Hope this day is Frightfully Fun!!

“Nothing, Mom,” she replied, “Just trying to get used to my future.”

Nice!

We had a family meeting on Tuesday and we reiterated curfews.  All of Lauren’s, until this year, her senior year, have been at 11:00 p.m.  So we made Austin’s the same even though the dance is done at midnight. 

When we wrap up a family meeting we let the kids voice how much we sucktheir opinions on what we had talked about. No one usually speaks up except Lauren.  And usually she doesn’t want to but she says something to the effect that we won’t listen and then we make her say what is on her mind.  Darn child will never learn .

We were very surprised when she said that she felt that our curfew for Austin was not fair. Do wha-huh!? Not what we expected at all.  She felt that after watching him meld so easily and smartly into the high school culture that he should be allowed to stay til it ended.  She felt that he was much smarter than her when navigating through it all and should have that privilege.  I can’t say that either of us could disagree but we also wanted to give all 4 kids the same rules.  But since she had a valid point and was right we are allowing Austin to stay until midnight.

But here is the kicker ~ when we told Austin he was not impressed. 

“Why did you do that!?” he asked her.  “Now I have to come up with one more hour of conversation with my date.”

Poor Lauren.  Even when she tries to do good she still doesn’t get it right.  We love her though.  She tries

MY 1ST GRAY HAIR!

Yes, I did say stoked. All of my friends have been finding their first and I’m sitting here like, “um, yeah, I feel so bad for you.”  “Sure I understand.” We all knew I didn’t have a clue. So, it’s kinda like when a girl starts having her periods.  She is excited to be in “the club” but at the same time hating how much it sucks!

And so of course, I had to save the hair.  So, I’m hoping the wives tale about pulling a gray hair isn’t true I stuck it between two pieces of tape, dated it and put it in my keepsake box. 

My family is on the verge of finding me a padded room at this very moment.

We got them by pure incident.  Yes, I said incident.  We were set up.  My father-in-law has a ’91 Ford pickup.  My brother-in-law sorta inherited it.  He was using it for his landscaping business.  In the last couple of years he has bought two more trucks.  One he uses for the business and one he uses for personal stuff.  Since he didn’t need a third he offered to GIVE it to my husband. 

My initial thought: Nothing is ever free.  I told my hubby, who was ecstatic, that it was awesome but what was the catch.  He swore that there was no catch.  They just wanted to keep the truck in the family.  Uh-huh.

The day arrived for my hubby to go get the truck.  I dropped him off in all his bubbly glory.  I was happy that he was getting it, but us women get these gut feelings, ya know.

He was gone a long time but I figured he was learning about the bugs of the truck and hanging out with his parents.  On his way home he called me. 

“Honey, I bringing home some cats.”

EXCUSE ME

“Before you say anything, we are only going to keep 1 and the rest I’m taking to the pound.”

HUH!

Apparently, this stray cat arrived at my in-laws.  My sis-in-law named her Myra.  She was very lovey but skinny as a rail.  They had no clue she was pregnant until waa-lah, there were kittens in the shed that she was nursing.  They got Myra and her five kittens over to the garage.  They knew right away they couldn’t keep her & the kittens because they already have a ton of cats there.  And we all know that my husband is a sucker for animals!

By the time they stuck their claws into my husband they had managed to get rid of two of the kittens.  When Kevin showed up they were in a box and not very happy.  There were really feral.

Well, to make a long story short, Momma kitty wound up at the pound because our original cat, Winter, was beating her up.  She had horrible abrasions all over her.  And one of the kittens, we dubbed Indiana Jones, was just to feral to make it in our crazy house.  It needed a home where she was it and our house wasn’t like that.  So we were left with two. 

The black kitty is basically Austin’s.  He named it Doom-a-geddon.  I call her Doomy.  She was pretty feral at first but we got her adjusted pretty well.  She is still skittish about going outside but she is getting there.

The multi-colored kitty is Rachel’s.  His name is Brave Heart.  Out of all the cats he was the one who had no problems with people or other animals.  We tease him about being a momma’s boy because he is always stalking me and wanting loves from me. 

So now we have 3 dogs, 3 cats, 2 turtles and a milk snake. Oh and 4 kids.

We have our laser beams on...you will love us

Rachel

She is loving 5th grade.  She has the exact same teacher that I had for 5th grade!  That is how small our town is…lol.  Once again she is part of a team teaching group.  There are 3 teachers.  She has Mrs. M for her home room and science.  She has Mrs. E for social studies, reading and English.  And she has Dr. B for her math since it is special ed stuff.  She is quite excited to get to use a calculator for some of her stuff.  She has to try to do it by hand first and then after she puts in a real effort can pull out the calculator. She has had a pretty easy transition.

Matthew

He has doing amazing!!  He had no problem with the transition from summer to the new school year.  His class has doubled in size but for once it hasn’t affected him.  They put him in a computer class and he seems to be getting there.  He actually pushed a couple of buttons and jiggled the mouse the other day…lol.  So maybe in time. 

I’m highly considering asking if he can be put in a 6th grade Spanish class.  He tries to speak Spanish around the house all the time.  He has no clue what he is trying to say but when he gets frustrated or overly happy he has went from biting his hand to speaking his version of Spanish.  It would be interesting to see if he could pick up the language and use it in context.

Austin

For those of you that knew the troubles this poor boy had last year there was no where else to go but up.  And up happened.  He is doing amazing in high school.  We haven’t gotten grades yet but he is so much happier.  He has no problems getting up and getting ready for school.  We pick him up and we know he will be his smiley, funny self.  It’s been awesome.  We really love seeing this side of our boy.

Lauren

Oh, little Miss Lauren.  This is her senior year.  There are lots of transitions for her.  She is becoming more of an adult every day and realizing how much it can suck and how unfair it is.  She is trying to grasp it but it’s not easy for her.  I’m thankful that she plans to hang at home for two years and do community college.  I think she will need those two years before she sprouts her wings.  Who knows what will happen.  Only time will tell.  For now, we all just take it one day at a time, especially her.

Then, we had an issue with Lauren.  She isn’t a bad kid.  But it involved something no one ever wants to have happen to their daughter.

With that and some other stuff that had happened nationally and locally, I went into a major funk. At one time I seriously considered asking Kevin to take me to the ER and just commit me for a week.  And then one day, with no reasoning at all, I woke up and I was back to me again. 

