Update on the Family Part 3: Issac

This should be the easiest of my updates, no worries about any developmental issues!  Right now though, this little guy is my most difficult child.  He is mouthy, stubborn, strong willed, bossy, confident, and exactly a perfect mix of his mom and dad.  You know that kid your parents always tell you they can't wait that you have - Issac is mine.

The daily grind with Issac usually consists of him bossy his brother and sister around, a lot of tattling, and a lot of telling mom and dad how he thinks life should work (and pouting when it isn't the way he thinks it should be).  In with all that though, is this little boy who has an immense imagination.  He loves to draw, make up adventures, make/create new games...I listen to him and am just in awe of what he creates.  And he loves - oh does he love.  He has the biggest heart of most any child I have ever met.  Developmentally, he is like a typically almost-five-year-old.  He is more than ready for school academically and ready to start kindergarten in the fall.  Socially he will have some catching up to do once he does start, but I doubt that will hinder his learning.  He can do most of Ayden's first grade homework so if anything he be a little bored which will give him adequate time to work on social interaction.  Really though, totally typical for this age.  It will be much more of a struggle for Mom to send him to school and be without him for a full day!

This a very short update for Issac, but I didn't really want to leave him out.  It is odd having my non-fxer sandwiched between my two FX kiddos.  He teaches us how to be parents a lot (because we don't get feedback from Ayden) so in some ways he has the duties and responsibilities of our oldest child even though he is not.  I imagine the balance between those responsibilities and still being a younger brother will be something that we try to keep in check most of his life.  For now, we mostly have it though it will change and adapt as our family does.

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1st Grade IEP!

I'm sincerely blown away that we will have a first grader soon.  Seems like just yesterday we were bringing Ayden home from the hospital!!  We had our annual IEP yesterday, and this kid continues to blow me away.        I won't bore you with the details, but just a few highlights.

1)  Ayden will have increased time in general education (inclusion) next year.  He will essentially have only about one hour per day of 1:1 teacher time in the ASD room.  He will be in normal inclusion for everything his peers do with para support.  His speech and occupational therapy will be 1/2 pull out and 1/2 pull in where the therapists are in the gen ed room with him.  We also found out his teacher for next year.

2)  Ayden will be taking all grade-level assessments with his peers next year with slight modifications as he cannot write or speak.  While this was not written into his IEP for kindergarten, the school decided to do it anyway. We have an understanding with this team that at all possible times we want Ayden to be treated the same as typical peers - so this was one thing they added over the course of the year.

3) I posted on facebook how this was my fourth IEP but the first one I had not stressed or worried about.  I wholeheartedly credit this to his team.  They have been amazing about follow-through, communication, and pushing Ayden all the time.  Each person is invested in him as an individual and not just "one of many" of their students.  I believe our successes we've seen this year are partially due to them, partially to us, partially to Ayden, and partially to the addition of arbaclofen (stx 209) in October.   I can't look at this past year and not give credit to each of those things as they all played an equally important role.  I need to point all that out before I come to my final point...

4)  With all the success and development we've seen this year, plus the addition of normal kindergarten assessments we can truly get a picture of where Ayden is at.  We received the scores for all his assessments at the IEP.  They were...amazing.  In all areas of testing Ayden scored at or above what his typical peers do. Outside the fact he cannot write - Ayden will be entering first grade on par with his peers academically.

What a beautiful highlight to end our year on.

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STX 209 - Update 4

On Friday we will make our final trip to Chicago for the double-blind portion of the STX 209 trial.  In the time since I posted my last update, things went from mildly frustrating to pulling out my hair frustrating.  The whole thing culminated last Friday with me taking time to go into school and observe Ayden to see if we could brainstorm some ideas as to how to deal with everything.  (bear with me while I try to organize what led up to this)

Over the maintenance portion of the trial we slowly saw all the good things we had been seeing with Ayden all but disappear.  We had seen gains in focus, socialization, anxiety, speech, less stim behaviors, and small things like starting to use toys correctly.  When we went to our last appointment and looked back to the differences - we saw drastic decreases in every single area that had made gains.  I want to reiterate that these decreases were seen during the maintenance phase.

