Back In The Saddle

Where have I been?  This is the longest, by far, that I have gone without blogging since I started nearly two years ago.  I have started many entries in my head and just ended up with nahhhh…..

I’ve been really tired, my migraines have been rough.  The kiddos’ schedules are out of control much of the time and keeping up with them is taking all of my energy.  After Nate’s IEP meeting I was kind of in a funk.  Thrilled for all of the positive changes, but well aware that we have stepped things up with him many times with little to no results.  I don’t know how it happened, but somewhere along the way, I have become the cynic when it comes to Nate.  It’s not so much that I don’t believe he will improve; it’s more that I am too scared to hope.  Every single time he does something new, I allow myself to get excited and then kind of pull back- will this last?  Will he ever do it again?  Will he lose this skill in two weeks?  It’s scary, there’s just not another word to describe it.

He is still clapping and he is still kissing me- and daddy, and Grammy!!  He is stomping his feet, tapping a table, interchanging those with clapping and getting the correct one something like 8 out of 10 times.  He is back to enunciating toast, juice, he said window last weekend (not again yet).  He is ornery as all get out, and this is definitely a positive. 

All of the therapists are coming around to that way of thinking now that they are seeing some progress- that his irritability is more of an “awakening” than a behavioral problem.  We have implemented very strict ways of dealing with it- if he tries to hit out of frustration we grab his hand, put it to his side and say “no” firmly (I know, rocket science).  The funny part is that he has totally gotten that- and now he will reach out like he is going to hit and after one tap or even before, he segues right into clapping.  Like, “oh wait, this is what I really meant to do”.  It works for me, when he reminds himself not to hit, I do feel like clapping for him!

We had our one month follow up at NIH last Friday- he has been on Aricept for 4 weeks now.  He impressed the pants off of the research coordinator- he said “cook” for cookie, and I said “you want cookie” (standard procedure to repeat a million times), I pulled a cookie out and he said “no, juice”.  He has never done this before.  Normally he would scream and hit out at the cookie.  This is a huge improvement in communication, not to mention that he did it in the presence of strangers, when he usually holds back in unfamiliar situations. He said “fish” when we were looking at the aquarium in the waiting room; he clapped for them and gave me kisses.  They are in love with him- they have left no doubt in my mindJ.  And I LOVE NIH.  They are just fantastic there.

As I said earlier, we also had his IEP two weeks ago and implemented a bunch of changes.  So now we are back to- why is he improving?  I actually have a tendency to believe that the medication is responsible for the changes- as I said earlier, we have been intervening like maniacs since Nate was younger than two and his progress has been slow, as in snail-like.  Yesterday I had a parent- teacher conference and his teacher said that in the last two weeks, she would have to change that description to “good progress”.  AKA, he is having a steep upward trajectory at the moment.  I just don’t think it’s a coincidence.  He is using PECS (physical ones, not on the computer) to make choices in the classroom, both play and food based.  He is participating in the routines.  Apparently in the past he would hide in his cubby and try to break into his lunch bag.  Both hilarious and sad at the same time.  His sleep has evened out for the most part; he is sleeping in his own bed again….

I don’t want to talk about it too much though.  I am afraid.  Wimpy mommy.  I want this to continue so badly but I am so stinking afraid that in some ways I can’t enjoy what’s happening right in front of my eyes.  Deep breaths…..we have to appreciate the here and now right?

Giddy Mommy

I am giddy today.  There is no huge reason, just a bunch of little ones.  Things like- every article of clothing I took to the consignment store on my lunch break was accepted except two.  Victory.  Jack got a report card and is progressing nicely- even on level for his grade in most areas.  My son is just so smart.  When I think of all of the challenges he faces with fixations on some things, lack of focus on others, sensory and fine motor issues, it hits me just how smart he must be.  If he can keep up with the other kids through all of that…..he’s just amazing.

