Sherry Says ...

A Day In The Life ...

2012-02-07T07:48:00.000-08:00

So this is our normal morning routine:

I get up and go about getting ready.

Pat gets up with Tyler, unlocks the pantry and refrigerator, lets Tyler get his cereal and banana. He sits with him while he eats - then locks up everything, and Tyler goes upstairs to get ready for school.

I finish getting ready, and go into the kitchen to get breakfast for the road. Tyler yells down the stairs, "Mom, you look pretty." (Which I always have to chuckle about because he can't even see me.)

I say "thank you. Have a good day today." (That is code for -- don't get into any trouble at school today.) He says, "I will. I love you."

About the same time that I leave to go to work, Tyler leaves to go to school on the bus - saying, "Goodbye, dad, goodbye, mom" as he goes out the door.

This is what happened today:

I got up and went about getting ready.

Pat got up with Tyler, unlocked the pantry and refrigerator and let Tyler get his cereal and banana. He sat with him while he ate. But today, while he was sitting with him, Pat checked his email on his phone.

Tyler went upstairs to get ready for school.

I finished getting ready and went into the kitchen to get breakfast for the road. -- Total silence from upstairs.

I looked through the pantry for a breakfast bar - asked Pat about it, and he came to the pantry to find it.

I heard the front door open, and Tyler was going out the door -- without saying goodbye!

I said, "Goodbye Tyler. Have a good day." He turns around - barely - and ducks out the door.

I told Pat, "Tyler is up to something. He has something with him that he shouldn't have. If it's his iTouch, I will take it away, and he knows that because I've told him so."

We continue to look for the breakfast bar. Then Pat says, "Where's the loaf of raisin bread that I bought last night - and put right there." (pointing to an empty spot in the pantry.)

We both searched the pantry - and searched Tyler's room. Nothing!

So, Pat got dressed and followed the bus to school. He went in the back door of the school by Tyler's classroom just in time to see Tyler leaving his classroom (which he shouldn't be doing) -- going toward the hallway -- with the loaf of bread in his hands. (Several slices already missing.)

Pat calls his name, and Tyler turns around and says, "Oh - you caught me!"

And so it goes -- another day in the life of a child with Prader-Willi Syndrome. It's almost impossible to be vigilant 24/7.

It makes me tired ...

It's Riddle Time

2012-01-10T10:52:00.001-08:00

What do you get when you cross Tyler with an empty house and a homework assignment to be helpful around the house?

Drum roll please --

How about dishes washed in a dishwasher filled with Soft Scrub bathroom cleaner ... and a big smile on his face when I got home.

That's So Special --

2011-11-21T11:39:00.000-08:00

I don't take credit for this, but I thought it was great and wanted to share. To all the moms of children with special needs.

Regular moms know the names of all their friends. Special needs moms know most of their friends by their username.

Regular moms judge other moms when kids have tantrums in stores. Special needs moms say to themselves, “Hmm, I wonder which disability he has?”

Regular moms’ kids have a teacher. Special needs moms’ kids have a team.

Regular moms talk about accomplishments. Special needs moms talk...about skills, as in play skills, conversation skills, life skills, social skills and vocational skills.

Regular moms go out for dinner and a movie with their husbands every month. Special needs moms have a date night with their husbands every…wait, what decade is this?

Regular moms meet for a ladies night out. Special needs moms get together at support groups and forums.

Regular moms think OT means overtime. Special needs moms know more acronyms than a NASA engineer.

Regular moms complain their husbands sit on the couch and watch TV while they do all the work. Special needs moms...well how about that? Some things do stay the same!

(Just kidding dads, we know you do your part!)

What Kind of Contest?

2011-10-30T11:50:00.000-07:00

So, my mother (who is 85) lives in a senior (over 55) residence facility. They had their Halloween party last night. They wore costumes and played games. Oh, and she told me they had a "wet t-shirt" contest!

