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/

Read More...

One Year Later - Reflections of STX209

It was a year ago today that we made our first trip to the Fragile X clinic at Rush for the beginning of the arbaclofen trial.  I have such mixed emotions today.  I can't forget the amount of hope I had for those little pills.  I remember how I stared at Ayden each day watching for anything different.  Then I slowly saw my baby emerge from the fog of anxiety he was living in.  One year ago my baby was barely saying fifteen words.  They were never spontaneous.

Today, he greeted me by name.  Told me what cereal he wanted for breakfast.  Asked for a different shirt.  Told me he didn't want to wear his hat to school.  (which at this moment I realize he actually managed to pull off!).  He also gave me a hug and then told me bye before running to get on the bus - where of course he greeted his bus driver.

I of course wonder now if the arbaclofen jump started his language or if it was just coincidence that we started around the same time he had a developmental leap.  My gut tells me it was a little of both, but in the long run it doesn't really matter.  We have been off arbaclofen since June 9.  In late July we started on sertraline and while it isn't as good as arbaclofen it is an acceptable alternative.  He still has a lot of anxiety and it doesn't really help his sensory issues, but that is okay.  For now, it's the best we have.  Had we not seen what arbaclofen could do for him already, I'm sure I would be totally happy with this.  But I have.  So it is hard to be happy with a 'second best' and why I feel like my emotions are so jumbled.  I want it back for him.  It all just feels so unfair still.  Even with his progress and how amazing he is doing - I wonder how much better it would be.

Read More...

Autism Insurance Coverage at Michigan State

On March 29th, 2012 three public acts were passed (Public Act 99, 100, & 101) affecting insurance coverage of autism in Michigan. These three acts established a mandate for insurance companies to provide insurance coverage for children with a medical diagnosis on the Autism Spectrum Disorder (Asperger, PDD-NOS, or Autism). It established a tiered system that covered autism diagnosis, pharmaceuticals, psychiatric, psychological, and therapeutic services (speech, occupational, applied behavior analysis, physical therapies; and social workers).

· Children up to 6 years of age are eligible for up to $50,000.00 annually. 

· Children 7 through 12 years are eligible for up to $40,000 annually 

· Children 13 through 18 years are eligible for up to $30,000 annually.

These laws reflect an obvious consensus in Michigan that children on the Spectrum are deserving of the treatment afforded to other medical conditions. However these laws are not applicable to companies who are “self-insured” because companies that are self-insured are governed by federal laws. Knowing this, one of the three acts established a $15 million dollar insurance fund to reimburse self-funded insurance companies and encourage them to provide autism coverage.

Michigan State University is a self-insured company and thus is not legally required under any present laws to provide Autism insurance coverage. MSU’s current insurance providers presently treat Autism as an exclusionary factor for any therapeutic treatment and will deny any requests for therapeutic services if Autism is provided as a diagnostic reason.**

Let me say that again in case you missed it.  MSU's current insurance EXCLUDES any treatment for therapeutic services (speech therapy, occupational therapy, physical therapy etc) if Autism or any other developmental disability (including Fragile X) is listed as a reason for service.  

For us, as a family insured by Michigan State (where Mr Awesome is employeed) this means that Ayden receives all his services through our public school.  Out of pocket costs for a one hour session of his speech therapy run about $400.  At Ayden's current level of speech, he is recommended to receive 2 hours per week of speech therapy in addition to what he receives at school.  For those of you bad at math...that would mean $41,600 in JUST speech therapy per year.  That number doesn't even being to account for the occupational therapy he also needs. 

Over on the right hand side of this blog (and listed at the bottom of this post) there is a link for a petition to help promote receiving this coverage in our health insurance plans.  You do not need to be affiliated with MSU to sign the petition -- your signature just means you support adding this type of coverage for employees and families at the university that could benefit from this coverage.  Please take a minute to read over this petition and sign if you feel so obliged.  

**All wording before the double asterisk was taken from the petition directly.

Sign the petition for Autism Insurance Coverage at MSU

Read More...

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.

Read More...

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.

Read More...

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/

Read More...