Then I got to take him to swim, just the two of us tonight.  He was swimming laps beautifully, he let his instructor THROW him in the water, he jumped in several times on his own, dove for rings, and dove into the pool for the first time (with a little assistance).  These swim lessons are so wonderful for him- his self-confidence is just through the roof, and he never ever complains about going.  He loves it.

Then there’s Nate.  As always, I will qualify these developments with the statement “he is having a good week”.  His study doctor called just to check up on him this morning (no I am not kidding) and when I told her about this stuff she made sure to tell me that they could not “prove” that the Aricept is causing any of this.  I told her I was totally aware of that, and aware that he could lose these things tomorrow, but that today, I’m really really happy.  She said that is just the perfect way to go about this. 

So here is what we are seeing:

Bad:  sleep disturbances- he has been up from 1:30 to 4am for the past two nights- blech

Good: 

He is majorly opinionated and fighting going to bed in his own bed every night- and yes this does too go in the good column- in our world anyway.

He regained “go”, “chip”, and a couple of other words in the past few days.

He has learned how to give kisses, to mommy only, but it is the cutest thing ever and he does it whenever I ask- what more could a mom want?

He started clapping his hands today for the first time in close to a year.

Bear with me, I edited this video- but right now it's still long- the end is worth it- promise!!

 

He is choosing his food- I hold out two items and he (with his pointer finger) shows me which one he wants.

That’s all in the last week.  Once again all I will say is- this is a good week.  Oh, and everyone- please pray, ok?

Then there is my husband- I was trying at dinner to get Nate to clap, and of course he wouldn’t.  I was afraid John was going to think I was making it up.  Instead, while Jack and I were at swim class, he sent a video of him working with Nate to get him to clap- and he did it!  John was so patient, and tenacious.  He is a good autism daddy.

Yay family!!!!!

Our New IEP

Today was the big meeting for Nathan.  As I stated when I posted my IEP feedback letter the other day, I approached this meeting from a far less logical, clinical perspective than I typically do.  I am too worried about Nate to bother with formalities.  It hit me this morning why I have been fretting so much- obviously any parent would be frustrated by how slow progress has been, and of course that is part of it.  But I realized that the feeling of panic was coming more from my fear that the school would “give up” on him.  This may not be rational, but it’s what I was feeling.  I think I have earned the right to be a bit irrational- going through this with two kiddos, two of the people you love most in the world, is no joke.  It’s taxing, it’s draining, and it’s scary as hell.

The first thing I did when I got to the meeting today was pull up the below video of Nathan.  I have posted this before, but if I’m being honest, I never ever get tired of watching it.  I had promised his teacher at the beginning of the year that I would show it to her, as it is a snapshot of the little boy he was becoming before he regressed.  Keep in mind when you watch it that he was not even one at the time, so there is not much language involved- but he is looking right at me, answering me, looking at Jack, waiting for our reactions.  He is completely and fully engaged.  I was showing it to her as everyone was getting organized and they could hear Nathan on my phone- the OT asked what it was, and Nate’s teacher said, that’s Nate responding appropriately to his mommy, before he regressed.  She whipped around so fast she must have gotten dizzy.  They all seemed so shocked.  My purpose in doing this was not to make them feel sorry for Nate or our family.  I wanted them to see his previous level of functioning first hand.  I think that many times, professionals hear parents saying that their children regressed and frankly they don’t believe it.  They think that mom and dad missed the warning signs, that they just weren’t looking for the right things.  In our case, this mama was looking- obsessively.  This video was taken within three months of when Jack was diagnosed with Aspergers, so needless to say, I was on high alert.  I am so glad I have this piece of “evidence”.  One cannot deny what is playing out right in front of their eyes.  I think it had the desired effect.