I briefly mentioned the aggression issues we started seeing in the maintenance portion of the trial as well. While the issues were minor things such as hitting himself, throwing himself on the ground, or slamming his head into a wall (which sounds worse than it is); every so often we would see a hitting incident occur towards another individual.  We've dealt with hitting before...but it was different.  Ayden used to hit Issac when he was younger.  I think the worst of hit was around 3.5-4 years old where he would actually stop doing an activity to walk over and hit his brother. He would also swat at me on and off, but these incidents were isolated to times where he was already hyper-aroused and I was attempting to help him.  Those types of things involve bear hugs, deep pressure and just generally actions that require me to be right in his personal space.   The thing about those prior instances is they were always toward an immediate family member and we had not seen them for quite some time. I want to give background on this, because while on the maintenance portion we not only saw the emergence of hitting as I described above, but also had an incident at school where he actually hit his para-educator.

So now we are on the next portion of the trial, titrating down from the medication (or placebo).  We started this process almost two weeks ago and since then, behaviorally, Ayden has almost been unbearable.  Just a few days in to the new packs we noticed a decrease in aggression.  While it was less in number though, it was worse in degree when it did happen.  As the first pack progressed, we have seen Ayden not just losing the abilities he achieved over the course of the trial, but also a regression of some behaviors back to things we haven't seen in a year or two.  Re-emergence of stim behaviors and anxiety especially are bad.  Those two things lead to a lot less socialization as well.  As one can imagine, these affects are seen the worst at school.  He's having a difficult time focusing ,so work is harder which is making more anxiety.  He's being made to do things that are difficult which also means more anxiety.  Then frustration is piling on top of that - I imagine because he is unable to do things he could do just weeks ago.  All these things just lead to one very sad, anxious, over-extended little boy.

As I mentioned above, I went in Friday to observe Ayden during school.  I was only there for an hour, but it was much worse than I expected.  He basically spent the entire time staring at moving objects hanging from the ceiling (this was during calendar/weather time).  As he moved into group work, he refused to do things every time it was requested of him.  He would walk around, stare at the ceiling...basically anything to not do what he was told.  When he was forced to by hand over hand...he started clearing materials from the desk and attempting to throw them as well.  I left after about an hour.  I had gone to observe what they were seeing and give some ideas as to how we could help, which I easily had in the time I was there.  It was utterly heartbreaking to watch though.

I was home for about an hour when I received a call from school.  After I left he had hit his para-educator.  Our school district has a very strict policy on hitting.  The child is taken to a time-away room and a timer is set.  After the timer buzzes, the child is then given a puzzle (or other similar activity) to complete to show they are ready to return to the classroom.  When I received the call, he had gone through 4 timers already ending in throwing the timer, throwing the puzzle, throwing himself on the ground...you get the idea.  As I was on the phone with his teacher, he finally complied with the puzzle and was returned to the classroom at which point he cleared the gen ed teachers desk and then attempted to hit another child. (which THANKFULLY was blocked by the para-educator).

After all this, I put in a call to the study coordinator.  I wanted to be sure they were aware what was happening.  I didn't expect him to get worse while going off the medication.  We were not told what to expect during the process, which I can only assume is because they want an accurate portrayal from us and not a skewed one by them saying "you may see this".  I was very glad I did make that call though.  All these things that we are seeing are very typical when kids are taken off the (actual) medication.  Especially kids that have been on too high of a dosage.  (You may remember, we are fairly certain that Ayden was on too high a dose).  It was a relief to hear this was typical, and even moreso to learn that we were probably at the worst of it and should expect the craziness to level out the closer we get to being totally off the medication.

We've had two more days of dosing in since Friday - and have watched Ayden very closely over the weekend.  Both Mr Awesome and I feel his focus and anxiety was better than it was the previous week.  I am very hopeful this will carry over into school today and we won't have a repeat of Friday.

Our next appointment is this coming Friday at which point we will be enrolling in the open label extension.  I want to just end this post by saying that the past few weeks have been difficult, but the small amount of time we saw where we believe Ayden was on a good dosage gives me so much hope for what this will do for him long term.  I do not regret being in this trial even for one second despite what we are going through right now.  It is a short amount of time in the grand scheme of things.   I imagine the next post about STX 209 will be much happier as we will officially and knowingly be on the actual medication.

More to come...

