I Wish I was in Italy*

I feel like Fragile X has peeled off my rose colored glasses on the world.  I long for the innocence I once had  where I believed all children developed normally.  You don't think about it much when you have children, really.  Kids just learn, they are naturally curious and beautiful little sponges that soak up every little thing they hear and see.  They want to learn.  Crave that input for their tiny little minds.

I wish I could just sit back and enjoy it again.  I watch Emma play and wonder when she doesn't touch a certain toy if it is because she doesn't like it or because of the texture.  I watch her put a piece of banana in her mouth and take it back out immediately after making a face and wonder if it is sensory related or she just doesn't like the taste.  I watch her get frustrated when she wants something that she could climb and get off the couch - but she doesn't even try to climb; she merely gets frustrated and begins to cry.  I remember Ayden doing the same thing and I wonder if her spacial relations are also affected.  I love seeing the smile on her face as I count to three and she throws herself backwards to hang upside-down in my arms, but I can't escape the fact that she does it when she is upset and overstimulated -- that it appears she is craving vestibular input.

It isn't just my kids anymore.  I'm the one that friends ask about their own kids.  "Should we be worried?"  I don't think people really want to hear my answer -- they want me to tell them their child is fine.  That the delays Ayden has aren't anything they need to worry about.  I know because my answer is always the same, as is their response to it.  If you are wondering whether to worry, you should call Early Intervention for an evaluation.    I know other special needs parents will not be surprised by what comes next.  A dismissal of my recommendation.  A look of pity.  A courteous smile.  I never push, it isn't my place after all.   If there is one thing I've learned it is that a parent has to be ready to face the possibility of a problem before they will take action.

I do not enjoy being that friend.  I don't want to be the person who looks at children playing and sees possible delays. I don't want any of it.  I want the sweet innocence of a first time mom back.  I want to spin with my kids until we are so dizzy we fall to the ground giggling.  I want to run barefoot in the grass.  I want to play in the rain until all of use are covered in mud.  I want to go to the movies, to a baseball game, to the circus.  I want to go to a birthday party and not worry about my child screaming when the other kids sing "Happy Birthday".  I want to do all that without preparing, without having to wonder how long we will make it before we will inevitably have to leave ahead of schedule, without having to ignore rude stares, strange looks.

But then....

I remember that I don't need any of that.

Because I have him.

And them.

And them.

I really couldn't have imagined or asked for more, because Holland is pretty amazing* and I wouldn't leave for anything.

*The title of this post and last sentence are in reference to one of my favorite pieces of writing titled "Welcome to Holland" by Emily Kingsley.  You can read it by clicking HERE.

Read More...

Minocycline Update - Week 3

Week three of the minocycline has come and gone.   Not much new to report this week, we're really seeing much of the same.  The initial boosts we saw the first week or two seem to have tapered off, but the results are still there.

Ayden really is doing a fantastic job communicating with us.  It's not exactly the speech we were hoping to see, but he is trying and that is more than before.  We went through a small phase as we do with any time he starts to communicate new ideas where he would be frustrated with us not understanding him.   That phase was much smaller and quicker this time though for the amount of communication we received out of it. Probably the best communication that has emerged lately is that he is using the sign for help much more often, and to tell us when he wants to help with something as opposed to when he wants help with something.

The other thing we are seeing much more of is a change in his play habits.  Where he started off by not fixating on certain toys as much, he has now moved into playing with toys that don't make noise or spin and playing with them correctly.  I am continuously amazed at how he is advancing so quickly especially in this area.  There is no doubt in my mind this is due to the minocycline.  The chance it may be coincidence that it has lined up with  him taking the medication is just too small.

I'm not sure what my expectations were going into starting this medication for Ayden, definitely we were hoping that speech would advance.  I certainly did not expect to see the advances in play we are experiencing though! Ayden continues to amaze me each day with the changes however small they may be.  It's difficult to explain the joy at seeing your son play with a toy correctly without being forced to.

I'll continue to update as we progress.

Read More...

Christmas Time

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.

Read More...

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 nature....you 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.

Read More...

