Wednesday, June 29, 2011

Research Wednesday

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Today would normally be my research post, but I'm a bit behind right now between birthday (the big 3-0 for this momma), vacation, and just life in general so instead of my garbled blogging - I'm going to leave you with a link to another blog with lots of new research stuff on it; some that I've covered a bit about even.

This blog has three entries to which I want to specifically reference - June 18, June 20, and June 27.

Tuesday, June 28, 2011

An Early Summer Update

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I've been so busy with having two kids home and just life in general, that I really haven't been posting much about Ayden.  Since the focus of this IS about him...well, here's my update for the summer thus far.

Summer-time Adjustments - Ayden has been out of school a few weeks now, and is starting to adjust a bit.  The first week was pretty terrible with a lot of whining and crying.  I wish we had time for him to grasp social stories a little before school was out so I could have helped him in that aspect; however, we can only work with what we have.  We have the usual problems between him and Issac amplified which really just amounts to more fighting and in Ayden's case, pushing.  We are very consistent with discipline when Ayden pushes Issac, but nothing is starting to click.  I am hoping that it will just fall into place one day but until then we keep on doing what we're doing and avoiding letting them anywhere near steps/stairs/drop-offs etc. I am extremely thankful that this pushing does not extend to anyone else.

PECS - We have consistently had Ayden at Phase II of PECS for a few weeks, and will be starting to implement Phase III this coming week.  I'm so excited about this as we really get into the "meat" in Phase III where he now should be able to distinguish between the different cards.   I am hoping to be through Phase III by August - so by the time school starts we will have been working in Phase IV for at least a month.

Eating: -  Always a tough spot with Ayden.  He loves eating, but is pretty picky about what and how he eats.  He still pretty much refuses to use silverware, which does make our life a bit more difficult.  He can use it, but not very well, which is why I think he prefers not to.  Right now, his hands are much more efficient at stuffing food into his mouth.  We have introduced two new meals in the past week for lunch times, which is very exciting in our house! I started out by trying mac&cheese with hot dogs, and it was a huge hit.  I was very surprised Ayden ate it, he's never really touched it when I've tried before.  The other meal I successfully introduced was Spaghettios.  Ayden rarely eats anything with tomatoes, so the fact he chowed this stuff down was a pretty big deal.  We've had each meal twice since our first introduction, and each time has been a success.  Of course, we are still continuing to have the kids eating the same thing as us for dinner, but the addition of two new meals to their normal waffles/pancakes/sandwiches for their lunches make my life a lot easier.

Potty Training - I think this is my own personal nightmare with Ayden.  We are trying again this week, and it has been a failure so far (we are only on day 2).  He is showing interest since little brother is now potty trained, but he is very adamant about not going on the potty to the point where I put him on there, ask him if he can go pee and he vehemently shakes his head no.  He drank three cups of liquid and held it for about 5 hours until I put his diaper on for nap time.  I'll keep working this week, and see where we are then.  If he just isn't getting it, we'll be putting it on pause until after our camping trip in mid-July.  I would really like to see him potty trained by the time school starts, but realize that it may not be possible.

Traveling - We have done a fair amount of traveling already this summer, and thankfully Ayden has handled it well.  It's always a bit disorienting for him at first, but he is doing much better than he did last summer.  Over the coming weeks we will have multiple out-of-town trips, including one to a place he has never been with a decent amount of people he doesn't know.  It should be interesting to see how he handles it; though I will be doing my best to help explain to him what is happening - it is just the type of situation he normally melts down in. 

Well, that is everything for now.  I will be doing my best to keep updating over the next few weeks even with our vacations and such.  We will have the iPad sometime this week - so it may be a little easier for me to update away from home!

Wednesday, June 15, 2011

Research Wednesday - Newborn Screening

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Newborn Screening.

Around 48 hours after you have brought your precious little baby into the world, he/she is subjected to the "heel test" which I'm sure most parents remember their little one going through.  These tests are state-mandated and screen for somewhere around 30 different disorders that can result in early mortality or a life-long disability.  While each state tests for different disorders, currently, Fragile X is not on this list for any state. 

You can see the complete rundown for your state here:  National Newborn Screening Status Report

It's important to note, that other developmental delays such as Downs Syndrome and Spina Bifida require no formal screening as they are physically evident at birth.  Further, prenatal tests are offered to families for both of these disorders.  So, why not FXS?  Previously, it was because the testing wasn't as easily available as the newborn screening tests I talked about above.  Currently, the test is about $10 and there are method available to do the test as a blood drop just like the newborn screening tests.  (though, I do not believe this is available at every hospital currently)

Here are a few articles that deal with newborn screening and fragile x:
Should Babies Be Screened for Fragile X? (June 2011)
Discovering Fragile X Syndrome (Feb 2003)
Ethical, Legal, and Socal Concerns about Expanded Newborn Screening (Mar 2008)

Also, a seperate article about newborn screening in general: Newborn Testing

I think that those of us that understand Fragile X and the implications of a diagnosis are mostly in the same line of thinking when it comes to the issue of newborn screening for fxs.  That is, it should be offered as prenatal testing just the same as Down Syndrome and Spina Bifida are.  When it comes to actual new born screening though; it becomes much more difficult to say a firm yes or no, at least in my opinion.

