Thank You For Stimming

What a freaking day.

I took the boys to see their developmental pediatrician today, which is always a treat.  Don’t get me wrong, I like him, it’s just always overwhelming, discouraging, enlightening, hopeful, and depressing all wrapped into one. 

For Jack it was more of a “tune up”; try these supplements, let’s get a few more tests, progress is there and we’re happy.  Not to poo poo it, because there were significant changes to be made, but it was all stuff I can handle.  And we also don’t want to make too many changes right now in light of the study.

Nathan was a different story.  I pretty much laid it all out for the doctor (mind you, this is a two hour appointment, not your typical doctor’s visit).  I continue to be extremely worried about Nate’s lack of progress.  I am worried about language and skills, but most importantly right now I am worried about his stimming.  How frequent it is, how intense it is.  I mean we don’t even notice some of it anymore because it’s just the norm- the lap running, the waving things in front of his face, the humming, and the repeating of sounds over and over again.  The constant need to be squeezed- arms, legs, sometimes head.  And I have described this before in these appointments.  But Nate hates any doctor’s office and usually curls up on my lap.  Today he seemed to relax a bit- he’s been to this office a lot now, and he got restless after we were in that small room for a while.  He got down; he ran his laps, made his sounds, waved his fingers.  The “full Monty”.  And the doctor saw all of it.  You could see his level of concern growing as he watched- as were the number of recommendations he was writing down.

One of the things he said is something I have been saying all along.  This just feels like yeast- the stimming, the grainy poop (sorry), the crazy laughter.  The fact that he improves on nystatin but then immediately reverts to his old behaviors when it’s stopped.  All of these things point to yeast.  Not to mention that this issue tends to crop up in kids (note that these kids also have a genetic predisposition to this stuff) who are on lots of antibiotics when they are very young, and also on nebulizers.  Yes, Nate was on both.  Repeated upper respiratory and ear infections.  Lots of wheezing, which has since resolved.  The antibiotics kill off all of the good bacteria in the gut and leave it vulnerable to yeast growth.  Repeat this multiple times and you could have a real mess on your hands.  That’s where the doctor thinks we might be.  If I could offer any advice to parents of little guys (and I usually don’t dispense advice in this blog) it would be this:  put your kid on a probiotic.  They have powdered ones you can mix in with breast milk or formula or even water.  Give your little one the good bacteria.  It’s a relatively cheap way to prevent this yeast overgrowth.  Our world is TOO antibacterial at this point and I really believe it is causing more harm than good.

Long story short, the doctor wants me to send Nate’s urine for amino acid testing.  The results of this testing show if certain byproducts of yeast or clostridium (another chronic gut infection) are present, and thus confirm the presence of the issue.  There are few direct ways to test for this, but this is one of them.  Of course this is not covered by insurance.  We have put it off and treated empirically for suspected yeast.  It’s time to bite the bullet and send off a check for $300 to have my kid’s urine tested.  It’s just time.  So he has his specimen collection bag on tonight- plus two diapers and zip up pajamas and tomorrow FedEx will pick up his pee (still makes me giggle).  Once the results are in we will use them to guide our next steps- likely stronger probiotics, a stronger round of fluconazole, flagyl if needed for clostridium. 

The other step we decided to take today was to start a “mitochondrial cocktail” for Nate.  This sounds scary somehow right?  But really it’s just a certain combination of supplements that help Nate’s mitochondria to function better.  Apparently some of Nate’s more recent lab results have been pretty indicative that this is a problem for him.  Here is a little more info on what that means:

http://mitochondrialdiseases.org/autism/

What is the role of mitochondrial dysfunction in ASD?

All ASD is not mitochondrial disease. However, mitochondrial dysfunction has been found repeatedly to be prevalent in this group of children and adults. The brain and muscles require a tremendous amount of energy to function normally. Deficiencies in the ability to fuel brain neurons – as may occur with mitochondrial dysfunction – could lead to some of the symptoms of Autism.

 

Because mitochondria make ATP, as well as perform vital cellular tasks, mitochondrial dysfunction can result in less energy available to fuel the high-energy needs of the brain and muscles, and also leave free radicals in the system where they can cause damage. Overall, there is a large and growing body of research showing that individuals with ASD often have significant mitochondrial dysfunction, which may be a cause of, or contributing factor to, their development disorder.

So here is what the “doctor ordered” (before reading take a deep breath- I know I have to):

Carnitor 3 tsp 3x a day

Ester C 1000mg 2x a day

Vitamin E 400 IU 2x a day

Bcomplex 100mg 1-2x a day- B1, B2, B3, B6 (already gets B12 injections)

Alpha Lipoic Acid 1000mg 3x a day

Biotin 10mg 1x a day

saccharomyces boulardii (second probiotic)

and continue everything he was on previously

And to be honest, there are 2 more that I, the nurse, cannot decipher due to his chicken scratch so I will have to call the office about those. 

Can someone explain to me how on earth I am supposed to get all of this into a child who doesn’t swallow pills??  Seriously?  I decided to experiment with different substances to mix these with this evening- thus far he has rejected almond butter, chocolate syrup, and applesauce.  Yet he somewhat accepted fish oil, which he gets every day.  Any

suggestions are welcome.

I want to thank Nathan for stimming in the office today.  I think it was a very good thing for the doctor to see him in action.  I think it pushed him to be a bit more aggressive.

That’s about it for tonight.  Excuse me while my head explodes…

What I Learned in Kindergarten

I haven't really written about the end of the school year for Jack, or expressed my thoughts about the over all experience this year so I thought I would take a few minutes to do that.

I sat down this evening and really went through everything the teacher sent home with Jack on his last day of school- you know everything they can find that has his name on it- locker label, book marks, pencils, all that good stuff.  Except I found what I consider to be a treasure.  The results of Jack's Assistive Technology Evaluation.

