Wednesday, September 12, 2012

Fragile X Infant Study / NC Trip

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In late August, we packed up the family and headed down to North Carolina - UNC specifically - for Emma to participate in the first part of a longitudinal research study for infants with Fragile X. (More on the travelling in a bit!)   She will have visits at 6 months, 12 months, and 24 months where she will undergo an MRI and developmental assessment.  The MRI takes place while sleeping, and the developmental assessment is very straightforward - especially for those of us that have gone through them for older siblings before!  Emma did fantastic with the MRI which was the only portion I was worried about at all.  Those machines are loud, and sleeping through them seemed near impossible; however, she made it through the entire MRI only waking up one time and going back to sleep fairly quickly.

We haven't received all the information back from the developmental assessment, but the summary looks very good.  Emma is where she needs to be in all areas developmentally.  At 6 months old, this is a huge relief.  I don't remember seeing delays with Ayden until around 7-8 months, so hopefully the next few months will keep her on track as well.  I still have a couple areas that are a concern to me even with her testing coming out fine.  I am praying those areas continue to progress though and the difference I see are just due to different kids developing differently.

As for the study, you can learn more about it here if you are interested.  If you are a Fragile X carrier and either expecting or have an infant under 6 months with Fragile X you really should look into this study.

Now, back to the travelling.  When I say we packed up the family I mean we packed them up, drove to Detroit, and then flew to North Carolina.  On a plane.  To say we were a bit nervous about flying with a 5 year old, 3 year old, and 6 month old might be an understatement.  Especially with Ayden.  We did our best to explain what would happen, trying not to explain too far in advance, and then hoped for the best.  As usual, my children never cease to amaze me.  After getting up early, riding almost two hours to the airport, riding in a shuttle, fighting crowds, and going through security -- ALL of the kids were meltdown-free through the entire flight.  Ayden was most excited when we took off.   Both him and Issac were just staring out the window.  After that, it was just like a car ride to them.  We landed with just as much ease, hauled them through another airport and into the rental van then finally to the hotel.  By this time it was far past lunch time.  We grabbed a bite to eat and then took a nap before heading to dinner out and Emma's MRI.   Our first day of travel, which is exhausting to me again just typing it - had us returning to our hotel around 11pm where all of us crashed. But we were meltdown free the entire day!

The next two days were not nearly as good - but for as much as we pushed the kids I couldn't really ask for much more than they gave.  Ayden especially did such an amazing job trying to be good and not whine.  I watched him teeter on the edge of meltdown a few times and bring himself back.  We did have a fantastic time, but it was infinitely exhausting.

The highlights of the trip were definitely meeting the wonderful team at UNC working on the study (I won't name their names here...but there are only two of them!) and how amazing everyone was that we encountered while travelling.  I can't even count the number of times we were told how polite and well-behaved our kids were.  One couple even told us we made travelling with three kids look easy (HA!).  It wasn't just the positive comments either - friendly faces, smiling, being polite.  We honestly never had one person shoot us a dirty look or look at us like we were inconviencing them.

All in all, it was a very successful trip - for a very good cause.


Tuesday, September 11, 2012


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September 11.
The day when the question you hear is "Where were you?"
The day when the word "remember" echoes through our nation.

As anyone who was old enough to know what was going on that day, I remember where I was when I found out.  I worked technical support at an internet company and was on the phone with a customer who had flipped her TV on for her child to keep the little one occupied while I helped her out with her internet.  I remember the silence, then the choice words she said - followed by "Get to a television, I'll call back later."  Many others in our call center were experiencing the same type of calls, and it wasn't very long before the many television sets in the call center were tuned in.   Though, when I think about that day and the weeks following this terrible tragedy, it isn't these moments I remember most.  For me, it was the fear.  Not fear for our country or fear of another attack - it was the fear for my friends and those that would later become my family.

My husband and I had been dating for a few years in 2001.  He is a first generation American.  His grandfather (whom he lived with at the time) brought their family to the US in the 60's.  Their country of origin: Egypt.  Their religion:  Muslim.    Most people remember how this country came together in those weeks following 9/11.   I remember how this country showed their hate to their own citizens.  I remember how we happily gave up individual freedoms and rights so that we could feel "safer".  I remember how ignorance of a religion and a few zealots [from that religion] brought out the worst in Americans and fueled the fires of discord in an attempt to put a face to the sadness and anger they were feeling.

Eleven years later...the hate and ignorance have waned some.  Those Muslims that live in America have done a fantastic job of educating people, but it's still not enough.  People are scared of what they don't know, what they don't understand.  This simple fact still remains though:  the way people are treated because of how they look, what their religion is, or what their name happens to be is not okay and should never be accepted by a civilized people.

So, I take a break from my normal Fragile X posts today to remember....

To remember those that lost their lives.
To remember those that risked (and gave) their own lives to help others.
To remember those that lost their lives in military service as a result of these attacks.
To remember those citizens that have been persecuted for the horrific acts of a few.
but remember that hate is never the answer.

Monday, September 10, 2012

Kindergarten Week 1

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We have officially completed our first week of kindergarten.  Successfully.  Happily.  No tears.

In case you're wondering, Ayden did pretty well too.  :)

If it wasn't quite obvious from my post about orientation, I was pretty impressed with our ASD room teacher.  I don't know her background, but she seemed to care about the kids she has a lot from our initial visit.

Our first week impressed me even more.

The communication pages she sends home each day that she calls a work in progress are amazing.  I know more about what Ayden did this week specifically speaking than I know about what he did in an entire year at preschool.  We had generalized notes from preschool, and often a teacher who didn't answer emails.  Preschool did wonders for Ayden and we really loved it there - but this is so. much. better.  To top off my week, I spent about a half hour on the phone discussing something that was sent home on the communication sheet.  Basically I just wanted to make sure a small problem was being handled right for Ayden.  Not only was it handled how I was hoping, but she then went on to explain how she made a small change in Ayden's daily routine that she thought would work better.  Which it did.  That minor change led him to work with minimal prompts at independent work stations by the third day of school.....and totally independently by the fourth day.

In gen ed, he's been working well in circle time and small groups.  He's also been playing with the other kids at recess. I haven't spoken with his gen ed teacher, but his daily reports are exactly what I'd expect - listening, doing what he's told, and transitioning between different times with prompts.

Our biggest concern to start out the year was how the cafeteria would work for Ayden.  We are absolutely insistent that Ayden be included and doing as much the same as his peers as possible.  We have always worked very hard with him to minimize his anxiety, but know that large groups with loud noises are triggers for him.  While we don't avoid those situations per se, we do give Ayden a lot of leeway when we put him in those situations.  We assumed it'd be hard on him for the first few days, but apparently that concern was for nothing.  He has been eating with the other kindergartners and doing just fine.  I guess Ayden decided he was going to be all grown up on us.  :)

So, that's the week in summary.  It really was fantastic to see him transition to full days and just do so well the first week.  I have a couple things we have to get set still now that his teachers are in the swing of things.  Hopefully getting his speech therapy going will be as smooth as the beginning of kindergarten was.  If not, mommy bear may have to start roaring. We'll all hope for the best though, I haven't been disappointed with his new school yet.