published November 4, 2007, The News-Herald
Monday, October 7, 2013
Have you ever noticed that once in awhile you’ll have an experience that helps to put your life in perspective?
I had such an experience in October when taking part in a Project DOCC -- Delivery of Chronic Care -- panel presentation at the National Society of Genetic Counselors Conference in
. Kansas City, Missouri
Project DOCC was founded by Maggie Hoffman, Donna Appell, and Nancy Speller-- themselves parents of children with disabilities.
Project DOCC was created as a means to improve the quality of care for severely chronically ill children by educating medical professionals about their special needs as communicated by volunteers giving a parent's perspective.
I had the opportunity to observe a Project DOCC presentation, in June of 2006, conducted with five parents of children with Duchenne Muscular Dystrophy (DMD).
The parents represented children across the spectrum of a diagnosis, some during the early stage, and others during the late stage. The project not only helped to educate others about DMD but also focused on the non-medical aspects of the diagnosis, such as the human factor, and the quality of life of the afflicted.
When Katie Clapp, from FRAXA Research Foundation, asked if I would be able to spend a day in Kansas City to be a part of a Project DOCC panel I couldn’t resist the opportunity to sit on the other side of the table, giving the parents perspective.
In this presentation, Maggie did something very different with the project. The panel did not consist of all caregivers dealing with a common condition, but rather individuals living with or caring for individuals with a genetic condition.
Naturally, I represented Fragile X syndrome and I was partnered with individuals dealing with Hermansky-Pudlak syndrome (HPS), Duchenne Muscular Dystrophy (DMD), Marfan syndrome and Breast Cancer.
The five of us had never met until breakfast on the morning of our presentation. Prior to meeting, Maggie provided each of us with a list of panel questions to answer as it related to the genetic condition we were living with.
It was not a simple matter of filling in the blanks. Maggie worked independently with each panelist, creating focus and clarity in the answers, polishing what would become our script of sorts.
During breakfast, Maggie provided a seating assignment, a list of who would respond to what question, in what order from the scripts created from our questionnaires.
Immediately following breakfast, we went to the conference auditorium and presented before the 900 individuals attending the conference.
Maggie wove our stories intricately together into one powerful presentation in which we not only offered models of “best practice” guidelines but lessons learned from being at a receiving end of a genetic diagnosis.
It was information that genetic counselors, geneticists, and genetic counseling students would never experience within the confines of their practice or classrooms.
We all had stories to share of our experiences on the road to discovery with our unique genetic conditions.
Imagine what it was like sitting next to someone with HPS who related how they diagnosed themselves, prior to the official medical diagnosis, discovering the prognosis is often fatal, shortening ones life expectancy.
Imagine what it must be like to be a parent of two young men diagnosed with DMD in which you learn your child may be lucky to survive into his 30’s.
Imagine what it was like driving to work one day and suffering a massive heart attack that was a result of a genetic condition, Marfan syndrome, that you didn’t know existed, let alone have.
Imagine learning after it was too late that your breast cancer was a result of a genetic pre-disposition in your family.
Imagine what it was like learning you carried the fragile X gene that was a leading cause of mental retardation and currently the leading genetic cause of autism, discovering it had been silently lurking unknown in your family for four generations.
The most amazing thing of all was how through Maggie’s guidance we spoke as one voice, and one condition was not considered more important than another.
We began that day as five strangers, with uncommon diagnoses. By the end of the presentation, we were one, with a common goal, to make a difference in someone else’s road to diagnosis.
We were helping to educate genetic specialists from the individual and/or parent’s perspective.
It was a humbling and truly powerful experience and one that I owe to my son Austin, and to fragile X.
and fragile X being a part of my destiny, I would have never met Heather, Brian,
Vicki, Cherine or Maggie. My world would be a much smaller place,
with a lot less meaning.
The next time I ask myself “Why me,” I’ll stop and think of
Kansas City and I’ll know
Learn more about Project DOCC at www.projectdocc.org
This was written in October 2001, never published. I left the work environment so I could be a better advocate for Austin, so I could do whatever it took to help him succeed. Twelve years later I still believe it was the right decision, I'm still working at it and I do miss my paycheck, my cleaning lady (Mary and crew) and my financial independence.
