Update on the Family Part 1: Ayden

I've taken a long hiatus from the land of blogging.  I feel like there is not a lot to say most days that isn't a repeat of what has been said already.  I am inching in on three years of blogging here.  Yikes.

I want to start posting more.  Our life and how we live with Fragile X changes so often, and keeping up with that for newly diagnosed families is important to me.  I want to continue to be a springboard into the lives of those that are just hearing Fragile X Syndrome for the first time. Even for those whom are facing other diagnosis dealing with just overall developmental delays.   So today I move forward and attempt to do that, but first let me update you on the family happenings starting with Ayden.

Ayden is now six and a half years old.  I have yet to have a day pass where he does not surprise and amaze me - even moreso lately.  His language took a huge turn for the better over the past month and he is talking up a storm.  Not many sentences yet, but sometimes phrases and other times single words bunched together to get his point across.  This morning while waiting for the bus, Mr Awesome went outside to take the garbage out.  Ayden was watching him and said "Bye-bye Daddy!".  I explained Dad wasn't leaving yet, just taking the garbage out and he said "Leave.  Daddy no-no.  Leave.  Ayden.  Bus."  Not sentences, but he certainly is getting his point across.  I find myself having conversations with him lately where he is giving his opinion MUCH more often.  Mostly though, he is narrating the world around him.  It is beautiful and wonderful to watch him learn that his words have power.  I favorite (though I say favorite for lack of a better term) word to say is "Nope".  He uses this quite often when we tell him to do things.  It makes it much less difficult to tell the difference between him being obstinant and over stimulated.  Sometime I will catch it on video!

Academically he is doing well.  We would always prefer more, but we (his team and family) are all working hard to move him towards his goals.  Reading and writing have progressed the most since school started.  I haven't spoken with his teacher specifically recently but I feel he is close to on-par for his peers right now in reading.  The writing will come eventually.  Math is our problem area and biggest focus.  Somewhere between school ending last year and starting back up he stopped understanding 1:1 correspondence.  This is a key component of math.  (Side note:  for those that don't understand what 1:1 correspondence is - an easy way to explain it is the ability to understand when you have five ducks and wnat to count them that each duck is one duck.)  This has quite obviously set him back a little in math.  I think we have regained that ability, but not enough to start simple addition yet so we are falling behind in math.  Although not unexpected, it is still hard to see him struggle.  

Socially we have also seen many improvements.  Ayden really loves being around his peers and his friends.  Now that he is learning to communicate with words it is just even better.  We had some problems with hitting at the beginning of the school year where he would hit his friends (and/or teachers) if he didn't like what they were doing.  Many incidents where a peer would be done playing with him and he would hit them because he wasn't done.  I think we have moved beyond that (thankfully) especially as he has learned "Nope".  We are more than blessed that he loves his friends so much - it is certainly what is making inclusion in the gen ed classroom work so well for him.

There really is just so much happening with Ayden that it is hard to put it all down.  I do want to add one last thought though.  As his language is emerging more, so is his sense of humor.  We have always seen glimpses of it in the way he goofed around, but now it is amazing!  He can tell you what he is laughing at most of the time and often will just make silly jokes to make US laugh.  After six years, you become accostomed to communicating with your child in a certain way, and then the game changes.  It is just pure joy to see.  I often catch myself watching and listening to him with just tears in my eyes.  He has come so far and we are so very thankful.

And in case you missed it...Ayden was the face of the NFXF Annual fund this year.  VERY awesome to see his face everytime I visit their website.  I love being a part of an organization that is so close to my heart.  http://www.fragilex.org/support-the-nfxf/annual-fund/

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STX 209 - An (almost final) Update

I've often heard fragile x described as having the sound of a vacuum in your head.  Consider going through life daily with that sound.  Attempting to speak.  To walk into large rooms full of people.  Imagine how difficult it would be and how easily you could become frustrated.  Imagine then that there was something you could do to shut that noise off.  That is how I look at arbaclofen - as an off switch for that constant noise in Ayden's head.  Now we have to turn that switch back on.  Devastated does not even begin to describe the emotions running through me.  Terrified.  Worried,  Overwhelmed.  Sadness.  And tears...lots of tears.

"We regret to inform you that Study 209FX303 [An Open-Label Extension Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of STX209 (arbaclofen) in subjects with Fragile X Syndrome] is being terminated immediately.  The closure of the study is due to resource limitations at Seaside Theraputics, Inc., and is not related to any known safety issues in patients dosed with STX209."