And of course, I had to round the month out with the all important abdominal pain that no surgery can seem to stop.  Every surgery I have just seems to take one pain away and add another.  I think I’m on the downhill side of the latest episode but who really knows.  I, for sure, don’t…lol.

And that evil E word is hitting us hard core.  We are all praying that Kevin can find a different job and fast.  We are sinking pretty fast.

So I’m hoping for good things for the next 35 days, for me and for all of you.

This is my hell.  I’m locked within myself.  A piece of me will be reaching out while the rest of me is holding me in and down. No one understands.  I know I’m disappointing the ones I love.  But the force keeping me away is too strong to fight. And even though I know this, I still fight it.  Then I get sick.  Sometimes it is a simple cold or an upset tummy.  But lately it has resulted in a migraine.

Where is all this coming from?  My latest disappointment in myself and to my family that occurred yesterday. We had a family reunion.  (I just heard a collective groan from all you carriers out there.)  I had no clear cut plans.  No specific time.  No idea of what was going on or what was expected of me.  In my mind, I would know very little outside of my mom and my aunts. It was in a place that I wasn’t sure where to find and haven’t been to since my early, early childhood.

The effects started Friday.  I had tried to contact my mom to find out specs on this thing.  I was told by my young cousin that they were heading out to eat.  I won’t lie.  I freaked out!  I had children wanting to make plans.  I had exes wanting their kids.  So I did what I thought best and decided to battle the 1 instead of the 3.  I sent my kids with their other family and let Austin go to his friends.  And then I stressed.  And I worried.  I do both so well, I must say.  I do it so well that I managed to give myself a handy dandy migraine.

Saturday morning rolled around.  I forced myself out of bed around 8:30 so I could get showered.  I had to take Lauren to work and get Matthew a tooth fairy gift.  I still hadn’t heard from my mother and the pain started to settle behind my left eye. Typical, so very typical.

My mother called later to finally give me some insight on this reunion.  She was really stressed and I just couldn’t tell her that there was no way I could do this.  Especially knowing that she wouldn’t understand.  So I played along and kicked myself with every word that seeped from my lips.  Kevin got off of work at noon and by this time my migraine was in full swing.  I tried another one of the meds that the doc had given my to try out.  It didn’t work for the pain but it knocked me out most of the afternoon.

I know Lauren wanted to go.  She is such a social person.  I envy her that.  I’m glad she can be.  Kevin was following my lead.  He is such a good husband.  He tries to understand the inner workings of my crazy, defected mind.  My mother never called and I feel horrible that I bailed on her.

Today, my head is still pounding but nothing like yesterday.  My entire Labor Day weekend has been shot.  And I have no one to blame by myself.

Family Statement:

It is also county fair time.  Kevin is out there every day because his work has a giant display.  The fair puts on an awesome BBQ the Saturday before the fair actually opens up for all the vendors.  Lots of different people come in and have a BBQ cookoff and it is all you can eat.  We are doing that this evening.  So it is a pretty busy day for my respite weekend.  But I plan to sneak in a nap and shower this afternoon.

And tomorrow…well, cleaning and laundry.  All day.  Joy! Joy! :insert eye roll here

I’m still working on the rest of the stuff.

First of all they had registration for all the schools (5 total) in one building at one school.  The VP from the high school told me that the first day of registration it was taking a parent with 1 child up to 3 hours to get registered.  And that was for a returning student.  Could you imagine if it was a new student!?  Well, it wasn’t that long for me but it was that stressful.

They did registration in stations.  Each child had a checklist that had to be signed off before the parent could go to the next station.  Sounds good.  That is doable.  The first station is filling out the basic form.  The next station was the nurses desk to make sure shots and stuff were up to date.  But the third station was the kicker.  The parents were supposed to get on a computer and make sure that all of the information in the computer was correct.  If it wasn’t it had to be fixed.  When it was all done it needed to be printed out to the appropriate school station.  Stressed yet?  Well, I wasn’t.  I’m a computer pro.  I can do just about anything and I can usually finagle my way around any computer program.  Plus there was directions on the tower of how to do it.  Easy peasy!  Um, NO!!  Total freaking nightmare.  Massively confusing program. And I had to do it for 4 kids!!  I felt horrible for those parents that aren’t computer literate.

The station after computer hell was the food programs.  Okay, great.  Well, because my kids are currently not on free/reduced lunches they wouldn’t give me an application.  But for some reason felt free to check for fines for my kids so before I could rip her throat out for discriminatory behavior, I got pushed to the Charges station because Lauren had a fine.  A big one!  She had been charged $63 for a math book she apparently never turned in (but swears she did and I believe her), and $5 for dry cleaning a choir robe.  I couldn’t continue on until I forked over that money.  Rachel had to run out to my van and get my checkbook.  That was a long wait.  Registration was in a round building and she got lost.

So after I cut the check for money that was meant to be Lauren’s school clothes I hit each individual school station.  Luckily, this year I have to contend with only 3 schools.  I started with Rachel’s first.  No problems at all.  They know what they are doing and do it well.  I love them.  Up next was the middle school.  Still doing pretty good.  The only hitch we had was that the computer system that generates schedules messed up Matty’s.  They put him in art…that is just funny.  And because he is in the same SPED class all day it wouldn’t let it repeat that over and over for different periods.  I wasn’t too worried though.  My team and I basically put his schedule together as we see fit anyway.  Easy fix

And thank goodness I saved the high school table for last.  My cousin used to be the registrar at the high school.  She was awesome.  She totally knew what she was doing.  This is the first year without her and it shows!! Austin’s schedule wasn’t too bad.  He got the electives he wanted and his teachers all look great.  But Lauren’s needs completely reconstructed.  COMPLETELY!!  She is supposed to be done with high school in December.  Well, they have her signed up for spring classes.  She has morning classes at the college and it is supposed to actually be in the afternoon.  They gave her electives, which she doesn’t need, didn’t sign up for, and can’t have.  I was fuming.  She is fuming.  But she called one of the people who work in the office who helped her construct her schedule last year and they will work on fixing it today.  Thank goodness!!  Holy cow man.

So I survived the school stations…barely.  Transportation was next.  Long lines, Rachel left me to go camping, and overstressed, too many people, fx carrier anxieties kicked in and um it was near meltdown for me!!  And nothing really happened there.  He put down their bus #’s but it was useless to stand there.  I have to call him next week to have him rework a different system because they changed school times and we have to finagle more stuff because of our jobs, the sped bus, etc.  Ugh.  I may just have to be late to work and they will have to suck it up and deal.