As I enter my 56th year my husband is still looking for “The Good Wife”. I swear that man should have been born in the depression years. Some days he acts like we don't have two-nickles to rub together, which isn't true and simply drives me nuts.
I've only got four more years before Genevieve will be 18, I'll be 60, yet I'm not sure we'll ever truly have an empty nest.
Bottom line - for the men out there - “Happy Wife, Happy Life”!
The Good Wife's Guide
Prior to my departure from my past life as a working woman the guys in the department left a copy of "The Good Wife's Guide" from Housekeeping Monthly dated May 13, 1955, on my desk. After a couple of months off I've revisited this article and think that some updates are necessary. Here are some statements from the past and what I think needs to be changed.
"Have dinner ready. Plan ahead, even the night before to have a delicious meal ready on time for his return. This is a way of letting him know that you have been thinking about him and are concerned about his needs. Most men are hungry when they come home and the prospect of a good meal (especially his favorite dish) is part of the warm welcome needed." I dare any woman to try this. I can't tell you all of the times I've prepared a great meal only to have him show up late or walk in and tell me he's not hungry because he went to "The Big Fish" for lunch. Honestly, his favorite dish isn't food at all.
"Prepare yourself. Take 15 minutes to rest so you'll be refreshed when he arrives. Touch up your make-up, put a ribbon in your hair and be fresh looking. He has just been with a lot of work weary people." Right, he's been with "work weary people" he should try a day with three children if he wants to think weary, especially when one of those children has fragile X and autism.
"Prepare the children. Take a few minutes to wash the children's hands and faces (if they are small), comb their hair and if necessary, change their clothes. They are little treasures and he would like to see them playing the part. Minimize all noise. At the time of his arrival eliminate all noise of the washer, dryer or vacuum. Try to encourage the children to be quiet." Change their clothes? As it is, laundry is a full-time job so why would I want to double my load. Little treasures playing the part and minimize all noise, what an impossible feat. If the children were quiet there would definitely be something wrong. I haven't seen quiet in 21 years and we've got a good sixteen to go before Gen's 18.
"Listen to him. You may have a dozen important things to tell him, but the moment of his arrival is not the time. Let him talk first - remember, his topics of conversation are more important than yours." Now what could be more important than what Austin, Natalie and Genevieve accomplished in a day?
"Make the evening his. Never complain if he comes home late or goes out to dinner or other places of entertainment without you. Instead, try to understand his world of strain and pressure and his very real need to be at home and relax." His world of strain and pressure? Come on gals, the number of men who could accomplish what we do in any given day being a working woman or a stay @ home mom is slim. I try to make the evening filled with as much chaos as the day. The man of the house really needs to appreciate the fact that he can leave the chaos! Also, I believe what's good for the goose is good for the gander, make him go out and make sure you get equal time.
"Arrange his pillow and offer to take off his shoes. Speak in a low, soothing and pleasant voice." This is where I really draw the line. If I start to tally the number of times I check shoes to make sure everyone has them on and on the right feet before we go out the door this is absolutely out of the question. Once Austin actually went out the door with two left shoes, no big deal it was only to the Ped’s office, I think I made the staff’s day. With Genevieve starting to demonstrate her independence I can't tell you the times we've gone out the door only for me to realize that she has her pants on backwards. If the man can't dress or undress himself, I give up, his mother failed and it's not my problem.
"A good wife always knows her place." She is the master of his universe, need I say more?
Monday, September 16, 2013
published July 9, 2007, The News-Herald (I was quite surprised by the title, the paper always did final edits and I would never see the final copy until it was in print. I was caught a little off-guard on this one when others saw it before me and someone noted, "hey, it's Sally the Stripper", and I had no idea what they were talking about :-))
I have decided to confess that I am a compulsive stripper. I can't help myself. Living in a house that was built in 1925 has strongly influenced this habit.
The tools for this trade are very old unattractive clothes, heavy-duty rubber gloves, at times safety goggles, a putty knife and steel wool. Stripping of this kind is not a turn-on for my hubby.
It all started in the bathroom of all places. When the bathroom was gutted and redone I still had the original door. It was a solid wood door with beveled panes of wood and probably a good 60 years of paint.
