Fears

If I had a penny for every second I spend worrying about the boys I would be able to afford ALL of the care they will ever need.  Right now, Nathan's needs are at the forefront of my mind and I am having difficulty thinking of anything else...

You see, I got a report in the mail from Kennedy Krieger yesterday.  From the testing we had done in May as a part of the REACH study.  When a letter begins with "The scores from these evaluations should be viewed with caution due to Nathan's young age.  Young children do not always respond at their best when influenced by variables such as unfamiliar settings, hunger, minor discomforts and shyness,"  it's not usually a good thing right?  But of course then it says "Nathan coped well with many of the demands placed on him.  He had difficulty participating in some clinician directed tasks; however, he was able to complete all attempted assessment tasks with support and reinforcement from his parents and the clinician."  AKA, he performed well given circumstances.  

They performed 3 different assessments on Nate- the Mullen Scales of Early Learning, the Autism Diagnostic Observation Schedule, and the Communication and Symbolic Behavior Scales Developmental Profile.  They only gave us partial Mullen Results- basically enough information to let us know that he qualified for the study (the one we could not logistically participate in), but not enough to give us the full picture.  What they did send us was devastating. To the point where I just told my husband about it maybe 30 minutes ago....I needed a little time.  As I have said in the past, we know he is severely delayed, communication at 15 mos when he is 30 mos old, etc.  But when numbers are pushed in your face....well, see how it makes you feel...
these are the only 2 they gave us:
visual reception:  percentile 5, age equivalent 23 months
receptive language:  percentile 1, age equivalent 15 months

1st percentile?  Really?  99 percent of children are at a higher performance level?  Here is the language that went along with that number
"In the area of receptive language, Nathan performed in the very low range.  Some of the tasks he completed include:  identifying an object when named, giving a toy to the examiner when asked to do so, and demonstrating comprehension of a basic question.  He did not follow single step directions without gestural cues, identify body parts in a picture, or demonstrate comprehension of questions by pointing to pictures in a book".  "Based on observation, Nathan demonstrated difficulties in communication and reciprocal social interaction skills.  He demonstrated delayed expressive language skills (eg, spoke less than 5 words), inconsistently directed vocalization toward others and inconsistently used eye contact.  He did not point to objects, respond to a social smile, or respond to joint attention."
Now the positive:
"He shared enjoyment during a social interaction routine (tickle game), initiated a 3-point gaze shift to share interest in a toy and gave objects to others to request assistance."

I would like to say that I look at this information and think, that's not my kid!  He can do all of that!  But, it's accurate.  It's freaking accurate.  Other than responding to a social smile and responding to joint attention, which he does do for mommy and daddy,.  The only other thing they say is "Results from the evaluation indicated that Nathan met our research criteria for autism."  Great, thanks.

So here I sit again, completely consumed by the numbers.  Everyone seems to be so great at determining what is wrong (how he is not developing, that his head circumference is too large and grew too quickly), but why can't anyone fix it??  Why?  Where is the autism task force?  Because I don't know how people live through watching their kids struggle like this.  For years.  With hundreds of hours of intervention and very little progress.  I know, I know, I am supposed to only look at the small measurable steps and outcomes.  That is impossible to do all of the time.  I manage most days of the week, but when something like this pops out of your mailbox....it sends you reeling, just no other way to put it.

I look at all of the things we are doing....the supplements, the diets, the shots, the studies, the ABA, the OT, the floor time.  Are we spinning our wheels?  When is my child going to say CUP???  Or night night to daddy?  Neither of us verbally admits it to each other, but we have both developed "benchmark" words.  Things that we have consistently worked with Nate on- and I am talking a year.  Cup Nathan, say cup.  Tell daddy night night.  Each has happened maybe once.  In a year.  I don't mean to sound ungrateful, I mean at least he has 5 words right?  He's not completely nonverbal?  But when I think about what Jack could say at this age it just breaks my heart.

I want to freeze time, because a lot of services that he is entitled to now will not be available to him when he is older.  What if things don't improve?  Where will he go to school?  Will we be able to afford it?  Anyway, sorry for the negativity, but really, it's inevitable at times.  As positive as I try to stay about things, they really are not so great for him right now.

Go the Bleep to Sleep!

So I just told my husband it would be best not to talk to me this morning.  Last night was ROUGH.  Our children....well I am convinced they are trying to kill us.  Slowly.  Tortuously.  There is a reason that sleep deprivation is used as a form of torture.  For the past 5 years, John and I have been living proof of why.  I was one of those parents who when they first heard Samuel L Jackson's narration of Go the F*** to Sleep, actually fell asleep!  Ha, just kidding, but there have been many times that I have wanted to read it to my kids, no matter how inappropriate.   If you are easily offended, please skip the video....after last night, I am a bit out of it.

Jack, who is FIVE, sleeps through the night approximately three nights a week.  Seriously.  Luckily, when he wakes these days, he is usually pretty easy to get back down.  That didn't used to be the case.  Let's just say that when he was about 15 months old I spent approximately 2 months sleeping on a mattress on the floor of his nursery trying to get him to accept his crib.  I have read all the sleep books.  Tried all of the methods.  Notta.  Crying it out?  I did that once.  An hour and 20 minutes in he was hyperventilating and so was I.  So to put it mildly, we have struggled with this issue a lot.  And of course, until I learned more about Asperger's, I didn't know that sleep disturbances are a very common symptom.  I remember at one point when Johnson and Johnson came out with their lavender bath products and advertised "helps baby sleep better", John looked at me with a ridiculous amount of hope in his eyes.  Our kid smelled fabulous when he was screaming in the middle of the night.  Now we use epsom salts...I don't really think that's doing anything either.  Next step will be melatonin, which I have heard wonderful things about, but we shall see.  I mean this is the kid who gets hyperactive with benadryl, so who knows.

