Austin

On Monday, December 2, 2013, Austin’s school day was shortened a little, he had a few loose stools, nothing unusual for Austin since given the opportunity, if nobody is looking, he’ll sometimes over eat.  I thought his color was off, thought that maybe he got into too many Cheese Its or maybe there were Cheetos in the house I wasn’t aware of.  As his mom I took the simple approach, let’s flush him out, lots of liquids and see what happens.  Tuesday morning, December 3, he was clearly jaundiced, very yellow.  I was able to get him into an early doctor appointment at Henry Ford Fairlane and that was where this journey began.

The doctor immediately confirmed his yellow appearance and gave us two choices:

1)      We could go down to the lab and have them run blood and urine tests or

2)      We could go straight to the ER (the Henry Ford Fairlane Medical Center has one clear advantage that it has an ER directly connected to it).

The doctor noted that with his coloring there was something seriously wrong if we went to the lab he knew the results would be abnormal and he would send us to the ER.  With his coloring he felt there could be something going on with his gallbladder, pancreas, liver or spleen.

With that information in hand we went directly to the ER via wheelchair with my prayers already starting – I was hoping, praying, it was something simple, just let it be his gallbladder, let it be a simple blockage.

In the ER we began the tests, numerous blood draws and a urine sample. While assisting Austin with the urine sample I knew right away something was seriously wrong, the color was way too dark, the color was ALL wrong. While we sat in the ER that day that sample set on the back counter glaring at me, reminding me that this looks serious.  I was mad at myself because I wondered how we got here, how long was this going on, why didn’t I see something sooner. Austin seldom complains partly because I don’t think he understands what is normal and what is not.  If there is not something very evident going on his digestive system or if there isn’t a fever I often have no way to determine if he is or is not well.

Austin was diagnosed with Hemolytic Anemia – Warm Body.  With my husband, Jerry, and the girls, Natalie and Genevieve, able to manage the home front, I was by Austin’s side almost 24/7 only going home to shower and change clothes once a day or at times depending on what was going on or weather I might venture home once every two days. Through this adventure I forgot about the opportunity to blog, I had an Austin Update group in which I frequently posted updates to keep family and friends informed. It is a little after the fact but I’m going to go back through my email and capture those updates here.

I wish I could say that I’ll be leaving a lot of “worry” behind in 2013, but the worry doesn’t fade, it’s always lurking especially now because the wounds (the uncertainty, the unknown) feel so fresh.  I find today’s technology a blessing and a curse because like anyone with a diagnosis the first step we often take is to hop on the internet and take in as much information as we can. Because of Austin, because he has fragile X (diagnosed at almost five) and Autism (diagnosed at the age of 11), my approach might be a little different than a typical web surfer with my information seeking coming from the National Institute of Health and searching out published NIH research through PubMed Central (a tool at one time Rep. John Conyers wanted to take away “Research copyright bill would end free health info”.) No wiki info for me, no info not researched based or possibly peer reviewed and we’ll only look at dates to determine what has changed over the years, what have we learned, where has the science brought us.  I wish the luck I seem to have with conditions that are considered rare would one day apply to the luck one would need to win a lottery, I could be a multi-millionaire by now. Frustrating to know that an expert may not be readily on hand, odd when you feel that the doctor who just stopped in during your follow-up visit only wanted to meet someone who had this rare condition and was beaming with a smile knowing how lucky we were to be able to sit across the room from him.  

During the next week or so, I’m going to take a little time, filter through the numerous “Austin Updates” that were sent out through email and capture them through this blog. I want to celebrate how amazing Austin was through this ordeal, which may not be over, and how much we appreciated the prayers and support from others. This was an experience I would have loved not to have, to walk in others shoes who have sat by one’s bedside not knowing if we’d ever be home together again, hoping and fearing all at the same time what tomorrow may bring, and that still lingers because I’m not sure we’re out of the woods yet. I only hope that 2014 will only bring opportunities to celebrate and erase at least a little of the worry.

