Wednesday, December 28, 2011

2011 In Review - Part 1

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I feel like this year is closing a chapter on my family's life that is going to be much better closed than open.  Each year I like to look back and reflect on the previous year, but those same thoughts of the past year bring on anxiety and panic attacks for me.  Despite all this, we did have good things going on amidst the bad and want to share a bit of our year (good and bad) with you.

January - We rang in the new year (or shortly thereafter) with our first trip to the ER with the kids, wrecking our family (and only) car, a new scar for Issac, a new (to us) van, and emergency surgery for Mom. 

Isn't the van so nice?!

February - This month was better for us.  A new sister-in-law was added to the family, followed by our first nephew!  We also did a make-over on the boys' room and had family pictures taken.

March - While fairly uneventful in pictures...March confirmed our long-assumed suspicions that Ayden indeed has Fragile X Syndrome.  It was also the beginning of this blog, which has been theraputic for me as well as helping others.  March's unseasonably warm weather had us headed to the park as well, for the first (of many) 2011 weekend park trips.

April - A month of celebration for our family! We celebrated Issac's 2nd birthday with a Cars themed party while a 90 degree day in mid-April had us heading to the zoo with some good friends of ours.  Easter brought us to Grandad and Nana's house where we had an Easter Egg hunt in the backyard and took a trip to the park later that weekend.  It was a much needed month of family and friends.

May -Not nearly as eventful as the previous month, we again had some beautiful weather though that brought out the pool and two VERY happy boys.

June - The summer always begins our "busy" season and this year was no exception.  Ayden had his last day of his first year of school - a very momentous occasion! We celebrated Father's Day with Mr Awesome's family, then celebrated my 30th Birthday as well. June also brought about another exciting change to our lives, as we found out we were expecting our third little baby (and baby was in the correct place this time around)!

Since we had so many things happening, I decided to divide this up into a couple parts. Check back later this week to see Part 2!

Tuesday, December 27, 2011

Christmas Time

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I love Christmas.  I love spending time with family, the food, looking back at the past year...but when you are doing extra traveling, messing with schedules, tons of people, and activities that aren't normal it just can wear on your little ones.  Especially those little ones with sensory issues that need the consistency of a schedule to help them function their best.

We've been very lucky with Christmas time.  Each year we spend two nights with each set of Grandparents split by spending Christmas Eve with my family and Christmas Day with my in-laws.  It's a lot of traveling, but so very worth it.  (Even those years where we are driving in a snow storm Christmas Eve night!). 

With Ayden, all of this becomes very trying at times.  Opening presents causes anxiety, the waiting while others open presents is difficult as well for him, thanking those that gave gifts is also a small struggle - but through it all he manages.  We do what we can for him, without letting him skip out on anything.  It's always been important to us that he learns to take part in family gatherings.  We do other things to help with the stress it causes such as allowing him to do his favorite things longer or eat all day if that is what he wants.  I know many other FX parents that will alter and change the way their family celebrates by doing things like opening all the presents for the kids and leaving them in a pile to attack on Christmas morning.  I don't have any issues with this as it works for some, it just isn't what we wanted.  It much more important to us that Ayden is a part of our family events where he feels accepted and welcome so when he does things like this outside of family, he will be much more comfortable.

This year really was one of the best years we've had with Ayden.  He was fussy and whiny pretty much all day on the 24th and 25th, but still did everything that was expected of him without having any temper tantrums or breakdowns.  That, and the fact he actually enjoyed opening gifts and playing with them really was amazing.   We had some bad times during the time we were gone with listening and napping (normal 4.5 year old stuff) but overall I think he really enjoyed everything.

Today, of course, both kids are exhausted.  (So are mom and dad!)  But as I take time to reflect on the strides Ayden has made since last Christmas - I remember that all that we push him to do is so very worth it.

I think my biggest joy of the past few days is that Ayden (and Issac) are finally starting to show us that they understand we expect them to be more well behaved away from home than at home. It was just a few small instances, but it was enough to warm my heart.

For those other FX families that had a more trying holiday season....know that it does get better.  And most importantly, know that the holidays aren't always something to dread.

I'd like to end here with a few pictures.  We don't get tons of good ones since the boys hate sitting still, but these are some of my favorites.


