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. 

Follow the rules of the sandbox

July 2005

 It’s summertime and once again I’ve got that feeling of Deja Vu. The sandbox has been opened for a couple of months and I am right back to where I was last summer, explaining the rules of the sandbox.

·        Sand stays in the sandbox.

·        Sand stays out of our pants and hair.

·        Sand is not for throwing.

·        Be courteous; use good manners by saying please, thank you and your welcome.

·        Be creative.

·        Be non-judgmental of other’s castles, be non-judgmental of others.

·        Make room for others by not being a sandbox hog.

·        Be respectful.

I’ve actually thought of posting the rules above the sandbox even though most of the sandbox players are too young to read.

Sometimes it’s difficult for children to remember the rules.

I’ve found with my son, who has fragile X syndrome, that putting the rules in writing can be a simple solution. Using the written rule as an arbiter of “good behavior” removes the test of wills between the child and the adult that often accompanies the enforcement of the rules.

I’ve created a numbered list of our most important rules that I keep on a simple key-chain of 2” x 3” cards. Some of the rules address good manners; others address negative behaviors.

Some of our “key-chain” rules are:

·        When you need to ask for something use the word "Please".

·        When someone gives you something or does something nice say, "Thank You".

·        Don't hit, hands are not for hitting.

·        Always keep your hands to yourself; some people don't like to be touched.

·        Don't throw things (unless it is a ball outside).

·        If someone is doing something you don't like ask them to stop.

·        Don't kick anything but a ball.

·        Always wear your seatbelt when traveling in a car, truck, bus or van.

·        Always go to the bathroom before leaving for anywhere.

If my son doesn't want to buckle up in the van, I tell him he has to, it's the law and Rule No. 25, and then I show him the rule.

When we leave to go anywhere I no longer have to argue with my children to use the bathroom, I just say time for Rule No. 27 and they’re all scampering off to the bathroom.

One morning my husband broke Rule No. 12 when playfully bouncing an exercise ball in the house, with my youngest daughter.

After he departed for work my daughter couldn’t wait to tattle on him, especially since he knocked over a glass of water. After all, it’s a rule and the rules aren’t just for those of us who still play in the sandbox.

Life imitates playtime in the sandbox. We could all benefit from a written list of rules, similar to my sandbox or “key-chain” list of rules.

I’m willing to wager that many of you have attended meetings in which you wished the players, all adults, followed the rules.

Just think of what a better sandbox we’d all get to play in if everyone followed the rules, especially the unwritten rule, “Do unto others....”.

Fly High; redefine ‘normal’

April 2005

This stay-at-home mom has once again been flying high.

My son and I recently participated in another research study for Fragile X (FX) syndrome at the Waisman Center in Madison, Wisconsin.

We departed on a Sunday in the middle of a February snowstorm. It’s one of those experiences when you ask yourself  “What was I thinking? Traveling in February, in Michigan?” We left home late knowing our flight was delayed only to arrive at the airport to find the flight was delayed again. What a fine start for a trip with a child with anxiety problems. 

Austin did well waiting because he could see that the plane wasn't there at the end of the gate. Once the plane arrived the Austin pace began (three steps, two spins - always to the left).  Luckily, we were able to board first on a very full flight.

The next true challenge was soon to begin; after taxing to the runway, we sat for two hours, waiting to be de-iced. Austin managed well but occasionally expressed verbally what every other person on that plane was probably thinking. Mom kept his anxiety in check by keeping her anxiety in check.  He is very intuitive; I call it his sixth sense.

With all the waiting we spent on the plane I figured he'd had his fill for the day so once we  got there we caught a cab to the hotel along with another rider on this snowy Wisconsin day. When we arrived at the hotel, I was barely out of the cab and Austin was already in the hotel lobby. Just as I was passing through the entrance doors, he was in the elevator with the doors closing. I bolted and quickly pressed the button. For a moment, I wondered where I would find him next. After about 10 seconds (which felt like an eternity), the doors opened and there was Austin.

Austin has an extraordinary memory that can sometimes be an advantage but at others a disadvantage. He remembered that during our last visit in May we were on the second floor. The kind gentleman behind the desk offered to give us the same room again if we could remember the number. I couldn't so I told him thanks but it didn't matter. 

During dinner all the anxiety caught up with Austin. He started gagging so we ran to the nearest  restroom.  Not a typical dinner out but mom understood how difficult it was for Austin to keep his anxiety in check. I knew how hard he was working to keep it together.  

On Monday, we were extremely busy. When I wasn’t working separately on my part of the study, I was entertained by watching Austin perform his various study tasks from the observation room.

On Tuesday, we were running well ahead of schedule but with a new challenge. Austin had a blood draw scheduled. I did all that I could to prepare him. He seemed willing to comply after mom told him this might help others with FX.

This is an unusual study because they will compare biological factors to determine if they can identify anything that makes a difference or correlates in a FX child's communication ability.