Since this is my blog though; I will share my thoughts.  I think that newborn screening should be mandatory.  I understand that this has tons of implications when a positive diagnosis comes back; however, I do not feel that should be ignored.   Hand-in-hand with the offering of testing and educational materials during a pre-natal phase should leave parents knowing at least a little bit about Fragile X (or at least having the opportunity to know a little) should a positive diagnosis occur.   I will not deny it would be a shock to anyone; however, so would most any other disorder and in the case of Fragile X - early intervention is proven to be very helpful.  My other reasoning behind this thought, is that most children will need early intervention services and as those services are government funded, it seems very fair to me that the test be mandatory.

I cannot positively say an earlier diagnosis of Ayden would have made a difference, and just cannot go there. It really does not good to second guess decisions.  I do know now though that so many things I thought were just quirks about Ayden (some that were very frustrating at the time) were signs of Fragile X and at the very least it would have been helpful for me as a mother to not feel as if I was doing something wrong.

I'd love to hear other people's thoughts on this, especially those that read who don't have FXS children - so please feel free to comment!

Monday, June 13, 2011

A Couple Things

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Well, the school year is wrapping up this week for Ayden and I can hardly believe it's been a full year.  I think one of the most enjoyable things for me is looking back on how far Ayden has come socially since last year at this time.  It definitely makes me happy we put him in the ECSE classroom. 

One thing I am worried about this coming week is getting the transition to not having school down for him.  I know he'll get it, but I also remember spring break.  Most of the week was him whining and fussing and just overall very unhappy.  My plan is to start his "school" here Thursday, so he's not missing a day.  I'm going to try to focus each week on something for him, then we'll play games and work on things that follow that theme for each week.  I'm also going to try to start early-morning walks so we can get some fresh air while it's still cool out and separate our weekdays from weekends a little; however, I am a little worried about rainy mornings so I'll have to be creative and think of an indoor activity for those days.

Finally... we just received word that Ayden's iPad will be shipping this week!  I can't even contain my excitement that we'll soon have this wonderful piece of technology in our hands!!  I already have a good idea on how we will be rotating though apps with him and incorporating it into our days.  I also know he is going to go C-R-A-Z-Y when he see Angry Birds on the "big screen". I mentioned the iPad, I want to also give another shout-out to Marissa's Bunny who is responsible for us being able to incorporate this wonderful device into Ayden's therapy.  They are currently hosting ANOTHER special needs iPad giveaway and I urge you to enter if this is something that could benefit your family.  For us, we knew an iPad would be great for therapy and also for an AAC device, but with the cost of the iPad and the $200 software to get it up and running - well - it just wouldn't have happened.  I cannot even begin to express my gratitude and what was done for us and am so happy to be sharing that they are doing this yet again, really before the first round is even completed! 

Please take a few minutes at Marissa's Bunny to see what they are all about, then checkout the post for their second round of special needs iPads

Thursday, June 2, 2011

Our Week Thus Far...

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As you may have noticed, I missed Research Wednesday this week...but for good reason!  We had a pretty crazy storm rip through here on Sunday night which left us without power for a few days, a non-functional sub pump, and about two inches of water in our basement.  Luckily, the power came back on well before the Thursday @11:30 PM time frame we were given (or we wouldn't even have it back yet!) and as soon as the sub pump kicked on the water disappeared from the basement.  Not-so-luckily....we had a decent amount of stuff that was damaged. 

Mr Awesome lost A LOT of his comic books.  Rare comic books that probably will not be replaced even if we could afford it.  Comic books that were up off the ground on shelves, it's just the water got high enough to soak the boxes which in turn soaked the comic books.  We dried out and saved what we could, but it's a pretty devastating loss as far as "stuff" goes.  Also on the lower shelves were a good amount of DVD's including my entire Harry Potter collection, Pirates of the Caribbean, Kingdom of Heaven, and Memento.  While the DVDs themselves are ok, the cases are not.  Most of those are again replaceable, but a good amount were also gifts from some pretty special people and it breaks my heart to have them ruined.  I'm just very thankful my Lord of the Rings Extended box set wasn't on the bottom shelf as well.

Despite the storming, power-loss, and flooding; we were still able to enjoy a wonderful Memorial Day at our friends Mark & Cristen's place.  It's the 5th year they've had it, and we just have such a great time.  The weather was sunny and about 90, which usually is uncomfortably hot in Michigan, but with the breeze it was beautiful.  They had a ball-pit/inflatable bouncy set up as well as a slip-n-slide.  I think there were about 10-15 kids there over the course of the day ranging from age 3 months to 7, but mine were the only boys!  The kids all seemed to have a wonderful time as well, I know mine came home and CRASHED.  I'm also very happy to report we didn't have a single meltdown all day - even with the amount of people and dogs around! 

So, with all this happening and Memorial Day  - yesterday was a lot of cleaning up and washing.  I got busy enough I even forgot to get Ayden off the bus!  It didn't help it was a short-day and the bus was here about 15 minutes early....but I felt pretty bad.  I don't think he even noticed, he was playing with his friend and didn't want to leave when I did get out there.  I'll make sure I resume our normal Research Wednesday next week!