You have seen our journey here.  From barely speaking, struggling socially, anxiety issues, and lack of self awareness to a little boy who was making friends, playing with those friends, playing with toys correctly, jumping into new situations with ease, going into loud places, laughing, talking.  TALKING.   What a difference six months and a little strawberry pill can make.

We were told the open label would be available until FDA approval (or lack thereof).  We were told 4-6 months notice if they were to ever stop the open label.  Things don't always go the way we expect though, and as of May 31 given just two weeks of notice, we have to begin the heartbreaking process of weaning Ayden from arbaclofen.

I took the night last night to sleep and hopefully feel better today.  I don't.  It's not fair.  The fact that this comes down to funding is just too much.   I'm hoping beyond anything else that we don't see regression.  That somehow this drug has made lasting connections that will continue.  That the drug only supplemented and helped what was already happening with Ayden developmentally.  I don't want to lose him into himself.  I just can't.  I won't.  We WILL find something.  We will do whatever we can to help him.  We always have and will continue to do so.  

We have other options for him.  We do know he needs something to help him with anxiety and focus.  We were at that point when we started the STX209 trial.  It was a good fit for us, we didn't have to wean off anything to start the trial because he wasn't on anything.   We knew this could happen.  It doesn't make this easier.

For now, I need to purge these raw, negative emotions.  Then, then I will look to tomorrow.

“You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, and to embrace them with courage, faith and hope.”  - Thomas Merton


Some other parent's blogs that were involved in the 209 trial are sharing their thoughts as well.  You may click on each person to read their thoughts.  I'll update as I see more.

Holly
Melissa
Kristin
Rachelle
Bonnie
Kristie

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STX 209 - Our Journey So Far [Update 5]

I haven't done an official update in quite some time.  We have been on open label now since January 18 (a little over two months).  To say we're happy with his progress may be an understatement!  We don't really notice a lot of the behavior changes being around him all the time, but when I look back through videos it's very noticeable so I wanted to share here.

We first started seeing Ayden's speech emerge in September of 2012, he was a little over 5 at the time.   If you watch him here, you can see he's spinning and doing a lot of gaze avoidance.  He also is having a very difficult time "accessing" the right sounds for what he is trying to say.

The next video is about a month later on 10/10/2012.  The same type of social problems with gaze avoidance and such are present.  He's not spinning because I put him on a stool that he does not like to get down from. You can see how difficult it is for him to focus on what was happening.  He is saying more words than he was previously though is still having a difficult time accessing the correct sounds.

These two videos were before we entered the blind portion of the STX 209 trial.  I wanted to share them as the difference in how he is even acting improves.  These two videos were also taken under optimal conditions for Ayden, something I did not do later on.

This next video was taken one month into the blind portion of the trial.  You can see improvements in almost all areas.  He was eating at the time, but you can see his focus is much better than in the last two videos.  You also can see his is looking directly at me when he says most of the words (though not between words much).  More importantly he is actually accessing sound without many issues and even isolating certain sounds.

The next video was taken at the end of the STX 209 blind trial / beginning of the open label portion.  We were actually a week into the open label when this was taken, so he was somewhat improved from how bad he actually got at the end of the blind trial.  He essentially lost all speech and became very dis-regulated  no focus etc.  Notice his eye contact is gone, focus is pretty much not there, and he is having such a difficult time accessing sounds -- he isn't even trying on some.  This was the most heartbreaking video to make, but I wanted to document it as well.

As I said earlier, we are now two months into the open label portion of the trial. Ayden is currently on 20mg of Arbacolfen (STX 209) taken 10mg 2x per day.   At school, they are seeing improvements across the board.  Socially, academically etc.  He has at least doubled where he was at in all areas since he started on STX 209.  He has been able to isolate every letter of the alphabet and is currently working on combining vowels in speech therapy.  His overall vocabulary is somewhere around 50 spoken words; some of which are beginning to be heard spontaneously in small sentences.  He is beginning to try to read words from books as well.   Most importantly he is playing and socializing with his peers.  At school, we've seen a huge decrease in stim behaviors (though at home we're seeing more in some cases).  Just in case it's difficult to trust a mom who of course sees the best in her child, let me end with this before I share one last video.  We are at 40-60% inclusion for Ayden right now in his IEP.  We were informed by his ASD room teacher at parent/teacher conferences that she is pushing for more inclusion next year.   We're looking at upwards of 60-80% of his days spent in a general education setting with his peers next year.  

