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!

One of Those Nights....

There are some nights where I need inspiration.  I turn to pinterest, like any modern women, ha.  I found some good statements that I thought I would share....they brightened my mood, and maybe someone else out there could use a little light tonight too

Ahhhh....there I feel better now, anyone else?  Sometimes, believe it or not, I can't find the words to express how I am feeling.  This helps

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

Natey is Learning!!!!

Nate has had a pretty good weekend- as always he is a pretty happy guy, but he went to his first birthday party in awhile on Saturday and did really really well. 

Also, this evening, I finally captured on video his color sorting skills.  This is really big for him.  Go ahead and put your volume on mute to avoid mommy's really annoying voice!

See daddy!!!! Multiple times I have called poor daddy upstairs to see this and Nate has refused...so here you go daddy...I wasn't kidding!!

Sometimes You Just Have to Say- WhooHoo!!!!

Today could not have gone better.  Yes, that came out of this cynical mommy's mouth.  Could not have been better.

Everything was acknowledged and all of it was addressed.  I would have maybe liked more OT services, but the OT does go to SIX schools, which is absurd, and with the amount of services he will be getting in other areas, I am satisfied.

Basic rundown of Jack's new services:
-He will continue to have an aide during any period of time when he is not receiving individualized services
-He will have a scribe for any lengthy assignments or any tests
-He will be placed in a quiet environment for tests and given extra time as needed
-He will receive 6- 30 minute speech sessions each month (was not getting ANY speech)
-He will receive 45 min with the OT one on one each month
-He will receive 1.5 hours a week in the classroom with the special educator
-He will receive an hour a day outside of the classroom with the special educator- 30 minutes of language arts and 30 minutes of math (this is over double what he was getting)
-He will be getting an adaptive technology assessment to see if he qualifies to utilize a word processor or something else for writing

Holy moly!  Seriously, could this have gone any better?  I mean, I could choose to feel sad that my boy needs this much, but I've already had that time, right?  Now, I choose to celebrate that the hard work has paid off.  Despite my underlying feelings of being an inadequate mommy, I am very proud of two things.  I requested the adaptive technology assessment and they said yes!  I was the one who requested the speech assessment- it resulted in another 3 hours of services for Jack each month.  After today, I really and truly feel like they are giving him the tools he needs to succeed in the classroom.  This will give him his best shot.  And we are getting his eyes checked next week.  And starting him on a new ADHD medication in mid-May that is having excellent results in kids with Aspergers. And our family therapist emailed me with the name of one of the best child psychologists in the area and told me that she is expecting an email from me.  GOOD DAY

The one dark moment of the day came when we had to change Jack's educational diagnosis.  It has been developmental delay up until now.  He is too old to carry that diagnosis any longer.  And he needed to get his new diagnosis as one way to qualify for these services.  The assessments all said the same thing, including one the teacher did, and one I did, as well as the assessments by the school psychologist.  Autism.  YES, I knew that, of course I did, but it will never get easier to hear your child being labeled with such a serious condition.  Once again, I am choosing to take this in stride today- he is getting what he needs and THAT is what matters.

Because I'm the Mama, that's Why

Think that'll fly as my blanket response in the IEP meeting???  No really, I will be reasonable and polite, repeat, I will be reasonable and polite....
breathe in, breathe out....

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

Trust Your Inner Voice Mamas

I have mentioned before that I felt something was "off" with Jack from a very early age.  That I was poo poo'd, even laughed at for expressing this.  First time moms are not taken seriously sometimes.  But here's the thing- these kiddos have only one mama- and that mama pays more attention to every movement, expression, and achievement that child makes than any other single person on this earth.  First time mom's may not "know" that much about parenting, not technically, but the instincts are there, the gut feelings are there.

I wish someone had told me that when I was embarking upon motherhood, and a person or two may have even said something along those lines, so most of all, I guess I wish I had trusted myself enough to follow my instincts.  I mean, Jack started receiving early intervention at age 3- that's pretty early.  But by Nate- well he started at 18 months.  Granted he wasn't trying to speak, but still.

