Archive for April 10th, 2008

Just Stuph

Matty’s teacher emailed me today.  Matty had decided to go on strike when it comes to breakfast and lunch.  He has picked at his food all week long.  Now if you knew Matt you would know just how crazy that sounds.  He lives for his food.  When I told Kevin his eyes got huge.  He was in a state of disbelief.  He is eating just fine at home.  I asked his teacher if they changed how they cooked the food but she never responded.  I guess she didn’t find that funny. 

Austin has done quite the opposite.  He is eating like crazy.  He is also sleeping like crazy.  That probably means that he is growing…again.  I swear he has grown 6 inches in the past 12 months.

We’re slowly getting adjusted to Kevin’s new schedule.  His job keeps him out of the house from 8:30 a.m to about 9:30 p.m.  So during the weekdays I’m a single mom to 4 kids.  Though I’m trying to keep it all together by myself, the kids and I have realized that the house is easier to clean when dad is gone :lol:

I was stuck at home yesterday from dealing with the ultrasound.  I was in so much pain.  It was a lot easier today.  I didn’t hurt near as bad.  So I was able to make it to work and get through the whole day.  And I was even able to do a handful of chores and cook dinner once I got home.  Vaccuuming the hardwood floors did me in.  I didn’t think beforehand. 

No one thinks my wonderful idea of just making the cyst rupture is a good one.  My theory is that if it doesn’t want to go away on it’s own I can just do an hour on the treadmill and waalah…..it’ll be gone.  I’ll be in a world of pain but the cyst would be gone.  Unfortunately, Kevin is not up for a trip to the ER.  He ruins all the fun.

Well, I’ve managed to avoid my homework long enough to where I’m too tired to do it.  I’m just a horrible example to my kids.  I will be doing homework this weekend.  They are going to give me major grief over it :lol:

2 comments April 10, 2008

Starting Therapy

For my past FX Memories please click this sentence.

My family doctor set us up with a pediatrician, Dr. H.  We were able to get in within week.  He also called in a referral for early intervention. 

I got a call before the end of the day from a case manager at the early intervention company.  Her name was Tracy.  She would be my biggest mentor over the next 5 years.  Tracy set up an appointment to come see me the very next day.  I told her that I didn’t even have a diagnosis for Matty.  She assured me that there was no problem with that.  A lot of the kids the service never get a diagnosis.  I know the statement was meant to reassure me but I caused a little knot in my tummy that I may never know why my baby was behind.

Tracy was on time.  She was such a sweet woman.  She loved on Matty.  He hated it but I thought it was cool.  No one wants someone who hates kids working with their kids.  She evaluated him and determined he needed to start out with physical therapy.  All the therapists booked their own calendars so she would have the therapist give me a call to schedule Matty’s.

It was a couple of days later when the PT called.  I would learn later that she was a professor at the local college.  She schedule and eval for Matt sometime pretty soon.  I can’t remember the time frame now.  She showed up with the PT assistant.  Matty absolutely hated it but they tested all his reflexes.  It sucked to see Heather (PT assist) checking Matts reflexes and Jean (PT) saying “yes, no, no, no, no, not present.”  With every “no” my heart sunk a little deeper. 

They couldn’t tell me much that day.  It was literally an eval.  I was told that the PT would come once a month to do an eval.  Heather would come weekly to work with Matt and give me exercises to do with him to help him get moving. 

The next week Heather arrived and told me that we would start working on getting him to roll.  We tried a variety of exercises that just ticked Matty off to no end.  He hated it.  I did think it was way cool that therapy was at our apartment and we used his toys for props.  They believed the children did better in their comfort zone. 

Heather would be at our house every week for the next 6 years!! 

 

4 comments April 10, 2008


Autism & Fragile X

C’est Moi


Overly happy, married, working mom to 4 kiddos. This is our journey while working with fragile x syndrome.

Who are these people?!

all names changed to protect our family
  • Kevin ~ dad
  • Beth ~ mom & fragile X carrier
  • Lauren ~ 17 & in 12th grade
  • Austin ~ 14 & in 9th grade
  • Matthew ~ 13, in 7th grade, has full fragile x mutation, and autistic tendencies
  • Rachel ~ 10, in 5th grade, has full fragile x mutation, and autistic tendencies
  • Theresa~ Beth's best friend since 6th grade & her biggest supporter

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