The final video I want to share is from last evening.  We were doing our normal bath/bed routine and Mr Awesome was playing a game on his phone.  Ayden came in, requested to sit up on the counter next to Daddy and then began talking.  We don't understand [most of] his words here, but the voice inflections and different sounds are certainly patterns of speech.  His little voice is just the sweetest sound in the world.


 

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Speech Video 01/23/2013

Our last speech video was created on December 5.  At that time, we were at 24 words and 9 different isolated sounds - all made with little to no issues.  I encourage you to go back and watch that video before this one to really get a good idea of the changes.  December 5 Speech Video

I took my previous post and started to go through the words he was successful with at the last video when I made this.  The words at that time:  Ayden, Mommy, Daddy, Issac, Emma, sissy, car, cupcake, turtle, turkey, oink, gobble, quack, woof, moo, yeah!, bubble, bus, birds, fish, ball, apple, brother, eagle.  And the sounds:  /b/, /g/, /t/, /p/, /c/, /s/, /a/, /m/, /i/.  We barely made it through half the list and you'll see him slowly lose focus more and more as well as protest.

I didn't count today for an exact number, but we're back to about 5 words.  Maybe 10 with a lot of pressure.  The last video was taken right before we started noticing things getting worse in the double blind portion of the STX 209 trial.  Ayden became considerably worse over the course of the next six weeks while on the maintenance portion and into the titrating down portion of the trial.  His speech slowly regressed along with a lot of other gains.  I wish I would have done this before we started the open-label, because while this is bad it is still better than it was a week ago.  We are 5 days into the open-label where we know we are receiving the medication and are beginning to see a bit of improvement in his focus and speech.  I am hopeful as we get his dosing correct in the open label that we will begin to see these gains return and our next speech video will be much better.

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STX 209 - Update 3

I know this post is crazy overdue...but other things keep requiring my attention this holiday season.  Now that it's almost over and I have a few minutes to breath..(who am I kidding there?  I never have time to breathe!)

My last update was in mid-November, almost six weeks ago.  We have been on the "maintenance" portion of the trial for a while now.  This means we have been on a steady dose of whatever level of drug (or placebo) we were assigned to in the randomization.

Behaviorally..Ayden is doing okay.  It really depends on the day.  I can say without reservation that there have been changes.  His good is much better.  He is more functional and anxiety is very much decreased from what it was when we started.  The flip side of this is his meltdowns - when they do occur - are terrible. We've seen many more instances of throwing himself on the ground, slamming his head into the wall, throwing materials at school, and hitting himself in the head.  We've randomly seen all of these issues come and go with Ayden, but it is every time his anxiety gets bad or he is frustrated that we see them now.  None of it has harmed himself or others but it's very difficult to watch.   I was looking forward to starting to wean him off the drug for this reason, but our appointment was rescheduled due to weather so we have another week still before we start the weaning process.   I personally believe he is on too high of a dose (though we have discussed the possibility he is on too low of a dose as well) so getting into the extension will be interesting.

As far as speech goes, we are progressing.  Since my last update on the trial we have added more words and also sound isolation/imitation.  This is perhaps the most exciting to me of everything we have seen.  Ayden has been in speech therapy forever, but without even attempting to imitate or isolate sounds speech therapy doesn't do much good.  I very much understand it just could be time for this to start happening for him and the fact we are in the trial could be coincidence - but I just don't think it is.   Time will tell, though!

My next update will be during or after the weaning process.  If he has been on the medication this entire time as I think he is, we should notice some significant changes back to old behaviors.  Here's hoping I keep my sanity the next month or two as we transition him off and then back on again for the extension.

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Speech Video 12/5/2012

It has been about two months since I made the last speech video for Ayden.  I sat down to make another one today.  We are now at 24 words and able to isolate at least 9 sounds.  Last time I did this on 10/10/12 we were only at 14 words, no sound isolation, and no attempts to imitate.  You may also remember we have since that time started on the STX 209 trial (our start date was 10/29)

I have more to add about STX 209..but that will be another post.  We are in the maintenance portion of the trial right now and will begin the weaning portion around Christmas.

He doesn't do all the words great this go around - partly because I'm rewarding him with M&Ms (forgive his open mouth) and partly because he just didn't want to do it.  Mom broke his routine by making him sit still to do some speaking.  His sound isolation isn't very good here either, school is having much more success with isolation than I am at home.  We didn't hear the /t/ isolation for almost two weeks after school started hearing it - which is why the /a/ and /i/ isolation is almost non-existent in the video (these are new).