The evaluation states that Jack needs an AT device- in the form of supplementary aids, services, program modifications and supports.  He is to have daily keyboarding practice, he will be provided something call Pixwriter software which utilizes pictures to develop written work, and it will be made available for home use as well for homework as needed.  The school is to ensure that Jack has computer access in all classroom settings; he will be provided with worksheets in a digital format as needed so he can type his answers.

Well then, that's just AWESOME!!!!  Another school victory.

In my first "big kid" IEP meeting at the end of pre-K last year, I was quite overwhelmed.  Many people were talking "at" me and telling me "what my son needed".  And it wasn't much- it made me really nervous.  For his severe fine motor deficits he would have a pencil grip?  a slant board?  a lunch buddy?  That hardly seemed adequate.  The time with the special educator seemed very limited, OT assistance as well.  And no aid.  But in my eyes, at that point, these were the experts on what my child needed in school, so I accepted their "recommendations" and we moved on to kindergarten.

Man was I wrong.  Man were THEY wrong. 

It's often said that as a mom you are the expert on your child.  And of course this is true, there is no other human on earth who knows your child as well as you do.  I have fully accepted that for quite awhile now.  However, when we transitioned to the school setting, I guess I felt like the teachers would be the experts on my child in this arena, they are the ones watching him learn at school and seeing the areas in which he struggles.  I still believe this to be so to a certain extent- Jack's teacher this past year was certainly very aware and communicative regarding his struggles.   What I learned though, is that unfortunately, in the school's eyes, the only people who can really stand up and argue that "hey this isn't enough for my son" are his parents.  Jack's teacher could tell everyone and their brother that Jack needed more help, but until it came from me (and the advocate), nothing changed.  I believe this is also a legal issue, goodness knows I had to sign a consent every time they evaluated Jack for anything, but it makes me sad that the teacher who is with my son in this setting every single day is not given the power to advocate for what they believe him to need.  Or at least, they don't get results.  I hate to say it, but it's also a money issue- with limited funding for special education, the parent really has to shove their foot in the door and refuse to move it until the appropriate changes are made.  I was shocked the first time the advocate we worked with said to the administrators something like "just to be sure, you do have adequate documentation to get funding for additional support for Jack right?"  That's why I was getting letters from his OT, pediatrician and developmental pediatrician recommending interventions.  Not because the school didn't already know what he needed, but because the people who dole out the funding needed "documentation".  There is a fundamental problem here- shouldn't the educators' recommendations be trusted?  Isn't that why they are there?  Because they are able to assess these things?  Apparently not.

To many of you who have children older than mine, this is likely old hat.  However I have made several friends and have plenty of readers who have much younger children with autism.  To you I say this- learn from my mistakes and misconceptions.  In every area of life YOU are the expert on your child.  Even if you believe that your child's teacher knows what his best for him/her, YOU have to ask for it.  Demand it.  Because it is not just what your child deserves, it is their RIGHT. 

Had I let things remain at the status quo for Jack this year, he would be having an hour of special education a week, which was actually time with an aid, not the educator.   He would not be in speech.  He would not have been evaluated by the alternative technology team.  I do believe that through his updated evaluations, he would have received further aid support, reading assistance, and math accommodations.  That being said, they weren't even planning on doing either the speech or assistive technology evaluations.  But because I requested this, and made a good case for each, Jack now has speech twice a week, and is going to be provided with technology that will assist him in generating his own work instead of relying on a scribe and hoping his handwriting becomes legible, someday.  I mean, he's been in OT since he was 3- the bottom line is that he's not ready to write.  You can't force that, you just can't.

I am not trying to toot my own horn, I am by no means an IEP expert.  I do believe that I am an experienced autism mom at this point though and I want to empower other autism parents who are struggling or just starting on this journey.  Sometimes I can't believe how far we have come this year.  When Jack starts first grade, the school will be well prepared for his needs, and I will feel confident that all issues are being adequately addressed.  Not half bad for a year's work!!

"D Day"

Tomorrow is what I have dubbed "d day".  I will be getting up early, leaving the house with Jack by 7 and heading to DC for a "quick" appointment.  I plan to be home in time to put in a full day of work.  Tomorrow Jack is starting Namenda as part of the study he has been enrolled in.  I am nervous, excited, scared, and hopeful.

  We have been reading a book about Aspergers- I feel like Jack is old enough to notice that things are different for him, and I want to set the precedent early on that yes, different is the right way to say it, not less.  The book I found is called "What It Is to Be Me!- An Asperger Kid Book".

It is like reading or looking at a map of Jack.  It is about a little boy named Danny who has aspergers- he talks about how he's very good at some things, like computers, but has a really hard time with things like writing. (check)  It talks about his very strong senses, and the fact that sound often hurt his ears, and sometimes he likes to wear headphones.  It addresses food texture issues (pasta has never once entered my child's mouth), personal space issues, fixations, difficulty listening, CONSTANT questions about how things work, and taking things super literally.  It is a great book and Jack really likes it.

I tried to use some of these concepts to explain what this new medication is all about, and I have to admit it, mommy FAIL.  I used the example of his "super ears".  Or tried to. I was attempting to explain to Jack that he would be taking a new pill that might help him feel a little different, like things won't hurt his ears as much.  Somehow, he turned it into this- the pill is going to make sounds and it will hurt his ears.  Sigh.  So for the past 5 days I have been trying to undo this damage- every time he takes a supplement that's in pill form we examine it and confirm that it does not in fact have a mouth, so it can't make any sounds.  Hope this works tomorrow.