Edit:  I forgot to add this little bit...we've also been seeing some sleep issues since starting the titrating down.  Ayden will wake 1-2 times per night, but does return to sleep himself.  He also fell asleep in school - which is utterly unlike him.  I believe the night wakings were also something I noticed while we were building up to the maintenance dosage as well.  Not terribly important, but good for others who may be considering the trial.

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Back At It!

Holidays from school are such a bittersweet time for me.  I adore having more time with Ayden.  I still feel a little like I was robbed of time with him by sending him to school so early.  I mean, the main point of being a stay-at-home mom is to spend time with my kids.  I know sending him was the right decision, doesn't change the fact I miss him though.   So..holidays.  I love them because of that extra time with Ayden, but hate them because it also puts him into such a funk to have his schedule that rearranged.  Not just during the holidays, but also when he goes back.  It wasn't a fight to get him out the door, but he wasn't excited to go until he saw the bus.  Of course we had to add to the confusion by the bus driver coming late AND in a different bus then he had to walk in the snow (heaven forbid!) AND he had to change his seat (that he picked and has sat in since he was 3!) because the reason for the new bus and being late was because of a new student who is in a wheel chair who obviously needs the handicapped seat.  He did roll with the changes though, despite the fact he was not prepared for any of them except heading to school.  I did make sure I started preparing him on Friday for that one.  (sometimes, I am on the ball - I swear it!)

So, we are back at it.  Daily routines, school, homework...and all the while being weaned off STX209 (if he is actually on it and not a placebo, though that isn't really a question in my mind).

Speaking of the weaning off...the hitting and aggression we were seeing has slowed down.  It's not gone yet, but we're only one week into the weaning kit.  That we're seeing it reduced is wonderful and completely what was expected.

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Twenty Acts - Making Sense of a Tragedy

I've lived through so many horrible, senseless tragedies, but none that have just shattered me as this most recent one.  I found myself glued to the computer and updates as the story unfolded.  I read the first report of an entire kindergarten classroom unaccounted for and the tears began.  Little kids, the same age as Ayden...and by all account more than likely not survivors.  By now, we know this to be true.  That twenty little kindergartens and first graders left for school that morning and never returned home.  I struggle to make sense of this, to comprehend how anyone would be able to enter into a place - especially an elementary school - and look at little angels such as my Ayden and shoot them.

And this is how we as people cope.  We find a way to relate these things to our own lives so we can better understand them and then deal with them in our own way.  For some, it's by speaking out for things that we think caused this to happen.  Debates such as gun control and prayer in school are littered across the news and internet.  Individuals who feel they can "fix" this by taking away guns or giving guns to teachers.  Those who feel that prayer not being allowed in school could change things.  I understand the need to do something, but this is not the way.    To those focusing on these topics, I hope you open your eyes.  I hope you continue to read what I have to say.

Mental health.  People that do things like this have some kind of problem.   The media can speculate on what that exact problem is all they want, but no matter the name or diagnosis given - it does not change the fact that something is not right with them and there should be help before it gets to this point.  How many lives will be taken before this becomes a priority?  How many people will have to do something drastic to cry out for help?  How much longer can we [as a country] ignore this issue?  In a country where 1 in 10 people over the age of 12 are on some sort of antidepressant  what is being done?  I can't answer any of those questions...but I do know it is a problem and does need to be addressed.

Entitlement.  America is just not a group of peoples that promotes caring and love for others anymore - we instead promotes greed and a "me, me, me" attitude.  One where a majority of people think they are entitled to, well, everything without doing anything to get it.  Hard work, sacrifice, and giving to/helping our fellow man are just not the way of this country and to me THIS is where the change needs to begin.   With you, with me, with the countless others who are afraid, upset, and just flat out angry and these tragedies that continue to happen more and more frequently.

And then there is this:

Fifteen days left until 2013.
Twenty little beautiful children to honor.

Our first act begins today... We made a donation to one of the Sandy Hook victims.

Noah was one of the twenty children who didn't survive the Sandy Hook shootings.  He turned 6 years old on November 20, with his twin sister Arielle - who was in  another classroom and survived.  This is Noah's Aunt on twitter.

For others who may be interested....the link to donate to Noah's funeral is here.

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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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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.

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Kindergarten Week 1

We have officially completed our first week of kindergarten.  Successfully.  Happily.  No tears.

