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!)

Read More

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!

Read More

Clinical Trials

Yesterday, FRAXA hosted a webinar about some of the current clinical trials for Fragile X.  The webinar covered the two main types of treatments that are in clinical trials right now - GABA-B agonists and mGluR5 antagonists.  It also covered some pretty detailed information about the clinical trials for STX209, AFQ056, and RO4917523.  What was involved, length, qualifications, etc.  Overall very interesting and informative stuff.

I'm not going to go over the information covered in the webinar, but wanted to link the power point presentation here for anyone interested.  I also want to point out that STX209 is also in clinical trials for Autism Spectrum Disorders as well as Fragile X.

These trials are very promising.  I know so many FXS families with their kids enrolled in one or the other that are having fantastic results.  It really bring a lot of hope that we soon will have medications approved that can help our kids out.  These aren't miracle drugs, but even peeling away one small layer of anxiety or problems for our kids can open up an entire new world for them (and us as parents!)

Here is a link to the webinar:  FRAXA Webinar Slides

A big thank you to the presenters and FRAXA for putting this together!!

Read More

Mother's Day Surprise

With the warm weather, comes family trips to the park.  As part of Mother's Day this year, we decided to have a picnic at the park with the family.  Normally our visits to the park are fairly short due to the fact that Ayden is just not a fan.  The park includes just a lot of things he is not fond of - differing terrains, climbing, sliding, swinging - you know, park things.  Over the past two years though, we have really been slowly working with him to try these things in the hopes that one day he would push past his sensory issues he has with them and enjoy himself.  It's a lot of patience and hard work that usually ends in whining and crying, which makes the park a mild headache for mom and dad.  

Last week, though, we heard some good news from school.  One of Ayden's paras had been working with him to get him to go down the slide at school by himself.  And she had succeeded!  Shortly after Ayden started going down the slide at home by himself.   Then we went to the park....and I'll just let this video speak for itself:

Climbing.  Sliding.  Walking on woodchips.  SMILING.

This in itself would have made my entire day.  But there was more.  This park had safety swings with backs and harnesses for the kids as well as normal swings.  I put Ayden in one of the safety swings with a lot of hassle.  We always have him try it.  He hates it, but he knows one try and then if he doesn't like it he's done.      Much to his surprise....

He LOVED it.

He love it so much he was repeatedly asking to return to the swings.  He would go slide for a while, then come and ask for the swings.  Again and again and again.  So after we ate we went back to the swings.  Mr Awesome thought we would push it a little farther and try him on the regular swings.

That smile is TWO YEARS of working with Ayden.  Two years of pushing, crying, whining.  I've waiting a long time for that smile.  And to top it off, when we said it was time to go home he told us no, but came without fussing and on the way to the van looked at me and asked for more.  I don't know if it was more park, more sliding, or more swinging that he wanted - but it didn't matter.  My little boy who usually leaves the park on sensory overload left happy and wanting more.  Easily one of the best Mother's Day presents I've ever received.

Read More

Minocycline - 1 Month Update

Well, we're a bit past the one month mark - but I've been so busy I never posted an update!

I really wish I could say this has been our little miracle for Ayden, but that just isn't the case so far.  I do think it has helped him in the month he's been on it, but it hasn't been as effective as I've heard with other FX kids.  The good things we're seeing still include him attempting to communicate more and better.  He is still pushing limits when it comes to using PECS and finding new and creative ways to tell us what he wants.  He is still playing with toys the way they were meant to be played with sometimes - though spinning continues to be one of his favorite past times.  We are also still seeing his fixation on certain toys much less.  All of these are great things for Ayden, but we were just hoping for more.

That's not to say the next month isn't going to start showing improvements again.  I know many parents that haven't seen changes for the first few months and I've been told anywhere from 2 weeks to 6 months.  We are certainly not giving up, but still being cautiously hopeful.  In the meantime, I'm very excited to see the changes we have seen in Ayden since he started on Minocycline.  Not what was expected, but fantastic changes nonetheless.  We'll keep moving forward and I'll update as we go along.

Read More

Physical Therapy

Emma started physical therapy yesterday.  I am having a hard time wrapping my head around the fact another of my kids is in therapy, but I know it is for the best.  Our PT is pretty awesome.  I really liked her from the start, and after our first session I like her even more.

We started Emma on some exercises to loosen her legs and trunk area where she is having high tone issues.  It's not terrible, but the exercises do help.  We do a few reps after each diaper change (though I may start before so we don't have so many poops in a clean diaper!)  Just the few times we did them yesterday had me noticing an improvement in her flexibility.  This morning was a definite improvement in just 24 hours.  Plus, she loves it, of course it's just play time to her!  So we continue...and hope her high tone gets better and will not be the cause of any developmental delays.

The other thing we talked about was different ways to work on tummy time and getting rid of her preference to look to the right.  Mostly we just need to encourage her to use her left side and stay off the back of her head as much as possible.  I'm sure it will work out, it's just frustrating to have yet another thing.

The PT did do a full check of her neck as well.  I was a bit concerned with her tummy time hate that maybe she was a little tight there too.  Of course my concern was for nothing.  She has full range of motion in her head/neck area and isn't tight at all.

We also talked a little yesterday about this shaking that Emma started doing as well.  I noticed it probably last weekend the first time.  When we sit her up, either supporting her or in her bumbo her head and/or hands shake.  She's completely responsive and has no change in demeanor, plus the movement is not rhythmic so it isn't a seizure; however, it is something we need to watch.  I was glad the PT saw it happen and it wasn't just me explaining it to her.  Most likely it is just her developing and using her new muscles more which is common in babies.  It has only happened when she's doing things that are difficult for her such as sitting or holding up her head/moving it around.  I'm beginning to track it though just in case and will probably get it on video as well - again just in case.  Things like this can be neurological problems like seizures or tremors, but they can also be normal. (such a wide range!)  By tracking we'll know if there is a pattern or if we see an increase in frequency or duration.  No matter what, we'll definitely be bringing it up with the pediatrician at her next visit.

Read More

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.

Read More