Here is some anecdotal info on Namenda.  Oh, and I should mention that this study, which is taking place at multiple centers nationwide, just increased it's enrollment from 120 participants to 900- seems it is pretty promising.

http://autismliveshere.com/2012/03/namenda-month/

https://imfar.confex.com/imfar/2012/webprogram/Paper11938.html


Here is the study we are participating in:
http://clinicaltrials.gov/ct2/show/NCT00872898

I am NOT a fan of giving my child drugs.  That being said, this year has been very very difficult for both myself and Jack's father to watch.  His difficulties in the school setting are almost painful to see, and knowing how smart he is and knowing how much the "noise" is getting in the way of him functioning at the level he is capable of is just awful.  I have tried B12, GABA, inositol, DMAE, melatonin and magnesium in terms of natural therapies.  I have tried focalin and intuniv in terms of ADHD therapies.  Nothing has helped, or at least not significantly.  So this is where we are.  This is the next step.  And at least with the study, he will be closely monitored.

So please say a few prayers for our family, the next few days could be very telling. 

New Sensory Plan...

This idea has been taking shape (in my mind anyway) for quite awhile.  It started when Nate's OT began coming out of their sessions and telling me about a new word here or there that he would say after some of the sensory activities they do in their work.  Particularly swinging.  I have wanted an OT swing FOREVER for the boys- they both find it very calming, but the back and forth kind that are outside are not adequate for what I am talking about (although as we can all attest, they are pretty calming too).

Here is a good explanation:
http://www.takeaswing.com/bos.html

Great, I want one.  Here is the one I have been wanting:
https://kidsdreamgym.com/products-page/autism-swing-hammocks/joki-hanging-crows-nest

OK, close to $200 with shipping- not horrible, but let's face it, I don't have that kind of money to be spending on a swing, and with the mats that would be needed under the swing, the hanging mechanism, etc, it would be much more. 

So I was sitting in the boys' OT waiting room yesterday talking to a dad, and he told me about this:

From Ikea, for 45 bucks.  Here is the description:  Swinging develops the sense of balance and body perception. It also brings a feeling of well-being and relaxation

How awesome is this?  Oh wait, so awesome that it's been discontinued.  Crappity crap. 

So this mama did what she does whenever she has a problem of this nature- I consulted craigslist.  Well low and behold, there was one listed in Virginia!  For $25!  It was an hour and a half drive each way, but frankly I was up for it considering the circumstances.  So I emailed the seller and after telling her about the boys and where we live, she offered to ship it to us!  And since she is another autism mom, I don't doubt her at all.  This is great news for the boys.

One more thing though....where to put it.  We don't have a large area in our home that we can dedicate to something like this.  I don't trust the boys to have something like this in their room and not try to yank it from the ceiling (call me crazy, ha).  So hanging this swing will involve daddy taking one for the team.  Daddy has a "man cave" in our garage, and well, for him to have this "cave" I have already sacrificed my garage parking spot, so I guess we are both giving here.  Today I casually "suggested" setting up a sensory/OT area in the front half of "my side", while his area would still be in the back half.  And he said OK!  Now it will involve some clean out of other kiddie items, etc, but I think this will be great!  No worries about locating a beam to hang the swing from since the rafters are already exposed.  We have a trampoline, and a tunnel, so really we just need to get some mats to lay out on the floor, and then go from there.  I have lots of cheapy ideas and I think I can make this into a great, calming area for both boys.  I am totally psyched!

And just another little shout out to Ikea and their sensory friendly kids' items.  Look at this stuff:

Now I think that the rings and flat swing are also discontinued (think ebay), but the "egg chair" is not.  The thing spins, and the canopy pulls all the way down in front to make a little "cave" for the child to be in.  The dad at OT said they are probably getting rid of theirs and will give it to us.  I just can't believe that a Swedish furniture company could have such insight!  Or is it that the rest of the world is already in on the secret that there are many kids with major sensory needs?  Either way, I am excited to get started on this next little project.

Trial By Field Trip

I took the day off today (one of my FEW remaining vacation days) to go on Jack's field trip to a place called Camp Woodlands.  First of all, I should explain that for every field trip I am "cordially invited" by the staff of Jack's school.  And I get it.  It would really be a lot to ask of a parent volunteer to have a group of kids that included Jack- he needs so much supervision, and chasing, and...yeah, he needs a lot.

I won't lie and say I was looking forward to this day.  I was looking forward to time with Jack, and I was looking forward to the neat activities, but any time Jack is in a new environment, especially one with lots of environmental stimuli and structured activities, it is extremely challenging to keep him engaged, and to make him understand how to behave.  We don't have the luxury of me "giving him a look" and expecting him to understand to stop a behavior or be quiet.  He just doesn't register that type of change in facial expression. 

With all of this in mind, I will say that there were some victories in today's field trip.  Jack loved many of the activities, which ranged from catching fish in a net, to a ride in a row boat (Jack went by himself with two other students and a parent, and even led them in a rousing chorus of row, row, row your boat), to digging for bugs with Mr. Kevin, songs in front of a camp fire, and learning about trees.  He cooperated for at least the first few activities.  He was really ready to be done after lunch and had a mini meltdown at the first activity after lunch, with a burst of inappropriate behaviors, shouting and trying to run away.  I took him for a walk, even took him behind some trees and spun him around some (which is calming), picked him up and swung him.  Did not help much.  He had similar issues at the first part of the tree activity, where the kids were supposed to collect different tree "seeds"- pinecones, acorns, etc in buckets and see how many they could find.  The kids picked them up, Jack took them out of their buckets and threw them back.  There was a trailer in the area and all he wanted to do was climb on it. 