Nathan....oh Nathan.  He has always been the "good" sleeper.  Since the day we brought him home from the hospital.  Until now.  Last week when we were in Bethany he boycotted the pack n play, and in the interest of everyone sleeping and having a nice vacation, we let him into bed with us.  Of course this was a big mistake.  Of course I knew this.  Because he may have autism, but more importantly, he is 2.  And he is becoming Mr. Obstinate.  Now, I am told by his ABA teachers, doctors, etc, that being "naughty" is a really good sign (he is thinking independently, knows what he wants, is communicating, etc) and in theory I completely agree.  I invite all of these parties to join me in the middle of the night.  Mr. Nate has been up since 2:30 this morning.  Yup.  Good luck to those teachers today.  We have been very lucky, he hasn't figured out how to climb out of the crib yet, but I can feel it, it's coming.  I keep finding him screaming with his little leg up on the rail, his curtains pulled into the crib, all toys out...he is plotting, haha.  So of course about half an hour in to Nate's shenanigans we hear a thud and looked at each other "oh crap"....and then running.  There's Jack!  Even at 3 am he runs into the room...."mommy, daddy, Jack and Natey, we are all P-38's and we are all black and is your propeller spinning, how many blades do you have, are you taking off?"  Ughh.....daddy got the easier end of the deal last night, he took Jack back to bed and they were both almost instantly back to sleep.  Nate had lots of fun kicking me in the head, pushing up my shirt and grabbing my post-baby belly (he loves my skin for some reason, great for the self-esteem,ha) and throwing his cup at me and saying "more" over and over again.  Finally at 4:30 I decided that he was going to have to cry it out.  And he did.  Out, and out and out.  He never calmed.  On a positive note, he was screaming "go" quite a bit and when I went in to reassure him and was leaving he yelled "no go".  Amazing the language that pops in when he's really angry.  

So as I am writing this, both boys are lying on the floor with droopy eyelids.  Fantastic.  Bet their sitter will get a great nap out of them today.  And then they will be ready for more fun tonight.  To the IT department at my job....if I should call today and tell you that my laptop shorted out because I spilled a glass of water on it I am lying.  I actually drooled on it while holding my eyes open with toothpicks.  Sorry about that....

Yet Another Crossroads...

Deep breath.  This post is not about Autism.  Well, I take that back- everything in our lives is about autism in  one way or another now.  All aspects of life have been affected by our children's needs, and have been for years now, even if we have only been able to acknowledge this recently.  This blog has really become my therapy, my way of venting, being heard.  And I wasn't going to talk about this here.  I really wasn't.  But both my husband and I think, know, that it's too important to go unsaid.  And I don't feel that I would be representing myself accurately as a person or a mother if I completely excised this part of my life from the blog.

Three months ago I would have never believed I would be writing this.  Not the blog, but this specific entry.  About marriage.  About family.  But here I am.  Once again, deep breath.  This has been the hardest year of my life, and I believe my husband is on the same page.  And when I say that I didn't think I would be writing this, it's because I thought we would be separated by now.  But God had other plans for us.  Our marriage has been feeling the toll of our kids' special needs, but it has also been cracking due to our individual reactions to the revelation that our boys are challenged.  I am not blaming our problems on our children's needs, but I am saying that we were completely unprepared to deal with this.  I mean, who is prepared?  But in our case, we went in completely opposite directions when faced with the news.  My husband withdrew, really stepped away from our family as a whole.  Went down a destructive path.  I, on the other hand, became a woman obsessed. A woman consumed by "fixing" this "problem".  In our own ways, we each abandoned each other.  Now, as a "helpful" family member "reminded" us, we have had problems in our marriage for years....and of course we are aware of that, more aware than anyone else.  I would say that it started about the time our first child was born.  About 3 years after we got married.  I didn't know how to be anything other than a mom and a nurse.  I couldn't fit being a wife into the mix, just didn't know how to wear so many hats.  And my husband didn't know how to fit fatherhood into his life.  And so we drifted....and struggled.  We went to counseling a little over a year ago, right before the shit really hit the fan.  Frankly, we were too busy shoveling said shit to even get to the core of our relationship.  And so instead of drifting.....we fractured.  And I mean we are talking imminent separation.  Weeks away from it in fact.

So what changed?  Honestly, if I had to pinpoint one event....it would be the day that someone, maybe unwittingly, decided to "separate" our family before we were ready.  In my opinion, marriage, especially one that involves children, and years of commitment, and conflict, and confusion, is a very personal, sacred matter.  Only the couple involved in the marriage can make this decision.  So when we perceived that the decision was being made, and announced "for us", we both stepped back and thought, WHOAH.  My mom had sent me an email about a Catholic marriage crisis program several weeks before, which I kept in my inbox for God knows what reason- I was way past that point.  But for some reason, on that day, I mentioned it to my husband in passing.  My husband is not a fan of organized religion in general, so when he turned around, looked at me and said "wanna go?" you'd better believe it gave me pause.  And after that seed was planted, what right did I have to say no?  Our children deserve to have their parents together, to have a loving family if it is at all possible, right?  So we went....that was our "big trip" in April.  Over 48 hours of peer-led discussion, and inspiration, and writing.  And when I say writing, I mean WRITING.  Both my husband and I each have a notebook that is mostly filled at this point, between that weekend and the follow-up that we have been attending since.  6 weeks of follow-up.  Every Saturday.  For 4 hours.  4 HOURS.  It has been life changing for both of us.  Somehow, we found each other.  In the midst of all the crap that has happened, all of the pain we have been feeling over the boys, we realized that we still love each other.  And need each other.  And want our family to work, to stay together.  We have been taking our anger out on each other for a long long time.  There is so much healing left to do.  But we are on the right path.