Annual IEP

Yesterday marked our second IEP meeting with Ayden's ECSE classroom.  I was completely stressed over the meeting, let me tell you!  I'm not sure why I was stressed because we have an amazing team working with Ayden.  I guess this stuff has just never been what I expected, and also this time we were prepared with what we wanted - very specifically prepared.  We received a lot of input from the Fragile X clinic and know where we want to see Ayden, so I worried that maybe his school wouldn't have the same idea.  Very lucky for us, our goals we had setup for him were very similar to what the school had put together as well.

Essentially, we now have a very good plan in place for the summer and next school year - though we will be having another IEP in the fall because of Ayden's autism diagnosis.  Once there is a medical diagnosis, the school has to also do an evaluation to determine services and sometimes the school and medical diagnosis differ. (His teachers are pretty sure it will not be different in Ayden's case though)

I think I'm going to be creating a goals chart for Ayden as another section on this blog...but here is a basic summary of what we are looking at for a year from now.

Summer: 
 - Work on fine motor skills - especially drawing/writing. 
 - Implement PECS at home, shooting for Level 4 proficiency by the end of the summer
    (Level 4 PECS students should be able to construct simple "I want" + "picture" sentences)
-  Begin to use picture stories to help with self-independence tasks that are part of daily routines
-  Begin to use social stories to help alleviate anxiety

School 2011-2012
- Continue to work on fine motor skills.  Be able to draw horizontal & vertical lines on command as well as a circle and square.  Also be able to write his name.
- Continue to advance in PECS to reach Level 6.  This is the equivalent of being able to construct and spontaneously use short sentences such as "I see", "I want", and "It is" as well as answer questions posed to him that would trigger those responses. 
- Implement a visual schedule that includes teaching Ayden that anything on his schedule is unable to be refused. 
- Continue working on taking turns with peers and purposeful play activities
- Teach him how to use wait, break, and help cards as part of his schedule and PECS. 
- Be able to answer yes/no questions with a nod of his head or the applicable PECS card.  He can already shake his head no, but has not started doing it for yes.

All in all, it was a fantastic meeting.  I can't stress enough how lucky we are to have this team working with Ayden.  They are very knowledgeable and helpful but most importantly want to work with us so Ayden can receive the best help possible.  It's more than comforting to know that when I'm sending my non-verbal son off to the care of others that they really have his best interests at heart and push him just as hard as we do at home.

Read More...

Oh! The Places You'll Go

With Ayden being newly-diagnosed with Autism on top of the FX diagnosis - I've been doing a lot of reading on autism which has of course involved numerous blogs. (I find parents to be an invaluable resource)  With two spectrum disorders - nothing is going to be alike even if I do run across another child with both FX and autism, but I find a lot of comfort in reading about how others have overcome the difficulties that either or both of these disorders face.

I did read one blog yesterday that really hit close to home.  It's also been a recent topic of conversation between Mr Awesome and myself.  The post was mainly about how many families that received an autism diagnosis felt as if the outcome for their child was not hopeful.  It went on for the blogger to explain about her son's diagnosis and her feelings about this as well as how she dealt with it.  It was very well written, and while the entire blog post was fantastic, it was this quote that jumped out at me...

"Unless people have higher expectations of our children, there is nothing to motivate/encourage them to think about alternative solutions."
How can we as parents put a cap on where our kids can go?  If someone says to me "Your child will never do this" or "Your child can only go this far", I find that unacceptable.  I was never told as a child that I could not do something, no matter how outrageous it was or how the odds may be stacked against me.  I was given support and asked "How can I help you?".  THAT is what parents, caregivers, doctors, therapists, family...anyone that comes into contact and has a relationship with my child should be saying.  I refuse to accept anything less.  I certainly cannot say what either of my children will do in the future, but I know the possibilities are endless and they will shine because that is who they are.

You have brains in your head.
You have feet in your shoes.
You can steer yourself any direction you choose.
-Dr Seuss, Oh! The Places You'll Go

If you are interested in reading the full article, you can check it out here:  The Bigotry of Low Expectations

Read More...