Our current words:  Ayden, Mommy, Daddy, Issac, Emma, sissy, car, cupcake, turtle, turkey, oink, gobble, quack, woof, moo, yeah!, bubble, bus, birds, fish, ball, apple, brother, eagle.

Our current sounds:  /b/, /g/, /t/, /p/, /c/, /s/, /a/, /m/, /i/

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Speech Video 10/10/2012

I mentioned in my last post that speech was finally starting to come for Ayden.  Not in just little blurbs where we hear words and they disappear either.  We are consistently hearing words and sounds now made with purpose.  In addition to that, we are also seeing more and more attempts to communicate with both adults and peers.  And he's trying.   Some days we need to push him, but he is attempting to say words when we request him to do so and is beginning to succeed.  He still has a long road, but we're moving in the right direction.

Each week or two I'm trying to take a video of Ayden speaking.  I want to track his progress not just with him saying words but how he sounds while saying them and how quickly he can do it.  Between speech therapy at school and what we do with him at home - we are all working towards isolating sounds with him that he can make to improve his motor planning and speech.

We are currently at 14 spoken words:

Mama, Dada, Ayden, Bird(s), Bubble, Bus, Ball, Cupcake, Quack, Oink, Eagle, Apple, Car, Fish

Here is our video log from today.  He was a bit distracted, but I did get him to say them pretty decent.  I missed 'ball' and 'car' -  the rest are included.

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Minocycline Update - Week 2

So, we're now inching into week 3 on the minocycline.  I'm noticing two pretty big things happening with Ayden.

First, there is certainly an increase in the type and amount of sounds coming from him.  His humming that he has done forever has turned into a mix of sounds/babbles and humming all mixed together.  He will look at you and babble away as if telling you something, but it is usually not able to be understood.  Along with this is also an increase in communication.  He's trying so hard to communicate with us outside the bounds of just normal wants/needs.  I noticed him approaching two people in conversation multiple times over the past week where he was following the conversation back and forth.  I've even noticed he has moved away from just requesting his preferred items to requesting any item he can - and finding unique ways to request the item if we happen to not have a card available for what he does want.  These are all fantastic leaps for him, and within the course of two weeks makes me extremely happy.

Second, we are beginning to see him playing with toys and items in not such an obsessive manner.  He's been very good about switching between toys/items even when they are his preferred items much more quickly than normal.  He's also finding interest in toys that aren't just his normal types of toys quite often.  He still sticks with toys that spin, move, or make noise for the most part but seeing him pick up and action figure has not been outside the realm of possibility recently.

As an update to the observations last week, the sleepiness has definitely worn off.  I'd put that in the category of either just adjusting to the medicine or his allergies/cold he had going on.  The increase in stim behaviors also seems to have diminished as well.  He's back to his humming at a normal level (though as I mentioned, the humming is mixed with babbling now), the flapping is less than normal but more than last week, and the rocking seems to have disappeared altogether.

With him back to school this week, I'm going to be very interested to see if his teachers notice any changes as well.  Until next time...

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Language Update

We have been seeing some slight improvements in language for Ayden recently.  I always hesitate to say anything or get excited about him saying new words because he often loses them after a short amount of time - but here it is anyhow!  Of course each time I hope it will be different and the words will stick around, but I have yet to see that happen.

This time though..well, it feels different.

We worked a lot on getting Ayden to say "mama" since he was making the M sounds so well.  Work like that is always a lot of tears, usually for both of us.  He doesn't like it and I don't like to see him so sad either.  We persevere though, and instead of just saying words randomly this time, Ayden is able to actually repeat the words back to us on command.

Why is this part so important?  Due to the FXS, Ayden has what is called Developmental Apraxia of Speech (DAS).  What this means is that the area of his brain that tells the muscles how to move and what to do to make a particular sound or series of sounds is not fully developed or functional.  This makes retrieving the motor plan for saying a word difficult.  With DAS, frequently a child may be able to produce a sound or word at one time and not be able to say it again when he wants.

Back to Ayden then, he is now able to repeat about 4 or 5 words after me when I ask him, and has another 2-3 words/phrases that he is saying at the correct time, but is unable to reproduce when asked.  For example, he will often say "all done" as he signs it, but when I ask him to say "all done" he is unable to say it.  I'm finding as he is able to speak words on command, following the same beginning sounds seems to be easiest for him when I request a new word.  So we will go over the words he knows, then begin trying to get him to repeat words with similar sounds.  "Mama" "monkey" "man" etc... "ball" "bubble" "bus".  I find he can come close to other sounds when given a word that starts with a sound he is good at.  We'll keep working with him and see where it leads.

