Feeling Frustrated

It isn't often I put down frustrations on here - but I'm feeling a bit overwhelmed with them right now.  Back in the update for Emmalina, I posted about how we were having an OT out to evaluate her sensory issues.  I sat with the OT who basically did a sensory evaluation by asking me questions and very little observation (NO interaction) with Emma.  At the end, she told me Emma is a sensory seeker but seemed to be self-regulating so her issue were not affecting her everyday life.  She did not recommend any therapy to help.  It was mostly what I expected to hear so didn't think much farther on the issue and began the process of attempting to remove her from EarlyOn.

A few weeks later, Mr Awesome and I were discussing removing Emma's pacifier.  She's pretty attached to it, but not in a normal kid kind of way.  I feel like it is oral sensory for her which concerned me to just cold-turkey pull it without a replacement.  We did that with Ayden before we understood and even to this day have problems with him chewing on his clothes, hands, blankets etc.  It took almost two years to successfully direct him to a chewy tube and even now we have to remind him.  I do not want this to happen with Emma, thus the email to the amazing FX SLP/OT duo Mouse and Tracy.  I explained about sensory issues, her OT eval and what I was told then what we wanted to do.  Surprisingly to me, their response was essentially that the OT that evaluated Emma had been incorrect.  That a two year old cannot self regulate (even typically developing) and that pulling Emma's binky without a sensory diet in place to "replace" that oral sensory seeking would be exactly what we had happen with Ayden.

Thus my frustration.  I trust Mouse and Tracy without a doubt and they certainly helped as much as they could over email. So our options are then to push EarlyOn to provide OT for Emma or to do it ourselves.  We looked into private OT with Ayden and it just is not an option for us.  Lack of providers in this area, high prices, and no insurance coverage.  Even if we could combat that - there is an 8-9 month wait to even be evaluated.  The OT that evaluated Emma is the only one in our country for EarlyOn which means if I push service I will have an OT who doesn't think she actually needs it and will undoubtably not be very helpful.  

I decided that maybe it would be smart to get Emma an appointment at the FX clinic.  I was hoping that we could piggy-back her onto Ayden's upcoming appointment in May since we go to Chicago - but upon contacting them they just can't fit both in.  Our earliest date for her to be seen is in August.  This was not unexpected nor am I mad at the clinic (they are amazing), but is still just another thing.

Through all of this, we are also running into problems getting Emma OUT of EarlyOn.  They aren't helping us at all, so no need to be in it.  Yet they keep making excuses when I try to take her out.  We should finally have all the needed information soon and then hopefully that will be the end of it.

So, we are left with figuring it out ourselves.  It isn't all bad, but it is going to be trial and error and we will undoubtably make mistakes along the way.  My consolation in all this is that the sensory issues aren't that bad.  They aren't affecting her life much right now, and maybe won't ever.  I'm just so frustrated with the way this is working out.

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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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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.

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Occupational Therapy Eval

We had yet another occupational therapy evaluations last night for Ayden.  We've been on the waiting list for quite a while for this appointment so it was nice to finally get it taken care of.

Evaluations have never been easy for me.  For those that haven't been through one of these wonderful things, it usually involves sitting around a table asking your child to do simple tasks that tell the evaluator what skills he or she has.  They are looking for the "age" at which the child is testing, so they will start with easy tasks and keep adding more difficult tasks until the correct age is found.  I usually leave these evaluations feeling sick and very disheartened.  It's difficult when your child has delays and you are forced to see exactly how far behind they are written down in hard copy.  For example, at Ayden's FX Clinic visit last year he had an OT evaluation done and in one area was functioning at a 28 month (~2.5 years) level - Ayden was almost 4 at the time.  Words like  "some problems" and "definite dysfunction" litter the pages of the results.  It's not easy, but it's the way things are.  You have to have a point to start work.  You need a delay to get service.  I understand all this, but it still breaks my heart each and every time.