While I was quietly pondering those images and wondering what I was going to say next, she said, "yes they rolled up wet t-shirts and you were supposed to see how far you could throw them!" ... Whew!

Observations From Inside The "Big Box"

2009-10-01T23:30:00.000-07:00

I said goodbye to the "Big Box" store tonight. As I walked out the door, I had many different emotions -- everything from happiness that I will be spending more time with my boys, relief that I will be able to get a few more hours of sleep each night, a little fear at the thought of needing to replace the income somehow by working from home, and even sadness to be leaving some of the people I have gotten to know during my employment there. My head is full of so many thoughts.

I never dreamed, for instance, that I would have been there 16 months when I began working nights in May of 2008. That was when gasoline was up to $4 a gallon, and the 55-mile a day round-trip to and from my "day job" was wiping out my wallet. It was supposed to be a temporary fix -- just until the gas prices became more manageable. But, even after gas prices came down, I found that the additional income made a difference for my family. Managing two jobs (15-hour days) definitely took a toll on me. The extreme temperatures in the un-airconditioned, un-heated garden center did a number on my "prone to hot flashes" body. (Only about 3 weeks in the spring and 3 weeks in the fall had pleasant temperatures.)

But, I walked away from there a little bit wiser and hopefully, a lot more considerate. Who would have thought that at my age, I would still be learning those kinds of lessons?

It's Not Just In Harry Potter's World

While watching the Harry Potter movies with my son, I let my imagination wonder what it would be like to have an invisibility cloak. How cool would that be? To be able to be invisible -- to be that "fly on the wall" so to speak. I can think of many times I have wished for that ability. When it serves my purpose, it would be great. But what about the times I don't want to be invisible?

I realize that I am blessed to be able to spend my days working in a job with loving, compassionate people who appreciate what I have to offer, a place where we truly care about each other and where we feel free to share our joys and burdens. But I learned that to some of the people outside the "Big Box" -- I was invisible!

When my son was about 4 years old, I will never forget something he said to me one night. We had been out later than usual, and as we drove by stores that had closed for the night, in his little boy innocence, he said:

"Mom, where do they all sleep?"

"Who, Austin, who are you talking about?" I said.

"You know -- the people inside the store? Where do they all sleep when the store closes?"

Although I found great humor in his childlike curiosity, I understood what he meant. In his tiny world, these "people inside the store" were nameless ... faceless ... lifeless. They were there only to serve us when we needed something, then they would go back in their boxes to sleep, only to wake up and once again, meet our needs. No lives, no families, no joys, no heartaches, no struggles -- they were the "invisible" people.

Perhaps the contrast between my two working environments is what caused me to become so aware of the cloak of invisibility that often surrounded me each night. You see ... there are some people who still live in that tiny world that belonged to my young son. As a garden center greeter, I learned that first-hand from the "oh-so-busy-don't-even-think-about-talking-to-me" people that I encountered. The ones that wouldn't make eye contact with me no matter how hard I tried, much less actually respond to my greeting. Or the ones that walked through the door, all the while talking on their cell phones with their eyes straight ahead, never even acknowledging there was a human standing 3 feet in front of them offering a smile and a greeting. To these people, I was invisible ... I was one of the nameless, faceless, lifeless people there to serve them.

Everyone Has A Story

Have you every been guilty of becoming frustrated with the employee who isn't as helpful as you think they should be? I know I have! I didn't stop to consider what that person might have on their mind at that moment.

I confess, that in the past, I have been guilty of looking straight through people as I go about my busy day, not really seeing or caring about them or their lives. But, hopefully my experience over the last 16 months has changed how I will react in the future! The people who I worked with in the "Big Box" store are real people with life stories that might surprise you. People that have struggles that make mine seem trivial in comparison. As in my case, a lot of them are juggling two and in some cases, three jobs and are tired, burned out and pressured by the questions of what the future holds. I truly came to care about these people. I've changed their names, but here's a glimpse at just a few.