So the crossroads....yesterday evening was our last official "session" of the program.  We have an all day event next Saturday, and then there is some further peer support available.  But other than this, and our continuing counseling of course, the training wheels are off.  In fact, we are planning to volunteer for the program.  The couple who has been leading the sessions is older, the husband can barely see, and the wife is losing her hearing.  So we are going to help.  It's a further commitment to each other, to our family.  And it's a way to make sure we take time for our marriage consistently.

I am so grateful.  I just don't know what other word fits.  Raising these boys is no joke, and they need both of their parents.  But only if we can work together.  I now believe that we can.  I have not felt this connected to my husband since the birth of our first child.  And that is huge.  The amount of work we have done these past 3 months is amazing, but I am not kidding myself....there is so much more to do.  And there always will be.  We cannot simply "be married".  It's not a descriptor.  It's an action.  That's the most important thing I have learned.

And this needs to be said as well.  My parents.  My mother.  The one who sent me the information on this program while supporting me in my decision either way.  The one who has watched our children every Saturday with a smile, and new books to read to them each week (yes Mom, I noticed them in your bag).  And my mother in law.  Who has been watching the boys during our regular counseling sessions.  And my sisters, who love me enough to support my decision to work on my family.  To all of you, thank you, for your support, and for not judging us or our problems.  Judgement helps no one, it only tears relationships apart, sometimes permanently.

I want other families to know about this program.  This is coming from a woman who was beyond counseling, had her mind "made up".  It's the reason I am taking this leap and writing about such a personal matter.  The program is called Retrouvaille and it is wonderful.  http://www.retrouvaille.org/  Religion is not shoved down your throat (although the concepts of marriage and commitment are).  The families involved in this program are extraordinary.  We have even connected with some other autism parents as a result of participating.  I guess this shouldn't be too much of a surprise.  Autism has changed our family forever.  Families affected by autism often need some extra support- and here it is for the taking.

This resonates with me more that anything else I have read....

"The Art of Marriage"

Happiness in marriage is not something that just happens.

A good marriage must be created.
In the art of marriage the little things are the big things...

It is never being too old to hold hands.


It is remembering to say "I love you" at least once a day.

It is never going to sleep angry.

It is at no time taking the other for granted;
the courtship should not end with the honeymoon,
it should continue through all the years.


It is having a mutual sense of values and common objectives.
It is standing together facing the world.


It is forming a circle of love that gathers in the whole family.


It is doing things for each other, not in the attitude
of duty or sacrifice, but in the spirit of joy.


It is speaking words of appreciation
and demonstrating gratitude in thoughtful ways.

It is not looking for perfection in each other.
It is cultivating flexibility, patience,
understanding and a sense of humor.

It is having the capacity to forgive and forget.


It is giving each other an atmosphere in which each can grow.


It is finding room for the things of the spirit.
It is a common search for the good and the beautiful.

It is establishing a relationship in which the independence is equal,
dependence is mutual and the obligation is reciprocal.

It is not only marrying the right partner, it is being the right partner.


It is discovering what marriage can be, at its best.

- by Wilferd Arlan Peterson

Home again.....

Well we made it!  And we had a really great time!!!  The kids eventually did great, and so did John and I.  The first 48 hours were touch and go (well honestly, a little bit more go).  At one point John looked at me and said "I want to go home".  To put it bluntly, Jack was a nightmare those first few days.  We are often able to fool ourselves into believing that he is adjusting "well" to new situations.  Until we actually take him and put him in a truly unfamiliar place.  I could not leave the room without him sobbing, if one of us went out on the deck he screamed bloody murder.  We tried to take a drive around the resort that first night and he cried the entire time.  ANY bug that happened to fly by would lead to a major meltdown.  So we made the decision (and the crappy weather helped us with this) to basically stay at the condo those first 24 hours.  Nate and I took a few walks, John took a drive to check out the fishing situation, but we kept Jack as stable as possible.  We watched movies, read books, ordered delivery, brought everything familiar we could think of to calm him.  And I would say that eventually he became pretty comfortable.  Poor guy....I certainly can relate to feelings of anxiety, but he really seems to completely freeze at times.  John and I have made some major parenting decisions based on this recently, and we looked at each other this week and both commented on how glad we are that we protected him in the way that we did.  There are certain things he just cannot handle.

                               Pluses to this indoor time?  We discovered that Natey LOVES elmo!   And look at Natey, he climbed up to snuggle with his brother!

On the second day, we were starting to fall into what I like to call our "family funk".  John and I have a history of allowing Jack's demands to rule the roost and he had decided he didn't want to go anywhere.  It was only 72 degrees the second day we were there, but there is an outdoor heated pool at the resort, and I decided I wouldn't take no for an answer- we were going!  I dragged them all to the car and off we went.  It was a turning point for all of us...Jack realized this was fun after all and we discovered that both boys are little fishies.  They LOVED the pool...think we will join our local pool this summer after all....we were going to hold off.  Jack continues to narrate his entire life out loud....to anyone who will listen, and some who won't.  To the lifeguard (in the first five minutes):  Are you a lifeguard?  Do you save people?  Is that your chair?  Are you a boy?  where's your shirt?  Watch this!  Wait, watch this!  Do you swim?

I feel terrible about some assumptions I used to make in my late teens and early twenties when I was a nanny.  Wherever I took the kids I was watching, we would always run into a child that would just "latch on" to me and want to tell me their entire life story.  I always thought these kids were not being listened to at home, that they didn't have anyone else to talk to, that maybe they were even neglected.  I guess that could be true in a few cases, but I have a whole new perspective these days.  Jack literally has no off switch, or volume for that matter.  He NEVER stops talking.  I know many parents may nod their heads at this and say, my kid too!  No really......NEVER STOPS.  All of his "lines" were new to the people we ran into at the pool or the beach- which was thrilling for him.  So the comments would be "wow, he's really smart" (after reciting bunches of airplanes, or correcting a parent about the "lizard" floaty toy- excuse me, but that's a newt).  We listen to him at home, we talk to him, we encourage him.  There never comes a time when he is done talking about his areas of interest.  He could go on literally forever.  Once again, I am learning to let go of my worries that he is annoying these strangers.  They have the ability to walk away right?  And he's not being rude at all, just very very very talkative.  And he really made some people laugh with his quotes.  At one point he asked a mom about her little boy "is he a baby?", and she responded yes.  Then he said "I am way too young to have to worry about babies".  He had all the grandparents who were quietly reading their books in stitches-- and yes he was quoting a movie.  