OK, so here's the thing.  Much of this is about me.  Yes, everyone and their brother noticed that Jack's behaviors are difficult, believe me, he stood out today.  What do I expect?  He is on the spectrum, he has ADHD (which is becoming a more and more clear issue each day).  He is going to have a very difficult time with things like this.  There is a reason why he has a full time aid in school, and that is a familiar environment.  I know all of this on an intellectual level.  But I am embarrassed.  Really really embarrassed.  Most of these parents don't know what is going on with Jack- I feel like they just think he is being naughty.  That his mom is right there and just can't calm him or make him behave.  You have to really watch him- he CAN'T HELP IT.  Even when he is really trying to listen, he just can't do it.  Even though I get all of this, it is frustrating, and for someone like me, who has been quite the rule follower her whole life, it is intolerable to me to see people looking at my kid in a disapproving way.  Some parents are better than others, some people are more tolerant than others.  It was a long day to endure with Jack- one that tried every ounce of patience that I have, and one that made me want to stand on a stump several times and scream "he's not naughty people, he is sensory overloaded!!!!"."  I mean, come on, he climbed on the forbidden trailer at one point and informed me that he was activating his "sensory integrator". 

This is the darned blue crab that he saw at the first activity- he could think of little else all day and tried to run away to see the crab on multiple occasions....

Digging for bugs....

Here are the positive things I take from today.  I was paired with another nurse mommy- we talked shop a bit, she was interested in my job and working from home.  She was empathetic and picked up slack with the other kids when I was chasing Jack.  Several of the parent "teachers" were just as understanding, although I could tell that wasn't the case for all of them.  And the other kids- Jack is well loved among many of his peers, and as always, especially the girls.  All of these little mothers just crack me up.  But it's not just the girls, there are some great little boys too.  That really touches me.  Kids wanted him to sit with them, on the bus, at lunch, etc. 

Jack and his buddy on the ride home....

So we both survived.  And we both learned some things.  I guess that would make the day a success.  However, now, I am ready to go sleep- for a long long time.

OT Shenanigans

Thought I would share some really fun videos of the boys' progress in OT.  Jack has been with the same OT for close to 3 years now, and I will be sitting in the waiting room and "bing" I will get a video of one of the boys doing something awesome.  I used to go back to watch when it was just Jack, but Natey gets really really mad if I come back to watch something and then leave again.  Thus the videos.  Which is really preferred, b/c I can watch them over and over again!
First Jack....

seat drops on the trampoline!

"hanging" out- this is a HUGE improvement in strength for him

And last but not least, Natey and the zip line



I want OT!!  Trampoline?  Zip line?  It's like Rolly Pollies!  Except it really is very challenging for these guys, and I have seen both of them make tremendous progress.  They both tolerate so much more movement than they used to, and both have great improvement in strength.  The sensory benefits are also huge.  Enjoy!

The Smallest Things....

Can feel like huge victories when you are dealing with autism.  I know all my autism parents know exactly what I mean.  A hug is always awesome, but when your kid has sensory issues and hugs you, you feel like you just won the lottery.

Today's first victory occurred when I opened Jack's book bag after school and saw his hermit crab book.  This is a victory because we recently changed his behavioral incentive program at school from toys (he wasn't showing much interest) to "book privileges".  I am sending in books about his areas of interest and if he does a good job he gets 5 minutes to look at the book.  So if he brought it home, it means he earned book time, and it means that it was a good pick by mommy because he didn't want to give it back.

John and I both noticed that it was "a bit quiet" (read- dull roar) before dinner, and when I looked downstairs, Jack was playing independently.  Not only that, but every once in awhile he would holler up to us, "hey, I found my toy oriole" or "look, my hermit crab!".  He was focusing enough to look through the box for the exact toy he wanted AND not losing his temper when he couldn't find it right away. Usually he is screaming for me and yelling for me to "find it now!"  So this was really, really pleasant.  Small thing....big victory for Mr. Jack

Ode to the IEP

This is how far I have sunk people....really far

Twas the night before IEP's and all through the house
Not a creature was stirring, well, except mama
The papers were stacked by the front door with care
Because mama knew that IEP day soon would be there

The children were nestled all snug in their beds
With visions of zip lines zooming through their heads
And me with my coffee and my highlighter out
Tried to discern what these "goals" were really about

2 out of 3 trials independently they said?
They want Jack to learn to stand on his head?
He would benefit from all of these things they declare
But when I look at interventions, well, none of them are there!

Additional adult support is the key
I used to think that that person could have beeen ME
A scribe will assist my little boy with his testing
He can think more effectively with his little hands resting

Break down his assignments into smaller units
How the heck will his teacher do this with 25 other students?
Not to mention the behavior chart with rewards they suggest
To encourage my boy to always do his best

A slant board, weighted pencil, wiggle seat and lap pad
At school my son looks like he's starting a new fad
Make Jack repeat the information he heard
Don't you get it?  He really wants to talk about a bird!!!

In the frustration mommy feels she isn't alone
The staff wants to help but resources are dry as a bone
So I fight, and they fight and we hope for the best
Knowing the battle for more funding will be the true test

When I feel like screaming, I let the advocate do the talking
Because if I said what I wanted, they might send me walking
I try to stay calm, after all this isn't my first time
My kids are 3 and 5 and this is IEP meeting number 9!

We'll make it through this day and move on from this meeting
And pray that my son excels with preferential seating
As a mom of a special needs kid this is the dance
Working your butt off to give your amazing child a chance

So sleep will elude me tonight there's no doubt
I'll dress up in the morning even whip the makeup out
I'll advocate for my son and when it's all over
I'll pass out in my latte then get under the covers
On Friday we'll start to implement all of these plans
As I constantly remind myself that my baby is in really good hands

Yep, I went there

Decisions, Decisions

As parents, we all want to provide for our children.  As good parents, we want to offer opportunities for growth and development outside the necessities.  But where is that line?  What is a necessity and what is an enrichment activity?  It's a tough call.  We live in a pretty upper middle class area where you feel even more pressure as a parent to have your child enrolled in multiple extracurricular activities in order to offer them a level playing field to that of their peers.

