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 . . . .

Furthering the Obsession

The other day, we were playing with Lego-style building blocks, and I decided to further Buddy's interest in weedwackers (which he had talked about all day) by making something akin to a weedwacker for him to play with (until it fell apart, repeatedly).



He enjoyed it. A lot. (Note that I've never claimed to be artistic. I was actually quite proud of myself that it turned out looking like something in the neighborhood of a weedwacker. (And yes, our other son is playing with an empty box. Digging items out of the recycling bag is his idea of a good time.))

But then, my paltry attempt at a weed-wacking device was surpassed by something far, far better(there's probably a spiritual analogy in there somewhere, but I'm not going for it at the moment).

Buddy's aunt and uncle had ordered a play John Deere weedwacker for him (after reading the previous post on weedwackers) and it arrived later that afternoon.

He was beyond thrilled. And he couldn't wait to show his daddy when he got home from work.



He's been weedwacking my plants ever since.

(The play weedwacker actually makes a noise if you pull the string and push the button, but he doesn't like the noise it makes, so he continues to make his own weedwacker sounds as he mows down the houseplants.)

Buddy sends his most profuse thanks to his aunt and uncle!

That Child

So, you know how at any event showcasing young children, there's always that one child who can't be corralled, who isn't paying attention, who isn't participating nicely like the rest of the children?

Yes, well, that one is my child.

The other night, we went to a "graduation" party for Buddy's preschool class. It was mainly just the kids singing a few songs, saying the months and seasons of the year, going through the alphabet--you know, pre-K stuff. Most of which Buddy knows.

But he wasn't interested in participating. At all. You'll notice he's the only one not wearing a hat and not standing in line with the other kids.

He did, however, receive the "Best Hugger" award, which he then proceeded to demonstrate by giving out some more of his hugs. Can you count how many time he hugs someone in this two-minute clip (two of the people he didn't even know)? And can you see how uninterested he is in the whole thing?

 

(Have I mentioned that over-friendliness is byproduct of Williams syndrome? I'm really looking forward to the session on "Distinguishing Between Friends and Strangers" at the WS national conference we're attending in July . . . .)

At any rate, I really appreciate the patience and the genuine interest and caring his teachers have shown toward him this year. Mrs. Karla's twenty years of experience in working with kids and those with special needs have been invaluable in helping him--he definitely wouldn't be as far along as he is without the help and support he received through her. I'm so thankful the Lord let us to her little preschool, and I'm looking forward to having her continue to teach Buddy over the next few years.

Weedwackers

One of the characteristics of those with Williams syndrome is a tendency to perseverate on a topic. So I'm not sure if Buddy's current obsession with weedwackers is a byproduct of WS or if it's just him being a little boy with an avid interest in a certain item.
Whichever it is, weedwackers have become the thing he thinks about morning, noon, and night. For example, can you spot the weedwacker in the picture below?

He did. Immediately. As we were reading A is for Adam the other day, we came to this picture, and he said, "Look, a weedwacker." And we couldn't read any further because he needed to analyze the "weedwacker" Adam was holding. I didn't really have the heart to explain to him that what Adam used was not really the equivalent of the Husqvarna his daddy uses.

And, can you see the "weedwacker" in this picture?

He did. Actually, he vacillates between calling it a weedwacker and a vacuum. But weedwacker usually wins.

Weedwackers have also started showing up in the songs we sing. The other day, as Cubby and I were singing Old Macdonald had a ___, Buddy chimed in with weedwacker . . . with a zzzzzz here [he does a pretty good imitation of a weedwacker sound] and a zzzzzzz there. 

And weedwackers are also on the bus -- The weedwackers on the bus go zzzz, zzz, zzz.

I believe they were also in the Mother's Day song Husband tried to get him to sing on Sunday, Happy weedwacker to you, happy weedwacker to you, happy weedwacker, dear weedwacker, happy weedwacker to you.

As we were playing with Mat Man from Handwriting Without Tears, instead of making Mat Man, he wanted to make a weedwacker with the pieces.

And today, when I was listing the things I needed to get from the store, "Milk . . . bread . . .", he added, "Weedwacker."


The irony in all of this is that when he sees an actual weedwacker being used, he covers his ears and freaks out a bit. I guess it's more of a love-hate relationship.

So, what say you -- perseveration or just a boy being a boy?