There were runs, globs of paint in the corners, hinges that were completely covered and old paint chips that were never sanded down.
I intended to paint the door but I could not imagine ever being able to do it the way I wanted with all the past imperfections, thus I decided to strip it. What a piece of art it turned out to be!
The next room in which this habit asserted itself was the girl's bedroom. When I decided to redo it I planned to strip the room door and the closet door. The treasure I found in this room were the hinges on the doors. They were the original cooper plated hinges -- what a reward.
I could not stop myself there, I’ve continued throughout the house.
Maybe it's due to the fumes during the process but I enjoy removing the layers. All the different colors through the years, all the different preferences of previous owners makes me really wonder what this old house looked like when it was new.
One project was the outer door on the enclosed porch. This was one door that, if possible, I wanted to stain and leave natural.
Sadly, the one thing I have found in stripping is that after all the work, due to past abuse, you may not like what you find. Some things, like some people, we just wouldn't want to see naked. This door fit that analogy perfectly.
When the hallway to the basement needed a fresh coat of paint the light fixture caught my attention. It was a simple light that had only a bulb in it. I was convinced it was the original light fixture installed when the house was built.
Slightly peeking through the paint layers were details of the original fixture. Years of paint needed to be removed before I could even find where it was attached to the ceiling.
Beneath the paint I found a beautiful brass fixture. The end result was fabulous, even before polishing.
When I showed my husband, he asked me when I painted it gold. Go figure!
Sometimes, I have found people I would like to emotionally strip. Somewhere beneath all the games they play is a remarkable person. Sadly, they keep it buried, beneath layers and layers of false fronts, displaying only what they want the world to see.
In all you do, I challenge you to look deeper, beneath the layers, to remember that what you see is not always what you get.
published June 3, 2007, The News-Herald
You win some, and you lose some. Whether we like it or not, life is not always fair and sometimes there isn’t much we can do about it.
My hockey player, Genevieve, 8, and all of her teammates, had a fantastic spring season and even though it won’t be on the records anywhere, she scored the first goal of the Spring League Championship Game.
It was an awesome goal, the way she carried the puck across the ice, out from the corner and shot it past the goalie.
The scorekeeper put the goal on the scoreboard but 40 seconds later took it off at the direction of the referee.
It turns out that the refs weren’t close enough to the net to see the puck go in and bounce back out to the goal line. The goalie eventually covered the puck, which is all the referee witnessed.
Many of the spectators in the stands, as well as all of those along the boards, saw it go in behind the goalie. I’m sure the opposing team witnessed it as well but neglected to admit it.
After all, it was the championship game and it would have put our team up by a goal.
In recreational hockey there is no technology – no goal light, no play review in
If the referees don’t see it, then it doesn’t count.
It wasn’t the first time it happened to our team but it was the first time that it really mattered.
There is so much I try to teach my children, first and foremost, that we should always be truthful.
One lesson I didn’t think I would be teaching an 8-year-old though is that life is full of hard knocks and that life is not always fair. Sometimes the truth falls on deaf ears and people turn a blind eye.
After the first two years of her hockey career ended with rather disappointing records our team had an outstanding 11-1-0 record in the regular spring season.
Throughout the season our players were taught good sportsmanship. There were many victories, games in which we could have ran up the score but the coaches instead chose to use the goal advantage to rotate all players through various positions.
The team’s fans also exhibited sportsmanship and compassion.
There’s nothing worse than being on the losing end only to have the opposing team’s fans cheering for the 8th or 12th goals as if it was the deciding goal in a championship game. Honestly, cowbells and noisemakers aren’t necessary after a five-goal lead, especially when you consider the players, for the most part are still learning the game.
Our eight year old is too young to have seen Wayne Gretzky play the game but we use one of his quotes on a regular basis, “You miss 100% of the shots you never take.”
What we didn’t think to prepare her for, at the age of 8, is that in hockey, as in life, there are bad calls, calls that don’t always go your way, goals that don’t always make it onto the scoreboard.
My husband, one of the team coaches, was proud of her play to score the goal but equally proud of the way she accepted the referees call. There were no emotional outbursts or fits of anger.