Last night though, was much better.  Instead of walking us to a room with a little table and chairs, we were escorted to a sensory room where the floor was covered in pads.  With a swing.  And trampoline.  And tons of therapy balls.  In fact, this room was off to the side of a larger room that was stacked (quite literally) with all kinds of sensory and physical therapy activities.  The first thing the OT did was put him in a swing, then she started doing those activities I talked about above.  The entire evaluation was littered with deep pressure activities to help calm him down and check his physical development as well.  And Ayden?  Instead of breaking down into a sobbing, screaming, mess by the end because he'd been pushed so much - well, he was running around, laughing, and playing.  Did I mention this evaluation took place over Ayden's normal dinner time?  And that it's currently Spring Break here so his schedule was already a bit messed up?  To put it mildly...Ayden did amazing.  Most of that because of the OT performing the evaluation.

The best part though for me came at the end.  I normally don't even address Fragile X right away with therapists because I get blank stares or those "I am pretending I know what you're talking about " nods.  (I of course bring it up later with hand out materials included).  This OT though..she knew.  Not only had she heard about FX and had a basic understanding of it - but she has actually worked with FX kiddos before.  I about fell over.  Great with Ayden, good at her job (she actually read though the chart ahead of time and did not re-ask the questions we filled out), AND worked with Fragile X before.    I haven't been this excited about a person that was working with Ayden since our Early On occupational therapist.  I'm very excited for things to come.

As for the evaluation itself.  Ayden has picked up a decent amount of skills in the past year and his fine motor is progressing (certainly his worst area outside not talking).   Mr Awesome and I are both very pleased with the progress.

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One Year

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

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

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

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

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

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

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

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

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Oh, how far he's come!

I finally got the pictures off my camera from our visit to Grandad and Nana's house back in August.  I was more than happy about how they turned out, as I really captured so many of the things that mean so much for me to see.  It's amazing to me exactly how far Ayden really has come even just looking back at these pictures.  From actually playing, to running around in the grass, to picking up and holding a tennis ball, petting a dog, and even standing patiently while watching the car cruise with the family.  You'll notice how none of these pictures include tears or sadness, and it's important (at least for me) to note those pictures weren't left out or not taken - this was Ayden pure and simple.  Happy.  Excited.  Enjoying summer.

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Annual Visit to Nana & Grandad's House

As I mentioned last week, we had a very good time visiting my parent's house with the boys a few weeks back.  I know changing locations and not having Daddy around is always difficult on Ayden, but he really did very well.  We had a couple of very exciting things that really may be a highlight for me when thinking about Ayden and his progress this summer.

First,we attended our hometown summer fest.  To say this is sensory overload for Ayden may be a small understatement.  Loud music, lots of people, high noise levels....it's one of those types of things we usually avoid with Ayden because often times it ends in a lot of screaming and meltdowns!  We decided to try it this year though.  I know, I know...you other FX moms are cringing right now knowing what this usually leads to.  We had a decent location since my parents are directly across the street from downtown, so it was easy to just leave if it got to be too much.   We did our "trial run" before the BIG show on Saturday with the waterball tournament.  Waterball is kind of like tug of war, but you have a ball on a string that you shoot with a fire hose to get to the other team's "goal".  It's a lot of spraying water...and since both the kids love that I figured it'd be a good mix even wth the crowds and noise.   I was not disappointed!  Ayden did FANTASTIC walking over just holding my hand and enjoying the water/spray in-spite of the large crowd and dogs around us.  The best part of the whole thing was he came up to me and told me he was all done!  He signed all done, then asked to be picked up.  We pushed him a bit after that so little brother could look at race cars and the train on the way home, which did cause some screaming, but overall it was a big WOW for us and such a huge improvement for Ayden.  Saturday went much the same while we walked the car show, except Ayden sat on daddy's shoulders and just relaxed and had a good time.  I was so happy and proud of him!!