My rambling really does have a purpose.  Something I have long observed in Jack is that one of his eyes doesn't seem to focus, or track as well as the other.  I have mentioned it to several practitioners and friends/family over the years, and no one else seemed concerned, not the pediatrician or his therapists.  So I kind of let it go, because, once again, I'm just the mom right?  About 3 weeks ago, the head of his private OT program worked with him for several sessions because Miss Sam was sick- she mentioned to me that she noticed some issues with visual tracking, and of course perception (which is also a sensory processing issue).  She even mentioned that she noticed what looked like a "lazy eye".  I made note of it and planned to contact an opthamologist, but hadn't done so yet.

I had the OT portion of Jack's IEP meeting today as the OT cannot attend on Thursday.   It turned out to be a really really positive thing- mainly because we were one on one and more information was shared in both directions because of this.  Ironically, Jack's school OT is now working Saturdays at Jack's private OT practice, so he now runs into her there as well.  This is awesome because she is able to observe what Miss Sam does with him first hand, and she has been working with him since he was about 3 and can get him to do just about anything.  So we were discussing the assessment results, which on the OT front are pretty dismal- difficulty with prewriting strokes, many many sensory sensitivities, inability to attend, to interact appropriately and work with peers, just to name a few areas.  Then she mentioned that he seems to have the most difficulty with drawing diagonal lines, and that he doesn't seem to track very well with his eyes. That it's like his visual fields are off.

That made two people in the last month who FINALLY noticed something I have been concerned about.  My mom was at our house today and I mentioned the eye issue to her- her response?  "The right one??"  Sheesh!  Now I am freaking out, I should have intervened long ago.  What if his vision is causing some of his sensory issues?  What if he is having trouble writing because things are distorted?  I feel terrible.  So needless to say, we have an appointment with a pediatric opthamologist from Wilmer Eye Institute at Hopkins next week.  We need to get to the bottom of this. 
If this issue truly exists, it could be mainly two things:
amblyopia
http://en.wikipedia.org/wiki/Amblyopia


nystagmus
http://nystagmus.org/new/aboutn.php

Right now I think amblyopia (strabismic) sounds more likely.  Either way, we'll get it figured out.  And we can adjust his interventions appropriately. 

The lesson to be learned- always be the freaky mama who questions everything!  What's the worst that can happen?  You're wrong and look like a moron?  Who isn't willing to look like a moron for their kid?  I sure am, and have on many many occasions! 

Warning: Fireworks Ahead

Bahahahaha!  I was just scanning all of Jack's new school assessments (psych, academic, speech, and OT) and his IEP draft in order to send them to his IEP advocate and a warning popped up on the computer "this is a large amount of information to process, computer may become sluggish, are you sure you wish to proceed?"

How the hell did computers get to be so intuitive??  NO, I do not wish to proceed computer, thank you very much.  Unfortunately, last time I checked, I wasn't getting a choice in this. 

Some mom's open their kids' backpacks and discover half eaten sandwiches, other kids' work, a misplaced toy.....I opened Jack's this afternoon and discovered my own personal hell waiting in a pretty little manilla envelope.  The results of all of Jack's assessments from the past two months.  And a draft of the "new" IEP.  I have only read 1.5 of the assessments so far, I can't even look at the rest just yet.  It's so overwhelming that I am actually too overwhelmed to begin to describe it.  What it's like to look at all of your child's weaknesses layed out before you on about 70 pieces of paper.  Matter of factly stated.  Just another day at the office for these guys.  And I can relate on some level- kind of like when I was working in oncology and would see a patient's blood counts come back from the lab showing that they had blasts (which means their leukemia was back).  Yes, my heart would sink; yes, I would feel bad; but then I would go home and try to forget about it until my next shift.  Kind of like that, but from the education angle.

They can go home and not think about these assessments too much.  Meanwhile, I am sitting here with what feels like drums beating in my ears and the intense need to scream.  Just scream. 