So he swam and swam, and had a blast.  He LOVES the beach even more than previous years, and John and I were able to enjoy having him there a lot more.  He is not as "dangerous" as he used to be, he understands his limits...think we only got pulled down in the undertow maybe twice.  Nathan was more cautious than we expected, hallelujah!  He really held on to us whenever he was near the water, and seemed to prefer the sand and digging to the ocean.  Fine by me!!!!  His biggest obsession this week was.......pine needles.  A variation on the sticks that he collects around home.  He played with them on our deck for hours, and there were some at the beach and the pool so he pretty much had one in his hand at all times.  Really reminded me of Jack's previous grass "obsession".  One rough moment for me came at the pool when a parent asked me if he had some "delays".  She was very nice about it, and I was honest, I told her he has autism.  She had a little boy who was 18 months old who was talking a blue streak and played catch with me for like 10 minutes.  John and I both are dreading getting this question more and more.  So far, Nate has been close enough to a "baby" that not many people have noticed his delays and other issues.  But he is getting bigger, he is more of a little boy now....one who can't speak.  And it is becoming more obvious to others that he has issues.  We need to brace ourselves for this....we had a long talk about it this week.   We can handle it, just hard to have issues you are working on so hard pointed out to you, especially when your child is perfect in your eyes.

If you look at my pictures from the trip, it might seem like Nate did nothing but sleep.....couldn't be further from the truth!  He just slept anywhere but in his bed at night!  He has officially boycotted the pack and play in favor of mom and dad's nice comfy bed.  He passed out everywhere we went in the evening because he never took a real nap.  Thank God that when we got home today he went down for a nap in his bed-3 hours!






























The resort was great- lots of good options for the boys- a pool and baby pool less than a block from the condo and the ability to drive right up to the beach, park in a resort lot, and walk right on.  Perfect for the kids.  We even managed to log a little individual time for mommy and daddy- outlet mall for mommy and fishing for daddy.  And we went out to dinner 3 TIMES without incident.  That being said, we bribed our children- with illegal food.  I would say I am ashamed of myself, but sometimes peace comes at a price, and this week I was willing to pay it.  So Nate likes calamari, sue me!  John and I have found a "rhythm" when it comes to caring for the boys, we are working much more effectively as a team these days, and boy is that nice.  We have had lots of deer in the headlights moments these past few years, and while there are many more to come I am sure, there has been major improvement.  Eases the stress more than I can say.

Just in case you are wondering, this is Jack "crossing his eyes".  Really, you gotta be there to understand just how freaking hilarious this is!

So over all, a great trip!  My biggest tips for traveling with 2 small children on the autism spectrum?  Many are similar to traveling with any small children, just magnified, but several stand out.

1.  Make NO plans for at least those first 48 hours....give the kids time to adjust

2.  Plan, plan, plan....for us, this meant preparing for the diet, locating "quiet" places to take the boys since Jack has many auditory sensitivities, timing meals just so, respecting the boys' needs at all times

3.  Choose a destination relatively close to home- 3 hours was just about perfect....no meltdowns in the car!

4.  Keep it simple- we didn't do any amusement parks, we avoided shops with the kids.....my favorite moment of the entire trip?  A ten minute stretch on the beach....the whole family just holding hands in the surf.  What could be better than that?

5.  Don't let fear rule the day-  talking about MY fear.....what's the worst that can happen?  The kids lose it....we'll still wake up tomorrow and it will be a new day.  The best part?  We know no one!!!

6.  Talk!  Talk to your child about where you are going, for how long, what you will do, who you will see....knowing what to expect is huge for kids on the spectrum

7.  Go during the "off" season---- less crowded is such a major plus when dealing with autism

8.  Pack like you are heading into battle (because you are)....I have always been an overpacker, and it is now a major positive....God forbid I had forgotten Jack's mustang!  

9.  If a special accommodation will help your child- ask!  We were going to take a shuttle to the beach (think about it- hot, waiting 20 minutes each time, dragging the beach equipment long distances...), and my brilliant husband suggested I call the resort line to ask about beach parking instead- this cut out a whole "unknown" for the boys and I have no doubt that it helped us avoid multiple meltdowns.  

10.  As with all things.....breathe deeply and if worse comes to worse, bring a BIG bottle of wine. The kids will fall asleep eventually!

And we're out......

Someone must have told him it's vacation time!  This is what happens when stubborn two year olds refuse naps!!! How cute is this kid???

Hit the Road....with Jack

We are taking the plunge....we are going to attempt "vacation" with the boys.  We are nuts.  We are morons.  We have been trapped in our house for almost 3 years.  So we are GOING.  Fear (and destitution) have kept us here and now we are going to be brave.  Mommy may even have to be extra brave and let Jack get a hermit crab (the hermit crab will have to be the bravest of all!!!).  I found what looks to be a family-friendly, quiet resort near Bethany Beach, we shouldn't have to drive anywhere, there are multiple pools (so if the kids have a meltdown at one, we have a back-up, lol).  It also has a 1/2 mile private beach, it's own shopping center with grocery store, golf courses, gym, etc.  So pretty self-contained.  The more stable we keep the environment, the better.  Both boys struggle so much with new situations.  For instance, the other day we went to pick up a trampoline I purchased on craig's list for the boys (the OT's have been recommending one forever), and we were having difficulty fitting it into the trunk.  So I put the back of the seat that is between the two carseats down to accomodate it.  You would have thought that I ripped the door off of Jack's side of the car.  Meltdown city.  My favorite part was the woman we bought the trampoline from going "what's wrong with him?"  Bite me!  So you know, a new bed, new living situation, new surroundings, complete change of daily routine is very anxiety provoking (for all of us at this point).  I have learned to go into these situations with zero expectations.  If we don't make it where we are planning to go, the world is not going to end.  I am a "planner" by nature, I have lists everywhere, so this has been a huge adjustment for me.  Go with the flow....let the boys dictate the schedule....got it.  Bah!