I sincerely hope this language jump for him continues and is the start of a new chapter for him.  IEP time is quickly approaching and we will be making a decision on whether to send Ayden to kindergarten or hold him in the ECSE classroom for another year.  It sure would be nice to have a little bit of language under his belt before we make that decision this May.

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One Year

It's been a year since we had our official diagnosis of Fragile X for Ayden and what a year it has been!  I was just reading through my first post about how Ayden has been developing, and even though I knew he had made large strides it's amazing to see how I felt a year ago compared to how I feel now.  I am not going to dwell much on sadness or feelings from that day a year ago - because we continue to look forward.  Each day is a new day, each task is a struggle in a different way.  Looking back does no good but to stir up feelings of guilt and anxiety for me.  That just isn't how I want to spend these years, they go so quickly.  So...let me go over how Ayden is doing!

Screaming - A year ago, we had minor screaming fits.  Now, I see even less.  We have a decent amount of temper tantrums, but we've found those to mostly be the normal 4.5 year old "I'm not getting what I want" tantrums, minus words of course.  A huge break though for us occurred when we began implementing YES and NO cards for Ayden (via PECS).  He understands these well, so giving a NO card to him and having him throw a tantrum is much easier for us to know how to handle.  It's the differentiation between knowing he's not frustrated we don't understand him and that he is angry because we said no.  Before those cards, it was a guessing game and as we continues to work on dealing with the behavior of the tantrums they continue to get much better.

Communication - As I mentioned in my first post, communication goes hand in hand with screaming/whining/tantrum issues we have with Ayden.  We introduced Ayden to PECS at home over this past year and he is successfully communicating wants/needs via sentences right now - and not just to mom and dad! Just this past weekend, he used his book to request something from his Aunt.  It was such a proud mommy moment!!  We still don't use PECS exclusively for Ayden's communication, but instead use it in combination with some signs and pointing when we don't have a card available for what he wants.  Ayden's understanding of communicating though is so much better.  He will figure out a way to tell us what he wants most of the time, even by stringing two cards together that really shouldn't go together, but in a way that we understand them.  He really has made some fantastic strides that keep both him and us infinitely happier.  As of today, he can also say some words "on command" which is also a very big deal for us.  We've seen words come and go, but never was he able to say them when requested or in response to questions.  We're hoping this time it sticks around.

Food - we still struggle with Ayden on mouth stuffing a lot.  I've tried a decent amount of the "tricks" for FX kids with this issue to no avail.  Same thing with silverware - with the exception being he CAN use silverware now (though not perfect) but refuses to most of the time.  We're hoping that with the use of silverware the mouth stuffing becomes much less prevalent.  He is also beginning to explore even more foods, and eating like a growing boy.  He certainly can pack food away!!

Sensory - We have slowly worked on sensory issues over the past year, and it is helping!  He still has pauses at  walking on different surfaces, but he actually will do it.  We also have successfully use a few exercises to calm him down with the exercise ball as well as the use of a bean bag chair.  It's not perfect, but it certainly is manageable.  Most of the time, he will at least attempt to do what we ask him now without much prodding (or bribery!).  In turn, he's found a decent amount of things he likes doing.

Anxiety - While we've never had terrible anxiety issues with Ayden, the situations where his anxiety runs high have become SO much better!!  He now will usually walk into large crowds, attempt things that are outside of his comfort zone etc without breaking down.  I can't even remember the last time he totally lost it because of his anxiety at new people/situations.  He also will deal with situations differently.  Instead of screaming, he'll quite often just shake his head NO and turn and walk away.  It's pretty amazing to be around him in those situations because I remember how hard certain things were for him and how he dealt with it.

Social - Here's a new category for this year's "round-up".  I don't even know where to begin explaining where Ayden was socially last year other then to say, socially he basically did no interaction with others.  Mom and Dad have always been a different story..but he was perfectly content to sit in a corner and spin a toy rather than play with other kids.  This is easily the area Ayden has made the most strides in this year.  He now plays with other people (kids and adults) and attempts to interact as well.  He will enter a room and give hugs to familiar people, try to get them to play with him, and has even begun initiating peek-a-boo just recently.  Much to mom and dad's excitement, he also has started participating / initiating some pretend play.  He makes stuffed animals wave/talk which really is just AMAZING.