In case you're wondering, Ayden did pretty well too.  :)

If it wasn't quite obvious from my post about orientation, I was pretty impressed with our ASD room teacher.  I don't know her background, but she seemed to care about the kids she has a lot from our initial visit.

Our first week impressed me even more.

The communication pages she sends home each day that she calls a work in progress are amazing.  I know more about what Ayden did this week specifically speaking than I know about what he did in an entire year at preschool.  We had generalized notes from preschool, and often a teacher who didn't answer emails.  Preschool did wonders for Ayden and we really loved it there - but this is so. much. better.  To top off my week, I spent about a half hour on the phone discussing something that was sent home on the communication sheet.  Basically I just wanted to make sure a small problem was being handled right for Ayden.  Not only was it handled how I was hoping, but she then went on to explain how she made a small change in Ayden's daily routine that she thought would work better.  Which it did.  That minor change led him to work with minimal prompts at independent work stations by the third day of school.....and totally independently by the fourth day.

In gen ed, he's been working well in circle time and small groups.  He's also been playing with the other kids at recess. I haven't spoken with his gen ed teacher, but his daily reports are exactly what I'd expect - listening, doing what he's told, and transitioning between different times with prompts.

Our biggest concern to start out the year was how the cafeteria would work for Ayden.  We are absolutely insistent that Ayden be included and doing as much the same as his peers as possible.  We have always worked very hard with him to minimize his anxiety, but know that large groups with loud noises are triggers for him.  While we don't avoid those situations per se, we do give Ayden a lot of leeway when we put him in those situations.  We assumed it'd be hard on him for the first few days, but apparently that concern was for nothing.  He has been eating with the other kindergartners and doing just fine.  I guess Ayden decided he was going to be all grown up on us.  :)

So, that's the week in summary.  It really was fantastic to see him transition to full days and just do so well the first week.  I have a couple things we have to get set still now that his teachers are in the swing of things.  Hopefully getting his speech therapy going will be as smooth as the beginning of kindergarten was.  If not, mommy bear may have to start roaring. We'll all hope for the best though, I haven't been disappointed with his new school yet.

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Kindergarten Orientation

One step closer to kindergarten... you'd think after sending Ayden to preschool for two years I'd be ready for this.  It's different though.  At least it feels different.  I'm not really ready for it, but since when does that matter, right?

Today we had the chance to see Ayden's classrooms and meet his new teachers.  Yup..those are plural.  If you remember from my IEP posts earlier this year - Ayden is enrolled 1/2 time in a general education classroom and 1/2 time in an ASD room.  So, he has two teachers, two classrooms.

Gen Ed:
Ayden's gen-ed room is by all means your typical kindergarten room.  His schedule is setup so a good amount of his time in gen-ed will be in reading groups - where writing and math will be in the ASD room.  He will attend all specials, recess, and lunch time with this group as well.  His teacher will be a permanent sub until November.  I found this out at the end of school last year and I can't lie when I say it rubbed me the wrong way.  Putting my child who has issues with transitions and trust into a class where they are already aware the teacher will not be returning until November seems...I dunno....unwise?  Certainly not ideal.  I came to the conclusion then though that we'd try it.  It's a new school and I need to trust they have Ayden's best interests in mind and something made them choose this room and situation for him.  I have no reason to doubt anyone there, and hopefully will not.  So, we met the teacher today who will be with him until November.  She's nice, kind, and Ayden had no adverse reactions to her (or the room for that matter).   He said hi to her, shook her hand, and said thank you and good bye when we left with minimal prompting.  It was pretty amazing for him.  His teacher made the comment to me that she had been researching Fragile X on the internet.   I'd say it was the highlight of our visit...but there were totally better things coming.

ASD Room:
Ayden's school just added the ASD room this year.  New teacher, new room, new program.  Only a few things to be nervous about, right?!  We received our welcome letter in the mail last week...while I don't have it on me for the exact wording the first paragraph went something like this  "Your child will receive a communication notebook that will be sent home every day to keep parents up to date on what is happening at school and school up to date with what is happening at home."   The rest of the letter continued in this fashion...so I was expecting I would like her a lot.  I wasn't disappointed.