Second, I should explain with this next one that Ayden has some severe texture issues.  By severe texture issues, I mean he has a difficult time even walking down a sidewalk that changes from cement to brick.  Walking on grass has not even been an option until just recently, and even then it's with a specific purpose like "I'm getting my toy".  He also has issues with things he touches, such as tennis balls, play-doh, etc.  Anything different really.  We have to work a long time to get him touching other objects that don't fall into his normal everyday textures.   The other thing he's had a problem with is dogs.  He had a dog scare him when he was about 18 months old and since then it's like been a lot of meltdowns for him to even see a dog.  This has slowly been improving thanks to a couple dogs, namely my parents and our friend's dog who are both very well trained and great with the kids.  So, how is this all relevant?  Ayden, multiple times over the time we were at my parent's house went outside, on the grass, and was throwing a tennis ball around to their dog which he then chased around.  And he was smiling.  And having FUN.  Without being prompted.  It seems like such a simple thing, but it is HUGE with Ayden.  Just one of those things would be a big step for him, but all together....it was amazing to watch.  He even picked up the tennis ball when it was slobbery.

He just did so well the entire time we were there.  I love that we are finding that balance for him and being able to go out and for him to enjoy himself.  Watching him be anxious and scared of things most kids enjoy has always been so difficult on us, but now we're enjoying each second that he improves.

I do have some fantastic pictures to share, and will post them later on.  I haven't even had a chance to pull them off my camera we've just been so busy.

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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.

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Clinic Visit - Day 2

...and onto day two!

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

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

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

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

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

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

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

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

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

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

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

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Chewy

It's spring break week here for Ayden...which means our normal schedule is changed and causes a bit of anxiety for both kids.  Overall, it's not too bad though.  Yesterday morning was A LOT of screaming.  Issac was not okay sharing his 'mommy time' with Ayden, so every time Ayden came near mom, Issac would scream.  Ayden basically whined the entire morning after birds was taken away. 

What is birds?  Angry Birds.  (known as "BIRDS" around our home).  Let me just take a tangent here for a minute and talk about this little game and it's impact on our house lately.  Mr Awesome and I both have Android phones, and both have Angry Birds on our phones.  We would play while the kids were watching a movie, or while sitting waiting for something.  It caught Ayden's attention and we started to teach him how to play.  While it was great that he was playing a game he loved (that helps SO SO much with coordination) - Ayden's hands are not clean...EVER.  He chews on them or his clothes, or toys..and it is wet.  You can imagine putting wet hands all over a touch-screen phone is just..well, gross...so playing on our nice, expensive phones was just not a good option.  Enter the ipod touch.  I have an ipod touch from when they first came out.  First generation, no external speaker, unable to upgrade to iOS 4.0 - so essentially worthless in the apps department.  As for music, well, my phone actually has more room for storage, so the ipod has been sitting around lonely and unused. 

I decided to put Birds on it for Ayden to play.  We confined him to sitting while he was playing it and it worked out nicely.  Except it is the only thing he wants to do all.the.time.  Ayden often has to 'saturate' on toys that he likes before he will put them down.  The first time we actually paid attention to this was when he attached to a toy that our OT brought.  After basically doing nothing but playing with a shape sorter for three sessions which all ended in a mess of tears, we decided to pick him up one for home.  It took three months for him to get to the point where he would put that toy down.  (yes, you read that correctly, MONTHS).  We are working on the saturation phase with birds for Ayden currently...so most of the time saying no or taking birds away ends in whining or tears (or screaming, hitting, or tantrums if we are very unlucky).

Back to yesterday...I turned around to see Ayden with an entirely black face chewing on my ipod.  While I'm okay with him playing with it...chewing on it (even though it's in a hard case) is just not okay.  He's 'mouthed' it before...but never chewed on it like he was.  Maybe gnawing is a better word...  The black on his face was pieces of the leather from the case (it's a hard case, with fake leather covering it).  While he chews on things, this was a bit over the top even for him.  I took it away, and that seemed to be the end of it.  Our afternoon was birds-free and went much better than the morning.