So..that's my year in review for Ayden.  We have some large decisions coming up in the next few months that I think will really determine the course for him as far as schooling goes for a little while at least.  Essentially, the decision of sending him to kindergarten or holding him in the ECSE classroom - but the decision is much more complicated then that.   I'm very much looking forward to another year of progress and just watching him grow with his little brother and new baby sister.  FX is definitely a part of our family, but it is in no way carving our path for us.  We continue to carve our own path, and do what we can to make life the best we can for Ayden as well as his little brother and sister.

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Oh, Brothers!

We have an interesting phenomenon happening in our house recently.  First, we have Ayden who is pretty much completely non-verbal.  Second, we have Issac who at 2.5 never ever stops talking is now speaking in full sentences. 

I don't talk about Issac much on here, and mostly that is because he's developing at what is considered the "normal" rate for children.  It's certainly not that he's less important, but I try to focus on what it's like living with Fragile X in our lives.  I'm sure the older he gets, Issac will become more a part of everything as I know he is going to have his own unique experience with FX.  But, I digress.

The phenomenon I referred to above deals directly with Issac.  He loves his brother dearly.  He wants Ayden to do the same things as him and be in the same room with him most all of the time.  Sure they fight, but they are brothers and that is very much expected.  As we've progressed with Issac through saying words to speaking in sentences just recently, we've noticed Ayden started to say some of the words Issac would say or do things Issac would do.  It is a great thing to see, though a bit backwards for the younger one to be teaching the older of course.  It has been just recent though that Issac has now started doing  a few things.

First, he has begun to order Ayden around.  It will happen after mom or dad tells Ayden to do something where Issac will repeat what we say.  "A-A-Bay go get shoes!"  We are slowly correcting this behavior, but it is a weird thing for me to see happening.  Second, Issac will just decide Ayden needs or wants something that he himself wants as well and be very adamant about it.  "A-A-Bay want cereal too!"  Finally, he will just do things for Ayden if he is having a difficult time doing them (or pretending he can't).

This last thing is what is bothering me the most.  We try to make Ayden as independent as possible but he fights us on it tooth and nail.  For the most part, he would just rather have someone else do it for him.  It's a huge problem, especially as he will pretend he doesn't know how to do something and be extra cute asking for help (lots of kisses, hugs etc).  Plus, it's getting worse!  It is taking a lot of constant communication with anyone that is around Ayden to be sure they are making him do things on his own....but even his own brother will help him out!

So, we're working slowly towards a solution.  Working with Issac is important as well as working with Ayden to find the proper motivation to WANT to do these things for himself.  We haven't seen much progress yet, but it will come.  More than likely Issac will learn more quickly than Ayden...but we'll get there either way.  In the meantime, any advice would be welcome.  :)

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iPad Update, 1 Month Later

I have been meaning to do an update on our iPad for a while now.  As I was going to title this post, I did a quick check to see how long it's been and surprisingly it was exactly one month ago today that I posted our first update!

So, here we are one month in. Ayden's time is closely monitored on the iPad because he literally could playALL DAY without stopping.  We usually do about an hour a day split into two sessions (morning and afternoon).  He is required to play with other toys in order to get his time, so in a way it's used as a reward.   It's especially interesting to me that it calms him as much as it does.  Normally speaking, video games shouldn't do that.  Our FXS doctor actually recommended not allowing any tv or video games an hour before bed or nap when discussing sleep issues.  It is quite the opposite with Ayden and we find he will fall asleep much better or be more calm after playing (if he tolerates his time being up).  With his anxiety issues, any kind of activity that he can do himself to calm down is fantastic.  We were given a bean bag chair by Ayden's uncle, and I also try to keep one of his iPad sessions in that chair as well.  Double sensory calming?  Yes, please!

I've said before Ayden says about 5 words, but none of them consistent and certainly not spontaneous.  He has quite officially begun saying his first consistent word and using it properly without prompting.  It's usually the first word out of his mouth in the morning even.... "iPad!"  I'm sure he'll love hearing this story when he is older too!

Onto the apps....  I'm going to start reviewing some of these Ayden plays a lot soon, first I want to figure out how to screenshot them a bit. I should know how..but haven't sat down and figured it out yet.  We'll get there though!