Speaking of lists, you should see how many I have going right now.  Between Jack's diet, Nate's diet, their supplements, and Jack's objects of obsession that we can NOT leave behind, I have my hands full.  And that's before the regular packing.  All of that aside, I am really looking forward to getting away with our little family.  A change of scene may be rough on the boys at first, but mommy and daddy really need it.  Especially mommy- working out of the house sometimes makes me feel like a prisoner, I often don't leave for days.  Last time we took Nate to the beach, he couldn't walk yet.  So I am excited to see what he thinks of it.  I have a feeling he will love the feel of the sand, I have a feeling he will make a mad dash into the waves.  I have a feeling I will do a lot of running this week!  While John tries to coax Jack to the edge of the water.  Sooooo different these two are.  So wish us luck!  Really looking forward to some good quality family time!

Just want to comment that I am so glad that I am starting to hear from some "autism parents" out there!  Keep it coming, glad to be able to bounce ideas back and forth!

To the father of my children....

OK, I am taking a big risk here, huge really.  I have been working on this for days and agonizing over how to say this just perfectly, so here goes.  Happy Father's Day to the most transformed dad of the year, consider this an early gift from me to you....

"I may not be where I intended to go, but I am exactly where I'm meant to be"

Parenting our precious little boys is not easy.  Little of what we do on a day to day basis is described in any parenting book I have ever read, I guess that can be said of many parenting experiences, but man, we have set that bar pretty high, haven't we?  It's been a hell of a five years (being a parent), right?  And you and I can both agree at this point that we have been trying to figure out what is going on with Jack, and then Nathan for pretty much the entire time.

I know I can confidently speak for you when I say that almost everything that you pictured being a father would be has been thrown out the window.  I know that when you imagined having sons, you imagined playing ball, and riding bikes, wrestling, little league.  Telling our little boys to be more careful.  Not begging them to go on the slide or get in the pool.  And I understand.  I pictured playing trucks, building with legos, and coloring with my boys.  Not saying, "you WILL color" and "no, not just one line, keep going".  We have had to reframe all of that. And really those are the most minor examples of the true adjustments our family has made.   I don't know if you realize that I was watching you outside with the boys last weekend, but I was.  With the T-ball set.  Trying and trying to interest Jack, to get him to hit the ball.  And trying to keep Nathan from mowing the whole set-up down.  Through the window I could hear the patience in your voice, and the way that you kept calling Jack back (that bee isn't going to hurt you), and trying to get Nathan to put down the sticks that he obsessively gathers whenever he is outside.  You never lost it.  You never acted disappointed with them.  Over the past six months, I have watched as you have finally begun to embrace your "new normal" as a dad.  Corny as it sounds, I am really, really proud of you.

“Autism means having more patience than you ever thought possible, in yourself, for loved ones, for others and achievements yet to come.”

by Stuart Duncan

People may come at you and tell you to "suck it up", or stop with the "pity party".  That's all well and good for someone who has never been through this.  It is perfectly normal to grieve the loss of what we thought our lives would be.  And you had a very long period of mourning.  But I have watched you turn that corner.  Thank you for joining me on this side honey.

“I feel bad for any child who's parents will never accept that they have Autism. If their parents can't accept who they are, who will?”

by Stuart Duncan

Thank you for joining me at the doctor appointments, thank you for paying attention to the diets and the supplements.  Thank you for recognizing and respecting the uniqueness of our boys.  While I'm at it, thanks for asking me what you did in April, I am so glad I said yes, and that we took another huge step for our family.  Thank you for getting up with me Sunday morning and taking the boys to the park.  For letting me have the mindless task of pushing Nate on the swing and screeching "weeeee!!!!".  It felt like a "typical" parenting thing to do.  Thank you for standing motionless in the field with Jack for periods of 20 minutes helping him work up the nerve to fly his glider. Thank you for not losing it when he cried as you launched it and screamed "shit, shit shit".  A year ago......but Sunday you calmed him and made the plane start talking to Jack.  You made the plane ask Jack if he could fly again.  Over and over.  And you waited.  Until he was ready.  And this afternoon, you soothed him when he freaked out about bugs in the backyard every 30 seconds.  For a LONG time.  I kept hearing, "oh Jack, that's just a bumble" or "that's just a honeybee, he's getting nectar, he isn't after you".  There are times lately when you seem more patient with Jack than I am.  This is so new.  And it's wonderful.

And I know you feel the difference in your relationship with Nate.  He climbs up to see YOU at times now.  I know you only think he does it when I'm not available, but I can see on his little face that he is happy to be with you.  Thanks for using his PECS, making him ask for something before he can have it.  For chasing him around the house in circles, for looking for your shoes all over the place now that he likes to "pile" them in various secret locations.

Most people would not consider this "normal" parenting.  And maybe it's not.  But it is exactly what our children need.  Frankly, I have come to subscribe to the idea that "normal" is just a dryer setting!  Our kids need to be embraced for the wonderful little people they are.  They need people to be sensitive to their unique needs.  And you are doing that.  You are helping me face these challenges and working with me as a member of the team.  You are putting us and our family first.  You are being a great dad.  So Happy Father's Day, your family loves you very much.

