It was a Monday

It wasn’t a bad day but it wasn’t really a great day.  I woke up with a screaming headache.  For some reason if the tv is on all night I wake up with one.  It’s not a good way to start a day.  So I started out my morning moving pretty slow but the kids got ready and got off to school just fine.  My hubby did pretty good today too.  He had some bad days last week but is starting this week off okay. 

I got to work and did some bonehead mistakes.  Only I would spend half an hour doing something in order not to do something else, and then find out I had the whole thing wrong in my head and had to it anyway!!  Then I filed to make the day go faster.  I found some checks that a coworker had misplaced in my files.  She had filed something else and the paper clip on the checks had stuck to it.  Boy, she was a happy camper!! 

Matthew’s teacher emailed me and I found out that the play he was to be in tomorrow night he really isn’t in.  I was happy to hear that since I hadn’t really cared much about it.  The last play he was in I lost him.  I was furious.  The play ended and all the kids starting rushing off the stage.  Matthew was in the middle of it and he just follows the person in front of him.  We finally found him once everyone cleared out…holding the principals hand.  I was pissed.  There is a ditch that runs right in front of the school that hadn’t been drained yet so I was thinking all kinds of horrible things.  I’m not real fond of the principal so when she calmly told me that she had him the whole time all I wanted to do was punch her…and I’m not a violent woman.  I saw him come off that stage so I know she was full of crap.  So, I’m pretty happy he doesn’t have to be a part of the play tomorrow night.

I do have Rachel’s IEP tomorrow afternoon.  I’m still not sure how it’s going to go.  Usually, I have a feel for the meeting but I’m sorta not sure on this one.  I do know that her father isn’t coming and he probably doesn’t even remember.  He called about an hour ago and didn’t even mention it.  He doesn’t care.  I don’t even think he understands fragile X and he lived in a household with 2 kids that have it for 6 years!! 

I’ve been dealing with a lot of depression lately that kind of worries me.  I know that FX carriers have their own sort of issues.  I got on Zoloft when Rachel’s dad left.  I was having panic attacks in my sleep and I couldn’t stop crying.  I got off of it a year ago because I felt my life had stabalized and I was okay.  I’m second guessing that decision.  In the course of a year Matthew’s dad officially dropped out of the picture, I got married, I gained two foster children then lost them when the state would no longer protect them, my husband developed a chronic illness, I started a new job, and now we’re attempting to become the custodial parents to my step-children due to DV issues in their home.  Oh and I had surgery that knocked me on my butt for 2 or so weeks.  There has been a few times this past month that I just feel so stinkin overwhelmed but all I have to do.  I just don’t like living my life needing a drug to get by.  I don’t know who ingrained that in my mind but it’s pretty solid and deep in my psyche.  I know I probably should talk to my doc but I just don’t want to.  How immature does that sound.   X

NFXF Webcast on Behavior on May 8 – free

	The ABCs of FXS: Steps for New and Improved Behaviors Tuesday, May 8, 2007 6:00 PM Pacific / 7:00 PM Mountain / 8:00 PM Central / 9:00 PM Eastern USA Dr. Riley is currently an Assistant Professor at the University of Denver in the Educational Psychology Department, Child and Family School Psychology Program. Her education includes a B.S. in Psychology from Colorado State University; a M.A. in Early Childhood Special Education from the University of Denver and a Ph.D. in Educational Psychology with an emphasis in Child and Family Studies from the University of Denver. She completed a post-doctoral fellowship at The Children’s Hospital in Denver in the Fragile X Treatment and Research Center. She has over 15 years of experience in teaching and administration of early childhood special education programs. She has been involved in several psychopharmacological studies and other research projects related to Fragile X Syndrome. Particular areas of interest and expertise include assessment and intervention of infants and preschoolers, curriculum development, school consultation, behavioral interventions and low incidence disabilities. Dr. Riley is married and the parent of a 17 year old daughter and a 14 year old son. She is a frequent contributor to the NFXF’s Foundation Quarterly journal.- If you would like to ask Karen a question, please call 800-218-0530 at the time of the event. * International participants please use email. or – Email questions to NATLFX@FragileX.org with a subject heading “For May 8 Webcast.” * (You may email your questions at any time this week prior to the webcast.) * The NFXF will do its best to see that everyone is able to participate, but regrets that it cannot guarantee that all calls and emails will receive an answer. CLICK HERE to register for the free webcast in advance or at the time of the event Robert MillerNational Fragile X Foundation email: natlfx@fragilex.orgphone: 800-688-8765 web: http://www.fragileX.org

Are we there yet??