Austin, Dec 3, in the ER, with his amazing smile, he should have been feeling pretty rotten.

Project DOCC

 published November 4, 2007, The News-Herald

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.

Without Austinand 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 why me.

Learn more about Project DOCC at www.projectdocc.org

The Good Wife

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 56^th 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?

Confessions of a stripper

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.

Ref’s calls don’t always go your way

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 Toronto. 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 8^th or 12^thgoals 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.)

Dress Codes

An old story form 2001, never published.

Dress Codes

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!

Oh For Fu$%s Sake!

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):

Fu%k

Fu%k Off

Fu%k Over

Fu%k Up

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. 

So please, in public, show a little respect, and clean up your F’ing language.

The IEP Playlist

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? 

Frustrated in Wyandotte

What’s the purpose of a blog if you can’t Bit%h in it?  I believe everyone should have at least one Bit%h Buddy, a BB, someone you can vent to and let it all out.  Today, the internet world will be my BB.

In March, Wyandotte School District put dollars before the safety and well-being of students and decided to out-source busing. Honestly, they did it in a very underhanded manor, burying it in a union contract, having it approved by the union prior to it being brought to the school board. The parents were never officially informed but a few of us did find out, appealed to the board but it was a lost cause the decision had already been made.  March Madness has a new meaning in my household. 

http://wyandotte.patch.com/groups/schools/p/wyandotte-parents-make-emotional-plea-to-prevent-outs685bb7b035

It’s Friday, August 30, school starts on Tuesday, September 3 and as of 8 a.m. this morning I still didn’t have a bus schedule, I had no contact info on who to contact to question this so I connected with the superintendent and the admin of his school to which they replied they would follow-up on this.

While I was out running errands this morning Trinity drove by and stopped by my house, yep the Friday before a holiday weekend they are just working out the routes.  First they wanted my child to wait at the corner for bus pick-up to which my daughter replied that is not an option. Wyandotte picked up Austin at the front door; there is no reason Trinity can’t.

Door pickup is actually the smallest problem, the biggest problem is that they want to pick him up at 6:21 a.m. Yep they want my child, with special needs to ride the bus for almost 1.5 hours.  This is what happens when you out-source a service, the child no longer matters, it all comes down to $$$.   It’s a relatively easy fix; add another bus to the route.

My son struggles with transitions, he struggles with wait times, and if you were me would you start his day out with a 1.5 hour ride? 

He enjoys going to school and he used to love the bus and the drivers from the Wyandotte district. Transportation is very important; it sets the tone for the entire day. I hope to create success at school and I don’t think a 1.5 hour bus ride is going to contribute to his success.

I don’t believe I’m the only parent in Wyandotte with a problem with busing and I’m hoping the others will share their experiences with the school board and the local media. Our children do matter and they should come before dollars.

I do believe this will be just the tip of the ice berg; Trinity has gotten off to a very rocky start in my book. First impressions do matter and I’m not impressed with their poor planning, lack of organization and disregard for the needs of the clients they serve, children and young adults with disabilities.

Sadly, this is not how I wanted to set the tone for this school year. I’ve got enough on my agenda providing for my son and my family and it ticks me off that I have to waste time on an issue that one would believe any moron would understand that it is not acceptable. Its days like these I really wonder why I even bother, taking school out of the picture could make my life easier but the opportunity for friendships and being with others is too important for Austin for me to take it away.

Alone and One of those Days

It's short little pieces like this that remind me of where we've been and how far we've come. They also bring comfort because I know we moved on, we managed and no matter what life may drop in my lap during this journey it will be okay. Even at a very young age my daughters were a very important part of my support team, a very important part of Team Austin.

Written around 2000, '01.

Alone

Alone I am nothing.

I am but one, one of many.

Alone I am empty.

With a heart that seeks empathy.

Alone there is only fear.

Displayed in the form of many tears.

Alone there is only darkness.

There is nothing to take away the harshness.