So far, I read the OT assessment.  His school OT can't attend the IEP meeting next Thursday so I am meeting with her on Monday.  Jack's OT assessment listed his many deficits and sensory issues.  And new goals.  And they are so basic- diagnonal lines, coloring in the lines (oh could we have a debate on that one), cutting curved lines, copying prewriting strokes.  Yes, at the end of kindergarten we are still working on prewriting strokes.  So I email back and say, ok, well what are the changes in services to achieve these goals?  Answer- there are no changes.

OK.
Oh Linda!!!!!  (that's the advocate btw)

I am terrified to read the rest.  Because I think my head might explode, or at the very least, I may have a significant temper tantrum.

My mommy guilt is working overtime, I can't stop questioning my parenting.  What the heck am I doing wrong that my almost 6 year old still has such difficulty grasping a pencil?  That he can't follow simple directions or attend to the teacher for more than a minute?  It would help, I guess, if I had a neurotypical kid at home, it would be a reminder that most kids explore these things on their own to begin with- that it comes pretty naturally most of the time.  I colored and drew with kids when I was a nanny all of the time.  None of them avoided it the way Jack does, or had difficulty pressing down hard enough to make their drawings show up.  On an intellectual level, I get that this is part of his developmental disability.  On an emotional level, I feel like it's the universe screaming that I am an inadequate parent. 

I am going to back away from the assessments for the night, let the advocate get a look at them, and take some deep cleansing breaths.  Just because there are no new OT interventions in the DRAFT does not mean that they will not end up in the final IEP.  I learned that lesson last time. 

One to remember....one week people

Trending.....

OK, so today he said "waffle".  Clear as day, to the point that John and I went running down the stairs as fast as possible to make said waffle happen.  His babbling is sounding more like words- a lot more "I want", "I don't want", "go".....often we can't understand the end of the phrase, but the intent is certainly there.
,
This evening I took his desk "dungeon" as I like to call it (because there is no escape, so he HAS to focus) to his room.  I feel guilty making him do more structured activity after he is gone from 8:30 until almost 5 in structured settings, but sometimes mama needs to do a little checking up of her own.  I smell some major progress in the last month.  We have a color sorting peg board and he was definitely sorting them appropriately by color, with some complaining in between.  He was doing pretty well matching bears (thanks Jo) and was doing really well with his M&D shape puzzles as well.  He's pretty good with puzzles in general.  Once I freed him, he played with me pretty appropriately with his elephant ball popper and car ramp.  It was what I would call "productive" play time, aka I didn't have to barricade him to "make" him play.

Maybe this video will give you a bit of an idea of the improvement in his interaction since about a month and a half ago.  I'll put the old one first, then tonight's. 

Today....

Jack Put It Best....

Nate has had a couple of pretty good days.  Words have been flowing quite a bit more freely than we have heard, well ever.  Yesterday he was mad when I went to get him dressed for school and he said "I no want get dressed"  or something close to that.  Last night John asked him if he wanted to go upstairs with mommy and he kind of repeated it.  He was trying to say "one two three" with Miss Gwen during his session.  He asked for more song at bed.

I am happy about it.  But over time I have learned to take each day as it comes, and all progress as a "good day" until Nate proves otherwise.  A year ago, I would have felt like "here we go!".  That this was "it" and Nate was going to start making huge leaps like some of the other kids.  I have set myself up for disappointment too many times, so now, I try to just smile and think, yes, he's in there somewhere.  I restarted his leucovorin after hearing one of the doctor's lectures on cerebral folate deficiency and being told that hyperactivity on leucovorin is actually a good sign.  I started at a smaller dose to begin with and will gradually increase, as treating cerebral folate deficiency is showing great promise in autism research.  Basically, I could dump a truckload of folic acid on Nathan and it might not make it into his brain, because he lacks the ability to transport the active form across the blood-brain barrier.  The treatment for this is folinic acid (a further broken down form of folic acid).  Which by the way, is what leucovorin is. 