Add Autism to the mix and that line between enrichment and necessity becomes even more blurred.  There have been many different types of therapies researched for kids on the spectrum that have been found to be beneficial.  There's no way I can list them all, but here are a few:  equine therapy, aquatic therapy, vision therapy, occupational therapy, speech therapy, social skills groups, special needs sports.  The pressure on an autism parent increases because like all potential therapies for our kids, we feel a desperate drive to provide these things.  What if one of these activities really helps one of our children to make a breakthrough? 

So of course I want my kids involved in all of this.  Never gonna happen.  The boys are both in OT, which is mostly covered by insurance, but just to give you an idea, that alone (and this is just copays) comes out to $45 a week.  OK.  So swim lessons, not so bad, right?  WRONG.  For a special needs child, lessons range from $40-50 for each lesson. I have checked with all 4 local special needs options.  Equine therapy, about the same.  The boys could have speech covered by insurance, but with our insurance, they may have 60 sessions each year a piece and this encompasses speech, occupational, and physical therapy.  How on earth does that make sense?  Oh, I see your child has greater deficits than the child who only requires OT once a week.  I see your child needs both OT and speech.  OK, they can have both, but they can only go to each twice a month.  Now how is the child with greater needs going to make progress given this set of circumstances? 

Now, add to this....wait for it...two kids who could benefit from all of this.  Can someone explain to me how on earth I am to provide these opportunities for my children?  Because you see, they already require daycare, special needs daycare and guess what?  You got it- because they have special needs, it's more expensive.

When is someone going to give our families a break?  I know that our children have special needs.  I know that teaching them requires giving more of one's self.  Believe you me, I know.  Thing is, my work didn't start paying me more in order to assist me in taking care of my special needs kids, last time I checked there isn't a larger tax deduction for a child on the spectrum, and I'm pretty sure that no one has set up a trust fund for either one of my kids without telling me.  So HOW am I supposed to choose which child gets what?  Which child needs these things more?  If I won the lottery, I would be giving money to every autism family I could find.  I would be setting up a "therapy fund" for other kids with autism.  It continues to sicken me that on diagnosis, when I asked what I could do for my child, the doctor replied "how much money do you have?"

Sickens me. 

Medication=Fail! Lessons Learned

I wrote a few months ago about the option of putting Jack on medication for his ADHD like symptoms.  As his pediatrician stated, these symptoms are very common in children with Asperger's- she was supportive of us either way.  Jack's teacher has had the very frustrating task of trying to help him focus in class- and not hyper focus on things like airplanes.  She was supportive of a medication trial as well.  So we took the plunge- hesitantly- so more like we dipped our toes in and have now yanked our frozen feet out of the water and decided to go another route.

There are a bazillion ADHD medications on the market.  99% of them are stimulants, which has always seemed counterintuitive to me.  Our first attempt with medication was to try one of these- focalin.  We started with a low dose and gradually increased.  And here is where the issue lies for kids like Jack- he has major sensory issues right?  These stimulants take these issues and multiply them for these poor kids- my baby wore headphones all day every day at school for nearly a month because of this medication.  And he was sleepy most of the time.  I called the pediatrician and said "NEXT!".  So then we tried the medication in the other 1%- intuniv- a non-stimulant ADHD medication that originally was prescribed for hypertension in adults.  This medication has for the most part been used to enhance the effects of the stimulant drugs, but our pediatrician and others have had some success using this agent alone in Asperger's kids.  One caveat- Jack had to learn how to swallow a pill.

Mommy tried everything (I thought) to aid in this process- we tried pudding, applesauce, ice cream, chocolate sauce, etc.  And mommy also sat and stared at Jack for hours after he had accidentally chewed these slow release pills- checking capillary refill and level of arousal as I was afraid he would have a hypotensive episode.  Guess what worked?  JUICE.  Gulp, gone.  He can take 2 and 3 pills at a time, who knew?

The result of this medication- you have been watching me live it, you just haven't known the reason.  First, Jack has been falling asleep in school multiple times a day.  Second, his OT was in tears at one point because he just wasn't "Jack" anymore (and I agreed).  Third and most disturbingly- the sleep issue.  Jack's anxiety at night was through the roof- waking 10-15 times a night.  I have slept at the foot of his bed more nights than I care to admit out of desperation for a little rest.  And if I so much as shifted like I might get out of bed, Jack woke up and called out for me.  He had other side effects as well, although we can't be sure if it was truly the meds or if it was lack of sleep- he was being mean to the whole family, using bad language, just not himself.  Although when at school and AWAKE he was supposedly focusing a bit better on his work.  I doubt this was actually the case, although I am sure he was quieter because he was exhausted.  I cried UNCLE about 2 weeks ago now and we started weaning him down, and giving him clonidine for sleep.  His doctor warned me to give him only half a tablet initially which would probably knock him out- try 2 full tablets, and then he would stay asleep for about 2.5 hours. 

Last night I finally saw a light at the end of the tunnel.  He only woke up twice.  Granted I fell asleep at the foot of his bed and stayed there- but he didn't wake up this morning until 7:30.  I cried. 

So if you are wondering why I am being so diligent and adding so many different biomedical interventions it is because I want to avoid medications unless absolutely necessary.  They are too rough on Jack.  And frankly, how can I be sure that these ADHD "symptoms" are really that?  It's more likely that his sensory issues, lack of over all core strength and hyperfocus on his  areas of interest are what is causing these issues.   Medication is not the answer for that- school intervention is.  Enter IEP advocate.....