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.

Read More...

Parent Teacher Conferences

Our school district is doing conferences a little different this year than normal.  The simple explanation is that the district has a lot of our elementary schools designated as Michigan Focus Schools and this is part of their action plan for 'closing the gap'.  I'm not going into the whole Focus School explanation here - but you can obviously look at the link above if you want.  The idea with the new conferences is that instead of being reactive by having conferences at report card time, we are being proactive.  The conferences consisted of us setting academic and behavioral goals for Ayden to be the focus of this semester.  We also signed a contract that spelled out what the parents and teachers were doing specifically to help the child meet these goals.  It's supposed to get parents more involved and hopefully catch any learning problems for the kids early.

I like the idea, but for us it seems redundant.  We have an IEP in place that is much more in depth than the conference goals were and we actually used and IEP goal word-for-word as one of our conference goals.

The conference did give us some time to sit down with both of Ayden's teachers though and just talk about how he was doing.  We had two conferences - one with the gen ed teacher and one with the ASD teacher (though the ASD teacher was in on both).  We do get daily updates, but face to face is always nice.  We (as always) have issues to work through with him; however, they are minimal.  He is playing well with other peers and making friends in gen ed - which is fantastic.  He is also comprehending the material they are teaching in class and for the most part outputting that comprehension as well.  His ASD teacher is phenomenal at adapting lessons to Ayden's learning style and basically just not taking any behavioral issues from him at all. She's helping gen ed to adapt their materials as well so Ayden can participate like the other kids in his class.  I'm extremely excited to see where he goes as the school year progresses.

The other person we met with was Ayden's speech teacher.  Of course, our main focus has always been speech with Ayden.  A lot of other issues he has will fall into place as his speech comes I think.  It seems likely as many of his issues get better the more he is communicating with us.  As per usual, our biggest dilemma is always figuring out whether his whining is because he doesn't want to do something or because he is anxious.  So, his speech teacher is doing amazing with him.  She is working through using PECS to request things in the classroom from not only teachers but also peers. He's already had one instance where he did request a toy from another peer, which is amazing!  On top of all that, Ayden's speech (like, actual WORDS) is starting to come.  We are up to about 10-11 words that he can say upon request.  Spontaneous use is (as expected) not happening yet - but SPEECH.  She is now working to isolate the sounds he can make so we can start practicing more.  We were hesitant about the SLP after our IEP, but I'm very impressed with her and really enjoy working with her so far (as does Ayden).

So...long, wordy post shortened:  We love Ayden's team he currently has.  They are all on-board with what we expect from him at home and are working very hard to make sure we are as consistent as possible no matter who is working with him.  It's pretty much everything we could have hoped for with where he is at right now.

Read More...

Minocycline at Four Months

It's been a while since I posted anything about how the Minocycline was going with Ayden.  We started at the end of March and now are mid-July - almost four months in.

I can say with certainty that the mino is definitely helping Ayden, just not in ways we totally expected.  In the middle of June, I somehow forgot to give him his medication for an entire week.  Over the course of that week we began to notice behaviors emerging that we hadn't seen in a while.  It didn't click until I realized exactly how long he'd been without the minocycline and put it together with the emergence of these old behaviors that what we were seeing was related to not taking the medication.  Within a couple days of starting the minocycline back up the behaviors again let up.  Very good news, and certainly a reason to keep him on!

Other things I've noticed are that he is really doing well with words and small sentences.  It's hard for him, he has to really work to produce any sounds deliberately - but he does.  And OH is it music to my ears!!  So far we can get him to say Mama, Dada, Ball, Birds, Bubble, Bus, and sometimes Car.  Outside of those, he spontaneously will say Yeah!, No, and All done (but not when prompted).  That's a total of TEN words he can say!!  In addition to spoken word, he also has "signs" for yes, no, all-done, please, more, sorry, help, and play.  Many of these happening after we started minocycline.

In addition to words, he really is attempting to communicate his wants/needs more to us.  He has continually amazed me with showing us and finding new ways to tell us what he wants.  We use PECS at home, but when there is not a card for what he wants he can get very creative.  He wants to be heard, and not just to get what he wants.  You can see him wanting to join in joking more and do things to make others laugh.  It's a joy to see his personality emerging even more than it already has.