I am proud to say that I only cried once, and teared up one other time.  I cried when I looked at the “goals”.  I cried because they haven’t changed- in fact some have been adjusted to be “more realistic”, ie, lower on the totem pole.  It’s hard to see in writing.  We discussed how difficult it is to get him engaged in any constructive activity- discussed sensory strategies, etc.  I was told that the school would be willing to train the teacher and aids on the Wilbarger brushing protocol:

http://www.ot-innovations.com/content/view/55/46/

This is something we did with Jack for a while several years ago, but eventually gave up due to the high frequency of the procedure- every 2 to 3 hours.  Jack was in preschool, then in pre-k and always had a daycare provider and coordination was just too complicated.  I think Nate has a much greater need for this type of input.  Says the mommy whose hands are often sore from providing deep pressure.  So between me, the school, and Cisco Center, this may be a viable option, which would be awesome.  I broke out the brush tonight just to see how Nate would tolerate it- his eyes literally rolled back in his head.  Poor kiddo.

Anyway, here are the results of the meeting:

-Nate will continue to have an aide- she is divided between him and another child (the ratio in class is already quite low, so this will work)

-Nate’s speech will change from 30 min sessions to 15 min sessions, which is entirely appropriate given his current attention span.  Additionally, the amount of time the speech pathologist will be spending with him will basically double and for now they will be working with him one on one.  Previously his sessions always included another child.

-If you can believe this, Nate has been getting ONE 30 minute session with the OT each month.  For Mr. Sensory.  These poor OT’s are stretched so incredibly thin, often covering multiple schools- there is just no room for true OT in the school setting because of these limitations.  That being said, his OT time will double.  Session length will decrease, which means they will occur with greater frequency. 

-Nate will be given a “trial” with the IPAD app Go Talk Now in the school setting.  If he is receptive, which I think he will be, we will have an ipad to bring home with this app on it, and begin using it at home.  We will also be implementing physical PECS in the meantime, as he has been more and more receptive to this.  One of his therapists is going to coordinate and make sure we all have the same pictures.

- Miss Gwen- oh Miss Gwen.  She is the magician that comes to our home on Mondays.  Her time with Nathan is going to double.  Two one hour sessions each week.  For now the second session will occur in the classroom, but she is willing to go to Cisco, and the plan is for her to possibly attend one of his Cisco days and a private OT appointment to see what is working for them.

Could this be any better?  I honestly don’t think so.  His teacher thanked me for my honest letter, and it feels like we are all on the same page.  The communication between the different therapists really impressed me at this school, they seem to be truly working together to develop a consistent plan for Nate.

The only downside for Nate right now is his study medication.  All week, almost every professional that regularly comes in contact with Nate has commented on how irritable he is.  He is usually a very easy going kid.  This is the most common side effect seen in kids with autism when they start Aricept, so at first this really bummed me out.  But I went and read several studies on the use of Aricept in this population and discovered that if this particular side effect persists, the dose can be decreased to help.  But the more interesting tidbit I found was several anecdotal reports of parents stating that they noticed that with this irritability came an increased awareness of environment and increased affection as well.  At about the 6 week mark in these same children, a marked increase in receptive and expressive speech was observed, not just by parents, but in repeated assessments- the results were clinically significant.  Again, this is a very small trial, but after all that we went through to start this study, I feel strongly that we need to stay the course- I need to know that we have given the medication an appropriate trial.  In the meantime, Nate climbed out of his bed 4 times when I was trying to put him to bed last night and screamed bloody murder every time I calmly walked him back to his room.  Am I crazy to think this might be a good thing?  Because I do.

One IEP meeting for the year down, one to go- but not until April thank GOD.

IEP Planning- Parental Input

Tomorrow is Nate's IEP meeting.  My heart is in my throat and I don't want to go.  I don't want to confront his lack of progress yet again.  But I am also in a panic, and at this point want to basically beg for more help.  He is not a behavioral problem- and this is an issue, as it was for Jack.  Behavioral issues get attention from the schools because they become safety concerns.  My kids' issues are just as important, but they don't "disturb" others, which is what makes this so challenging.  That being said, no one can look at Nate's various assessments and deny that what we are doing- it's not working.  And believe me, we are doing.  Usually when I provide parental input for an IEP meeting it is very straight forward, here is what we have, here is what my son is struggling with, this is what I think he needs.  I am not doing that this time.  This time I wrote a letter based on my feelings of desperation.  I don't know that it will do any good, but I could NOT sit down at this point in time and express the same concerns I have been expressing for over 2 years.  Because they have not changed, they have not improved.  It's absolutely terrifying for a parent, so I chose to express that.  I don't think there is much more they can do for Nate, so listing specifics is not going to help.  They know, they already listed those same concerns in their portion of the IEP planning documents.  Here is what I wrote:

Parental Input for Nathan Fury’s IEP:

Our concerns for Nathan remain numerous, and our degree of concern has increased substantially over this past year due to the lack of any discernable progress.  Nathan was recently assessed at NIH as part of the study he is currently participating in and it comes as no surprise to us that receptive and expressive speech remain at the same level as they were in May of 2013, which is also the same level he tested at in November of 2012 and frankly the same as September of 2011.  It is clear that despite all that is being done for Nathan, his current interventions are inadequate.  Not just in school but in general.  For every word he gains, he loses another, for each skill he learns, he loses others. 

Nate’s current private interventions:

Private OT twice a week

Participation in the Cisco Center special needs preschool programs 4 afternoons a week, where he also receives some speech services

Medical:  Nathan began Aricept with NIH approximately 10 days ago, he remains on a gluten/casein free diet, a probiotic, antifungal treatments, fish oil, and mitochondrial cocktail,

Nathan is currently on a waiting list for Cypress Creek Therapy Speech Services with the intent to take him as frequently as possible, up to 3x/week if recommended.  Our private insurance has only recently lifted the extremely tight limits on the number of therapy sessions allotted- they have relabeled his therapy as “habilitative services”.

This is all in addition to the services he is receiving at Benfield, for which we remain extremely grateful.  That being said, Nathan has been receiving early intervention services for over 2 years at this point with little to no progress, despite the relatively intensive nature of the program.  He has attended extended school year services, and when not in that program attended Cisco Center full time over the summer.

I think that we can all agree on Nathan’s main barrier to learning.  His sensory issues take over in most situations, he is unable to concentrate or attend to activities due to these needs.  I have tried the following:  Wilberger brushing protocol.  Chinese massage (yep), weighted blankets, sensory schedules including multiple swings we have mounted in our garage, weighted vest, fidgets, and chewies.  We are unable to engage Nathan in play 98% of the time in the home setting- when we do, his play remains sensory based, ie, he will play with Thomas trains but after a few minutes he ends up dangling the longest string of cars he can put together that can withstand gravity in front of his face.  He can string literally 20 monkeys in a barrel together, but once again, he dangles them in front of his face for visual stimulation. 

At this point, my question to the team is what else can be done for my sweet boy?  Our family has faced these challenges in the past with our older son, although they were not nearly as severe.  We are at a loss.  Are there other, more intensive, programs available to Nathan?  Could he benefit from a different setting at this point?  Are there further services available to Nathan at Benfield- individual speech, further OT intervention?

As his parents, his lack of progress is nothing short of devastating and it has left us feeling that we are missing some huge piece of the puzzle that is Nathan.  We are open to any and all interventions at this point.  I have also attached his recent assessment done at NIH for review.

Social Graces and Nonverbal Little Brothers

I haven’t posted about Jack in a while.  It’s kind of hard to explain, I guess the best way to put it is that he talks, he is in mainstream school.  While his progress may be a bit slower than other kids his age, he is managing and that is worth its weight in gold to me.   Nate has become my major project for obvious reasons.

Jack is in first grade- last year I came the closest I have ever come to fully asserting my authority as his mom, and as a result of this, and a wonderfully supportive staff, Jack is well-equipped at this point to accomplish the goals that were set for him.  Does he resist writing?  Like you wouldn’t believe.  Does he try to get out of reading?  Every single day.  “mommy, you start reading now”- and that’s after the first page.  But I know how to trick him into reading- he’s pretty straight forward- if you entice him with something that’s within his area of interest, he is actually pretty easy.  He had to “earn” wearing his Halloween costume to school- he was a world war II fighter pilot- extra math homework on the computer every night for a week.  He did it, and when he would start to complain, I would remind him of the costume and he was good to go.