Stepping Into the Ring

We have had a relatively event free month.  All done.  First of all, Jack has not slept more than an hour and a half in a row in the past week and a half.  He has even taken this a step further and will not sleep AT ALL unless I am in the bed with him.  Last night I woke up about 10 times with him.  At one point I found him sitting ON ME reading a magazine. 

We have his IEP meeting on Thursday.  I am a nervous wreck.  I know he needs a full time aid.  I have no idea how to accomplish this.  I am embarassed to say this- however- I need an advocate for him.  He does not have discipline issues, he is not a "risk" to the school.  I need to prove to the powers that be that he needs this aid for attention issues and motor issues- to accomplish his educational goals.  His teacher freely states that he is falling behind academically because he cannot focus on his work.   I have letters from his pediatrician and his private OT.  I have samples of his work from the past few months with and without the aid.  I know this is not enough.  I am doing all the research I can, and unfortunately all of this research has told me I need the advocate.  That I am not going to be listened to.  I am a basketcase.  Advocates cost thousands of dollars. 

We also have our next appointment with the developmental pediatrician this Friday.  Lab results, more tests I am sure, and more meds.  Oh, and before that, Nate and I are going to be videotaped "playing" again.  So that should be fun.  We also have the 8 hour day at the SEED study coming up. 

Thus my post of facebook this morning:

"I have decided I no longer want to be an adult....if anyone needs me I will be in my couch cushion and bed sheet fort....coloring."

Awesome

Just Keep Swimming

What a crazy busy couple of days this has been.  After yet another migraine filled weekend I was frankly worried that I couldn't get everything done these past few days.  But as always, I muddled through.  Not that the week is over, but the worst is.  Sometimes I feel like Dory from Finding Nemo- Just keep swimming...  At 8:30 yesterday morning we met our family photographer at a park for portraits- while I have been dreading this, it was also hugely important to me.  I wanted to recognize and celebrate our little family and our survival after the past year.  We even did some shots of just John and me, first time we've done that since our wedding.  That part was really nice.  Nate was incredibly fussy the whole time- granted it was freezing outside, but I had both boys layered to the max and thought they were rather cozy.  It was breezy, and Nate even cried when we put him on the swings.  The only ways I could get a smile were to throw him up in the air or alternately squat down on the ground and run at him really fast.  Seriously, I am sore today.  Our photographer Heather is amazing and I am sure she managed to get some good stuff. 

After that we had an 11:30 appointment up at our boys' autism specialist Dr. Brenner. Literally on the drive over Nate developed sure fire symptoms of pink eye- by the time we got there my poor boy was crusty.  That wind must've hurt so much!  Poor buddy.  We hadn't seen Dr. Brenner in several months and I knew the appointment would be jam-packed.  I have to touch once more on just how amazing this man is- he spent over 2 hours with us- now granted he took all of his calls while meeting with us, filled out requisitions and ordered his lunch.  I am completely great with that- his time is valuable and the fact that it was an "insurance covered" visit means that it should have lasted no more than 15 minutes for each child.  Clearly he does not subscribe to this guideline, at least not with his kids on the spectrum.  He went through all the lab results, there were several interesting things.  They do both have the MTHFR gene- as he stated, many many people have this, it's only in the past 15 or so years that it has become a "problem".  There are many theories about this, but the bottom line is that most professionals think it has to do with environmental exposure- BPA, antibiotics, vaccines, contaminated water and soil, just to name a few triggering the issues this gene mutation can cause.  He did prescribe a form of folic acid that is further broken down- leucovorin.  Hearing this medication name made me freeze up for a second- it's a drug I used to give IV to my oncology patients when they were receiving certain chemotherapies.  It basically guards their bodies from harmful effects of the chemo.  That is where this drug is catalogged in my mind.  Time to reframe.  So that was one of the MANY changes he made to the boys' regimens.  More labwork, including urine.  He increased Nate's dose of methyl-B12, asked me to try it with Jack as well.  I am worried sick about giving Jack injections, but it is what it is.  We can do just about anything we put our minds to as a family.  He also prescribed something called MSM for both boys, told me to increase their P5P, start them both on GABA, and start transdermal glutathione.  Oh and just in case I wasn't about to pass out, he would also like me to try adding the Feingold diet.  This eliminates all synthetic coloring, artificial flavors and preservatives and all phenols.  Since we do most of this, doesn't sound so bad- except that phenols are basically in most fruits- apples, berries, grapes, oranges, peaches, plums, tangerines.  Jack's favorite foods. Awesome.  Not feeling the motivation on the elimination of fruits.  Sigh.  Jack's hair samples came back with high levels of mercury.  One of the urine tests should confirm this.  This was the opposite of what I was expecting- thought it would be Nate, if only one of them.  Jack had an incredible amount of dental work about a year ago due to an enamel defect, and now John and I are wondering about what type of fillings they used on him.  Further investigation of this is needed. 

After that appointment, I went home and put in a half day of work.  Went to bed early as today was a full work day, another md appointment for Jack, and squeezing in voting.  Then last night, the shit hit the fan.  Both boys were up off and on all night.  Sleep has been becoming more of an issue over these past few weeks again- Nate has been falling into a pattern where he wakes up at about 2:30 am and refuses to go back down- screaming until I come back in, like tantrum screaming.  I resolved last night that I was going to let him cry it out.  It usually takes 1 or 2 nights to get him back into his usual pattern.  Last night Nate had other plans.  After he woke up and I rocked him for a few minutes I put him back down and of course he started screaming.  Then I heard the usual thuds of him throwing everything out of the crib.  Then I heard a really big thud and a scream.  And Nate was out of his crib.  CRAP.  Just to be sure it wasn't a coincidence, I put him back in and watched him basically swing himself over the bars- no leverage, nothing to climb on, just sheer force of will.  And as I watched him I realized- I. am. completely. screwed.  I have no idea how I am going to keep my sweet baby in a bed.  We all know by know that his receptive language comprehension is extremely delayed, and I just don't think he will be able to grasp this concept.  However, safety first.  So down came the crib today- thank you so much John for doing this so I didn't have to sit and sob while I did it.  We were hoping to eek out another few months of him being our "baby".  It's all so bittersweet. 