So, while the mino isn't a miracle drug, it certainly has been helpful for us.  I feel like no single therapy or medication will work by itself to help him make advances, but a few of them together.  Between school, the work we do at home, and a little help from the mino we really have made huge strides in the past four months.

Read More...

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.

Read More...

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.

Read More...

iPad Apps - An Introduction

I finally went out and learned how to take a screen shot on the iPad, so now I just need to get it out of Ayden's hands to actually get some screen shots of our "favorite" apps and get some reviews going.  For now, I'm going to start with an introduction to choosing apps to put on your iPad....  Because the most common question I hear from parents of kids with iPads is...what apps?  There are SO MANY out there and many of them have the same type of information just put together in different formats.  So where to even begin?  It can be overwhelming, and even more so difficult to gauge which apps your little one will actually use.  No one wants to pay for an app that isn't going to be used or that is just overall not useful.

For us, the first thing I did was make a list of things we wanted to accomplish with apps.  Communication, colors, numbers, shapes, fine motor, parts of a whole, and overall output of information were top for us.  Once I knew I wanted the apps to do, my search became easier.  The Apple App store is set up fairly well in that you can search for "color" in the educational apps category and get a decent amount of hits.  From there, I looked at screen shots, descriptions, and especially reviews.

Overall, I ended up with about 50 apps to try out.  Of course the real test was seeing which apps Ayden would actually use....so instead of me even opening the apps I just let him pick and choose.  It became pretty clear over the course of a few days which apps he liked better than others, so I started removing apps and then looking for more to fill in gaps.  We repeated this process a few times, and each time I add new apps I just put the app on the iPad and Ayden will immediately gravitate toward new apps.  Sometimes he opens them and is done, but others he adds to his ever-growing list of apps he loves to play.

A great source is the website Moms With Apps.  Not only do they have fantastic reviews of apps, they also have something called Free App Friday, where they review apps and have either discounted or free apps specific to that day.  While this isn't set up for special needs kiddos, it is setup for family friendly apps - specifically to "promote quality apps for kids and families". 

Apps for Children with Special Needs is also a fantastic website to check out as a resource.  They review and have videos of apps specifically designed to help you decide if that app is what you are looking for.  They also have great programs for acquiring an iPad for those that may not be able to afford it.

I mentioned above how I use reviews on the app store to help me determine if an app is good to download or not.  I think one of the most important things we can do to help out other parents is leave reviews for apps - good or bad!  Just make sure you are constructive in why you do or don't like the app and how the description matches the actual app.  "My son didn't like this app" or "This is terrible" aren't going to help anyone make decisions, so be thoughtful and detailed about what you did or didn't like and why.

I'm going to start adding reviews for apps over the next week or two.  I have my list of about 15-20 apps that I'm going to give detailed information on their uses and how Ayden and Issac utilize these apps.  We have a unique perspective in that one child has FX/Autism and the other is on target for developmental milestones - I think it makes for interesting outcomes myself!

For now, please feel free to message me with any questions about apps, and also to leave your choices for favorite apps as well!  I would LOVE to get others input!  You can either leave a comment here, or look for my email address in the upper right hand corner of the blog.

Read More...

Behavior Modification

I try not to do a lot of posts when I am frustrated, since I strive to keep this about not about how I'm feeling day to day but about Ayden and Fragile X; however, I can't deny that those two things bring many frustrations for me (especially together).  I'd been thinking about my next post here knowing I needed to update how Ayden was doing, and it just wasn't what I wanted.

I look back at the past month and see us with the same disciplinary issues we had a month ago, even two months ago.  We're doing all the right things - being consistent, disciplining when necessary, being firm - but nothing has changed.  In fact, I'd say it's gotten worse in some areas.  I feel like I haven't been doing enough, like I need to focus more time on him and his needs.  His behavior is telling me something, but I just don't know what and I feel...stuck. lost.  hopeless.  tired.  overwhelmed.