There are some very interesting articles on this if you follow the link below:
http://www.rossignolmedicalcenter.com/articles/


So we are doing that.  And after listening to Dr. Anju speak, I also started Nate on something called "yeast aid", which contains multiple natural ingredients that support the immune system and help control yeast in the body, things like olive leaf extract, goldenseal (thank God he will now pass his drug test, lol), oregano, and cranberry extract.

http://kirkmanlabs.com/ProductKirkman/112/1/Yeast-Aidandtrade;-Hypoallergenic/

So those are the latest things I have changed.  Oh, and John has started doing some "juicing" as well.  His first John driven intervention- whoot whoot! 

I am watching, and I am waiting.  I am not allowing myself to become too excited at any positive changes- they could be transient.  I of course really really hope they are not.

Jack said it best this morning.  I asked him to go open Nate's door because I could hear him in there awake.  Jack said to me "I like Natey, do you?"  I answered "of course I love Natey".  He then said "I just have to wait right?"  I asked him what for, although I already knew the answer, he has been saying this since Natey was born.  And he said "for him to get bigger, so someday he can talk to me, right?".  He was looking at me so earnestly, so obviously thinking that Natey really is still a baby, that I felt the need to sit down with him for a few minutes and explain in more detail than I have in the past that Natey is having a lot of trouble learning how to talk, which is why we send him on the special bus every day.  He seemed to get it, and in the end, he is right, we do just have to wait.  We can try everything under the sun, but in the end, we can't control this.  Just have to pray and wait. 

You Have to See it To Believe It....

Just in case you thought I was kidding about the message that pops up when you enter autism as a specialty......

Gender	<None>FemaleMaleGender      Topic specialty
Topic specialty	<None>Adoption IssuesAlcohol/Substance AbuseAnxiety IssuesAutismChild/Adolescent IssuesCultural IssuesDepression IssuesDomestic ViolenceEating DisorderFaith Based CounselingFamily CounselingGender/Sexuality IssuesGrief And LossHealth IssuesMarital/Couples CounselingPsychiatrist/Medication

Alert! You have chosen a specialty which may not be covered under your plan. Please call your personal advocate for more information, using the number on the back of your ID card.

Added Benefits? Really?

Sigh.  Mommy is annoyed, really, really annoyed. 

Last weekend when we were at the conference, I visited a booth for a private ABA provider- their flyer said that they accepted Cigna.  We have Cigna!  Goody!  I was talking "insurance talk" with the representative and she said that although they have a contract with Cigna, they have never had a client successfully get services with this insurance.  Well, I am an insurance case manager right?  So I thought I would at least explore.

The first thing I checked was the state law.  Discouraging fact #1- Maryland has no mandate for insurance companies to provide autistic children with ABA (applied behavioral analysis therapy).  It has gone before the legislative session multiple times and never passed.  Let me explain why this is a travesty.  The medical community at large still does not acknowledge autism as a medical problem.  It is considered strictly behavioral.  Therefore, the ONLY therapy that said community recognizes as legitimate for autism treatment is ABA.  This is why OT has to be billed as developmental delay and not autism.  OT would not be covered for autism.  And speech has to be billed as speech delay, not autism.  None of these services are covered for autism.  A neurology consult similarly would be billed as some type of neurological deficit, but not autism.  The insurance would not pay if it was billed as autism.  So to discover that the one widely accepted therapy for autism is not mandated in our state made me, well, really really pissed.

OK, well we have private insurance, right?  It doesn't have to be mandated for them to cover it.  So I called the ABA company and asked for the CPT codes they use for ABA, then called our insurance company.  No one knew what ABA was- awesome.  I realized that this was because I hadn't selected behavioral health.  Mainly because I KNOW that autism is not just a behavioral problem- it's roots are deeply based in medical issues.  Oh well, so I called back and asked for behavioral.  When I asked about ABA, the representative asked, are you worried that your child might have autism?  I kind of laughed and said no, my child does have autism.  She gasped and said, don't you have an autism case manager?  Ha.  She further stated that I NEED a case manager for my son because there are "additional benefits" for children with autism.  Well this is news to me, because when I do a provider search on the behavioral website and enter "autism" as the speciality, big blinking letters pop up and warn me that "this service may not be covered for the diagnosis of autism."  Which, frankly, is why the insurance company has not been aware of my kids' autism.  We don't need any added challenges.  Anyway, the rep said she was going to assign us to a case manager and "expedite" it.  I guess that's what you get when they know you're a case manager too.