Sally Nantais is one of the most incredible moms to FX kids that I have had the privilege to meet.  I ask God on occasion why she couldn’t have been my mom  .  She writes a monthly article for her local paper that I just love.  I hope she doesn’t mind that I share these with all of you. Her take on life with FX is funny, heart wrenching and real.  Here is her most recent article.  Enjoy! 

*  *  *

This one is dedicated to the wonderful staff at the Waisman Center!  Hugs, Sally in Michigan

Are we there yet?

by Sally Nantais, published May 6, 2007, The News-Herald

 

Traveling with Austin, my son with fragile X and autism is always an amazing adventure.

 

First and foremost, traveling with Austin requires a great deal of patience on my part.  His success relies on my ability to stay calm and focused on what we need to accomplish.  It depends on my ability to recognize his fears and try to lessen them.

 

I smile at the number of times I’ve been asked by others if I medicate Austin specifically for travel by air, I don’t. What they should ask is if I self-medicate. Honestly, I’ve considered having a martini or two. 

 

Austin and I recently traveled to the Waisman Center in Madison , Wisconsin to participate in our third year of a four-year-study.

 

At the very beginning of our journey, the verbal perseveration began on the drive to the airport with a phrase not uncommon to parents traveling with children, “Are we there yet?” Considering we were only three blocks away from home when it started, I realized this was going to be a very long day.

 

He rode the shuttle bus with a few of these —  “Whee’s we’re going on an airplane!” It’s the closest I’ve seen him come to bragging and even though I loathe bragging, I was quite pleased this was coming from Austin .

 

Making our way through security and to the gate, he was a model traveler. We had lunch and then waited patiently for our time to board the plane.

 

He refused to move when I suggested a bathroom break, he told me to go, he was fine.

 

Hesitantly, I left him, there with our luggage, reminding him he had to stay there, it was the law, he couldn’t leave our luggage. On numerous occasions, Austin 15, has demonstrated to me that he wants his independence and even though it’s often difficult for me to do, I sometimes bite the bullet.

 

When I returned, he sat there with a smug look on his face, as if he was telling me, “I told you so; I told you I would be fine.”

 

We pre-boarded the plane as we always do, avoiding the initial boarding chaos, reducing his anxiety. 

 

In the air, our trip was uneventful until we started our descent into Madison then the verbal perseveration once again peaked. Imagine, you are on a plane and during the descent, a fellow passenger keeps saying, “We’re going down, we’re going down”. 

 

I attempted to change it to “We’re coming in for a landing” but was unsuccessful. You win some, and you lose some.

 

With Austin , we typically don’t wait for shuttles to bring us from the airport to the hotel. It’s difficult for him to wait when the time is unpredictable.

 

In the cab, the verbal perseveration once again peaked, this time it was, “we’re getting closer” which was uttered about once every three minutes.

 

When we checked in at the hotel, Austin quickly went to his mental list of what I had told him we would do.  We weren’t in the room five minutes and I had to order the in-room movie.  As soon as the movie trailer credits were rolling it was time to visit the pool and hot tub.

 

I had to hold him off for dinner until the hotel restaurant opened. When traveling with Austin I can’t be too adventurous. Too many new places and situations could push his anxiety off the charts. We often stick to our routines as much as possible. After dinner, he was ready for bed even though it was only 6 p.m. Central Time and, frankly, mom was ready for quiet time as well.  

 

The following day the study kept Austin busy for about five hours.

 

He worked very hard and did exceptionally well, considering how much direction there was and how often the topic area changed.

 

Before we knew it, it was time to return to the airport, to begin our journey home. 

 

This was the first time we were leaving immediately following the study.  In the past, we’ve always traveled in the morning on the following day. I was a little nervous about how he would do and a few of the worst-case scenarios ran through my head.

 

We had a three hour wait before our scheduled departure, for a long time he was content just watching out the window, waiting for our plane to arrive at the gate. Because it wasn’t there, it was a great visual reminder as to why we couldn’t go.

 

While we were waiting, Austin did make a few people wonder and smile when I bought him a three-minute massage in a massage chair. It almost reminded me of the scene at the restaurant in the movie “When Harry Met Sally”. Austin was very content, quite happy, repeating, ”That’s the ticket, ahhh, that’s the spot.”

 

He was once again a model traveler on the plane; until he spoke, no one would have thought he was anything but a typical teenager.

 

In the end, I’m grateful that we’re involved in research that requires travel. It would be easy for me to sit back and never venture away from home but just imagine what I’d miss. When traveling with Austin , every trip is an adventure and a learning experience for both of us. 

 

In our day-to-day adventures, when there’s a little unexpected turbulence, all I need to do is think about our journeys. They remind me of what I’m here for, to be Austin ’s teacher, so he can be as much a part of my world, as I am of his.

 

And one day I won’t ask, “Are we there yet?”