I go through this with him every little while.  This whole journey is definitely not peaches and cream, it has it ups and severe downs.  I hit these downs and wonder where we go from here.  Then I remember to take a step back and analyze because something isn't working how we want it.  I remember that I can do this, that I am the best choice to do this.  Most of all, I remember that he needs me and if I don't help him over these mountains then who will. 

So...time to analyze.  We have a couple behaviors that need to change. 

1)  Ayden is still pushing baby brother all. the. time.  He has been doing this since Issac started walking, but it isn't everyday.  I feel like it was better for a short time, then maybe got worse again this summer.  Sometimes because Issac is in his way, but almost always there is no (apparent) rhyme or reason.  The discipline has always been corner, then telling brother he is sorry (this is done with a hug and kiss).  We attempted to switch these two corrective things around but found the corner to be less effective then.  It's important to note Ayden does not push anyone else.  Not mom, not dad, not kids at school.  This behavior is specifically directed at brother and only occurs with brother.  I think the correction to this problem lies not in modifying his behavior (I mean, that is quite obviously not working), but attempting to modify what is causing the behavior.  Problem is, I have no clue.  So, my first task is going to be identifying what is causing this behavior. 

I am feeling a little better already.  Sometimes it just helps to talk it through!

2)  Our second behavior is a bit more difficult because sometimes it is related to his inability to communicate, but the behavior we want to change is when it is related to him just being, well, four.  Ayden will stand there and whine for hours sometimes.  Whine, cry, scream, flail...they all usually come together.  I know when he gets frustrated and can't tell us what he wants these things occur.  I see those instances occurring less often though as we progress farther into PECS with him and am beginning to know the difference between a tantrum from not getting his own way and a tantrum from being frustrated.  It's much easier when kids can say "no" because at least you know exactly what they are saying no to and can act appropriately!  I think our first step to this is consistently directing him to his PECS book when he whines, and making/teaching him new cards to help with emotions.  I think after he can start identifying what he is feeling, it will be easier for me to say "I know you are upset that you can't do X, but you can't act like this when you are upset - do this instead."  At that point, I will then know it is a tantrum and can discipline appropriately if needed.  This whole process will teach him a) emotions and how to communicate them b) how to redirect his anger in an appropriate manner and c) the inappropriate manner of directing his anger towards others by whining and crying is not acceptable and will be punished.

Having a plan in place can be so helpful!

Our last stretch of summer it seems is going to be a lot of behavior modification, and of course more PECS.  Both good things, and hopefully putting Ayden in a really good place for school starting next month.  Really, he's already on Phase IV of PECS - when the goal was to have him completed with Phase IV by the end of the school year.  I'm infinitely glad we have an IEP change coming up in October because hopefully he will have completed that goal by then! 

I know this isn't an easy ride for us, or anyone dealing with FXS for that matter.  We certainly have our bad days (and sometimes weeks) around here but the joy we receive is just so much more.  I often stress over bad days, falling into bed at night mentally and physically exhausted just hoping tomorrow will be better.  I'm so thankful on those days to have the support that I do because sometimes tomorrow isn't better.  I've learned to bask in the good days though and take the bad ones as they come.  They are inevitable, so it doesn't help to curl into the fetal position and try to escape (even as nice as it sounds!).  Ayden has Fragile X, but I will not let it rule or ruin our lives.  I will do what I can, we will fight and we will win..  Ayden will win....and that is what matters.

Read More...

Research Wednesday

Back to our normal grind here with some more promising new medication to help out FXS kiddos (and adults).  This one is a little different than our clinical trial drugs though as the medication I am covering today is already FDA approved!

Many of you may have heard of minocycline, a drug used to treat bacterial infections including acne.  If you haven't heard of minocycline, you most likely will have heard of tetracycline (though maybe not by name). Tetracycline was used for a while as a "safe" antibiotic for pregnant women but was later found to permanently stain the baby's teeth.

So, how does Minocycline connect with FXS?  Many families whose children are on minocycline are showing improvements in behavior, attention levels, and most importantly language!