OK, so I got sucked in.  Maybe they ARE going to help.  I mean, they don't have autism case managers sitting there to do nothing do they??  So I was happy to hear from Holly today.  Until she said that ABA is not a covered benefit for the Cigna plans in our state because it is not "mandated".  Funny, because if medical necessity is shown it is covered by MEDICAID which, I pay for.  But not by my private insurance, which incidentally I also pay for.  She went on to tell me that our family qualifies for psychotherapy- extra sessions, due to our children's conditions.  Jackpot baby!!  Not.  I laughed and said, funny, because my therapist informed me last night that my visits are being audited.  I guess I have been seeing a therapist TOO regularly?  I told my therapist that I would be glad to "turn on the crazy" if needed, or explain to them that this process has taken "a bit longer" due to both of my sons both being diagnosed with autism and our first "therapist" (who was "in network" by the way) losing his license due to misconduct in the middle of our "work". So I'm awful sorry for the delay.  If only I had known that having autistic children means I get to talk to someone MORE I would have come forward with this long ago.

Sorry for the bitter tangent, but wait, I'm not done!  I go to look up the "forbidden" autism specializing therapists, knowing that they are no longer off limits, and lo and behold, there are about 10 ABA therapist on the freaking list!  So I gave Holly a jangle and said, ummm, what the heck is this?  She explained that even though they are theoretically "in network"  we can not use them because we don't have the benefit.  Ummm....doesn't that make them "out of" my network???  So now I plan to search for an ABA therapist who also happens to be LCSW or an liscensed psychologist.  But after the experience that John and I had last year, I am very weary of allowing my children to have therapy.  I just don't trust therapists in general after that.  We have been very fortunate to have the person we are currently working with, but that came only after a wretched experience with someone that did way more harm then good.  I think I will insist on being in the room IF I take them to a non-ABA or covert ABA therapist. 

Well that's an hour of my life that I'll never get back.

A Whole New Ball Game

Just when you thought you were safe....

Haha, well I won't go that far.  What I mean is that I was feeling kind of like I was aware of all of the "areas" I need to pay attention to.  The boys' educational needs, IEP's, medical needs, supplements, infections, therapies, various activities, meetings, etc. 

Not so fast.  A new area has presented itself.  And it's a huge blessing- or will be.  Right now, it's more work.  I have been able to explore a bit more lately in the world of autism.  And it is a whole other world, where parents become biochemistry experts, IEP advocates, and therapy providers.  And apparently, we also become grant applicants. 

So this is great news right?  There are grants available for autism families!  And as always, I have no freaking idea what I am doing!  So I have been picking the brains of our local TACA chapter leaders, Cisco, the special educator who runs the Cisco Center, and this evening I sat down and wrote, and wrote and wrote.  Next step is to beg for letters of medical necessity and invoices for the services I am requesting.

The upside?  MAYBE I will be able to send both boys to the Cisco Center for the summer if these various grants come through.  Or at least for part of the summer.  Nathan has an extended school year, and will thus be at his ECI program for the month of July.  And I plan on sending Jack to the local county camp for the month of July.  But in June and August, maybe, just maybe, I can send them both full-time.  And Nate can continue in the afternoons during July too.  Keep your fingers crossed that mama does this correctly!  What a huge relief this would be!

Dusting Off and Getting Back Up...