She just shrugged her shoulders and kept playing.
In the end, even though the final game sheet stated we lost 2 to 1, our players were champions in their own right.
In the face of diversity, when the truth didn’t stand, they exhibited true sportsmanship.
What really matters isn’t the outcome of the game, but, again as in life, how you choose to accept it and continue to play fairly, a lesson we can all learn from this little girl and her team of champions.
(and the funny part was, when this was all said and done, I later found out the ref was the president of the hockey association for the team we were opposing, go figure.)
An old story form 2001, never published.
Dress Codes have been around for sometime. When I was growing up, as a teenager, I felt that too much emphasis was placed on how someone dressed or the length of their hair. I believed that it didn't matter how long or short someone's hair was or what color it was, if that person did well in school, well in life.
When I was in the army I had to adhere to a very strict dress code and I hated it. During my military service the only time this rule was bent was during pregnancy and it wasn't even fun bending it. In the late 70's and early 80's maternity clothes were very drab, still stuck in the fifties.
I'm also the first one to admit that I do not always wear items that are "age appropriate". The one place I do try to curb some of my extremes is in the school environment. Basically, I will wear clothes that will blend with the teachers. Now, I wonder if there should be a dress code for parents. We still have codes that we are asked to adhere to at work; our children still have limitations at school, but what about parents in the school setting.
Don't get me wrong, if you've got it, flaunt it, but think about where you are flaunting it. One morning at school a woman came in with her young child and my first impression was she was an off-duty stripper. The two things that stood out were the 5" platforms and the gold, shinny, low-cut, midriff, halter-top. Just when I thought I'd seen it all at school, she raised her arms to do something and displayed her pierced navel. Now honestly, I have asked myself if this was just breast and navel envy on my part. After some thought, I still believe her attire would have been inappropriate for the school environment even if she had no cleavage and no pierced navel.
Now, I wonder why? This occurred during the end of November, so that ruled out the possibility that she was in costume for Halloween. Since this occurred before 9 a.m. in the morning, I couldn't imagine where she would be going to require such attire. Could she have slept in her clothes from a wild night at the bar? This was a Tuesday morning; I've never really known Monday to be a big bar night. Maybe this was her work attire, the next day I ruled that out when I saw the same woman in scrubs. Was she trying to influence her child's teacher? Since there are only three male teachers on staff at the school, none of them in the lower grades, I quickly ruled that out. Although, I did see the janitor in the hall that morning and I'm sure she made his day.
As I've been pondering this event Jerry and Natalie have been doing some Christmas shopping via the "Victoria Secrets" catalog. When we received a "Fredricks of Hollywood" catalog in the mail Jerry thought he would have some fun by having Natalie pick out items she liked for mommy. I've attached a scanned copy of one of the items she picked out which clearly re-enforces why dress codes will be important for Natalie. Boy, is she going to give me a run for my money!
Sunday, September 15, 2013
When did the “F” word become a part of our everyday language? Yep, I’m old enough to remember when it was not used at all except maybe in different environments like a working woman or man’s environment on the floor of a plant. And, it was never used when there were ladies present.
Now it’s used often, as a verb, a noun or an adjective. It’s even found in the Merriam-Webster dictionary, first known use was in 1680 (wonder what the use was, maybe “Oh Fu%k, the fox got in the hen house!”) in many forms, such as (to name just a few):
And then when I go the definition of “Fu%ked Up” I believe it clearly demonstrates the result of the demise of our language in public, “thoroughly confused, disordered, or damaged”. The first known use was in 1939 and with the rise of Hitler at that time the definition does fit.
I pride myself on using appropriate language, I seldom curse and even more rarely use the “F” word. It’s not just because of Austin, it was how I was raised, but he is still a big influence. I would be appalled it he would use this word, especially in front of my parents who truly lived in an age when it wasn’t used in public. I even have a term for those who use the word often, it’s FPM (Fu%ks per Minute), with some the FPMs are quite high, it’s a given, they can’t say a sentence without dropping the “F” bomb.
Austin’s done very well over the years, we’ve kept his language appropriate, and for a young man with a disability much of his life has been geared toward ensuring his behavior is appropriate for public or private situations. Which in reality I am at times a little conflicted with since I believe he is who he is and often we should not teach what just what is deemed appropriate by others but acceptance. Yes, he has little quirks that might be different from his peers but that’s okay.