Of course we had nothing prepared for this situation- so tonight he will be on his mattress on the floor.  A gracious mommy friend will be letting us borrow her toddler bed for a few weeks until I can get a bed for him. I don't wanna.  Does this really mean I don't have a baby anymore?  That just breaks my heart....

The good news is that this is what happened this evening since he didn't sleep last night....

The bad news is that I have no idea how long this will last, so I'd better hit the hay sooner rather than later.

Isn't he the most precious thing?  Sometimes I wish he could stay little forever...

Working with Jack's Teacher

Today my faith was officially restored in Jack's team at school.  It was very difficult to transition from the school where he attended pre-K to the new one.  It is a fabulous school- it's just that when you have a special needs child it's not just a new teacher, new kids, a new environment.  It's a whole new team- special educator, OT, speech.  These people (and of course the teacher) can make or break Jack's school experience.  And I certainly don't want him to have a negative experience, I want him to like school.  Thus far, I could tell that Jack's teacher has been a bit stressed about him.  I will not say overwhelmed, as she is a very seasoned teacher and I have no doubt she's worked with kids tougher than him.  We have been exchanging emails, and at first I was hearing what was wrong but not getting the impression of any suggested solutions.  Looking back, I think she was almost confirming with me that I see the same issues at home.  And after all, I am the one who contacted her about issues I presumed she was facing, just knowing my son.   I am not one of those parents who cannot see my child's faults, I am well aware of the challenges that teaching Jack must bring.  And I can empathize and sympathize with her.  Honestly, the first time a teacher brought Jack's classroom issues to my attention, I was worried and scared, but I was relieved. I was a first time mom, and when I tried to talk to friends and relatives about him and behaviors that were really concerning me, I would get responses like, my kid does that too, or YOU did that too.  And they weren't lying, each one of their children may have had issues with whatever behavior we were discussing- the problem is that Jack has issues with ALL of those behaviors.  So I walked around for close to 2 years feeling that something was off but feeling like I must be a moron because no one else was acknowledging it.  When I took him to Child Find, it was a relief to me.  It was not a happy thing, but they validated my concerns, and frankly some of the weight of all of this was taken off my shoulders.  I was no longer the only one who was aware of the situation.   

I have been eager to work with Jack's teacher, but unsure.  I don't want to seem like a pushy parent (unless it becomes necessary), or give her the impression that I don't have faith in her experience and expertise.  But of course, he is my son, and for every hour that she is observing some type of Asperger's or ADHD type behavior I have probably had a hundred.  She emailed me on Friday and said that she has been trying to give Jack some type of incentive to finish his work- that she gave him a stuffed crab and it seemed very effective, but that the other kids were of course jealous that he got to hold it.  She asked if I by chance had anything like this at home that I could send in.  I almost choked with laughter when I read that- do we have crabs?  HA  I told her I would be happy to send anything at all in to school that would help.  I also suggested a "short" pencil, since this seems to give him more control, and a fidget for circle time (basically a toy he can fiddle with so he doesn't feel the need to move around so much- like a kush).

I didn't hear back from her this weekend, not that I expected to.  In the meantime, we had our appointment with the pediatrician yesterday.  I took in examples of Jack's papers and we had a nice long discussion.  On a Saturday.  She strongly feels that Jack will eventually need to take some type of medication, while observing him she commented that it would be nearly impossible to get him to sit still in class.  Then of course she called him brilliant, and daddy decided to floor her by asking Jack to name word war II airplanes- which he did for about 10 minutes.  In terms of the medication issue, John and I are making our educated, informed decision.  I know that I am usually very open about everything on this blog, but this is one thing I am not ready to talk about.  I will touch on it eventually, just not right now.  I will say that I have complete confidence in our pediatrician and take her recommendations very seriously.  Ironically, I ran into Jack's assistant teacher from pre-K in the grocery store last night.  Please try not to be too jealous of the glamorous life I lead- my solo grocery trip is the highlight of my week and it's so nice and quiet on Saturday night (yes, I am pathetic, and proud).  At first she just said hi in passing, and I figured that was it.  But we ended up in line next to each other and she came over to ask how Jack was doing in kindergarten.  I gave her a brief summary, she didn't seem surprised, but she did express multiple times what a sweet sweet boy he is, and that she and the head teacher had been wondering about him.  She told me to be sure to let his current teacher know that they would be happy to talk to her. I was touched. 

I promise, this will all become cohesive :-).  I got an email from Jack's current teacher this evening.  And, while some of what she had to say will always be hard to hear about your child, it made me realize that she is really pulling for Jack and willing to go above and beyond to help him.  The fact that she emailed on a Sunday alone was very impressive.  She thanked me and said she would love for me to bring those things in (I am volunteering in the classroom tomorrow- gulp), she also said they would be sure to use the short pencil.  Not sure why that didn't end up in the OT notes from the previous school.  Oh well.  She told me they are really short on aides at the school right now, and that the special educator is talking about pulling him from the classroom to work with him.  She has also contacted the school psychologist, who is going to come observe Jack this Thursday and make recommendations about how to proceed in terms of assistance in the classroom.  I am hopeful that this might yield additional help for him.  Then she said the thing that made me realize that she rocks.  She told me that she had called Jack's teacher from last year to talk about him.  About what had worked best in the classroom, what his strengths were, etc.  I was so glad to hear this.  To me, these efforts really show a great deal of dedication and concern.  I know for sure that she is in Jack's corner.