Right before we left for the TACA conference I got an email from Nate's teacher.  It felt like I was being dealt a huge blow.  And I can't really explain why.  In her email, she said that she was trying to "plan" for next year.  And that she felt strongly that Nate would benefit greatly from, wait for it, "additional adult support."  In case you've missed it, I have been all but begging for this for Jack this entire year (and yes, we have it).  And now it's being handed to me on a silver platter for Nate.  1:1 support in the classroom.  So why does it feel so unbelievably crappy?  I have been struggling with that for the past several days.  I think I was just hoping that Nate could get through this program without needing extra help (any more than he's already getting).  Frankly, I didn't even know that extra help in a classroom that is already special education by definition was an option.  I thought that he was getting exactly what he needed.  And now I am hearing that it's still not enough for him.  It could be worse, he's not being transferred to the "special school".  Not yet.  They apparently still think that he can succeed in his current setting.  So that's good.  But as with any discouraging news related to the boys, it feels like a knife in my heart.  Of course I want to hear that he's making great strides and blowing his teachers away.  So I need to bring my expectations and hopes down a notch....for now.  And I need to refocus on what I can do. Time to pick myself back up and get moving.

This past week was excellent in terms of gaining new knowledge.  As I mentioned in my last post, I feel pretty overwhelmed.  I feel that familiar panic that comes on whenever I realize how much I want to do in my efforts to help the boys.  And I want to do it all RIGHT NOW.  I know this is of course impossible.  Step by step. 

One of the first things we need to do is take our gluten and dairy free living a few steps further.  Eating crappy gluten and dairy free junk food does not help the kids much more than eating regular stuff.  Especially with Nate's yeast issues.  As Dr. Usman said at the conference, we need to go "caveman".  What does this mean?  Think meat, protein, veggies, fruits. Fewer pretzels, cookies, sweets, snack food in general.  Carbs are carbs, gluten free or not, and yeast feeds on sugar.  That was the premise of Nate's previous regimen, the specific carbohydrate diet.  I'm not planning on taking it back to that level.  Just fine tuning some.

Another huge issue is our food source.  We need to be very careful about this- these kids are clearly unable to clear toxins in the same way as the "typical" kid.  Things just affect them more.  Meats and eggs need to be specifically growth hormone and antibiotic free.  I mean, I am supposed to give Nate nystatin when he is on antibiotics right?  So if he is getting meat or chicken that has been given antibiotics, he basically should just be on nystatin forever?  We have found a dairy, courtesy of a mommy friend, that delivers fresh meat, eggs, chicken, dairy, yogurt, butter, etc as often as weekly for a less than $5 charge.  I "applied" for service today, we just have to ensure that we are on one of their routes.  Also, plan on seeing me at the farmer's markets this summer.  Even organic fruit that is stored in plastic can be leaching chemicals from the plastic.

Which brings me to my next point.  We are going to eliminate plastic as much as possible.  And this is for selfish reasons, not because I am protecting the environment, although that's a nice added bonus.  It's because of all of the chemicals that can leach into the nice fresh food we are providing.  Yes, most things are bpa free now, but there are other chemicals in plastic, plenty of things to avoid.  Why go to all of the trouble of going organic if we just pop this healthy food in plastic?  Doesn't that defeat the purpose?

I never thought I would take this type of intervention so far.  I scoffed at all of the "clean living" stuff, the green containers, the safe cleaners, etc.  But Dr. Usman said something that just keeps echoing in my head.  I think it will have the same effect on my readers.  She said "There is no such thing as a genetic epidemic."

It would take hundreds of years for the incidence of autism to increase as greatly as it has in the U.S. in the past 20.  Here are a few articles related to this:

http://www.autismcharlotte.com/reports/

http://www.foxnews.com/health/2013/02/05/can-autism-be-prevented/

http://americannutritionassociation.org/newsletter/dr-usman-autism-0

So once again I am confronted with that whole darned concept of....why the hell not?  How much more effort will it take for us to make these changes?  And as always, one of my biggest considerations is, will this hurt them?  Absolutely not.  It will help them, and it will help me and my husband. 