As part of the standard procedure before drawing blood, the research team read from a script to Austin that ended with “if you don’t want to do it, you don’t have to”.  Yet, he once again surprised me. Austin and his entourage (mom and two staff members) left the building for the lab. He was a professional only saying “ouch” once while they filled three tubes with blood.

We finished before lunch and decided to gamble by trying to catch an earlier flight home. Once again, my motherly inner voice was saying, “What are you nuts? Standby with an FX’er”.  FX’ers typically struggle with change or transitions, so I knew I was taking a chance but it was something that I thought I could handle.

For our return flight, we were randomly flagged for an additional security check. At least I'd like to think it was random and not that we look as if we pose a threat to national security. I coached Austin through what to do, place your feet on the footprints on the floor and stretch our arms out like airplanes. In the end, I counted it as another opportunity to introduce a couple more people to a child with fragile X and autism.

We managed to get on the earlier flight and the trip home was as smooth as silk.

Our feet are physically back on the ground and there is no place like home.  Now that I’ve had the opportunity to reflect on what we’ve accomplished, I’m still in awe by our success. 

If you had asked me five years ago if I would be traveling, by plane, alone with my son, I would’ve thought you were insane. Yet, during the last five years we’ve redefined our “normal”. It took time for us to realize that our “old normal” wasn’t working because we weren’t living life to it’s fullest, and it wasn’t productive, for any of us.

Moving on, embracing a “new normal” has made numerous things possible. I wonder how many opportunities would’ve been missed without the change.

How is your normal working for you? I wonder what are you missing? 

Take Notice of the State of your AreaThe State of the Neighborhood

March 2005 (and the saddest thing of all is how little things have changed over the last eight years)

After sitting though the State of the Union address, the State of the State and reviewing some of the numerous budget recommendations, I think it’s time to report on the State of the Neighborhood.

In my neighborhood:

• Some families have no health insurance.  
• College graduates, after spending thousands and thousands of dollars on a bachelor degree, are unable to find full-time positions in their fields of study.  
• Our children are being left behind (despite government programs such as No Child Left Behind). 
• Social Security is in crisis.

Health insurance was one of the key points of discussion in the 2002 State of the Union Address. Isn’t it odd that after three years there’s no resolution?

Gov. Jennifer Granholm is stressing the importance of higher education, which I agree with, but higher education does little good when there are no jobs available for many of our college graduates.

Gone are the days when people had jobs lined up before graduation. Many graduates spend days, even months, on their job search and far too often end up with a job that has nothing to do with their degree. They have bills to pay and can’t search forever. 

School funding is a disaster with little relief in site. It’s clear that there isn’t equity in funding. It’s time our decision makers go back to school and do the math. 

Here’s how the funding breaks out for just a few local districts (class funding is based on twenty-five pupils):

·         River Rouge receives $8,616 per pupil or $215,400 per class.

·         Trenton receives $8,543 per pupil or $213,575 per class.

·         Detroit receives $7,034 per pupil or $175,850 per class.

·         Lincoln Park and Wyandotte receives $6,700 per pupil or $167,500 per class. 

To address the school-funding crisis the Michigan budget proposed an increase in funding per pupil. Public schools would receive an additional $175 for each pupil and an additional $50 for each high school student.  This equates to $4,375 more for a classroom of 25 elementary school pupils. 

Although, the schools would each benefit from the increase, does it make sense to give every district more? Doesn’t it make sense to make the funding equal across school districts and level the playing field?

As a parent, and as a taxpayer, I question why Lincoln Park and Wyandotte students aren’t worthy of the best education money can buy?

On the other hand, if I were a parent of a student attending a school in River Rouge or Trenton’s district I’d wonder how that extra $45,000+ per classroom is being invested in my child’s education and future. 

Ironically, I do agree with one thing. I strongly believe there will be a Social Security crisis in the near future.

Similar to President Bush, I see a train wreck coming. However, my concern is not associated with the growing number of retirees, but rather with Social Security Income (SSI) for individuals with disabilities. 

As an example, the number of children diagnosed with Autism Spectrum Disorders (ASD) is reaching epidemic proportions.

The U. S. Department of Education noted between 1993 and 2003 an increase of 628% for students with ASD and the numbers are still growing.

I’m not worried about my retirement; I’m worried about giving my child, with Fragile X syndrome and Autism, the opportunity to live as independently as possible, within my community.

What is the state of your neighborhood? Isn’t it time you let your elected officials know how you feel! 

Fragile WHAT?

By Mary Beth Langan and Sally Nantais

(written a very, very long time ago, and yes we still hear "Fragile WHAT?")

Although Fragile X Syndrome is the most common known cause of inherited cognitive impairment, the up-to-date name for mental retardation, the average person has not heard of Fragile X Syndrome.  The average health professional has very little knowledge, or dated knowledge, of Fragile X Syndrome.  Until our children were diagnosed, we were average people asking, “Fragile what?”