A"head" of the curve....

Yep, I am blog happy this week....lots to say, lots to say.  I got a "gift" in the mail today.  Really, it was.  I have switched the boys' pediatrician 3 times in the past year while searching for a combination of personal attention and progressive thinking.  In the process, the boys' full medical records were kind of scattered and it has taken me quite awhile to track them all down.  Today they finally came in the mail.  I gave up on the idea of having them forwarded straight to the pediatrician awhile ago, I was afraid it wouldn't happen, and plus, I was curious about what they would say.  Also, there are so many specialists that are going to want to see this information, makes sense to just make my own copies, right?

I feel like about 15 more pieces of the puzzle that is Nathan just fell directly into my hands.  All of his medical information from those first 18 months of his life where he was seemingly developing "normally".  Other than multiple chronic illnesses.  And several other NOTABLE abnormalities.  Now of course, hindsight is 20/20, right?  But after all of the research I have done in the past year it took me about 5 minutes of perusing Nate's history to see some typical characteristics that have been described in the autism community:

1.  frequent antibiotic use:  Nate had antibiotics on the following dates in the first 18 months of life (and yes I made a spreadsheet, and no I'm not embarassed)
9/3/10, 9/20/10, 10/20/10, 11/23/10, 2/9/11, 4/5/11, 4/19/11, 4/22/11 (switched to stronger)

I have read multiple research articles and opinions alluding to the fact that frequent antibiotic use, while it does not "cause" autism, contributes to symptom severity and to things like gut problems/food sensitivities.  It also causes problems with yeast overgrowth.  Which brings me to another point- Nate had thrush in August 2010, before ever having antibiotics.  Thrush that wouldn't clear, he was on nystatin for about 2 months.  In my busy mommy haze, I had forgotten.  So there was a yeast issue before we killed off all the good bacteria in his gut.  Sigh
Have pasted a few articles about this below....
http://www.ageofautism.com/2008/11/antibiotics-and.html
http://www.greatplainslaboratory.com/book/bk7sect1.html
http://www.theautismdoctor.com/antibiotics-and-autism/
http://www.ncbi.nlm.nih.gov/pubmed/15607562

So that's the first thing that jumped out at me

2.  Head circumference:  I have read multiple articles that an unusual increase in head circumference in the first year of life is associated with autism diagnosis.  And I know Nathan has a large head circumference, I mentioned in a previous post that he qualified for a study with NIH investigating the growth of the brain and it's association with autism.  I was still on the fence about participating....consider that fence jumped.  Here is Nate's data:


                   12/22/09     2/2/10       4/6/10      6/23/10    7/21/11       6/8/12
age                  2 wks       2 mos        4 mos       6mos        18mos    30 mos
head circ         35.5cm     39.5cm      43cm        45cm        50cm      52cm
percentile          15th        50th            75th         90th          95th          97th

Hmmmmmmm........now I know what you're thinking, maybe he just had some growth spurts?  Just to clarify, his height and weight have consistently been in the 30-50th percentile throughout his life.  So nope.  And if he just had a big head, it would be big consistently right?  When I saw this, it made me feel ill.  And the other thing that makes me ill is that half the reason they measure head circumference is to watch for jumps like this to r/o issues with the brain.  So WHY, when they saw this large increase during his first 6 months of life, did they not bother to measure it for a WHOLE YEAR?????
More articles:
http://ucsdnews.ucsd.edu/newsrel/health/07_15_Courchesne.htm

"It was found that the head size of the autistic children at birth was, on average, in the 25th percentile, meaning that the circumference measurement for these children was smaller than 75 percent of other newborns. During the first year of life, however, these same children experienced sudden, rapid and excessive brain growth, that put them in the 85th percentile at about 12- to 14-months of age. From then on, the brain growth slowed"



"The early-warning sign – abnormally accelerated rate of head, and therefore brain, growth – occurs well before the first clinical signs of autism. It also appears to predict the severity of clinical outcome as well as the degree of brain abnormality at a later age. Currently, the disorder is not typically detected until ages two to four, when a child develops behavioral signs and symptoms, such as delayed speech, unusual social and emotional reactions, and poor attention to and exploration of the environment."


Feels like I am reading an article about my child....


http://autism.mit.edu/sites/autism.mit.edu/files/Piven%20--%20Circumference.pdf
http://health.usnews.com/health-news/family-health/brain-and-behavior/articles/2011/11/28/head-size-tied-to-regressive-autism-in-boys

Our current pediatrician has suspected that we might see this curve in Nate once we had his records in hand, and she was right.  Obviously this doesn't change anything we do now, but it does make me sad.  Was this occurring right under my nose?  While I thought he was developing normally?  Part of me is glad for my previous ignorance- I enjoyed his infanthood way more because of it.  But maybe we could have intervened earlier.....at the end of the day, I guess I have to cling to the fact that he got intervention before the age of 2, and I know that I can take much of the credit for that.  When I look at Nate's 18 month checkup, the physician had really "glossed over" my concerns about his language, and states in his notes that he told me it "wouldn't hurt" to consult infants and toddlers.  Um, yeah.  At least the second pediatrician was better than our initial pediatrician, who told me that Jack didn't have a developmental issues, he was just "spoiled and manipulating me".  Until he saw the developmental pediatrician's report diagnosing him with aspergers, at which time he completely retracted his previous statement.  And THAT was the day that he was kicked to the curb!

And just in case you were wondering, Jack's head circumference has consistently been 50-60%-ile, and he had 1 course of antibiotics in his first year of life.  Also, Nate's head is currently larger than his brother's.  That's right, the 2 1/2 yr old's head is bigger than the 5 yr old's.