It all started with a mouse.  See, a fragile x knockout mouse was given minocycline for three weeks starting at birth and researchers found that the synaptic connections were normalized.   Normally in FXS, those synaptic connections are weak which is thought to be the cause of intellectual disability and autism.  The minocycline treatment in the mouse reversed that and also showed good effects on cognition and learning tasks as well.   After the study was published, many parents wanted their FXS children to try minocycline and a good amount of doctors decided to prescribe it to see what happened.

The amount of FXSers on this, prompted a survey to parents in which a whopping 54% were reporting improvements in language, 50% reported improved attention span, 44% noticed improved social communication, and 30% noticed a lessening of anxiety levels. 

All these promising survey results resulted in a controlled study of minocycline in FXS patients and is currently underway.  I've spoken to many parents whose children are on minocycline and showed improvement very quickly (within a few weeks, actually).  As with any medicine, there are those FXSers who don't respond as well as others, but from the studies and reports I have heard those numbers are fairly small.

I think the most promising thing to me is seeing that there are medications out there now that are proving to treat some of the symptoms of FXS, and that is excellent to hear.

Read More...

Another iPad Update

My blog literally exploded this week...literally. 

In what one website is calling iPadgate...my blog was linked up and I have had an influx of questions that I want to answer now that I'm a little more...settled....from the anger and hurt. 

I came across Marissa's Bunny while looking through some Fragile X blogs just after Ayden's diagnosis.  One website mentioned them, and I ended up spending a few hours reading through the blog and about Marissa.  I saw the original post about the iPad giveaway, and figured, "Why not?". 

Ayden has been using my iPod touch for some time.  It is an original 1st Generation iTouch, not even able to update to iOS4 and has no external speakers - but Ayden doesn't know that.  He enjoys playing Angry Birds and some other preschool games on it that really help with his fine motor skills, which as readers of my blog know Ayden is far behind in for his age.  Since he enjoyed the iTouch so much, I started looking into some of the different programs that essentially turn your iTouch into an AAC Device.  Normal AAC Devices normally have a steep price tag of around $8k-$10k, so it would be an acceptable alternative - even with the software for the iTouch running at about $200.   Proloque2Go is the software we looked at, and it is exactly what we need, but it's just too small on the iTouch.  This is where the iPad would be a huge benefit and the main reason I entered the Marissa's Bunny giveaway. To be certain, it's 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.

I received the email letting us know Ayden was chosen as a winner on Mother's Day evening.  I was crying as I read the email, because this was a huge blessing to us.  Ayden won something because of who he was, and to have someone else recognize how special he was, it meant something. 

I do want to mention here that we never gave any money to Marissa's Bunny or any personal information in my submission that couldn't be easily Google'd or found here on my blog.   Even after we were told we were receiving an iPad, no personal information was submitted.  In the end, we did give our address and also via a letter of recommendation by Ayden's SLP, the pre-school that he attended last year.  Nothing that can cause too much damage.  Unfortunately, I did mention the raffle and giveaway here a few times that was collecting money.  I haven't had anyone mention to me that they donated, but there is always that possibility.  The most I put into this was my time (which, in itself is pretty precious these days) and hope.  For other families involved, it wasn't so easy.  One family lost their place in therapy and was put at the bottom of a two year waiting list because over and over the iPad didn't arrive.  Another mother spoke about her son crying himself to sleep after she told him the iPad was not coming.

Looking back, it's pretty obvious something was going on.  I noticed after reading the emails while I was posting them in my earlier post that there were small discrepancies (such as the number of total entrants to the giveaway).  Nothing that raised a red flag to me at that time, but live and learn I guess.  It was easy to believe because we [the families] wanted to.  I don't think I'm alone when I say that....so many of the other 39 families affected felt the same way.  We all had hope, and unfortunately it was poorly placed.  I know for me, even with all the warning signs at the end I still held out hope that what I was told was true.  It is still difficult for me to believe someone with a special needs child, someone that is walking this same road, could treat other families in the manner he did. 