Alone sorrow will consume me.

Alone is not where I want to be.

One of Those Days

Did you ever have one of those days,

when you didn't know where to turn or what to do?

Did you ever have one of those days,

when no matter how hard you tried, you simply cried and cried?

Did you ever have one of those days,

when you simply couldn't cope, you had lost all hope?

Did you ever have one of those days,

when you prayed and prayed for the wisdom to guide you on your way?

Did you ever have one of those days,

when you suddenly found yourself in uncontrollable grief, with no relief?

I want you to know, you are not alone,

and you share something with me that nobody else knows.

And as I sit with my heart and soul just weeping,

there is the sweet touch of someone who's just two,

with three little words that will get me through, "Mommy, it's okay"

Knock, Knock

an old piece, never published

When thinking of one of Austin's therapists, I can't help but think of the old saying, "Knock, Knock, anybody home". I've determined that "nobody's home". Do you ever wonder how some people ended up choosing their profession and if they've chosen the right one? In Austin's therapist’s case, he didn't have to be promoted to his level of incompetence, he chose it.

Being open and honest, I tried as tactfully as I could (imagine that) to tell this therapist that he needs to deliver the goods. He needs to prove he is an asset to my team and willing to work with the school system. He needs to contribute. Sitting there and telling me what a good job I'm doing adds no value to my or Austin's life. Is my insurance company paying him to provide compliments? I think not.

Here are just a few of the signs that your therapist needs therapy of their own and that you need to find a new therapist.

·       He doesn't recognize that your child has a disability. It would be wonderful if I could just tell Austin "that's not nice so don't do it" and it would fix everything.

·       It took him three months to find your child's file.

·       You provide more information to him than what he provides to you. Almost as if you are the therapist and he is the patient.

·       When asked to provide input to the school on how to deal with your child's behavior, he writes a two-paragraph letter. The letter merely states that the child went through outpatient therapy and that they were not successful in completing a psychological evaluation. He also notes that the child suffers from Autism and Fragile X Syndrome. Wow, was that ever a revelation! Talk about stating the obvious.

·       After finally finding the child's file during one visit, he requests the parent to review his recommendations from the last three-month's sessions. His notes from one of our sessions indicated, "the parents are to divorce". That was news to me as no such comment was even remotely discussed. I've always thought my husband and I managed very well considering our challenges.

·       On your last appointment, which they scheduled for 1 p.m., they walk into the waiting room and tell you the appointment was for 2 p.m. Then, during the appointment, you explain the need for a medication refill and that you've called their office about previously during the week. He then spends the entire appointment time trying to contact others to get the refill and doesn't even get that accomplished. Next, he promises to take care of it the next day. On the next day, after leaving him three messages, he finally returns your calls after 5 p.m. to tell you he can't get the refill until the next day. Naturally, your existing prescription has run out and you will be left with no medication for the morning.

Well, we all have our breaking points and he's it. I've decided that if I should ever have to visit him again that I'll bring a permanent marker and write "Useless" across his forehead. So, if by chance you're looking for a therapist, check their forehead for my mark.

Take care of yourself first of all

 November 2006

Far, far away, in the land of king and queens, there is a tale of sorrow, a tale of hopelessness.

It does not begin with “Once upon a time” nor does it end with “happily ever after”. It’s a modern day Shakespearean tragedy.

On a Sunday afternoon in April, Alison Davies and her 12-year-old son, Ryan, leapt to their deaths from the HumberBridge, in England, leaving behind only a short note for family, "Don't worry about me. I don't want to be a burden. I don't want to fail Ryan any more. I wish you all the happiness you truly deserve. Alison."

Davies had a history of depression, combine that with the fact that she was a single parent and primary caregiver of a child like mine, who has Fragile X Syndrome, and the consequences were ultimately tragic.

It’s a story that has haunted me since the first news release that told of their journey. I cried then, and I still cry now.