Cognitive impairment related to Fragile X Syndrome affects probably one in 4,000. However, because more milder learning difficulties are probably much more common, it is estimated that one in 2,000 are affected.

Approximately 1 in 100 to 200 women and 1 in 800 men are carriers of Fragile X Syndrome.** 

It’s critical to remember these numbers are only estimates because it is also estimated that 80-90% of people with FXS are not yet correctly diagnosed.

Fragile X Syndrome is a genetic condition caused by a mutation of the FMR1 gene on the X chromosome.  The mutation can differ from person to person, typically a boy with a full-mutation’s genetic material does not produce FMR1 protein, or not enough of it.  Through research, it has been determined that the FMR1 protein is critical for typical brain development. Boys only have one X chromosome, therefore they are typically more affected than girls. Girls have an advantage because they have two X chromosomes; an unaffected chromosome may produce enough FMR1 limiting the affect.

What does this really mean?

Unless a parent already knew they were a carrier of Fragile X Syndrome (FXS), they wouldn’t know their child might have FXS until they began to see developmental delays.  There are minor physical traits noted in many persons with FXS, but not in all.  These are traits which may also be present within the typical population, nothing unique which would necessarily indicate FXS testing is necessary for your child.

Fragile X Syndrome may cause:

·        Mild learning problems to severe cognitive impairment

·        Behavior issues such as ADHD and ADD

·        Autistic-like features such as poor social skills, poor eye contact, hand-biting and hand-flapping

·        Shyness and social anxiety

The majority of persons with FXS have autistic-like features (estimated at 50–90%); a smaller percentage (approximately 30%) have a true dual diagnosis of autism. 

Within the first few years in the life of a child with undiagnosed FXS, two of the most common things parents often notice are language delays and sensory issues.  Even after a diagnosis of FXS, many parents believe working on these issues are the most important methods to help their child be the best they can be. 

In recent years, research has also discovered that Fragile X Syndrome (FXS) not only affects children with a full mutation, but also male and female carriers of FXS.

·        Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), discovered in 2001, is a neurological disorder that can involve tremors, balance irregularities, difficulty walking and dementia which sadly is often misdiagnosed as Parkinson's and/or Alzheimer’s. This condition is present in some older FXS carriers (typically after the age of fifty), usually in males but FXTAS can also affect female carriers.

·        Premature Ovarian Failure, more commonly known as early menopause, is a condition that affects 20-28% of the female FXS carrier population.

Who should test for Fragile X Syndrome?

According to the American College of Medical Genetics (2005), individuals for whom testing should be considered: 

Fragile X Syndrome:

Individuals of either sex with mental retardation, developmental delay, or autism, especially if they have (a) any physical or behavioral characteristics of fragile X syndrome, (b) a family history of fragile X syndrome, or (c) male or female relatives with undiagnosed mental retardation. Individuals seeking reproductive counseling who have (a) a family history of fragile X syndrome or (b) a family history of undiagnosed mental retardation.

Ovarian dysfunction:

Women who are experiencing reproductive or fertility problems associated with elevated follicle stimulating hormone (FSH) levels, especially if they have (a) a family history of premature ovarian failure, (b) a family history of fragile X syndrome, or (c) male or female relatives with undiagnosed mental retardation.

Tremor/ataxia syndrome:

Men and women who are experiencing late onset intention tremor and cerebellar ataxia of unknown origin, especially if they have (a) a family history of movement disorders, (b) a family history of fragile X syndrome, or (c) male or female relatives with undiagnosed mental retardation.

Testing criteria is specific, yet as parents of first generation children with Fragile X Syndrome, we often question statements like “male or female relatives with undiagnosed mental retardation.” Until our children were born, no one in our families fit this description.

What is the most important reason for testing for Fragile X Syndrome?

Test for Fragile X Syndrome (FXS) to obtain a diagnosis or to rule it out.  If you don’t have what may be the correct diagnosis of FXS, then you will never be aware of improved treatments or the cure when it’s found.

Within our lifetime, quite possibly within the next 10-20 years, we believe there will be a cure. With a diagnosis of Fragile X Syndrome, there is hope. After all, they are just one gene away from a cure.

When testing for Fragile X Syndrome, it is critical that the correct blood tests are ordered – the Fragile X DNA (Southern Blot) and Polymerase Chain Reaction (PCR) tests. Inaccurate results occur far too often with the generic chromosomal panel.

If you would like to learn more about Fragile X Syndrome, go to fragilex.org for the National Fragile X Foundation or fraxa.org for the FRAXA Research Foundation. 

July 22 is Fragile X Awareness Day. Our hope is that this time, next year, we won’t hear “Fragile what?” as often, at least we’ll know you won’t be asking “Fragile what?”

Mary Beth Langan and Sally Nantais are both Fragile X Syndrome carriers; each has a son with Fragile X Syndrome. 

** American Academy of Family Physicians, News and Publications, Vol. 72/No. 1 (July 1, 2005) http://www.aafp.org/afp/20050701/111.html