I can't say exactly what happened with this whole mess.  In the many places this has been discussed, people are ranging from not believing Marissa is even Mike's child, to just that Mike got in over his head.    For me, I do believe Mike is Marissa's dad.  He's been around the blogging community for a while and has contacts with places such as Bungie, Penny Arcade, Ctrl-Alt-Del....he's very prominent in the "geek" community.  His raffles have even been mentioned on HBO.  I don't know what happened, and I don't want to speculate, but I do WANT to know.  After it was announced the iPads were "no longer there", Mike was very adamant he couldn't say anything for fear of losing his job.  Now that he has lost his job, I would think he has nothing to lose by coming forward.  Maybe he was a victim as well, I don't know.  What I do know, is that despite the circumstances - he was still the one sending the emails.  Emails that told us our software was purchased, that our iPads were being packed, that they had even been shipped (and numerous other things).  Regardless of anything else, those lies came from him directly and for that I hold him responsible.  For lying to me, and for lying to 39 other families.  In one of the last emails I received, I was told this:

"...I'll continue marissasbunny, minus fundraising, minus giveaways.  We'll find another charity to give the rest of the funds to, which is sad.  We are going to deliver the iPads to the still interested, as soon as I can, and as soon as I am allowed.  If it takes too long, regretfully, I'm going to dip into Marissa's surgery fund...."

Now, if this was the end of this story, it would be a sad story indeed.  But good often rises from the bad and hope can be restored.  They are out there....the Kens, Maureens, Darcys, Heathers, Anthonys, and Wendys.... those who have unbelievably giving hearts and do their best to help make situations right, to help make THIS situation right.  It's those people who remind me to keep faith in others and that for every bad person out there, there are a few good ones.

Come back tomorrow to learn more about some of what is being done to help the families affected by iPadgate.

Read More...

PECS Update

As you know, we have been working with Ayden on implementing PECS this summer. We successfully transitioned him to Phase III a few weeks ago and it is going fantastic.

Phase III is all about learning to associate a card with a specific object. By the end of Phase III, he should be able to identify and successfully use around 20-25 cards. We have around 20 cards setup in his book for him that he knows and uses. In addition, we have multiple cards in a pocket in his book we haven't introduced yet.

I would say Ayden is at the goal for Phase III right now. He successfully goes to his book to get cards associated with what he wants. We have favorite toys, common things he asks for (eat, drink), and specifics such as milk, water etc. He still requires prompts to use the book instead of pointing, but a simple "go to your book and tell us what you want" reminds him.

I'm so very happy we have come this far in just a couple months. A lot of his groundwork had been laid at school already, but we are now looking at starting Phase IV, which is the phase school wanted him on by the end of the school year based on his IEP. Mr Awesome and I knew he could do it, but actually starting Phase IV is an incredible feeling. Why so incredible outside of the obvious? Well, Phase IV brings us to building sentences. Yes, soon Ayden will be communicating in sentences with us. Even though it isn't with words, it's a big step, one that I'm overjoyed to be starting.

I am planning on taking the rest of July to introduce the remainder of the cards and give me some time to read through Phase IV training plus make the new cards / sentence strip that we need, then plan on beginning on August 1. That gives us an entire month before school starts to work on Phase IV.

Now if I could just get him to answer YES to questions....

Read More...

The Things No One Tells You

Please take a few minutes to read my previous post about Fragile X and comment to enter the giveaway.  I will be randomly choosing a winner on July 22, 2011 - National Fragile X Awareness Day!

I often sit back and wonder what I would have said if someone told me what my life would be like with Ayden.  How the person I was then would have reacted to the news the my 4-year-old son barely said five words.   Or that I would be sending my three-year-old son on a bus to school, praying that he would be okay.  About how we deal daily with screaming, whining, and tantrums that include hitting, flailing, and sometimes even biting.   How the hitting, flailing, and biting aren't always related to tantrums, but often to anxiety or even to extreme happiness. 