His assistive technology “plan” is being put into place- he has a word processor available to him at all times, and he continues with a scribe for tests and longer assignments.  It has made a world of difference for him.  His aid this year was with him for quite a bit of the time last year, and you can tell that she is really looking out for him.  The same thing applies for his OT- and the special educator, while she is “new to us”, has been extremely communicative.  I miss his kindergarten teacher- I really felt part of the team when he was in her class because she kept me informed of any issues or challenges that Jack was facing.  It was a very comforting feeling.  This year there is quite a bit less of this, which is not a fault of his current teacher, just a different style.  It was more like this when Jack was in pre-K, and it’s fine, just takes some adjusting on my part.  It also keeps me from becoming a helicopter mom.  I made the decision to do minimal volunteering in his classroom for the same reason- it stresses me out sooooo much, and I know that having me there really interferes with his learning.  Not to mention, this mama is just a bit busy these days.  Jack is struggling a bit with math- which is also a challenge for me because I LOVE math and have a hard time remaining patient when he doesn’t “get” something. 

Most of the issues and major developments with Jack revolve around his social world.  His view of others is changing, his desire to be around other kids is greater.  This is awesome- but it comes in fits and starts and he really struggles with being appropriate in social contexts.  He has the tendency to take things too far, make other kids uncomfortable or annoyed.  He has had a few ahem, “conflicts” with a little girl at school, although I honestly think it’s more “flirting” than anything else.  I had to have several “talking to’s” with him, and even banned him from watching airplane videos one evening- that definitely had the desired effect.  I haven’t heard of any further issues in the last week or so, keeping my fingers crossed.  Jack talks about “friends” from school more these days, asks for play dates, etc.  He has also gotten somewhat attached to the school nurse, and seems to visit her for the smallest reasons- luckily she loves him.  Kind of cracks me up that when she calls she ends up gushing and asking me how I can ever “discipline” him.  I told her that after 6 years, the cuteness factor kind of erodes, ha.

The downside?  Jack is kind of fed up with Nathan.  He wants his brother to play with him, interact with him, or frankly at this point, just react to him.  And he really doesn’t- unless Jack really ticks him off.  So Jack constantly tries to annoy him just so that Nate will acknowledge him.  It’s not hard to know when he’s succeeded as Nathan, while “nonverbal”, has no problem with shrieking at the top of his lungs.  Jack has even asked for a “new brother who talks” on multiple occasions.  He insists on calling Nathan a baby and says he wants a bigger brother.  If John and I knew we could give him a neurotypical brother or sister we might just do it at this point.  Having a sibling who won’t engage at all is almost worse than being an only child in some ways- because they are right there, but not.  I feel like this is part of the reason Jack has trouble with peers sometimes- he doesn’t have a “baseline” of what’s appropriate, other than his buddies.  He tries to treat them the same way he does Nate, because he knows it will get a reaction, but of course this doesn’t go over too well. 

We need to do more play dates- my anxiety over his sometime inappropriate behavior should not stand in the way of this, but I am ashamed to say that this is sometimes the case.  I need to get over it, it’s just much harder than it sounds.  Which is why I’m ecstatic that a mom at Jack’s adaptive swim lessons who has I believe one son on the spectrum and one son with Down’s,  gave me her card tonight and told me to call her.  Jack made a little friend!  Good stuff.  Because the idea of having another child is more terrifying than I can even put into words- I don’t know if I am capable of having a neurotypical child and I feel irresponsible taking that chance.  I know that most of the girls on both sides of our families have been neurotypical, but I also know that I have had two boys, and have 4 nephews and one niece.  The odds are not in our favor on that one.  It’s not that I don’t “want” another child on the spectrum, I just don’t know that I am physically capable of doing all of the things for another child that I am doing for these two right now.  The thought of it makes me want to just schedule lots and lots of play dates, ha.