I never felt anger towards Davies; I only felt sorrow and empathy for Alison, Ryan and their family. To be frank, I felt relieved that I have never experienced that level of desperation.

My anger with this story was always directed towards the lack of social services -- support that could have been available that might have changed the outcome.

Sadly, the lack of services and support is not unique to England, nor does it apply only to children with developmental disabilities.

Davies family tried to ease her burden as much as possible but what she really needed was support that would have enabled her to independently care for her son -- and most importantly care for herself.

Whether you listen to Dr. Laura or Dr. Phil there is a common message when it comes to caring for your family, especially when caring for an individual with a disability or a chronic illness.

The message is to take care of yourself first.

Everyone needs a break. Everyone needs time away from there situations, which can be emotionally and physically draining. I’d be surprised if there was even one person who read this column who couldn’t identify at least one person who carriers an unusually heavy burden.

I’ve survived, and my marriage has survived, because I’ve recognized the benefit of respite. My husband and I often have date nights.

We started when the children were babies, which enabled them to adjust to sitters and being left in the care of others.

There is nothing better for my soul and sanity than being able to occasionally turn my back on the portion of my life that can be so demanding.

Yet, there are many caregivers who never have that opportunity. It’s a two-fold problem. 

First, there are not enough programs available that provide this service and money is often tight in families with children with disabilities due to extra costs.

Second, many caregivers are reluctant to ask for help or they feel it would be too much of a burden for someone else to carry.

We are approaching the giving season and a season in which depression, for some, will intensify.

This holiday season think about giving a gift that may really matter. Think about giving your time to provide a little respite to a caregiver who might be in dire need of it.

Taking care of each other is not the sole responsibility of social services; it’s the responsibility of every one of us. As an individual, organization or government service, we can all make a difference.

In the end, it might make all the difference in the world.

Try not to resort to Plan C

 July 2006

 One of the most challenging roles I have as a parent of child with a disability, in our case Fragile X Syndrome and autism, is the necessity to prepare my son, Austin, for events that enable the whole family to participate.

To survive, and thrive as a family, I’ve learned to focus on not forgetting who we were before the diagnosis. I try not to let the disability and diagnosis define what our family does or does not do together.

As a result, I often operate with two plans in place, Plan A and Plan B.

Because of anxiety it’s difficult for Austin to go to new places. Once we’re there I need to help him transition from one event to another. His need for routine is the one thing I struggle with the most because there are times where I’d love to be spontaneous.

Father’s day was a good example of “Plan A and B.” We had a family reunion in Canadawith my husband’s very large family. His family’s get togethers are never small, quiet events.

Plan A is very simple -- we go, we eat, we visit and we play. Plan A will define who we will see, when we will leave and return.

Plan B provided emergency intervention and recognized that Austin might have difficulties coping with the new situation.

It involved dividing the family for the journey, traveling in two vehicles, having an quick exit in place, an emergency backpack filled with things that may occupy and or calm him.

Father’s day began a little bumpy; it was at a park we’d never been to before. If it would have been closer, Plan A might have included a couple of trips to the park before the event. After spending an hour in the van getting there, he struggled with entering an unfamiliar environment. We weren’there five minutes and I almost had to move to Plan B.

Instead, we took a break away from everyone and allowed a little more time to adjust to the new place, away from the noise and the people. Thankfully, he got back on track and eventually re-joined the party.  

Later in the day, he even participated in his first baseball game with his cousins. He started as a spectator and eventually joined in the fun. Poor muscle tone and hand/eye coordination don’t work to his advantage when doing anything physical. And he is very literal which can further complicate things, when you tell him to run to first base he does exactly that -- he runs only to first base and stays there.

When at bat he was given ample opportunity to hit the ball on his own and then accepted help after swinging and missing several times. With assistance, he hit the ball, the look on his face was priceless.

As family in the stands shouted “Run, Austin, Run” he awkwardly shuffled his way towards the base.