The next station was EPO.  I liked this station.  They know what they are doing…lol.  They just checked when the kids’ IEP’s were ready.  Matty is due in September and Rachel is due next spring.  Since I was already aware this didn’t faze me.  I like it when I’m prepared…lol.

And finally I got to go to the check out station.  Hallelujah!!  BUT….there always has to be a but…I still needed to sign up the kids for the after school program.  But it was so late in the day they had all went home .  So I need to go back.  I don’t know how, or when, but I have to.  Fudge nuts.  Fiddle sticks.  Son of a biscuit eater.  Ugh.  I’ll email her and maybe, just maybe, she can drop a form off on my door.  She is good like that.  I <3 her too.

As I broke off from the registration experience from hell I had to call Kevin.  He told me to chill and despazz.  That is easier said that done.  I got home and realized that that place had been HOT!!!  I don’t think their a/c’s were working.  So I hopped in the shower.  I managed to be there for like 30 minutes.  And of course, Lauren got home and had to share her woes.  I told her to hush cuz I was despazzing.  She obeyed.  I hit Facebook when I got out cuz that always makes me smile at least a little.  And when Kevin got home he brought me a beer and I ordered pizza.  By bedtime I was fully despazzed.  So now today will begin the reparative stage.  I need to work on fixing all of the screw ups from all of the schools.  Lot’s of emails could be going out today.  I may have to make a few calls…which I just love to do…NOT!!  And hopefully I won’t have to leave and go fix anything because I just can’t.  We’ll see.

If you made it this far, and haven’t stroked out, God bless you.

It looks like Little Miss Rachel is emerging into womanhood, if y’all know what I mean.  I’m not ready but she is handling it very very well.  Her dad and step-mom are really not handling it well.  Her dad’s aunt, who is a nurse, called me on their request…lol.  So I told Rachel if she needs assistance or anything just ask her grandma or her aunt.  They will help her out. 

And Lauren has her driver’s permit.  Yes, I’m frightened but not because I think she will get in an accident.  I’m worried about her fear of getting into an accident.  You know how when you are afraid of something it ends up happening.  Yeah, that is my worry.

Austin will be starting on his driving her before too long too.  I’m hoping we can get him into the school program which is like ya know…free!!  He has this week off of soccer which has been a nice break for him.  He is kinda on the fence about soccer.  He is struggling with asthma and perfection issues his mother left him with.  He isn’t sure if he wants to keep on playing or maybe just be the manager.  The coach, Kevin & I all want him to keep playing.  He is an awesome little player and we LOVE watching him play.  But we also don’t want him miserable so we will see how it plays out. 

And Matthew…is Matthew.  He is almost as tall as me!!  I can’t believe it.  Well, I should.  I’m only 5’0″ tall and he is 13 now but still, it’s just not right.  He is done for the summer with his AmeriCorps volunteer.  He really enjoyed hanging out with her.  But she is moving to Phoenix and continuing her education…which is always a great thing.

And that is us in a nutshell.  Not as cute as a pair of kittens but you get what you get…lol.

The first thing is the gravatar widget.  You will see the image that currently follows me around on the web.  You have probably seen it lately if I’ve posted a comment on your blog or you have me on your facebook.

The next thing is a pull down menu with EVERY post I have ever written.  It is all there and easier to access than ever!  I had fun playing with it.  A lot of stuff I had totally forgotten about. 

And finally is the VodPod.  It is videos that I like or are fragile x related.  And really I think they are all fragile x related. 

So enjoy the new additions.

Well, I only got through half of what was on my list because our cart was full.  Okay, fine then.  I would come back the next available time that I had.  Matty wasn’t real impressed with that idea.  I mean, come on, we passed up the waffle aisle!  But he dealt with it.

Check out went smoothly, or so I thought.  It was leaving that was not so smooth because of check out.  I had bought two bags of dog food and a bag of cat food.  I had them laying on the bottom of the cart.  I had peeled off the sticker with the bar code from the dog food and told her to run it twice.  Well, she didn’t.  Because I had stuff on that bottom shelf the Walmart greeter checked my receipt.  She saw that there was only one bag of dog food…and she told me she had to call security.  Impressed, I was not!!

Matty is already upset that we were stopped by now we had been pulled aside.  So he was pacing around the cart. 

I was fighting with this old hag about the dog food.  She asked me what checkout I had used.  I’m not sure why she asked because after I told her she just said that she would just have to call security.  She was treating me like I was trying to steal the dog food.  I told her that I had no problem taking the food off of my cart. 

Matty was now pacing, humming, and biting his hand. 

She was like, “Well, I guess that would be ok.  But you need to put it away yourself.”

Of course, my response, “Are you serious?!”  At this point I wanted her to call security.  But Matthew has stopped pacing.

She told me then that she was not allowed to leave her post but there was a cart sitting by a cashier that I could put the dog food.

I did it as fast as I could because by then there was a very unpleasant scent in the air.  He had gotten so upset he had an accident.

The second we were out of Walmart, Matty started in with, “What the heck!? She stole dog food, Mom! What the heck!”

I got him home, showered and changed.  By then he was pretty well over it.  But never in my life has anyone or anything upset Matty so much he had an accident in public.  Never.  I’m not happy at all.  And of course, I didn’t get the greeters name.  But next time, if there is a next time, I will have a name, a manager, and security.

Carriers of premutation (CGG) expansions of the fragile X gene are generally thought to be spared most of the problems associated with the full mutation; however, a newly identified neurological disorder, involving progressively <!– –> severe tremor and difficulty with walking and balance, appears to specifically affect some older premutation carriers, generally grandfathers of children with fragile X syndrome. Although this neurological disorder occurs by a completely separate mechanism from fragile X syndrome—and affects different individuals, it is caused by the same gene, and therefore opens a new portal for understanding how the fragile X gene works. from http://www.fragilex.org/html/fxtas.htm.

As Matthew gets older I can’t help but think about his future.  Who will he live with?  How long will Kevin and I be able to take care of him?  What if when the time comes Lauren or Rachel can’t or won’t take him in and care for him.  And niggling in the back of my conscious is, “What if I get FXTAS?”

Kevin is hell bent on dying before me.  Not that he wants to.  But he assumes he will.  His family history is littered with cancer, heart disease and diabetes.  And he smokes.  The poor guy has tried to quit but his addiction is so strong.  He has tried patches, gums, pills, cold turkey, prescriptions, etc.  It never does the job.  It sounds funny to say that he needs rehab but seriously…he needs rehab.