We have a decent amount of apps for Ayden to play with right now.  First among those is Angry Birds.  It's the first app he went to, the first app he asked for...and definitely the first app he plays when he sits down.   We let him saturate on Angry Birds right away at first and didn't force him to do anything else.  I've learned from experience that letting him get to the point of realizing he's "done" with something is much easier than forcing him.  Our entire day will be ruined if I force him, and that just isn't good for anyone.  It took a few weeks, but he slowly started moving into other apps.  I was really focusing on letters, numbers, colors, and shapes when looking for apps to add - and let's just say there are a TON.   I was fairly certain Ayden knew these things - but output is so difficult for him without proper motivation.  I am ecstatic to be able to say now that he definitely knows all his letters (upper and lowercase), at least the numbers 1-5 (I'm actually thinking it is higher, but he doesn't play with number games much), all his basic colors, all his basic shapes, can match similar objects, play memory games, as well as identify most farm and zoo animals.  Oh, and he can put together 20 piece puzzles.  He's also starting to understand different emotions.  This seems like an odd thing to know, but one of the apps he has shows you a face and says if it's happy, sad, mad etc...  There is a lot more I've noticed, but these are the big ones for us.  Basic skills that most 4 year olds have, but I wasn't sure we were there with Ayden.  Being with him all the time, I suspected he knew all this, but to SEE it.  To know without a doubt he understands, he comprehends...it's amazing and wonderful and just leaves me speechless. 

When I was explaining about the contest that started all of this for us...I said this:

"To be certain, it [an iPad] is not something Ayden needs or we would have figured out a way to swing it.  However, I cannot deny how much this tool could help him."
Today, I am officially eating my words.  I could never have dreamed that this device could bring so much joy to Ayden as it has.  I couldn't have imagined how much it would positively affect our lives.  I certainly wouldn't have thought after just a mere month that he would be giving us the output he is and continuing to build on that knowledge and learn in a way that we can watch and see progress and track.  Most children have their voice and communicate their knowledge in that fashion.  For Ayden, that iPad is his voice right now and what a beautiful voice it is. I love the fact I can get a glimpse into the head of my 4 year old in a way he enjoys.  I couldn't have ever asked for a better gift for him or for us.

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Clinic Visit - Day 2

...and onto day two!

Our morning started with the speech language pathologist.  (Who, by the way, was FANTASTIC).  Ayden was already in a mood when we got there.  I think the past two days were wearing on him after being in the car for 7 hours, sleeping in a new place, and the previous day's evaluations.  He did get a good night sleep, but we could tell early on he wasn't doing well. 

The SLP spoke with us about his history, his current IEP, and basically where Ayden was at overall.  We then had him go through the standard SLP test - he's done it before so he kind of knew how it worked.  He is asked a question, the points to the corresponding picture.  As expected, his receptive language tested right at or around his current age, with his expressive being of course much lower. 

The most interesting thing to me was that he actually has a medical condition that makes it so he can't speak, as opposed to him not wanting to speak.  Developmental Appraxia of Speech is what she called it.  Speech therapy will be very effective in treating this, and with time will hopefully correct issues.  It is why we often hear words from Ayden, then sometimes never again.  I do have to say it is a relief to know there is something we can do though and working with the SLP one-on-one should help out immensely.

So, our recommendatons from the SLP were as follows:  get a one-on-one SLP to work with Ayden to work on oral facilitation and touch desensitization to his face.  This is over and above what he is/will be receiving at school.  We should also work on comprehension past nouns including stabilizing words (under, over, up, down etc), verbs, and word approximations.  Also work on motor noises, environmental sounds, and identifying parts of a whole.  She recommended looking into an AAC device and/or alternative communication such as signs, PECS, etc keeping in mind to use multiple ways as they all will actually help facilitate expressive language.  She also recommended using purposeful play for most of these things I listed out above.  Another thing she was very insistant on was making sure we were following his non-verbal queues such as when he was done with something.  She said positively reinforcing the non-verbal queues he was sending to us is just as important as reinforcing the verbal ones - which I totally agree with, though we of course never thought about that.

She really was amazing to work with.  I wish we lived closer because I know she would work exceptionally with Ayden and our SLP experience hasn't been great after "firing" our first one, having mixed feelings about our second, and while I have no complaints about his in-school SLP, the one in Akron made me realize what we are missing out on. 