Friday, December 2, 2011

What to do when nothing seems to be working...

It's been a while since I've posted.  I mostly try to keep this blog very upbeat and positive, a place where I can share information and help others out.  Being positive is a very large part of that for me, so when I'm having a rough time, I tend to not post.  But, part of this life for us is dealing with those down/hard times as well as the good times.  So today, I'm going to share some of the more difficult parts of our life lately.

I mentioned on here a few months back about how we were having problems with Ayden hitting his brother.  He's always pushed him a bit, but it really got out of hand when school started in the fall.  Since then, it's gotten even worse.  There isn't an hour of my day that goes by where Ayden is not hitting, pushing, slapping, or doing some other type of physical damage to his little brother.  It has become a constant source of problems in our house and despite everything we have tried, it is not getting even a little better. 

The past few weeks, we've had the joy of another issue popping up as well - Ayden is just whining all. the. time.  This past week it really hit an all-time high frustration level as we quite literally listened to him whine from around 4pm to 7pm (bedtime).  Ayden's whining in the past has always been related to communication issues, and while I can't rule that out this time - I don't feel that is the case entirely.  He's doing a very good job using his PECS to communicate his wants/needs in sentences to us.  The problem that we are having now is that instead of giving him whatever he asks for as you do in the learning stage of PECS, we have begun to tell him no and this isn't going over very well.  At all.  We introduced the yes/no cards a few months ago, and he definitely understands them.  He will build his sentence and then hand us the yes card, so it is very clear he does in fact understand.  He just doesn't like it.  I believe this is fairly typical behavior for a 4.5 year old, but as he can not actually VOICE his frustration/anger at our decision he is using the only method he knows how and that happens to be whining and crying.  Understanding this though does not make it easier on us.  So...we get a frustrated and angry 4 year old, who then begins to not only whine and cry, but also to take out his anger by doing things like throwing toys, hitting his brother, yanking on the curtains etc. 

Of course, we have to add on the final complication to this entire mess, the fact that both boys have not been listening to us lately.  I certainly expect this a little, they are of course children.  My frustration lies in the fact that no matter how consistent we are or what we are doing, every day the same words are coming out of my mouth constantly:

"Don't hit."
"Don't push"
"Don't scream"
"Don't run in the house"
"Don't go in the kitchen"
"Don't get out of bed"

Some of these are directed at Ayden, and some at Issac.  Issac is doing very well with his speech, and has a very consistent answer to return to me as well. "NO".   I very much expect this from a 2 year old, and it has been happening a month or so - though it is always dealt with.   Usually I just need to look at him and he corrects himself to "Yes, mom".  So, it really shouldn't have come as a surprise when Ayden started telling me no as well.  It was actually kind of the icing on the cake.

I feel like I could handle a few of these issues at a time, but all of them together is just too much.  I'm tired, frustrated, and feeling utterly and completely lost.  None of our normal disciplinary issues are working right now.  (I'm sure being 7 months pregnant certainly is not helping things at all either.)   So I sit here, wondering what more we could possibly do.  What part of Ayden's behavior issues are typical 4 year old issues and what part are FXS issues.  Most of all, I wonder what I can do so he is his normal happy again.  It's difficult to explain that to people, because Ayden is one of the happiest kids I've ever met.  When you talk about a smile lighting up a room, you need only to look to him to understand that.  When he is happy, the world around him his happy.  His smile, his laugh, his loveable will never meet a happier child.  This is quite literally the first thing most people say to us, even that have known him for a while.  So when I say he isn't normal happy, I mean he isn't like I explained above.  He's happy, and it's noticeable - it's just not normal for him.

I don't have the answers right now for all this, but I do know it needs fixing.  The hitting just cannot continue especially as we will have a newborn in the house very soon.  I do know that it's something only Mr Awesome and I can work through though.  And we will, it's just taking time.  Through all of it we must be doing something right as these behaviors do not happen much outside the house.  It gives me hope that it will begin resolving itself as we continue to push forward.

We'll be doing our annual Christmas Tree cutting and decorating this weekend.  I'm hoping it will help them a bit to get out and do something different that Ayden certainly has enjoyed in the past and Issac should start to remember.   And hopefully, I will update soon with some of these issue getting better or resolved.