So suddenly my biggest fear is not only who will take care of Matthew but who will take care of me.  I lived in orphanages and group homes and I can tell you right now that I ever get put in a home I would freak out!!!

FXTAS Symptoms

FXTAS usually develops between the ages of 50-80. Symptoms that family members may notice, but often attribute to aging, include:

* “Intention” tremors — shaking that often occurs when reaching for or pouring something
* Balance problems (ataxia) that cause falling or instability while walking
* Numbness in the extremities (neuropathy)
* Mood instability, irritability, and other changes in personality
* Short-term memory loss and gradual intellectual decline

Short-term memory loss and gradual intellectual decline. How scary is that?  I watch my great-grandma die of Alzheimer’s.  Towards the end she thought she was the little German girl she was in her childhood.  She couldn’t care for herself at all.  One minute I remember her cooking like crazy in her kitchen and the next she was in a room playing with dolls and speaking in a language I couldn’t understand.

There are many carrier mom’s out there who are not only taking care of their fragile x children but they are also taking care of their FXTAS parent.  Stress doesn’t even begin to cover it.  I don’t want to put that on my children.  No parent does.  So all I can do is hope for a cure, like so many other people out there who is struggling with this.

The one thing I do hate is when family stuff is going on when I don’t have my fraggles.  My parents had their annual fish fry and the kids had to miss out.  It was a huge bummer since there is so much food and people we don’t get to see very often.  Oh well, I guess there is next year and maybe I’ll give a calendar of when the kiddos are gone to my parents so they schedule it on my weekend…lol.

I got one giant surprise that caught me totally off guard this weekend.  Rachel’s dad actually went and bought her all of school stuff.  When he called me he had already bought her clothes and backpack.  He was needing her school supply list because Wal-mart didn’t have it yet.  He even called me back to have me read through it again so he could make sure he had bought it ALL!  I don’t know what has come over this man.  He won’t even work so he doesn’t have to pay child support.  But this I can handle .

 So now it is back to school time in our house.  We are gearing up for the new school year.  Austin starts on the 13th since he will be a freshman.  The rest of the crew start on the 14th.  This week we are getting back into our bedtime routine.  Rachel and Matthew kinda keep the same sleep routine all year round but Austin & Lauren kinda do whatever in the summer.  Austin is a huge night owl so many times he will be up until the wee hours of the morning and sleep most of the day.  So he has the hardest time getting back into the swing of things.  That could be why he was grouching about everything this morning.  I had to leave for work early because I wanted to strangle him over his mouth.  The joy of teens…lol.

I also learned of some awesome websites that I wasn’t aware of.  I plan to fix up my stuff over there ——> to update the links and add this stuff in.  Sally Nantais shared one on the fragile x listserv Wednesday that I’m falling in love with.  It is in plain English and broke down really well.  It is at Your Genes, Your Health.  Check it out if you get a chance.  

Some of you have noticed the different fragile X graphics that I use.  They come from Kaz at Autism Awareness Graphics.  She has a whole section just specifically for fragile x.  She even has myspace layouts for any of you myspacer’s out there.  I love her stuff because it is so fun!  She takes requests and tries her best to make sure that all statistics are up to date and accurate.  She has an autistic kiddo too so it is another outlet to show her love and creativity.

Enjoy your Friday and your weekend.  I will be enjoying a little bit of respite this weekend with a fish fry at my mom and dad’s tomorrow.  MMMMM

The love I have found in the fragile X community is huge.  I have made some amazing friends who share my journey. 

The love that has strengthened my family is also incredibly strong.  When they say that anyone can make a baby but a real parent raises one, they don’t really know what that means until a special needs child is in the mix.  Kevin may not be the biological father to my two fragile x syndrome kids but that man has more love and understanding of their needs than their bio dads do. 

The students that come into our home each semester to learn about having a special needs child at home leave with such a huge sense of love in their hearts.  Being in my kids’ aura kind of puts life into a real honest perspective.  People see what is important in life.  And that is just from two hours in our house. 

I could definitely go on and on but I really would like you to buzz over and read Mr. Miller’s words.  They sum up everything that is bursting in my heart about fragile x right now but much more eloquently.  

What are you still doing here…. GO!!

I was a 19 year old, single mom, loving life with my new baby in 1996.  I read all the books and devoured magazines on how to get babies through the stages of development.  Matthew didn’t respond to any of my attempts.  At 6 months old he still didn’t roll over.  My family physician gave me the brush off, “Boys tend to develop slower than girls. He’ll get it.”  At his 8 month checkup he still hadn’t gotten it.  And in essence our doctor fired us.  He had no clue how to go about looking for an answer.  He seemed so healthy except for this delay.  As parting gifts he sent us to a early intervention clinic and a pediatrician.

Our pediatrician was pretty clueless too.  But he was more than happy to do what it took to find an answer.  He told us that he would call one of his doctor buddies in the big city and get with me on what tests he wanted to run.  The phone rang shortly after I got home.  He had already set us up with an MRI, vision test, hearing test and chromosome test.  A few weeks later, when Matthew was 9 months old, we learned that he had fragile x syndrome.  It was Valentine’s Day, 1997.  (The chromosome test is highly discouraged now as a means of fragile x testing.  It is not very accurate and usually misses it…we got lucky.  In 1991 a DNA test, the FMR-1 gene test, was introduced. This is the most accurate test (99+%) for detecting Fragile X.)

My son is not the only one in my family to have it.  I was not aware of it when I was pregnant with my son and neither were they.  After I learned about Matthew my Aunt Bonnie had her son tested.  They learned his disability was not in fact due to her having Rh- blood but fragile x.  As time went we traced it all the way back to my paternal great-grandfather Watson.  He had given it to all of his daughters and of course none of his sons.  He had 7 kids, I think.  Four of them were girls.  Three of those girls passed it down to some, if not all, of their children.  My grandma was in that all stage.  She had two boys.  My father is a carrier; and though not tested, we are quite sure my uncle has the full mutation. 

And this is usually how it works.  A severely affected child will emerge and years of passing this gene can come to light.  With the latest confirmed numbers being 1 in 260 women being carriers, it can happen to anyone.  No one is excluded from fragile x syndrome.

Just passing along a column from my good friend Mary Beth written for July 22, Fragile X Awareness Day.  If you’d like to learn more about Fragile X I’ve provided links to excellent resources available on the web at the very end of this message. 