Kindy 500

Yesterday was Jack's kindergarten orientation for next year.  Yeah, kinda early.   Let me tell you, I got myself worked up into a tizzy about this, why I don't know.  The only thing I can figure is that at Oak Hill (where he went to pre-K) I always knew that it was just for a year, and anything he might do behaviorally wouldn't be remembered or carried on to the next year.  This, however, is a long-term investment.  Hopefully, Jack will be in this school through 5th grade.  You know what they say about first impressions....not to mention that Jack's daddy went to the same elementary school that Jack is going to....

Jack has had a resurgence of his airplane obsession ever since daddy took him to an air show a few weeks ago.  Some of his play is more mature than last time around- every morning he identifies which type of fighter plane each family member will be that day.....for instance, today I am a Messerschmidt, daddy is a BF109, Jack is a Mustang, and Natey is a Piper Cub.  Oh, and Miss Anne (the sitter) is a stealth fighter.  We interact as such throughout the day.  When Jack was first diagnosed, we saw a "play therapist" once a week for maybe the first 6 months.  It was hard for me to wrap my head around this.  Our insurance was paying for this woman to do "floor time" with Jack.....directed imaginary play on the floor of some attorney's office on Saturday afternoons.  It did bring to my attention that he had not been "playing" with his toys so much as sitting and spinning wheels, propellers, etc.  He used to turn all of his toys upside down and examine the screws that held them together.  She did help us with this, by the time we closed with her he had toys interacting with each other, although he needed constant encouragement.  This aspect of his play has grown by leaps and bounds this year.  He is very "firm" in his imaginary play scenarios, and we are not allowed to break character.  God forbid I call him Jack.

So I think it was with this in mind that when Jack announced his plane identity for the day yesterday, I started to get nervous.  Now once again, I am a "nervous Nelly" under the best of circumstances.  I am chronically early to all appointments (even when the kids were babies), check directions three times before we leave for a destination, and make lists like a mad woman so I don't forget anything.  And I am TERRIFIED of my kids misbehaving in public.  I sometimes think God gave me a Jack to teach me a lesson, and no mom, I am not referring to my temper tantrums in public as a toddler (I hope you have a child just like you!!!)  No, more like having Jack is slowly teaching me to "let go" of what other people think.  When he melts down, he is overstimulated, he is not a bad child, and I am not a bad parent.  However, this perspective was lost on me yesterday for some reason.  So all I could picture in my mind was Jack walking up to all the kids/teachers, etc and when asked his name, him replying "P-38, and I have 2 propellers".  For people that know Jack, this is not a surprise, but in a new setting, I am afraid that people will judge him.  Over time, he is very good at drawing others into his "world".  For instance, for a lot of this year, his favorite thing was Wall-E, from the Disney movie.  At one point, he came home from school with a Wall-E postage stamp glued to a note card- his teacher had brought it for him from home.  The obstacle course at his private OT has been called many things (although never the obstacle course), from hermit crab course to flight plan.  It's a great motivator.  All morning I reminded him, "your name is Jack Fury, when someone asks, that's what you say".  He said, "no, I'm a P-38 mom, wanna hear my propeller?"  And let me tell you....Jack's propeller?  It's really really loud.  Great, I can picture that right in the middle of the assembly.  All I could do was remind him over and over again.

I had no reason to worry, well almost none.  Besides a minor meltdown during the walk in when he thought he might have heard a wasp, he did pretty well.  And they took the kids to classrooms during the parent information session.  In that regard, I think Jack was actually pretty well prepared, he is used to a "big" elementary school after being in public pre-K, and despite the fact that I erroneously reassured him that I would not be leaving him, he popped into line and walked off to the classroom with little complaint.  Although when I went in to get him later he told me he was "worried at me", which means I ticked him off.  But when the teacher asked his name, he said "Jack"!  And spelled it! And later wrote it!  Whoot!  It was a NUT HOUSE- there are 3 kindergarten classrooms of about 20 kids next year, that's a lot of kids and parents in 1 room.  He did cover his ears, and I made sure that we sat towards the back.  The microphone freaked him out quite a bit.  The thing that has changed is the amount of time it takes him to recover from it.  So much faster.  So once again, mommy breathes.  We are good until August now.....

Want to give a shout out to John, who asked me today if I thought Jack would enjoy going to an Orioles game with him.  I said yes, if it's one on one, I think he might be able to handle that.  Baseball is a very important thing to John, something he shared with his dad, and I am happy he wants to share it with his son.  Here's what got me.  He texted me about 5 minutes later to tell me he reserved some tickets, and then proceeded to tell me that he paid a bit extra for box seats.  He didn't think Jack could handle being high up, the seats so close together, all of the chaos.  He wanted to create a pleasant, enjoyable environment for Jack given his sensory issues.  WAY TO GO HONEY!!!!!!!!!!  I am blown away when you think of these things, and it just shows how much you love your boys.  You rock!

TACA and an awesome blog

First and foremost, my close friends and family are probably getting tired of this picture, but I never will.  This is the first picture of Nathan in over a year where he is looking at the camera and smiling.  I am counting this as tangible progress!

Tonight is the monthly meeting for the local chapter of TACA (Talk About Curing Autism).  Once again, we are blessed.  The local chapter meets literally a mile from our house.  John and I try to go together, but we have been needing so much childcare from grandparents lately that John has generously been watching the boys so that mommy can go.  Really appreciate that!  TACA is a support group, but so much more.  Here is their website:  http://www.tacanow.org/
They offer a wealth of information for families.  They have a whole section dedicated to families with a child who is newly diagnosed with autism.  They offer screening tools for concerned parents.  Look at this, they have compiled a list of all of the available gluten free, casein free foods!  This was a lifesaver back when we were getting started:  http://www.tacanow.org/family-resources/gfcf-food-shopping-list/
The local meetings are the first Tuesday of each month, and in general, each month offers a specific topic.  One month was a "tasting" of the GFCF food items made by One Dish Cuisine, a local supplier to grocery stores, bakeries, and even some hospitals now.  One month was a visit from a DAN (defeat autism now) doctor, talking about the immune system and the different biomedical treatments available for autism.  Then there was music therapy.  Also available at the meetings are various resource books that parents can "check out" for a month or two so they can do research without having to purchase a million books.  At your first meeting, you are given the "Autism Journey Guide" which is almost overwhelming because it offers SO MUCH information.
http://www.tacanow.org/store/Autism-Journey-Guide-Vol.-I-Early-Childhood-Book-only/