James -- the businessman in his mid 40's, who along with his wife, used to run a successful real estate leasing company and lived a typical suburbia life. The business suffered with the downturn in the economy and eventually failed, resulting in losing their home. After spending some time living with relatives and a little time living out of their car, they have just recently moved into a small apartment, along with their 9-year old son. He is not only dealing with the pressures of supporting his family, but his wife has slipped into a life of alcoholism and refuses to get help. His concern is for his son and his safety while he is away from him and wondering how he can give him a "normal" life -- that life he was "supposed" to be living.

Ann -- the 50-year-old wife, whose husband was in the US legally on a work visa, but who, due to a paperwork error, was deported back to Mexico. She can't go there to see him, so for 10 years, their only contact has been through weekly telephone conversations. Although she is trying to raise enough money to get a lawyer to help her get her husband back in the US, her income is only enough to meet her own immediate needs. On the outside, she always wears a smile. You would never guess that her heart is breaking. Only after getting to know her and asking about her family did I see the tears that she fought back.

Tashaonda -- One of my favorites, a precious tiny young girl who appeared to be in her late teens, but who was actually in her early 20's. She has worked in the "Big Box" for many years. She knows that store inside and out. Her eyes sparkle when she talks, and she always has a smile and a cheerful word for everyone. She has a dialect and a drawl that adds to her bubbly personality. Early on, as a new employee, I knew very little about the store or its inner workings. But, almost without exception, customers would see the two of us, ignore her completely and immediately come to me with their questions. It seemed that, based solely on outward appearance, they decided that the tiny young girl couldn't possibly help them.

One more story about Tashaonda. When I first started working there, she had two small sons under the age of three that she was raising without the help of their father. Late last year, she learned she was pregnant once again and was due to give birth in March. Just prior to the birth, she was stricken with Bell's Palsey. The outward symptoms of this are very much like those of a person who has suffered a stroke. Following the birth of her third son and the end of her leave of absence, she returned to work, still showing the outward signs of the Palsey. Her face was drawn up, her mouth twisted, and she did not have full use of her hands. But the one thing that had not changed -- she still had that smile and twinkle in her eye!

Jason -- An ex-marine in his early 30's. During basic training, a buddy was seriously wounded during some maneuvers. Jason carried him the two-mile trek back to his unit to get help, during which time he fractured his hip. He didn't let on to his superiors about the injury, because he was just a few weeks away from graduating. He knew it would lead to a medical discharge, and he had been through too much not to see it through to completion. However, since he waited so long, when the medical discharge did come through, they refused to acknowledge that the injury was sustained during training and therefore, he was denied the medical benefits that he deserved. Without any benefits, he has not been able to get the surgery he needs to correct his hip. As he continues to fight for what he deserves, he is burdened by the fast approaching 10-year deadline he has to complete his claim. He doesn't have the money he needs for the legal process.

These are just a few stories. There are many more. They remind me to check my prejudices at the door and really see the people I encounter every day. I want to be the first one to say "hello" to the greeter, or offer a smile and a kind word to the men and women who are stocking the shelves or cleaning the bathrooms. I want to be the customer who has patience with the new high-school cashier who gets flustered over a mistake that he makes, or with the associate who has to tell me that they ran out of notebook paper two days before school starts.

I want to remember ... these are real people. They are not invisible. They have a story, too!

Nominee For "Email of the Year"

2009-08-31T11:08:00.000-07:00

After being interviewed
by the school administration,
the prospective teacher said:

Let me see if I've got this right.

You want me to go into that room with all those kids, correct their disruptive behavior, observe them for signs of abuse, monitor their dress habits, censor their T-shirt messages, and instill in them a love for learning.

You want me to check their backpacks for weapons, wage war on drugs and sexually transmitted diseases, and raise their sense of self esteem and personal pride.