 

Old prevalence rates list 1 in 259 women and 1 in 800 men as carriers of fragile X syndrome but through new research studies and newborn screening (current research study) we know those numbers are old and inaccurate.

 

In more recent studies female carrier prevalence is estimated as 1 in 130 (in a study in Israel it was 1 in 113).  

 

Results from newborn screening in Spain has indicated that what we understand about male carrier prevalence may soon be changing as well. Spain’s results indicated a male carrier prevalence of 1 in 251, a huge drop from 1 in 800. It’s not just the numbers that should grab our attention, it’s what those numbers mean, a male carrier will pass fragile X on to all of his daughters, all of his daughters will be carriers. 

 

Please take the time on this day, Fragile X Awareness Day, to learn a little about Fragile X.

 

hugs, Sally  

Suggested websites:

Your Genes Your Health ~ www.ygyh.org  - fragile X page

FRAXA Research Foundation ~ www.fraxa.org

 The National Fragile X Foundation ~ www.fragilex. org

Suggested videos: If you’re a visual learner 

First Down Towards a Cure ~ www.youtube. com/watch? v=BgcQi0bbaJQ

Fragile X – Hitting the mark ~ www.youtube. com/watch? v=-6-J_YcVRi4

In print, layman terms

Time Article – Fragile X: Unraveling Autism’s Secrets
http://www.time. com/time/ magazine/ article/0, 9171,1818268, 00.html

 Time Article – A new approach to correcting autism
http://www.time. com/time/ health/article/ 0,8599,1696451, 00.html

FXTAS links

Raise the bar on FXTAS: Recognize it
http://www.psychiatrictimes. com/display/ article/10168/ 56271

http://www.fragilex .org/html/ fxtas.htm

X-tra Special Advice
BY: Mary Beth Langan and Theodore G. Coutilish
HEADLINE: Familiar Faces…   but…  Fragile X?

Each one of us has the Fragile X (FMR1) gene on our X chromosome.

We all have a number of CGG repeats on that gene.

Some of us have a typical range of repeats on our X.

Some of us have 50 to one-thousand-plus repeats. Those repeats can affect us all in many different ways that may seem unrelated at first glance.

There are those with numbers that fall within a range that deem them a premutation carrier of Fragile X and they may have certain symptoms affecting them on a daily basis throughout their lives or as they age. There are those with the full mutation of Fragile X, who are said to be affected by Fragile X Syndrome.

But what does someone affected by the Fragile X gene look like?

Consider these possible faces of Fragile X:

• a 5-year-old boy with autism and social anxiety
• a 44-year-old woman with an autoimmune disorder such as Lupus, Multiple Sclerosis or Rheumatoid Arthritis
• a 7-year-old girl with selective mutism and a math learning disability
• a 50-year-old woman with near-constant muscle pain
• a 4-year-old boy who is beginning to speak and has severe sensory issues
• an 8-year-old boy with PDD-NOS and a very selective diet
• a 76-year-old man with Alzheimer’s Disease and weakness in his legs
• a 12-year-old boy with autism and a seizure disorder
• a 4-year-old girl with strabismus (an eye muscle issue)
• a 37-year-old woman who is post-menopausal and struggling with anxiety
• an 80-year-old man with Parkinson’s Disease
• a 3-year-old girl who can only verbalize a few words
• a 40-year-old woman who has struggled with infertility for ten years
• an 8-year-old boy who has detailed obsessions, attention issues, is not reading at grade level and wasn’t toilet trained until age 4

Mary Lee Shelton of Mesilla, New Mexico says “to this day we are questioned by professionals outside the Fragile X world if we are sure our son has Fragile X. I just know there are more boys like our son! I think it was a lucky break that he was diagnosed correctly. His neurologist was stunned. Fragile X professionals aren’t surprised by his diagnosis because they see so many persons who are affected all over the spectrum. But I think local doctors only see the severely affected and miss many others that should have the blood test.”

Many professionals still use the chromosome analysis to rule out Fragile X. Our Andrew is a perfect example of why that is not the most accurate test — he tested negative with it, yet positive with the less expensive Fragile X test. We’re happy we saw a geneticist who orders the Fragile X test when a diagnosis of autism is being considered. At that point, we were saying “Fragile What?” as we knew nothing of the genetic disorder.

Shelton also shared that “the doctor who diagnosed our son told me he had a professor in medical school who told him when anyone had learning difficulties to always test them for Fragile X. He cited a case of a man who was in the army who was having some kind of problem and this professor had done the Fragile X test on him and it came back positive. Even he was shocked at this, but used it as an example to encourage more Fragile X testing.”

Accurate diagnoses can help with accurate treatment and support. For example, when better treatment for Fragile X Syndrome is soon determined — an actual cure may even be in reach — your child will need an accurate diagnosis for you to have access to such information. If a cure for FXTAS is found, your father or mother or you will need to know they have FXTAS and not a misdiagnosis of Parkinson’s or Alzheimer’s Disease.

We are one year away from 800 family members and professionals coming together in Dearborn, Michigan, for the 12th International Fragile X Conference from July 21-25, 2010.

For that reason — among others — now is a great time for those in Michigan to be tested. The world’s Fragile X gurus will be in your backyard next year. They will be presenting scientific and family-friendly sessions to help those affected by all of the Fragile X-associated Disorders. As you can see, Fragile X has quite a few possible physical and behavioral characteristics and we haven’t even mentioned them all.

Do you see the faces of some of your family in the above list?

Take a good look, in honor of National Fragile X Awareness Day, on July 22.

For more on Fragile X-associated Disorders, including other possible characteristics due to the Fragile X gene, plus accurate testing information to share with your medical professional, visit fragilex.org.

Grosse Pointe residents Theodore G. Coutilish and Mary Beth Langan created this column to share experiences from their journey as parents of a child with Fragile X Syndrome. Send your questions or comments to mblangan@hotmail.com.

NIH plan charts course to better treatments and cure for most common known genetic cause of Autism: Fragile X

WALNUT CREEK, CA — Fragile X Syndrome (FXS) research is moving closer to finding a cure with the recent approval by The National Institutes of Health (NIH) of a comprehensive plan created by a group of leading scientists, parents and advocates.