So..today turned out to be a repeat of yesterday's chewing incident.  I am not sure why he is chewing on things like that.  It's not new for him to chew on toys or objects, but the extent to which he is chewing on them is.  This morning I replaced birds with his 'Chewy'.  Ayden's Chewy is basically a hand-shaped teether.  I was calling it his "hand" but didn't want to confuse him since I don't want him chewing on his actual hand...so Chewy it is.  He sat on the couch for about an hour gnawing on Chewy.  I mean, I could hear him chewing on it.

So, I'm not sure if the extreme chewing is a result of anxiety over his schedule changing (or something else), if he is teething, or if maybe it is something entirely different.  I'll be making a trip to the store to restock gum for him and hopefully this won't last too long.  I feel like we've been through a phase like this before, and feel like it was also last spring.  Admittedly, neither Mr Awesome nor I can remember - I can only place it to between October 2009 and July 2010 because I know or OT helped out with it last time. (which is a large window).  If it is the spring, maybe it's aggravated by allergies or something.  I'll have to keep track of when it is worse/better so maybe we can avoid it next time around.  (Also will need to make a note to ask about it at the clinic next month too!)

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Our Park Visit - Success!

Today, was a great day.

We took our first trip to the park today with the boys. It's always difficult for us going to the park because Ayden primarily hates it, and Issac loves it. At the very least, it's a two-parent job.

Last year, our first trip was in April. Ayden spent the ENTIRE time screaming. He didn't want to swing, he didn't want to slide, he basically didn't want to even go near the playground equipment. Of course, his low-tone little legs definitly don't help anything (what fun is a playground when you can't CLIMB). Nor the fact that the playground isn't on cement. Ayden doesn't even step on grass really with shoes, so of course wood chips are just a big NO for his little sensory issues. And let's not even start on walking with his balance issues and turned-in feet! Overall, sometimes it's just easier to skip it even when little brother enjoys it so much.

This year, was a lot better. Ayden has gained a lot of independance in a year, and immediatly wanted to go to the water next to the playground. He had spotted a duck and was all "BIRD BIRD" - very cute! So, daddy went with big brother while little brother and I went to the slides! Issac did amazing on the slides - climbed up and went down by himself. At the end, he got his hands dirty (Issac is not a fan of dirty hands) so I taught him to wipe his hands on his shirt and say "icky". Ayden and Daddy joined us, and Ayden went up on the playground equiptment with no prompting or assistance!! He ran around a lot, even on the 'wobbly bridge' and actually started to have some fun. He tried the slide, but certainly wasn't fond of it. Either way, exploring on his own, trying new things, dancing around, and laughing were just a couple of BIG WINS for this mommy. You'd think I would have left after that, let's not push it, right?

Well, we headed to the part of the playground with baby swings for Issac since he loved the swings so much last year. Ayden started screaming immediatly upon being led away from the playground by the water. He continued screaming the entire way there, and even once we got there. Daddy got him to calm down and have a little more fun playing though - including going headfirst down the tube slide so Ayden could hold his hand while he went down.

We tried to get him in the swings, but again - much screaming ensued! Daddy had the amazing idea to just put Ayden on his lap and swing. OH MY GOODNESS. My little man LIT UP the park with his giggle and squeals of delight. He had so much fun, it was like a different kid. I was so proud of him, but it was what happened right before we left that just melted my heart....

I was pushing Issac on the swings while Ayden was on the swings wth Daddy. When they were done, Ayden came over and wanted to push the swing. He has no concept of moving objects and that they can ya know, hit him in the face...so I helped him learn how to get out of the way and push his brother. He did so well, and they both had so much fun. It's one of the sweetest big-brother things I've seen him do.

So, when I say SUCCESS in the post, I really mean it. It's amazing the difference a year can make. Here are some pictures, for those on FB with me - there are some videos up there too!

Just for reference....this was March 2010.

Crying, check.

Wanting Dad to pick you up, check.

Cuddling so as not to be put down...check.

More clinging to daddy...check.

More cuddling Daddy...check. ((Though makes for an amazing picture!)

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