Some people think that all of these theories are ridiculous.  I beg of them, please give me some other explanation for what is going on with my boys.  Please tell me what YOU think is going on.  That's right.  No one seems to have a logical explanation for the explosion in numbers.  And I used to think "oh it was just under diagnosed before". Bull pucky.  If someone had seen Nate 15 years ago, they would NOT have looked at him and thought, oh he's just a late talker.  He would have been diagnosed.  No doubt in my mind.  It is clear to me that the incidence of autism truly is increasing at the rate that's being reported.   So bye bye antibiotic fed meat, plastic, carbs.  If you are on the list of possibilities, you are not welcome here any more!

Long Road

So here I am, exhausted and all I want to do is write.  Where the heck did that come from?? 

Today was incredibly overwhelming.  Let me start by saying that John and I had a lovely evening last night and we had 5, count them, 5 meals together with no kids.  Wild times! 

The conference we went to today started at 8am and went until nearly 6pm  We heard some of the best autism specialists in the country speak, we heard the founder of TACA, Lisa Ackerman speak.  She's awesome.  And we both feel completely overloaded.  On one hand, all I can think is, "my God we have so far to go, so much left to do for these boys".  On the other hand, I think "thank God there is so much left to try for the boys".  At some point in the near future I will go into some of the new directions we plan to take (think south- like maybe Florida), but tonight I don't have it in me. 

I am feeling emotional.  And thankful.  Today was my 37th birthday.  You would think that an autism conference would not necessarily be the way to go for a festive day, but for me, it was really, really good.  I felt less alone today than I have in a very long time.  All day, I could look around and see the faces of others going through the same things as us.  While it makes me sad for them, as I wouldn't wish this on any parent or child, there is an incredible sense of community, just being in that same room.  And this common thread did not end with the other attendees of the conference.  It extended to the presenting providers.  It seems that these amazing, committed physicians all have children with disabilities, two of three had children with autism.  Well that makes sense, right?  Their passion?  Their willingness to speak for free?  How inspiring, and how reassuring to know that these individuals are on the road WITH us. 

And I was the proud spouse of one of maybe 20 (of about 120 attendees) of the husbands who attended the conference today.  John is fired up too after today, and that feels amazing.  Our family feels amazing.  Tomorrow I will begin new lists, and start prioritizing our next interventions.  But tonight I am just going to bask in our new knowledge and try not to over think things.

Oh, and I got a DRY ERASE supplement schedule board! For each kid!  That alone made attending the conference worthwhile!

A Year Wiser....

This weekend is a very very special anniversary for John and me. In some ways, even more important than our wedding anniversary.  This weekend it's been a year since we began our Retrouvaille journey.  See this post for a refresher:
http://www.blogger.com/blogger.g?blogID=5362113364349699326#editor/target=post;postID=7193241725232425701

What a year it has been!  I am so proud of us!  I am so proud of our family.  And I know that we are both in it for the long haul. 

We are going away today for the first time since we had children, just the two of us.  Unless you count our Retrouvaille weekend, and we do not.  Thank you mom and dad for watching the boys.  It's only one night, and we are going to the TACA conference, but hey, away is away.  Meals without kids are meals without kids.  A full night's sleep is- well, it's heaven.  And the craziest thing is that this conference is taking place in the exact same town in Pennsylvania where our Retrouvaille weekend was held.  Malvern!!!  Not even that big of a town! 

We have learned so much about the true meaning of love, and real commitment.  We know each other in a way that we never did before this experience- and maybe that's what it's all about.  You can let a crisis in a marriage and family be the end or you can take it, recenter yourselves, learn from the situation, and bam, you may just find yourselves at a whole new level in your relationship.  Totally. worth. it.

I stand by this, now more than ever

How About Action??

Here we are again- Autism Awareness Month, and more specifically today is the "day".  I feel much much differently about it than I did last year.  I feel much more like a "down in the trenches" autism mom, more seasoned, more "aware".  Aware of the kids' needs, the costs involved, and the barriers involved.  Our family has been through it, learned more than we ever could have imagined, and adopted a very different way of living in order to accommodate our kiddos.  Bottom line- WE REALLY GET IT.  And because of this, I am no longer content to "celebrate" World Autism Awareness Day.