Our next and final stop was at the Occupational Therapist (OT).  I do have to admit, I was extremely spoiled with our first (and only) OT Ayden has ever worked with.  Ms Jane was so beyond amazing....it's hard to compare anyone else to her.  Unfortunately, she retired at the same time Ayden moved out of the EarlyOn program.  Anyhow...this OT left much to be desired.  We came in with specific questions of which none were answered.   The entire time we were with her she basically just asked questions we had already answered and put Ayden through the standardized testing - not very well I may add.  It took a lot of help from both Mr Awesome and I to get Ayden through it, while she mostly just sat there.  I know she CAN do that, but having been through this testing before - I know there are multiple ways to get the same goal and she seemed very unwilling to do anything outside her little box.  For an already over-stimulated little boy...it was just a lot.

As expected, Ayden again tested within his age range for cognitive functioning, but tested very low in fine motor skills.  Her recommendations were to work on drawing upright and full body movement to keep him interested.  We need to work on drawing and handwriting for him a lot to prepare him for kindergarten.  She did give us a couple programs to try as well as a few other activities to work on fine motor skills.  As with everyone else we saw, she did recommend additional one-on-one OT that was sensory and motor based.

Again, I am just so disappointed in how the OT worked with Ayden.  She was supposed to be better for FX kids, but it seemed like she was almost annoyed by Ayden and the fact he was overstimulated.  She was really the only person we saw that I have anything bad to say about.  I really hope her report that she sends is much more conclusive and answers the questions we posed to her.  I know Ayden would benefit from a sensory diet, but I have no idea how to incorporate that and that was our biggest question/concern we posed to her! (to which she replied "I'll put some ideas in my report")  The one positive thing was that she was from Michigan, so did have a few local resources for us. 

So, between the two posts here I think it's a good summary of what we covered.  We have Ayden's IEP coming up on Thursday to set next year's goals, and Mr Awesome and I have goals for him for the summer as well.  We basically had to piece through all this information and decide what was most important because we obviously cannot tackle all this at once.  Not only would it be overwhelming to us, but also to Ayden.

Now, we need to go about finding a local SLP and OT for Ayden for one-on-one work.  I have to admit, this is going to be difficult.  We of course need both of these therapists to have a pretty specific skill set - and while I don't think we will find one locally familiar with FX, I can hope, right?!   I emailed the FX Clinic coordinator at UM to see if they could give us some recommendations for therapists explaining we had just been to the Akron Clinic where they were unable to give local therapist recommendations (understandably so), but was basically told we had to fax them medical records and obtain a referral - THEN be seen at the clinic before he could talk to me about it.    FRUSTRATING.  So, I guess I will just have to start looking up some SLP/OT in the area and see what I can find out. We definitely want to get at least an SLP for Ayden over the summer.

And that is where we are at now.  It should be a busy week with the IEP coming up and we are once again going to try some potty training with little brother.  All-in-all, great fun. If anyone has any insight or recommendations that may help with any of this, I would be extremely grateful for the advice!

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April Showers

Those moments we live for as parents often pass by us quickly and quietly like the passing of a gently breeze on a warm summer day. We feel the breeze caressing our skin but it is only after the breeze has passed that we tend to enjoy the coolness it brings to us. Such moments are not always fleeting and unnoticed though. When your child falls outside the nomal expectations for development or health those moments that are gentle breezes for others become glorious summer rainshowers that are reveled and danced in; where each tiny drop of rain is matched with tears of joy.

This afternoon, my house was filled with rainshowers. I was playing the "Where is..." game with Issac who was across the room getting his shoes out while I was changing Ayden's diaper and helping him put his shoes on. I ask where mommy is, where Ayden is, where his brother is etc... Lately we have been ending with "What is my name?" or "Who am I?" Today when I asked that, a little boy finally answered very quietly 'mama'. Only it wasn't the little boy I expected from across the room that answered, but the one sitting infront of me. I asked again, assuming it was a fluke..that Ayden was just babbling again, but I received the same response followed by that smile of his that just melts your heart into a giant puddle. I made sure I cheered for him the way we always do when he does something new before pulling him into my arms. And for once, it was me wetting his shoulder with tears as I reveled in my own personal rainshower.

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Some Words

It's really a joy to hear your kids begin to speak, but for those kids where there is a speech delay - well, let's just say it's about 100 times more amazing when you hear them actually start verbalizing.

I hesitate to make this post, because we've gained and then lost some speech before - but you never know this time! Ayden started saying a few words back in December, but after our family went though a car accident in January the words seems to disappear. Ayden definitely regressed a little, but it seems to be coming back now. I had the luck to catch a few of the words he's been saying on video this morning. If my count is right, we're up to four actual words now. Mama, bird, car, and now ball.

I was going to put the video up here..but it is being difficult right now. For those of you that are on our Facebook...you can view it there.

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