Some nights, like tonight, consist of round table discussions....small groups led by parents of older children with autism, they basically allow themselves to be barraged with a million questions from us less-experienced parents.  So helpful. I have a "mom crush" on one of the parents who leads these groups.  Her son is about 10 years old now, she is also a nurse, in fact, she used to be a bone marrow transplant nurse at the facility that competes with the hospital where I used to work.  When I met her, and we discussed our philosophies, I felt like I was looking in a mirror.  Ironically, I met her on Valentine's Day.  About 20 minutes into our conversation, she asked, how's the marriage?  Umm, err......she smiled.  Said, yeah, I know.  Then she told me to google Autism Daddy and to tie my husband to a chair and make him read it if I had to.  HA!  I LOVE this man's blog, he is amazing.  He is so not politically correct and he is exactly what my husband and I needed to read.  I will put the links to some of my favorite posts below.

http://autism-daddy.blogspot.in/2012/01/letter-to-dads-that-left-because-of.html

http://autism-daddy.blogspot.in/2011/12/12-ways-to-keep-your-marriage-strong.html

http://autism-daddy.blogspot.in/2012/02/10-polite-things-people-say-to-autism.html

And finally:
http://www.familybehavioralresources.com/uploads/wf_HelpUsUnderstandExtendedFamily0711.pdf

Found this indirectly through the guy's blog, but thought it worth posting.

I strongly urge you to read all of these, and file this stuff away.  I wish I had the nerve to write this stuff, well, his kid is older, so maybe it comes with time?  Great to read another perspective at the very least!

Reflections on Pre-K

Jack completed Pre-K today.  I let daddy pick him up from his last day of school, he had taken some time off and I was swamped at work, so it made practical sense.  It did, however, involve me literally sitting on my hands.  Feeling sentimental I guess.  It's probably good that I didn't go, might have embarrassed myself by sobbing or hugging his teachers a little too tightly.  The team at Oak Hill has been excellent to Jack, it has been such a relief to work with them after our experience with Jack's 3 year old preschool class.  Jack's preschool teacher was clearly very stressed out by him, and after the school year ended, the school system OT (she provided services in Jack's private preschool setting) disclosed to me that she had repeatedly asked that he be pulled from the classroom.  Which was very different from the story she was feeding me.  I think this is part of why I was so nervous for much of this year.  No need, these teachers, including the special educator and OT are class acts.  Patient as can be.  And very supportive.

I got something I wasn't expecting in Jack's school bag today....a final update to his IEP.  I am going to post the comments below.  Jack is very good at assimilating into many situations, and so I think that people who don't spend a lot of time doing focused activities with him may have difficulty even recognizing that there are any issues.  That makes me happy.....it will serve him well in life.

Here is what they had to say:
"Jack requires an average of 10 prompts to complete the assignment/task/activity presented to him.  When called on, Jack was able to offer on topic information during instruction 40% of the time.  Jack was able to independently follow classroom routines 50% of the time.  Jack requires an average of 10 prompts to maintain focus on the task at hand.  In large group instruction, Jack was able to attend to the speaker by independently positioning himself facing the speaker 39% of the time.  Jack has varied interests in specific topics and knows a wealth of information about those topics.  Jack is a VERY nice little boy "(damn straight!!)
OK, so just to be clear, this shows HUGE improvement.  At the beginning of the school year he screamed when music was turned on in the classroom, required a special seat to "remind" him to sit during circle time, and brought home blank worksheets much of the time.

OT-wise:
"Jack is showing nice strength increase in his hands (hooray!).  When Jack is focused on task, he is demonstrating the ability to use classroom materials with minimal assist.  He is opening classroom tools such as glue stick, scissors and markers (this is huge for him).  He continues to work on pressure when using the tools.  He is working on sitting tall in his chair when working and using his non-dominant hand as a helper."

Sooooo....at the beginning of the school year, Jack had still not declared a dominant hand.  As a matter of fact, it was the subject of much discussion this past winter, when his school OT was calling him a righty and his private OT was calling him a lefty.  And the private OT wins!  To be fair, she sees him twice a week and the school OT saw Jack twice a month.  Now that we have a hand to focus on, the progress has been much more steady.  We will need to do a lot of work this summer just maintain the progress.  We are blessed that our current nanny used to be a preschool director and literally brings daily worksheets that she prints out for him.  Everyday when Nate is at school, she takes the time to have Jack write, color and cut.  He fights it, but I have noticed that the more confident he becomes the less he fights.

Nate gets 2 weeks off, and then his school resumes for most of the summer.  The infants and toddlers program has recognized that the little ones cannot be away from their routines for very long or they will lose all of their progress.  Thankful for that.  We are on day 3 of curcumin right now.  The pharmacy where we get Nate's B-12, which is in Ohio, has their own special formulation of curcumin that is supposed to be more "bioavailable".  So we went with that.....I am waiting for Nate to realize that he has "spices" in his juice but for the moment, he is drinking it.  We are waiting with baited breath for side effects.  "Die Off" is not uncommon with this supplement.  Explanation of those symptoms is below.
http://www.leesilsby.com/enhansa.php

It will take 3 weeks to get him up to the full dose, then we will add the two other supplements, one at a time.  Today Nate said "bird" for the sitter and something approximating "goodnight" to indicate to me that he wanted to read "Goodnight Moon" at bedtime.  : -)))))