You want me to teach them patriotism and good citizenship, sportsmanship and fair play, and how to register to vote, balance a checkbook, and apply for a job.

You want me to check their heads for lice, recognize signs of antisocial behavior, and make sure that they all pass the final exams.

You also want me to provide them with an equal education regardless of their handicaps, and communicate regularly with their parents in English, Spanish or any other language, by letter, telephone, newsletter, and report card.

You want me to do all this with a piece of chalk, a blackboard, a bulletin board, a few books, a big smile, and a starting salary that qualifies me for food stamps.

You want me to do all this and then you tell me. . .
... I CAN'T PRAY?

Prader-Willi Syndrome In The News

2009-08-02T18:39:00.000-07:00

One of the challenges our family faces is helping people understand what Prader-Willi Syndrome (PWS) is and how it affects our son, Tyler. Due to a lack of information, most people do not know anything about this syndrome and look at us with glassy eyes when they hear the name. PWS is a genetic condition caused by the deletion of a portion of chromosome 15. The syndrome is characterized by cognitive impairment, difficult behaviors, and a complete lack of satiety. The lack of satiety means that Tyler is always hungry. His body does not produce the enzyme that tells his brain that he has had enough to eat, so he always feels like he is starving. At the same time, his body has extremely low metabolism. Tyler only needs about 800 calories a day to maintain a healthy weight.

In every new situation Tyler finds himself, whether it is a new school with new teachers, new bus drivers, new cafeteria workers, new janitors, or a new Bible class (basically any situation that puts him around the opportunity to be around food), we must inform everyone about Tyler’s unique needs. We need everyone’s eyes to help us as we strive to keep Tyler on track.

So, whenever we hear about opportunities to “get the word out” about this syndrome, we want to share them. Prader-Willi Syndrome was featured on Good Morning America on August 17 as a result of an article in The Washington Post on June 23, 2009 entitled, "Can't Stop Eating? For Some People, Obesity Is Not A Simple Failure of Self-Control". The show featured the Kane family, who was featured in a 20/20 story in 2004, and discussed research into hyperphagia (the uncontrolled desire to consume food). The interview is one of the best ones I have seen televised. It can be viewed at the following link: http://abcnews.go.com/GMA/story?id=8222023&page=1

For more information about Prader-Willi Syndrome go to:

http://www.pwsausa.org/syndrome/index.htm

Thanks to all for your constant support.

That's My Boy!

2009-07-29T12:07:00.000-07:00

Several months ago, Tyler's very special friend, Tom, began having Tyler help him pass the trays during the communion service. Recently, Tom told me that at some point, he was going to have Tyler say a prayer. That made me a little nervous, because I was afraid that without a lot of coaching, Tyler's prayer would most likely include "Mom, Dad, Austin, Frankie (the dog), Kitty (the cat), food" ... and so on. But on Sunday, July 19, Tyler walked up to me 2 minutes before time for the service to start and, with a big grin on his face, he said, "Mom, I'm going to say the prayer today ... I'm a little nervous!" Well, if you know me, then you know that from that point on, the tears flowed freely!

Tom quickly wrote out a small prayer for Tyler to read. Knowing that Tyler's reading skills are extremely limited, I was apprehensive. But, all I can say is -- Wow! What a moment! God was there, and He understood every word that Tyler said. It was such a joyful occasion, made even more so by the encouragement that everyone gave to Tyler. So many people made a special effort to find Tyler after the service -- pat him on the back, shake his hand and tell him how proud they were of him! He glowed the rest of the day!

Tyler's prayer is for the wine, and begins around 2:23. The video is of the whole communion service and ends with a beautiful prayer led by John Scott Davis. I included this prayer because he ended it with a prayer of thanksgiving for "training our children in the ways of the Lord."

Notes To Self

2009-07-21T16:23:00.000-07:00

So - What About Ken?

2009-04-09T22:43:00.000-07:00

Barbie at 50! Are there any ladies out there who can relate? -- I love this!