The Congressional Fragile X Caucus is convening a Congressional briefing to highlight the work of the NIH’s Research Plan on Fragile X Syndrome and Associated Disorders and to celebrate National Fragile X Awareness Day in Washington, DC. Leaders of the NIH and Centers for Disease Control & Prevention (CDC), along with leading Fragile X researchers who were instrumental in the development of the plan, will provide insights on the development of the plan, outline key recommendations, and discuss the plan’s future impact on the entire Fragile X research trajectory.
FXS is the most common cause of inherited mental impairment, ranging from learning disabilities to more severe cognitive or intellectual disabilities, and is the most common known, single gene cause of autism or “autistic-like” behaviors. Over the past several years, research programs have made significant advances in the understanding of FXS and the associated disorders of fragile X-associated tremor/ataxia (FXTAS) and fragile X-associated primary ovarian insufficiency (FXPOI).

The report recommends 19 goals and 93 objectives to help shape future research in Fragile X-associated Disorders (FXD). Recommendations range from very basic research to applied policy research. Objectives include studying educational and behavioral interventions, evaluating family support systems, identifying risk factors, and looking at molecular and biological systems.

“Implementing a plan of this scope and depth will be an ongoing process over the next few years,” said Don Bailey, Ph.D., distinguished fellow at RTI International (rti.org) and president of the NFXF Board of Directors. “It will require major funding from federal agencies, bright and dedicated researchers who are willing to focus on Fragile X, sustained advocacy, and financial partnerships, but we can see the light at the end of the tunnel. The National Fragile X Foundation fully endorses this plan, and we pledge to work with the NIH and other key partners to make sure that it becomes a living document that truly shapes future research.”
Visit fragilex.org for a link to the full plan.

###
FOR IMMEDIATE RELEASE
Contact: Robert Miller
925-938-9300

RobMiller@fragilex.org

What is sad is that it has taken me 3 years to figure this out.  No one ever said I was on top of things.

This morning a lady from the Compliance Department asked me that wonderful question.  I went into how we still haven’t caught one of the wild kittens that is floating around outside.  A week and a half ago my brother-in-law called saying that he was going to just give us their old truck.  I told my hubby that I knew there had to be a hitch.  Yep, there was.  With the truck came a stray cat and her 3 kittens.  All but 1 now live in my house and keep me up at night. 

When I finished my story she said, “You need to quit working here and just have your own TV reality show!”

Huh!  She kind of caught me off guard with that one.  I know we would never even entertain something like that.  I relish my privacy which sounds weird since I have a blog.  And my fraggles would hate it if weird people were suddenly in their space.  Matthew would literally shut down.

And another, they wouldn’t like us.  For one, we are nowhere near any major cities. Have you noticed that most reality TV shows are very near a major city?  If they need film they have to get it ASAP.  For another, there is no overbearing wife.  We’re not like Jon & Kate.  I let my husband have options and choices.  Also, none of us were ever famous, like the Hogans.  And we are nowhere near being a big family like the Duggars on “18 Kids and Counting.” 

So no reality TV for us.  They will just have to get our stories at the water cooler every day.  Well, that is unless they want to nominate us for Extreme Makeover: Home Edition.  Now that is one TV show I wouldn’t laugh at!  1000 square feet with 4 kids.  I’ll take what I can get .

Normally, I would say that it was a sign of good things to come but I got to work and found a message from the maintenance guy.  It looks like our air conditioner at work is broke again.  He warned us that it will get hot this afternoon.  Thankfully, our air conditioner at home works again because I will be rushing out of here at 5 to get to it!!

On a positive note though our temps have dropped quite a bit from last week.  Last week it was well over 100 and the sky was cloudless but this week looks pretty cozy:

Monday	Tuesday	Wednesday	Thursday	Friday
92° F | 61° F	90° F | 58° F	90° F | 61° F	92° F | 61° F	90° F | 61° F
Partly Cloudy	Partly Cloudy	Partly Cloudy	Partly Cloudy	Partly Cloudy

And I know I’m rambling but can you believe that school starts back here on August 14!!  It feels like summer just got going and now we are thinking of heading back to school again.  It is just crazy!

We refinanced our house to get a little bit of a breather but it doesn’t seem to be quite enough yet.  I’m having to utilize my flex plan in order to have money to buy school supplies.  I’m really praying that I won’t need to buy a lot of clothes for the kids because we just can’t right now.  Economy is such a dirty word in my home right now.  And at the height of our 100 degree summer, our a/c decided to break down.

But tomorrow is another day.  We will continue to try to be grateful for what we do have and somehow it will all work out.  It always does.

Yep

Nothing!

I really want to blog.  I need to blog.  I’m sure up in that noggin’ of mine is something that I need to share. But I can’t find it in there.  So I guess I will just chat.

Hey, did you hear that they released new results on fragile x testing.  Apparently, awareness efforts are not quite cutting it and children are not getting diagnosed until they are 3 years old or older!!  I was part of this test that was done by RTI International.  It was really in depth on its questions.  I feel really blessed that Matthew was diagnosed at 9 months and Rachel was in utero.

Speaking of awareness….don’t forget that next week fragile x has a momentous occassion.  It will be the annual Fragile X Awareness day on July 22.  There are a lot of stuff going on across the country like walks, bbq’s, whatever!  So check your area and see if anything is going on where you are.

So when I got a bill Tuesday for $107 for Behavior Management, I was confused.  I called the dentist’s office first thing yesterday morning to get it cleared up. 

Me:  I have this charge on my sons bill for Behavior Management.  I think it was put there in error since he did so well at the last visit.

Billing Clerk:  Oh that is just a generic code which means Special Needs. 

Me:  So I’m being charged $107 because my son is special needs.

Billing Clerk:  Well, I can talk to the doctor and see if maybe we can get it fixed or cut it down to half the price.

Me:  Why don’t you do that because I don’t really think it’s fair that I should pay $107 just because my son is mentally handicapped.  He sat there in the chair with no problems just like a normal child.

Billing Clerk:  Well, I obviously wasn’t in the room with him but I will talk to the doctor.  What number can I reach you at?

I was seething!!!  I told Kevin that it felt like they were saying, “Well, that guy over there is Mexican, and he could be a problem, so lets charge him an extra $107 just in case we have to calm him.”  We all know that wouldn’t fly.  So they think it will with a special needs individual.  I don’t think so!!

An hour later the billing clerk called me back.  They removed the charge.  Smart choice.  I know this dentist well and I bet he never asked for that to be on there.  He is a huge advocate for the special needs community which is why I chose him.  He spends his days off on the reservations providing free dental care to the special needs kids that can’t get in to see a dentist. 