We yelled as if he was going for a record, but – as in life -- we were taking it one base at a time.  On one trip, he stopped in the middle of going to base to say “Hi Mom!” Every time he crossed home plate he was greeted with high-fives, then quickly grabbing a bat and patiently waiting in line for his next turn at the plate.

Father’s day reminded me how important Plan A and B are because the alternative is not very appealing.  

The alternative, Plan C, would define who we are by the disability and diagnosis first, not the family.

There are days when Plan C almost looks inviting but the toll it would place on the family would be devastating. We’d stay home and never try anything new, feeling trapped because of the disability.

Many times in life we may all operate with a Plan A and B.

No matter what your challenges may be I’m hoping you’re not letting the alternative, Plan C, dictate the course of your life

Murphy's Law

November 2001 - an unpublished column

I'd really like to know who this Murphy is and why he (a woman wouldn't have such a sad sense of humor) should visit all of our lives in such a negative way.

It's a Monday and Jerry has been out-of-town since Friday. Murphy had the nerve to visit while Jerry was gone. The fun started when Austin got sick, then you know what happened, I thought Austin was better, Gen got sick, Austin got sick again and then Natalie got sick. Now if that wasn't enough on Sunday at nine p.m. Murphy decided to plug up the toilet. It must have been Murphy because all of the kids have denied doing anything that could have caused the plug up.

Now, I'm a strong willed person and went into this situation thinking I can do this. After midnight the toilet was still plugged. On the bright side the water had only overflowed once when during a forceful attempt to unplug this silly device it flushed itself. After that I was prepared with something to quickly bail the toilet if need be.

I tried the true and tested rule that sometimes things are better after you sleep on it. Well I awoke on Monday morning only to have very sore muscles, blisters on my hands and three kids who were still sick and who naturally had to use the potty. So we improvised. Natalie was told we were going to do it the old fashioned way when people didn't have indoor plumbing if we just had to pee we would go in a bucket. This worked for Austin as well. As for Genevieve she wanted nothing to do with the bucket. So I had her pretend she was Madonna and pee in the shower, hey if the material girl can do that, so can Gen.

Next, I had to accept defeat. During the night I had contemplated taking apart the damn thing, changed my mind and during the process decided to clean the bathroom. I figured I may have company and we didn't want anyone judging me by my dirt. First line of support in the morning was dear old Dad who was over before 7:30 a.m. with two different types of snakes. Murphy almost made me happy when Dad plunged once, twice, three times and it was still plugged. There is nothing a woman hates more than when a man shows up and makes it all look easy. By 8 a.m. dad had given up as well and it was time to let my fingers do the walking. The call for help was made shortly after 8 a.m. and I was told the plumber would contact me. By 9 a.m. I felt it necessary to stress the urgency of my situation, three small children and one non-working toilet. My knight in shinning armor finally arrived in a big white van shortly before 10 a.m. Ten minutes and $75 later I had a fully functional toilet and the cleanest bathroom on the block.

So please, if you happen to see Murphy let him know I don't appreciate him plugging up the toilet and he owes me 75 bucks.

A Walk in My Shoes

May 2002

If you walked in my shoes,

you wouldn't feel the need to explain yourself,

you would love thyself.

If you walked in my shoes,

you would understand my passion,

you would never fail at compassion.

If you walked in my shoes,

you wouldn't need words to talk,

you would feel the occasional heaviness in my walk.

If you walked in my shoes,

you would share in my sorrow,

you may fear what lies in tomorrow.

If you walked in my shoes,

you could make my choices,

you would disregard all other's voices.

All this, from just a walk in my shoes.

Some words hurt more than others

November 2005

What’s the hardest part about being the parent of a child who is different?

It’s the continuous struggle to teach people to look past the differences and to recognize the child as a child first and foremost.

That’s not an easy task considering the attachment society has with assigning labels to people and places. 

My son, who has fragile X syndrome and autism, has been referred to using many labels; autistic, handicapped and mentally retarded to name just a few. The more I hear these references the more I hate them.  