I'm just going to cover highlights here..because there are a lot of amazing things that are so good for Ayden.  1)  The school got special permission to paint the room blue.  To make it more calming and welcoming.  It's ...wow.  I love it.
2)  While the room wasn't all the way completed, there were visual schedules and PECS cards right inside the door for each child.  There's only five kids so they were all in different colors.
3)  They are integrating sensory needs of the kids into the actual room.  For example:  they have these chairs among other things.  Very cool.
4)  Probably my favorite "perk".  Connected to the classroom is an entire sensory room.  Swing, trampoline, spinning stuff, ball pit, tubes, exercise balls - you name it.  As part of the classroom schedule, the kids are given sensory breaks above and beyond any occupational therapy they have. My jaw may have hit the ground when I saw it.
5)  His teacher is awesome.  One of the first things she said to us was how she insisted that none of the kids were pulled out of the gen ed room for therapy etc.  From the look in her eyes when she was saying it, I think it was a bit of a fight for her to get it that way.  I know that wasn't the plan when our IEP happened!  She also had been researching Fragile X and seems very much on the same page as we are about what we expect from Ayden.

That's just a piece of what we saw today.  I knew we were making the right decision for Ayden moving him into kindergarten, but still had my reservations and I certainly still was second guessing myself.  I left today and any reservation I had was gone.  Ayden is ready for this, and our team this year, well, color me impressed.   It's going to be a good year for him, I can feel it.

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Last Day of School 2012

As I sat down to write this post out, I remembered that I wrote a nice letter to Ayden at the beginning of this school year.  So it is only fitting to end the school year the same way.

Dear Ayden:

Today was not just your last day of school this year, but your last day of preschool in the Early Childhood Special Education (ECSE) program.  At the beginning of the year I was wondering how you would manage without a nap in the afternoon and with a more demanding classroom experiences.  Now I'm finding myself amazed yet again at how far you've come over this past year.  Putting you on the bus the first day of school was fairly easy, but you still needed the support of holding my hand.  Today, I stood at the door and watched as you turned around and waved good-bye to me and ran yourself down to the bus.  You didn't stop when the sidewalk turned into the paved road, you didn't even hesitate.  I followed behind you and by the time I made it to the bus you had already sat down, backpack off, and ready to be on your way.  I was so happy to see your independence at the beginning of the year, but couldn't have imagined it would be so much more just 9 months later.

This year brought so many changes for you, certainly for the better.  Your social skills and communication have skyrocketed since school started.  You are now eating with silverware and will sit down and color with your brother even!  Such small things in the grand scheme of life, but these are huge steps for you!

Next year is going to bring even more changes for you.  You'll be starting kindergarten at a new school, and going all day!  I can't imagine entire days without you, but know you will once again thrive and continue to amaze me.  The one thing that won't change is how proud of you I am.  

I am just overjoyed at how much you have grown this year, and especially since beginning in the ECSE program.  It certainly is bittersweet leaving behind the amazing team and school you've been with since you were 3 years old, but I am comforted by the fact I know we made the best decision for you and excited to see what the summer will bring!

Always,
Momma

First Day of Preschool -  September 2010

Last Day of School - June 2011

First and Last Day of School - 2011/2012

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We Have a Kindergartner!

I know I've said this before, but I can't say enough times how lucky we are to have the team we do for Ayden. I look at where he was two years ago entering the ECSE program and am just so happy with how far he has come.  It is bittersweet to have attended our final IEP with them today, our transition IEP.  Next year, Ayden will be moving to a different school, different speech therapist, and different teacher. All kinds of changes for him as he enters kindergarten.

While we don't know who his teacher is yet for either the ASD classroom or general education classroom - we are certain it will be a good fit for him.  (We should know within the next few weeks who both teachers are.)  We received most of the services we asked for without any fights and while we did have a little bit of push back on a couple of goals; in the end we did find an acceptable middle ground.  We expect a lot more from Ayden then others do, and that is where the problem occurred.  I'm pretty sure a few of the goals they had he will have reached before the summer is out.  It wasn't bad - we just knew he could do better!

Over all we are very happy with what next year looks like.  We met a good amount of the new team today and there isn't a single person that even at first impression rubs me the wrong way.  I hope it continues in this fashion as we start the school year!  It's going to be a lot for Ayden at first:  all day, new school, and lots of new experiences, but I really believe he'll settle in well.