And I have a feeling that Matty’s chart now has a little yellow sticky note saying to beware of his overly observant, advocating, psycho momma.

As for Lauren, she will have another ultrasound on the ovarian cyst on Friday afternoon.

My Monday started out with me completely missing the alarm.  Austin has to be at the weight room by 5 a.m.  The alarm goes off at 4:30 so we have plenty of time to get him up and going.  He has Osgood-Schlatter Disease and it takes him a lot longer to get moving than the other kiddos.  Well, I woke up this morning around 5:10 a.m. to Matty yelling, “Mom, Mom.”  I had turned off the alarm in my sleep and just kept on sleeping.  Argh!  Matty was yelling, “Mom,” to wake me up.  So Austin missed weight room this morning. 

Even with that adrenaline rush I was still very sluggish this morning.  Part of it was because I was bummed that my work out plan just isn’t going to work.  I want to do a walk/run in the mornings but no one can/wants to go with me.  My dogs aren’t as fierce as they should be and I’m scared to go by myself.  I’m only a wee thing.  It’s not hard to pick me up off the street and run with me.  So I’m trying to figure out a different kind of plan which will probably involve the treadmill (blah!).

I did finally get up and get moving.  Today I have to turn in library books and send back movies.  So I was running around gathering all that stuff after I got ready for work.  Then, I couldn’t find my van keys.  Lauren had left them in the back of the van when she was trying to figure out how to turn the seat backwards on the 4th of July.  Thankfully, the commute to work was uneventful!

Once I got to work the drama began again.  I had to reschedule the kids’ doc appts for tomorrow because I can’t afford it this week.  Well, it is now August 25!!  Matty is due for a shot before school so I don’t know how that is going to work, and at the moment I don’t really care.  School starts here around August 17 so it will be after that day.  When I register him I’ll see about a grace period. 

Then our doctor called with information on Lauren and Austin.  Austin’s stress test came back fine but they are still waiting on the EKG.  Lauren, on the other hand, got her anxiety meds doubled and they want to run another ultrasound on the cyst.

And I won’t get into the work drama.  But I can say that I’m ready for lunch!!

Sadly, for many people out there this holiday sucks.  And it starts weeks before and ends weeks after the actual holiday.  Those of you out there with kids like my son know what I’m talking about.  The noise from the fireworks is brutal to those who have sensitive ears.  Even Rachel is affected by it.  It hurts them physically to hear the pops and booms.  It frightens them because it is not normal.  One of my fellow bloggy friends mentioned that last night her son got so upset he was vomiting.  As parents there isn’t a whole lot we can do.  We can’t march across the street and tell our neighbors to quit with the fireworks.  So what do we do!!

I found an article that has a little bit of help.  Honestly, there is only one of these that would work for us…the tv.  But some of you may find some tips that could work for your family members.  And don’t forget those furry family members.  Our pit bull is terrified of them!  So she sleeps with us.

*   *   *

Parent Tips: Surviving 4th of July Fireworks
Author: Shelly McLaughlin, Pathfinders for Autism

They’re the symbol of our independence and bring joy to the faces of many. But, for people that experience intense sensory input, they can be thunderous and blinding. And each year so many of us stop and ask ourselves, “Do we go?” “What about our other children who really enjoy fireworks?” “Do we think our child can tolerate getting through this?”

Maybe there are some things we can do to help make this traditional festivity an enjoyable experience for the whole family.

Invest in a set of headphones or earplugs
Earplugs to block noise – not the ones we use for swimming. Think construction worker grade or Etymotic earplugs. Or use a set of headphones. You can even play soothing or patriotic music through them.

Turn up the TV
Sometimes we live near a venue that hosts a fireworks display or our neighbors decide to create their own spectacular show. So what do we do when our homes are invaded by the noise? Try playing predictable music or a favorite TV show that will cover sound. It might even be a good time to whip out that Playstation.

Preview the show
By their nature, fireworks are unpredictable. But we can try to prepare our kids to better help them know what they can expect. Sparklers may not have much sound, but they look like mini fireworks. You can also watch videos of fireworks displays. Here is a video of the fireworks show at Disney, accompanied by Disney music. This link to Pyro Innovations might be of particular interest to our kids that want to know what goes into the production of a fireworks display. There are multiple shows to download and they include clips of the crews setting up.

Watch from far away
A grocery store or other nearby parking lot, or the side of the road with the windows rolled up may provide a comfortable distance.

Take comfort items
Pack items that help soothe your child, such as a weighted vest, favorite toy, snacks, or handheld game.

Be mindful of the entire day’s schedule
Before the fireworks show, is there a party or a picnic? Are there breaks for downtime in the day? If it’s an overloaded day, fireworks may just put your child over the edge. If fireworks are your priority activity for the day, consider limiting some of your other planned activities.

Give that safety speech
Don’t miss this perfect opportunity to talk with your kids about fire safety and the dangers associated with explosive devices. Be cognizant too that some of our dislike of fireworks may come from anxiety or fear of being hurt. Reassure them that you are obeying the rules of safety.

And of course, be prepared that what worked last year, may or may not work this year. But isn’t that what makes our lives such an adventurous journey?

© 2009 Pathfinders for Autism

My Aunt Bonnie has a fragile x son who is probably in his 40′s now.  She lives in California and I don’t really have much contact with her.  Okay, I have no contact with her.  I would like to though.  She is hilarious.  I should work on that .

Anyway, she has her son at home with her.  He is probably about the same severity as Matt.  He is in the moderate/severe range.  He talks but not on topic and perseverates a lot.  He is potty trained to an extent.  He needs help with wiping and he has to be told frequently to go to the restroom.  Diarrhea is just a disaster!  So he needs a lot of watching over and assistance.  My Aunt Bonnie is married and stays at home with him.  My uncle works as a mechanic and can take him in with him if he really needs too.  But a fragile x person is a mechanics shop is a recipe for disaster .  My aunt also has a daughter who is in her 50′s who assists with him as well.  But she has her own family and works so the burden mainly lies with my aunt.

Before I had Matty, my aunt had a situation that made me realize just how tough it was for her to care for my cousin.  My aunt had gotten a speeding ticket.  With taking care of her son she had totally spaced it off.  Well, she got pulled over for speeding one day trying to get her son to an appointment.  By this time she had a warrant out for her arrest for unpaid fines.  Her daughter came and picked up her son and Bonnie was taken to jail overnight.

I know.  Horrible right!