I'm not very confident in the person I was before I had children.  I'm not sure I would have handled it well, because I still struggle, especially with patience.  I always knew that being a parent required sacrifice, patience, and lots of hard work.  I watched my mother do all of these things with grace as we grew up.  I just never understood the full scope of those things until Ayden, because how can you?  Some days I feel as though I will fold under the pressure.  I think of the list we have for Ayden of what we need to work on, and I panic.  I can't even being to count the amount of times I just feel like I'm not enough, that no matter how hard we work it won't be enough for him.  I worry that someday he will look at me and tell me I should have done more and that his life could have been easier if I had just done more.

I think every parent struggles with these feelings in some way.  I reflect on all the advice I was given while pregnant with Ayden - because anyone that's been pregnant knows everyone has advice for you!  (Even that lady behind you at the grocery store you've never met before).  I wonder why no one tells you to find what balances you.  To make sure from the beginning that you find that perfect amount of time that you keep for you so you don't feel like you're only a mother, but to remind you that you are also a wife - and more importantly you are, well, you.  I struggle with the balance, all the time. As a FXS carrier, I know I need to be more mindful of this because carriers are more prone to depression. I try to take time for me, but it always seems like there is something to clean, dinner to cook, a diaper to change; however, I find myself happiest though when I do take that time.  Even if it's just taking a long shower after the kids are in bed, it's time for me to clear my head, to refresh, and to reload on the patience I will definitely need for the next day.

Read More...

PECS Phase 1

As I talked about earlier, we are really pushing PECS with Ayden this summer.  After our visit at the FX Clinic, and a nice chat with Dr Benore - we realized we were doing PECS a bit wrong.  I realized I wasn't doing it "normal" per se; however, Dr Benore explained the actual logic behind PECS and why it worked the way it did.  Mr Awesome and I quickly decided we needed a crash course in how to actually train Ayden to use PECS effectively and as a communication tool.

It was not difficult in the least to find information online about each phase/level of PECS and how to implement/train for each step as well as what needed to be accomplished (and why) before moving onto the next phase.  Ayden has a lot of the groundwork in place from the simple exchange he has been doing at school, but we decided we needed to start from scratch at home to be sure the process behind it was cemented for Ayden.  Our main goal is to have him communicating independantly and these steps insure that to happen.

Phase I:
Phase I focuses on the physical exchange.  We want Ayden by the end of this phase to pick up a picture, reach toward a communication partner, and release the picture into the partner's hand to receive a desired item.  He's doing this at school fairly effectively, so it is really a short phase for us.  The key things are to use a variety of items, no verbal prompts to get him to give us the picture, and reinforce with complete sentences what he wants after giving us the picture.  For example "You want a car!" when he gives us a picture of a car.  Phase I is completed when he is consistently exchanging a picture to receive a desired item.

We have been working Phase I for a week with Ayden now.  He really understood this after the first couple training sessions (which sound a lot more "school-like" then they actually are because he's just playing, really).  I believe we are now ready to move onto Phase II - and not even into the summer yet!  (though our temperatures really say otherwise).  Phase II is all about increasing spontaneity and we will be implementing the book in this phase as well (a place for him to keep his picture cards, build sentences etc) - so I have a bit to get ready for.

The key thing we need to keep working on with Ayden which is not specifically written into the steps of PECS, but I think is kind of "understood" (and this is part of his IEP as well) is to initiate "conversation" by getting the person's attention appropriately.  I think we will be working on tapping on the person he wants attention from, though we have not decided for sure.  Essentially, we need this queue to be either verbal, or physical so he can gain attention when someone is not looking at him.  If anyone has any ideas, I'd love to hear them!

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...

Non-Verbal Autism Research

Great article on the Autism Speaks blog about research in non-verbal children.  I think this small section of the article hits the nail on the head for me....I can't even begin to say how many times I've felt this way, especially after seeing those standardized tests put Ayden at his normal age range for cognitive skills!

An estimated 30% of individuals living with autism are functionally non-verbal, yet very little research effort was directed toward helping this group communicate their wants and needs. The inability to communicate leads caregivers and clinicians to the presumption that the cognitive skills in these individuals were low because the tests typically used to assess cognitive skill require verbal or behavioral responses that this group of individuals does not readily produce.

Go here to read the article.

Read More...