One thing that we didn't know going in and was discussed at the IEP is our district is doing a pilot program to see if ECSE students would benefit from extended school year and they have asked Ayden to be in it.  The program is going to be setup to run 2.5 hours, 3 days per week for about 4 weeks.  It's essentially going to be very intensive speech and language therapy, all 1-on-1.  It's going to be a phenomenal opportunity for Ayden.  It fit right into our schedule for the summer too.  We are very excited, to say the least.

Over all - a very good meeting.  (I'm really glad it's another year until the next one though!)

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Therapy Wins

We had our bi-weekly physical therapy appointment for Emma yesterday.  It's pretty awesome to hear at the end that she is doing fantastic.  As of 3.5 months, she is still meeting or exceeding all of her developmental milestones.  It's also a big relief.

Each appointment we've had has brought with it a new problem or issue to work on and we've just taken each thing in stride.  But now she's rolling over (tummy to back), enjoying tummy time, smiling, cooing, and just all around doing amazing.  Our PT went over each thing she should have accomplished by 3-4 months - and she's done them all.  She's actually even mastered quite a few of the milestones in the 4-5 month category.  We still have things to work on such as the high tone in her trunk/legs and the fact she extends quite a bit, but these are minor issues and are correcting themselves as we work with her and she grows.

I honestly am so glad we were assigned an amazing physical therapist for Emma.  I can't even begin to explain how much better everything feels when you have people working with your kids that truly care and just go over and above for you.  Ayden's occupational therapist was one of those people, and Emma's PT is one as well.

On another note...we'll be attending Ayden's IEP tomorrow so look for an update regarding him soon!

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IEP Season

Most people get into April and May and think about how the school year is coming to a close.  For those of us with special needs kids, it's a little different.  It is the time of IEPs and  setting goals for our kids for what we would like to see them accomplish in the next year.

This year is an important year for us.  We have the big decision coming up for Kindergarten.  Ayden is on the cusp really where we can easily hold him in ECSE a year or move him to kindergarten if we choose.  We had planned for some time to keep him in he ECSE classroom if he wasn't talking yet, but life tends to throw you curve balls so here we are more than likely moving him forward into kindergarten.   Here are the things we have to consider.

1)  Ayden is entirely non-verbal.  He has about 5 words, but doesn't use them spontaneously.   He is just beginning to use "mommy" to get my attention, but other than that it really is forcing verbal interactions from him.   He is effective at using PECS in our home, but as far as school goes it isn't as successful.  I'm unsure whether they just aren't pushing as much or if he just is following his normal pattern of difference at school. Either way, he almost certainly will need an aide to communicate.   This in itself is the reason we initially had made the decision to delay entering kindergarten.  We wanted to give him that extra year to get more speech down and possibly be able to enter kindergarten without an aide - essentially giving him as normal of an environment as possible.  While we still would love for this to happen, I think it is naive of us to think even if he starts speaking in the next year that he would not need some help.  I doubt he will just start talking in full sentences.

2)  Ayden has made huge gains socially this year.  He plays with other kids now, interacts, and even attempts to communicate.   We've known for a while that Ayden does much better peer modeling with children that are older as well.  This puts us in a unique position where moving him to kindergarten would keep him with the same kids, keep him as one of the younger kids in his class, and potentially help him continue the social development he has progressed to this school year (which according to the ASD coordinator is mostly on par for his age).  By holding him in the ECSE classroom, we could lose that.   I have no doubt he would make new friends easily as well, but most of his class will be moving up and keeping him with kids that are familiar with him is also a huge bonus.

3)  Our school district has moved to an all day kindergarten program.  This is actually fantastic for Ayden. His current team at school is recommending that we move him to 1/2 day ASD (autism spectrum disorder) classroom and 1/2 day general education kindergarten room.   We also have the option of putting him an all day general education room with para support.  Either way, we can have him in therapies (speech, occupational, physical).  There are downsides to both of these options - and unfortunately the choice we make will also decide which school he will be attending because the ASD classroom is only available for him at one school.

There are a lot of decisions within these three listed and other small things that are all going to impact our decision, but these are the large ones.  Thankfully, I have some great resources that come in the form of other amazing FXS parents via our Fragile X Facebook group giving me advice and ideas.  I probably don't mention this enough, but I'm very thankful for each and every person in that group.  We have about a month until our decision needs to be made for sure and an IEP setup - so we'll see where that takes us.

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