Well, apparently not to my aunt.  The next day when they went to release Bonnie she refused to leave!  The sheriff told her that she had to go.  They couldn’t hold her any longer, the fine was taken care of, and she should go home to her family.  My aunt, obviously stubborn, sat down on the bench and told him, “No.”  The sheriff was shocked.  I mean, seriously, how many people refuse to leave jail!

My aunt told him, “You have no idea how hard things are for me back home.  I didn’t until last night.  Sitting in this jail has been the most relaxing and quiet day of my entire life.  All I’m asking for is one more night.  Just one to relax and regroup before I go back and tackle it again.”

Obviously, the sheriff couldn’t grant her wish and my uncle came and picked her up.  Last I had heard my cousin was on 2 or 3 waiting lists for group homes that my aunt had approved of.  She loves him very much and is very picky about where he will live out his days.

This story signified two things to me.  One, that fragile x, or any development disability, may seem easy on the outside but living it is no piece of cake.  And the second thing, respite is definitely necessary.  My aunt never had respite services for her son.  I hope she does know.  Getting a break is so crucial.  Could you imagine going to work one day and not getting a break for the next 20 years…not even to go pee!!

Though we don’t get actual respite services we do get a break.  Matty goes with his paternal grandparents every other weekend.  Rachel goes with her dad on those same weekends.  So we get two days where we can focus on ourselves.  And by the time the weekend wraps up we are re-energized and ready to tackle two more weeks.  If you aren’t getting respite please find a way.  Don’t go to jail to get it

Nothing makes a parents heart plunge faster than hearing the words, “I want to run tests on his heart.”  They got him in to the hospital for testing right away.  He had an EKG and some kind of pulmonary cardio test thing done.  The EKG can be read at our hospital but the other one has to be sent to the big city to be read by a pediatric cardiologist.  So we don’t have a clue as to when we will get the results.

In the meantime Austin is being sidelined in soccer.  He can’t play or lift weights or anything until we get the results back.  I feel so bad for him because he finally found his fit.  He found a sport he was great at and enjoyed.  He found an awesome group of guys to hang with and I feel are helping his transition to high school next year.  And his coach is amazing and so supportive.  I pray wholeheartedly that it is just asthma and he can go back to his team as quickly as possible.  I’ll keep you all updated on the results as we get them.

Rachel was gone with her dad and won’t be home until next weekend so that threw him off a little bit too.  I mean, come on, his room was actually clean! (Transition #2)

We also had our cat corner a stray dog in our back yard.  This poor pooch has been wandering around for days.  So we shut the gate to keep him in there until the pound can pick him up.  Don’t get too sad yet.  If the owners of this dog don’t claim him then we will take the dog that Austin has dubbed as Waldo.  (Transition #3)

I then took him to the woman’s home who watches him 3 days a week.  She is an Americorps volunteer who has worked with Matty in the past.  Well, he had already had such a nutty morning he didn’t want to get out of the van.  I had to all but pull him out of it!!  I finally got him out and got him to the door when I learned that his caregiver wasn’t home.  Matty was not happy to get back in the van and head back home! (Transition #4)

Luckily, about 5 minutes away his caregiver called.  She had thought she could beat us there and hadn’t.  So we turned around and went back.  Matthew was not happy!!  He was yelling at her.  He was yelling at me.  He was asking her where she was and telling me to go to work.  He had just had it!!

This boy has his routine and if you mess it up too much he is going to let you know about it .

But the clouds parted and the sunshine was let in on Wednesday…to Rachel anyway .  I hadn’t mentioned yet but she has a new counselor.  I really like her.  She actually was the kindergarten teacher Rachel’s bio dad and I had picked out for her.  But she was offered a position at the high school as a counselor and she had to take it. Sad day.  But they are now reunited .

I hate the commute from my house to my office so if any of the kids have an appointment I just bring them into work with me.  So Rachel got to spend almost 7 hours hanging out in my office with me.  She got dressed up like a banker should.  She had me braid her hair.  She put on a pretty purple dress.  And for when she wanted to take a nap and not feel bankerish she put on glittery blue flip flops and soccer shorts under the dress   .   At work we have a supply type room with a desk in it.  I cleaned it up for her and set her up with my laptop.  She got to hang out and play games.  My coworkers were giving her little odd jobs to make her feel like she was working.  She was putting papers in the shred bin for my supervisor and making new account folders for me.   And she did take a nap after lunch.

Then we went to her appointment.  They are working on what her worries are and how to work through them.  She was getting so obsessive over calling me when she felt a hint of anxiety, that we had to take her tracfone away.  So we decided to tackle that first.

After her appointment I took her over to Sonic to hit happy hour.  Nothing like 2 slushes for $2.01!!  She had $5.00 burning a hole in her pocket so I ran her over to Target.  I learned she was wanting a glitter water ball.  She had been wanting it “for weeks and weeks and weeks!”  .  While I was there I splurged a little and bought a really cool puzzle.  It is really 8 Disney puzzles in one box.  There are 4-100 piece, 2-300 piece and 2-500 piece.

When we got home we attacked a 100 piece puzzle right away.  It was kind of hard!    I set up my laptop on the table and we found High School Musical 3 for instant play on Netflix!!  Netflix and wireless have been the best investments to get through the summer with the kiddos .  (For my facebook buddies I put a pic of her doing the puzzle and watching the movie on my wall yesterday) We did 2 of the 100-piece puzzles.  They were not simple at all!  Which makes it funner!!

I think all together we spent like 10 straight hours together.  We had a great time.

There are 215 different handouts.  Some go into some deep stuff like What is selective mutism? .  Others go into what we think are ”stupid questions” and are too afraid to ask like What is a special education teacher? .

If you get some time go check it out.  You may learn something.  You might find something to share with a provider.  Who knows what you can do with 215 free handouts!

FYI:  You will need to set up a username and password but I don’t get spam from them at all

Her cyst is a pretty common thing.  Taking care of it will be an easy process as well.  She will be on the pill for the next six months to get her body in sync.  The doc thinks that that is what is causing her cyst.  Then at the end of December she will go back in for another ultrasound to see if it worked or not. 

In the mean time this girl is ‘tude city.  I never in my wildest dreams thought that the 14 year old attitude would creep back into our lives until Rachel got there.  But no!  Our 17 year old is a mess.  I don’t know if it is all the “adult” changes going on with school, college, friends, health, etc.  But whatever it is needs to stop or else she is sleeping in the backyard in a tent for a while