the blank)" phrases? And then, once you're married/have kids, invariably you realize that the "I'll never" statement was a bit brash and foolish? Yes, well, one of my "I'll never" statements was, "I want my children to eat healthful food without needing to be bribed with sweets or cajoled constantly."

And then Buddy was born.

From the time he was yanked out of my abdomen, we've struggled to get Buddy to eat well and consistently. The first few months of his life, he was labeled "failure to thrive," and we spent quite a bit of time with a GI nurse at our local children's hospital trying to figure out what was going on with him.

(This was before his diagnosis of Williams syndrome, which helped to explain the low muscle tone that caused eating difficulties, the reflux, the lack of weight gain, as well as the general difficulty in getting him to eat that is common among those with WS in the early years.)

Although he's now able to feed himself, for the most part, it's still an almost daily struggle to get him to put food in his mouth--even food that he likes . . . or has liked in the past. In general, I've tried to make sure that every calorie counts for him and have focused on giving him good foods that are packed with as much nutrition as possible. But, he has a few texture issues with some foods and still has low muscle tone in his mouth and lips, making it difficult for him to bite and chew certain things. And then there's his general disinterest in food.

However, somewhere along the way, Buddy discovered cheese puffs. And lately I've been realizing that if Buddy were (for some random reason) to be found along the side of the road with a sign, that sign would read, "Will eat for cheese puffs."

And I've decided to banish my "I'll never" statement and use cheese puffs to get him to eat. And it works (mostly). "Buddy, if you want some more cheese puffs, you need to eat your fruit."

Gobble, gobble, gobble.

"I want more cheese puffs, please."

I can't say that's it been a magic cure-all, but cheese puffs have defintely helped us through a few non-eating times, and I'm grateful for them and all their non-organicness. I figure the few bites of fruit/meat/healtful foods that he eats in order to get the puffs cancels out any potential bad effects he might get from the processed puff product itself (even though the packaging assures me they're "all natural").

So, tell me, what have your "I'll never" statements been?

Horse fail

One of the suggested helps for those with special needs is hippotherapy -- working with a therapist and using horses for therapy. It's something I've thought about for Buddy since he's been on a few smaller horses in the past and seemed to enjoy it.

I have the video to prove it.

Exhibit A. Riding a pony at a dairy farm we visited while in Florida over Christmas. No worries, right?

So I was understandably eager to find a nearby place that provides hippotherapy to get him started (he's still showing evidence of low muscle tone and lack of coordination in his movements--things which hippotherapy is supposed to address). I checked around and found a place not five minutes away (and believe me, there's not much that's just five minutes away from us).

A few Fridays ago, I took the boys to meet with the owner. Buddy was looking forward to "seeing some horses," but when we got there, we didn't get the chance to actually get close to the horses since it was a bit rainy. So, we made plans to go back on Monday and start. I talked about it with him over the weekend, explaining that we'd go see the horses and maybe ride one of them, trying to get him ready for what we'd be doing.

But when Monday rolled around and we rolled into the parking lot at the stables, something snapped in his brain and he decided horses weren't for him. He started crying (and I mean crying) when we got there and just wouldn't stop. He wasn't interested at all in seeing the horses or getting near them.

I really don't know what happened -- too much talking ahead of time? Anxiety is common among those with WS, so I'm wondering if somehow I made things worse by talking about it with him? I don't know. But it seems, for now, that hippotherapy will not be on the agenda for the summer.

So we'll move on to something else -- music therapy, I guess . . . .