I remember once taking him to see the movie “Hancock” and it seemed like in the first five minutes every other word was a curse word, lots of variations of “ass” and one “F” bomb. I was truly worried about what would stick and after the movie what phrase really caught his attention (he’s been known to memorize movie lines). In the end, I was so very thankful that the phrase that stuck was “Butt-Naked”.
Now Austin’s a History Channel buff, he loves “Pawn Stars” and the old man has had an influence on his language. “Dumb Ass” and “Fat Ass” have become a part of his vocabulary. At times, it cracks me up because it’s always used in the right context, with the right inflection, yet I’m still trying to correct this behavior (which might just turn out to be a waste of energy.)
We are all entitled to freedom of speech, and I really don’t care if you use the “F” bomb or not, but I do care about when and where you use it. It should never be used as a noun to describe your child; it should never be used when small children are present or elders, and it should not be used when you are attending an event at your child’s school or a child's sporting event.
For those of you who don’t know, an IEP is the Individual Education Plan (IEP) which defines the special education services each and every student receives through our school systems.
The purpose of the IEP is to design an educational program to meet the individuals needs so they can be successful not only in the school system but in life. The purpose of the IEP is to meet their UNIQUE needs.
With Austin, who is now twenty-one, I’ve been through quite a few IEPs and IEP meetings.
During my prep for our IEP, and the day of the meeting, I often pick a song that depicts my thoughts, my role or the general atmosphere for the moment. I’ll often listen to the song over and over again. The ranges of the genre are broad and below are just a few of what I consider classics.
We Belong – Pat Beneaar:
Whatever we deny or embrace
for worse or for better
We belong, we belong,
we belong together
You Raise Me Up – Josh Groban:
You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.
Because You Love Me - Celine Dion:
You were my strength when I was weak
You were my voice when I couldn't speak
You were my eyes when I couldn't see
You saw the best there was in me.
Guardian - Alanis Morissette:
I’ll be your keeper for life as your guardian
I’ll be your warrior of care your first warden
I’ll be your angel on call, I’ll be on demand
The greatest honor of all, as your guardian
Amazing – One Eskimo
It's in the stars, in the sun
It's everywhere, in everyone
And it will be every day
From now on, from now on
We are one and it's amazing
Everything – Alanis Morissette:
You see everything, you see every part
You see all my light and you love my dark
You dig everything of which I'm ashamed
There's not anything to which you can't relate
And you're still here
If Everyone Cared – Nickelback
And as we lie beneath the stars
We realize how small we are
If they could love like you and me
Imagine what the world could be
And then there are the non-typical tunes that may come into play, depending on my mood, depending on our current experience:
Not Ready to Make Nice – Dixie Chicks
I'm not ready to make nice
I'm not ready to back down
I'm still mad as hell and I don't have time
To go round and round and round
It's too late to make it right
I probably wouldn't if I could
Cause I'm mad as hell, can't bring myself
To do what it is you think I should
Welcome to the Jungle – Guns N Roses
Welcome to the jungle
It gets worse here everyday
Ya learn ta live like an animal
In the jungle where we play
If you got a hunger for what you see
You'll take it eventually
You can have anything you want
But you better not take it from me
Stranglehold – Ted Nugent
the road i cruise is a bitch now
you know you can't do me 'round
if a house gets in my way
you know I'll burn it down
Enter Sandman – Metallica
Hush little baby don't say a word
And never mind that noise you heard
It's just the beasts under your bed
In your closet in your head
This is How You Remind Me – Nickelback:
And I've been wrong, I've been down
Been to the bottom of every bottle
These five words in my head
Scream, "Are we having fun yet?"
Highway to Hell – AC DC:
No stop signs, speed limit
Nobodys gonna slow me down
Like a wheel, gonna spin it
Nobodys gonna mess me round
For us IEP season is right around the corner, I’m hoping we’ll stay the course and our tune will be a little on the mellow side. Although, one must keep in mind, I am a realist, there are no Precious Illusions (Alanis Morissette).
What’s in your playlist?