Why?  Because they focus on what is different. Those who use them forget he is only a child who has feelings and emotions. They choose not to realize this is a child who understands more than what others believe he can comprehend.

He is not autistic; he is a child who has autism. He is not handicapped; he is a child who has different abilities. He is not mentally retarded; he is a child who learns differently and slower than others do.

For me, the worst and most degrading of the three labels is “mentally retarded” because of the slang word “retard” that is often associated with it.

Take a walk in my shoes. How would you feel?

A mom told me her child looked “retarded” in his school picture. I kindly asked if she meant he looked like my son.

Although, the word has  been banned in my daughters’ school, I still hear children call each other “retard” in the halls.

At the beach one day, a child asked his friend, in a very negative tone, “Is he retarded or something?”

On many occasions, I’ve heard adults, who should know better, say something to the effect as “What are you retarded?” 

I became agitated driving one day when members of a local charity organization were out collecting donations and their vests read “Help Retarded Children”. As far as I was concerned, they might as well read “Help Retards.”

At yet another outing with my daughters, we were subjected to the sound of one child again calling another child “retard” as a means of insult. 

“Retard”, and any form of the word, in my family is known as the “R” word. For me, it’s as derogatory as any racial or ethnic slur, all of which will never be spoken in our house. They are forever banned. 

In our community, if I had one wish, it would be that the word “retard” and all its deviations be banned. 

Children will grow up to exhibit the lessons taught to them by their parents. So teach your children well and please don’t focus on the diagnosis or what is different about someone.

Focus on the unique individual behind the diagnosis.

If you’d like to learn about, “People First Language: Communicating with and about People with Disabilities” visit www.bridges4kids.org/articles/8-03/NYDOH.html. 

Some may think I’m overly sensitive but when I hear or see the “R” word it not only hurts me, it hurts my children too.

In the end, I can only hope that Austinwill never ask with a tearful eye, “Mom, am I a retard?”

That would break my heart, and if you walked in my shoes, I think it would break yours as well.

One day in the storm of life

October 2005

 I seldom focus on the negative but when life happens it’s not always positive.

It was August 30, the first day of school for the girls, a time of celebration. We started preparing for this day two weeks ahead of time. I thought the morning would be smooth as silk but then the FX fairy visited during the night.

Austin awoke and greeted me with a mess. All the extra attention I wanted to give to the girls had to be directed towards Austin and the clean up.

Mom had to keep all of her emotions in check and put on a happy face, after all, that’s what mothers do.

I made it through the drive and our special pictures were taken with big smiles all around. I almost made it out of the school before my tears started but Peggy, a staff member, stopped to thank me for something and the dam broke. At least the girls didn’t see it, because the last thing I wanted to do was to ruin their special day. The hugs I received from Peggy helped turn my day around.

Grief never truly ends and the heartache is always there, just beneath the surface. I only wish I had a choice as to when and where it’s going to take over my life.

I recognized that it was time to start self-therapy and began by looking for a little humor to lighten my load. That was easy, considering how bad the day started out it couldn’t get much worse.

Austin's room was cleaned and the girls had a terrific first day at school. Thanks to Dad, we ended the day with a back to school celebration dinner at a local restaurant the kids enjoy.

It's strange how the important things in our lives are always highlighted.

Throughout the day, I witnessed on TV the havoc and devastation left behind by hurricane Katrina. I worried about the families that didn't have the means to evacuate, especially those who might have had children or loved ones with special needs.

In retrospect, my morning might have felt like a hurricane went through but I was grateful that I still had a roof over my head, running water, electricity and those basic needs we often take for granted.

Before, during and after hurricane Katrina, I watched Jim Cantore, from the Weather Channel, reporting from within the storm’s fury. I’ve always admired Jim because he is a father of two children with FX. He is a constant reminder that for many of us, FX is our biggest hurricane. In the end, I hope both Jim and I will ride the FX storm out together, at least in spirit, right to the cure.

The FX hurricane is growing.