I know that I should probably be more upset about how much Jack is struggling, maybe I am just numb, or maybe I am developing a thicker skin.  It helps that his pediatrician reminded me that with how smart he is, and how easily he acquires knowledge even with all of the hurdles he has to face, he doesn't even really "need" kindergarten curriculum.  He needs the socialization, he needs to learn classroom "decorum", etc.  Any additional knowledge is really just cake, as he is pretty advanced academically.  The fact that we are confronting these problems early will give us the time to find solutions for him behaviorally before he runs into real trouble academically. That being said, I just want my child to do well in school, and feel secure and accepted while he is there.  We have some serious work to do. 

Attention and Asperger's

Jack has been in kindergarten for almost two months.  I talked about my worries to some extent a few weeks ago in http://jackandnatesmom.blogspot.com/2012/10/feeling-like-crappy-mommy.html.  I want to touch on this further as it is becoming more of an issue.  I emailed Jack's teacher the same night I wrote this post, I hadn't heard a peep from her, and I was concerned.  Her response read something like- Jack's attention is quite an issue, myself, the OT, and the special educator are all concerned.  She stated that she is worried that Jack is going to start to lag behind- that she has to constantly move him from circle time because he cannot focus and cannot keep his hands to himself.  She agreed that he is by no means low academically, but said that she can rarely get an answer from him because he is so distracted.  He scores in her "middle level group" but cannot do the written work on his own- she feels that this is mostly due to attention and not his fine motor delays.  Then she called him a sweetheart. 

I knew this was what I was going to hear.  I was praying he had miraculously not been having issues, but I knew better.  It is the ultimate contradiction in terms.  Jack is so hyperfocused on some topics, like his airplanes, robots, hermit crabs, but cannot focus on tasks and cannot sit still to save his life.  I have done my research, and I know that it is very common for a child with Asperger's to also have characteristics of and often be diagnosed with ADHD.  I never wanted to label my child in this manner.  I feel like the diagnosis of ADHD is overused- I will admit that I often thought it was the way parents excused their "difficult children".  God has this experience brought me back down to earth.  There are some instances where I am correct.  And I do still believe that the diagnosis is overused.  But look at Jack.  He has many many difficult behaviors, yes.  Would I love to have a calmer child who doesn't constantly overwhelm me?  Of course.  That is not what is motivating me to seek some type of further intervention for Jack.  I am scared for him- I am so so proud of what a brilliant little boy he is.  He used to astound people at age two by identifying all of his letters and numbers, and naming a plethora of world war II fighter planes.  I have learned so much about bees, hermit crabs, orcas, etc from him.  And much as his fixations drive me a bit nuts, I wouldn't want him to be different- he's my little boy. 

I don't want him to fall behind when he has no reason to.  It would be one thing if he were challenged academically and needed to move at a slower pace for that reason.  But anyone who has ever met my son knows that this is NOT the case.  When he is listening, really listening, look out!  It goes back to what I was talking about with Nate the other day- not only does Jack learn, and thus far keep up with (if not surpass) his peers, but he does it through that "noise"- his sensory distractions, his fixations, his anxiety.  I can't help but imagine what he might be capable of if he wasn't constantly dealing with all of that. 

So I emailed his pediatrician, I forwarded the correspondence with the teacher to her.  She was not the least bit surprised- she may have a heavy patient load, but she has always treated the boys with a great deal of individual attention, has always emailed or called me back on the same day that I reach out to her.  And I feel like she has made the effort to "know" my children in a way that no other pediatrician we had ever did.  Such a huge comfort during this first uncertain and anxiety provoking year.  We are going in this Saturday to sit down and have a consultation with her.  All of us.  I am nervous.  I have a feeling I know what she is going to say- what she is going to suggest.  Meds.  This is a whole other can of worms that I was not ready to open- although I knew that it would come up sooner or later.

It is true when they say that parents know their kids better than anyone else.  I mean, ask my mommy friends, I had Jack "diagnosed" with, what did I call it?  Infantile OCD?  at age 14 months.  I KNEW.  And when I watch him sit and try to complete a task, I can tell that he is struggling really hard to focus. That it's almost painful for him.  Other family and friends, and even doting therapists of his have tried to chalk it up to his fine motor delay but that is not what this is.  I have the benefit of bouncing things off of our in-home daycare provider.  She is older and wiser, and was a teacher for many years.  AND she has worked extensively with Jack on tasks and fine motor activities. She has seen what I have, and experienced the frustration of a little boy held back by his own busy mind.  So I talked to her about this for awhile today- she talked about something I hadn't considered.  What this must do, or will do, to Jack socially.  Now I know that kids with Asperger's are supposedly not as cognizant of their peers, yada yada, and Jack may not yet notice when kids are annoyed at him or making fun of him, but he loves other people and wants to be around them in a way that I am very proud of.  I don't want to discourage this at all- I want to push him toward this.  I love the fact that he came home today and announced that his 3 best friends, Liam, Sean and Dakota had all died long ago and were now long-bone fossils.  A little morose yes, but awesome.  His inability to attend in school may not be effecting this too much yet, but it will.  It will affect all aspects of his life.  I want him to be happy.  So we are left with yet another tough decision.  Am I going to medicate my 5 year old?  I don't know.  I am opposed to it.  However, I am also opposed to making my child's life more difficult than it has to be, and I am also opposed to withholding something that might improve his quality of life greatly because of my own preconceived notions.  So I am going to go into the office and talk to the pediatrician armed with my research and with an open mind.