Don't get me wrong, it's very important for society to acknowledge this growing (exploding) trend of autism diagnoses.  I am glad that any type of Autism Awareness Day exists.  It's just not enough.  I mean, light everything up blue (pretty), buy jewelry and t-shirts (especially do that since some of the money likely goes to research), but don't stop there.  Here are some really very minor ways you can actually contribute to the cause:
http://www.tacanow.org/ways-to-help/autism-awareness/

I am a big fan of TACA.  Talk about Curing Autism.  I think some people hear this and assume that they think autism is like the plague, something to be eradicated.  But as I have been to more and more meetings I have come to see that the goal (right now) is to find ways to alleviate the symptoms that disturb our children, to help them succeed to the best of their abilities without their sensory or attention or communication issues getting in the way.  And yes, it does involve medical intervention.  And behavioral intervention.  This organization also provides invaluable resources for parents, such as information on any tax benefits available to parents of autistic children (not many) or a full list of brand names of items that are gluten and casein free, or a comprehensive list of providers all over the country.  And support, which is of course, huge. 

TACA is calling this Autism Action Month, and I am on board with that.  We all need to take action- to spread awareness, to show acceptance and to raise funds for treatments, as families are weighed down tremendously by the financial implications of having a child with autism.  Or two.  What are we doing as a family for Autism Action Month?  Well, we raise awareness every time we go out in public.  But John and I are attending an autism conference in Pennsylvania this weekend.  We are educating ourselves on the best ways to help our boys.  And we will continue to attend TACA meetings, and to befriend other autism parents.  And for me, one of my biggest actions is this blog.  Anyone who reads my blog regularly and truly listens has become, by default, autism aware.  Now, I am challenging you to take action- donate, walk in a walk, or run in a run, or simply invite an autistic child over to play (mom can stay :-)).  You have no idea how much that would mean to the child and especially to the parent.  Acceptance isn't just about refraining from scowling when an autistic child has a meltdown in public (although that's a great start), it's about welcoming individuals with autism into your lives.

Nerves

Tomorrow begins a new chapter in our lives.  I am taking Nate to "daycare" tomorrow.  And I am a bit of a mess at the moment. 

I know it's the best thing to do for him- to have him in an environment where the people are trained to help him.  But this mama can't stand the thought that he will be confused and scared initially.  And he won't have any way to communicate that.  Other than screaming of course. 

Eventually, I will likely begin to enjoy having a little bit more freedom.  Working full time from home and having the kids in the house is definitely advantageous in many ways, but it also takes away many of the positive aspects of working as well.  Such as the time for one's self, the ability to run errands, the privelege of being able to focus on work.  I am very proud of myself for handling this particular juggling act for so many years, but the truth is, it has made me a little bit crazy.  My husband just doesn't understand how I am constantly planning my next 15 moves- everything is mapped out, continously reassessed, and mommy is, well, she's tense, all the time.  There is no other way to accomplish what I have been doing.  Or at least I haven't found one.

I will be driving Nate to daycare after the bus drops him off tomorrow, mainly because the new bus stop is not yet "official" for him, that can take awhile.  I am dreading leaving him.  I have really loved our lunches and I will miss him so much.  I just never thought I would be packing my three year old a lunch, or putting him on a bus for that matter.

On a positive note, we have been working with Nate on the 3D shape sorter ipad app for about a month.

http://www.realkidsapps.com/games-12101101/

Tonight it was like a little light went on in my boy's head.  He has been moving the shapes over, but I have been having to very actively direct him on which shape to try, when to turn the cube, etc.  Tonight he was suddenly figuring it out on his own, and attempting new shapes when I would just say "uhoh no go".  He was definitely basing it on matching the outline colors as well.  He kept restarting the app when he was done, he was having fun.  And eventually he started saying "uh oh no" with me, or something close to it.  All of this for a little bit of confetti when he finishes.  Really really cool to watch the wheels in his head turning.