It was previously estimated that one in 250 to 259 women are carriers of fragile X syndrome. In July 2005, the American Academy of Family Physicians reported that one in 200, maybe as high as one in 100, women are carriers.

Yet, many doctors are still advising parents that it’s not necessary to test for FX.

Those same doctors have no idea how Fragile X-associated Tremor/Ataxia Syndrome (FXTAS) and Premature Ovarian Failure (POF) are affecting the parents, grandparents, aunts and uncles of the children.

Those doctors are rendering special intervention programs inoperable. To me, this would be like not calling in FEMA after a hurricane or placing an individual in a FEMA leadership position who has no crisis management experience.

Why? Why would anyone listen to someone who knows so little on the subject?

With compassion, I recognize that we all have our own storms to endure. I’m hoping you’re doing whatever you can to make a difference and get through.

If you can afford to give, and you haven’t done so, please think about giving to the numerous reputable organizations supporting the victims of Katrina. Somewhere out there, there is a little boy or girl, just like yours or mine, with nothing to go home to.

With admiration, I applaud the residents (many from the Downriver area) and owners of Vining’s Trailer Park, Munith, Michigan, who participated in an end of the season block party raising $6,000 for the victims of Katrina. Together we made a difference.

If you want to learn more about my hurricane, go to FRAXA.org, the FRAXA Research Foundation or FragileX.org, the National Fragile X Foundation. And in case you didn’t know, October 5 is National Fragile X Research Day.

Temper fear with hope

August 2005

Fear and hope. Two simple four-letter words that can control your life. 

The American Heritage® Dictionary of the English Language defines fear as:

·        A feeling of agitation and anxiety caused by the presence or imminence of danger.

·        A state or condition marked by this feeling.

·        A feeling of disquiet or apprehension.

·        Extreme reverence or awe, as toward a supreme power.

·        A reason for dread or apprehension.

Fear is something many of us live with every day of our lives.  At times, our fears are exaggerated because of world events.

Franklin Delano Roosevelt once said, “The only thing we have to fear is fear itself.” 

Fanatics often use terror as a means of control and power by producing fear.

Yet, fear doesn’t have to be a result of a world catastrophe. If you’ve experienced the diagnosis of an illness or disability, you understand that at times fear runs rampant.

If you’re the parent of a child with a disability, one of your greatest fears may be who will love and care for your child after you’re gone.

If you’ve lost your job and you don’t know how you will feed, clothe or provide medical care for your family, you understand fear. 

What will tomorrow bring?

On my journey with fragile X syndrome and autism, the most difficult times are when we stop making forward progress and regress.

Our life often mirrors the board game of Sorry, we precede three steps forward only to later fall one step back. There are times that I fear we won’t make progress.

Fear of the unknown may be the greatest fear of all. 

Fear can be crippling. 

How many opportunities do you miss out on because of fear?

I know a few parents who don’t take their children out in the community because they fear their child might have a meltdown in a public place.  In the world of disabilities, meltdowns can be a common event.

Meltdowns are something parents learn to live with. Parents may not necessarily fear the meltdown itself but rather what others might think or  how others might judge them or their child.

There are those who are afraid to go out in public merely because of the way others may stare at them or their children.

I’ve met a few people who haven’t been to a doctor or specialist because they fear a diagnosis.

I’ve encountered a few people who fear the label “mental retardation” because of their preconceived and erroneous understanding of what “mental retardation” is. 

There are people who won’t leave an abusive relationship because they fear being alone.  A life of misery, instead of happiness, is a colossal price to pay all because of fear.

Fear can take a tremendous toll on one’s well-being.

As for hope, the American Heritage® Dictionary of the English Language definition of hope is:

·        To wish for something with expectation of its fulfillment.

·        To have confidence; trust. 

Given a choice, if I’m going to have one emotion control my outlook, choices and life, I’m leaning towards hope.

My greatest fear is that one day I may lose hope. Without hope, it would be difficult to face the dawn of another day.