Letters, Letters, Everywhere

We had another funny little moment yesterday, a moment that is uniquely autistic, but no less endearing.

I believe I've mentioned this before, but Caleb has a thing for letters.  Yet again, as criteria goes, it's a tricky thing, these letters - medically, he is not officially "fixated," but he comes darn close.  He does not stare at them for hours, or line them up, or refuse to play with other toys in favor of them.  They're just his favorite thing.  Ever.

On my good days, I liken it to a typical 2-year old having a favorite bear, or toy TV character.  You know, the little boy who refuses to part with his Toy Story Woody, or the girl who just can't leave home without...whatever little girls won't leave home without.  What do I know?  I have all boys and barely remember that I myself am a girl, some days.

On my bad days, I worry.

While most 2-year olds chatter happily about what they did in school that day when being picked up, mine is focused on pointing out the "R" on the nearby sign to me.  He's always very good about engaging me - his little eyes stare in to mine, WILLING me to share his excitement in the letter "O" he has discovered lying on the kitchen table in a stack of mail.  He even points, his small and adorably chubby finger almost demanding in its insistence.

For the most part, the letter thing doesn't pose too much of a problem.  He can be redirected, distracted, engaged in a toy or with playing with his brother, and is content.  Some days, though, I just have to accept the fact that yes, he is capable of telling his sitter "bye" in the evening, but he will not do so until I acknowledge that yes, baby, I know you have sighted a B.  It's a very nice B, as a matter of fact.
Once given his due, he happily chirps his "bye bye" and we go along our merry way.

There are also days I just have to outright laugh at the situation.  Case in point:

We are driving home after being picked up from therapy.  Caleb has said goodbye to his therapists, been loaded into his car seat, and managed to stealthily remove one shoe and sock (I say stealthily, but as he has taken to narrating these types of things in his abbreviated way, I may have pretended I didn't know, for his benefit).  I stop at a red light, and turn around to enjoy a minute of engagement with just him, no one else.  With our hectic schedule, these moments must be seized and savored.  I smile, make a goofy face.  "Hey, baby," I say.

He smiles back, and something in the movement of his head makes him catch it.

There is a label - a WARNING label - surgically attached to the head rest of his car seat.  The same car seat, incidentally, that he has been riding in for over a year now, just about every day.  For whatever reason, the label has heretofore gone unnoticed.  And present in that label?  That's right - letters.

The look on his face is priceless.  I wished, in that moment, that I could bottle it, tuck it away to relive and giggle over again and again, later.  It is a look of stunned amazement, and for a moment, he is at a complete loss.  I can see his mind churning, processing what he sees, working through what to do first.  Finally, he settles on shooting me a look that clearly says, "WHERE HAVE THESE BEEN, AND WHY DIDN'T YOU TELL ME THEY WERE HERE?"  Then, switching gears rapidly, he tumbles into excitement, nearly running out of oxygen before he can remember to take a deep breath before bursting out in a jubilant refrain, "W!  W!  W!"

For the first time in a while, I let go of the niggling worry, and let myself enjoy the sound of a letter - and I laughed all the way home.

Taking a Moment

I've learned many things in the last six months since we've received our ASD diagnosis.  One of those things is how NOT alone I am in this.  The statistics on those affected are mind-numbing, and just about every day I talk to or read the blog of someone parenting on the spectrum.  It's humbling hearing so many of their stories, and it reminds me of just how broad this spectrum is.  As bad as some of our days can be, there are others who are so much worse, those for whom good days are few and far between.

So tonight, I am grateful...

That we have more good days than bad.

That we have never received a recommendation from a doctor, and known we have no way of implementing it.

That although seizures affect as many as 40% of those with autism, I have never had to hold my child in my arms and wait helplessly for convulsions to subside.

That although autism still does not receive the awareness it deserves, we have a doctor who was proactive enough to get us started on the path to diagnosis early--and it made a difference.

That when I drop my child off at his therapy center three days a week, he is so excited to see the therapists that I worry he will break his neck, scrambling out of my arms.

That those same therapists are nearly just as excited to see him EVERY time, and they cannot wait to run down a list of funny and amazing things he did at the end of the day.

That although I still worry --every single time--about where the money will come from to pay for that therapy, it is somehow always there when I need it.

I am thankful that my baby has two amazing big brothers that he absolutely cannot get enough of, and a father who is indescribably amazing.

That although his speech is slow in coming, it IS coming, and not a day goes by that I don't treasure every word he utters.

That unlike so many parents whose childrens' voices are locked inside them, I have heard my child utter the words, "I love you."

That as clingy as Caleb can be at times, he SEES me--and few things make him happier than snuggling in my lap (albeit with his favorite letter in hand).

So, here's to more good days than bad.

The Talk

Caleb's ABA center hosted a parent's night out function tonight, designed to help the kids practice socialization with each other and with their neurotypical peers.  Well, I say parent's night out, but since my husband was out of town, it was more of a Mommy-is-out-of-the-social-loop-and-spent-the-night-at-a-coffee-shop-with-a-book kind of night.

Anyhoo, this was to be neurotypical Colby's first real experience with other ASD kids, most of them exhibiting more apparent symptoms than his brother.  I went back and forth on how to handle this.  Do I let it ride, and treat it as normally as possible?  Or do I give him a list of potential scenarios, and risk making him nervous?  In the end, I decided I was thinking too much again, and left the kids in the very capable hands of Caleb's therapists, figuring we'd take it as it came.

So, I got a few hours to myself, and they got enough junk food, toys and stimulation to put them in a Fisher-Price-induced coma.  It was a win-win, in my opinion.

When I picked the kids up, they were pleasantly exhausted and had had a great time.  Colby babbled on about colors and cookies and chalk boards and popcorn, and when I could get a word in, I asked him about the other children.

Did you play nice with them?  I asked, cautiously.

After a swift response of "yes," (his sense of self-preservation is remarkable at such a young age) he paused for a thoughtful moment.  He then told me matter-of-factly that one child was "bad" and had "hit."  It wasn't entirely clear who the target of the hitting was, but since I'm sure Caleb's therapists would have told me if there had been a problem, I assumed the hitting was self-inflicted.

I drew a deep breath.  We'd talked to Colby before about his brother being different--even using the term autistic--but couching it in terms his 3-year old mind could understand.  To him, autism meant having trouble learning to talk, and not liking certain noises, which are his brother's main symptoms.  Apparently the time had come to shed a little more light on the subject.

In carefully chosen words, I explained to him that some kids with autism did things that may seem bad, but really just meant that they were frustrated, or scared, and they couldn't help it.  Some things that he may think were "bad" or "weird" were really just another child's way of making themselves feel more comfortable - like Caleb holding his ears sometimes.  I then went on to tell him that it was our job to be patient and kind to people who were different, and to always think about how we might feel if we were them.  It was important to always treat other people, especially special people like Caleb and his school friends, how we would want to be treated.

There was silence from the back seat, and I braced myself for the questions, praying that I would be able to find the right words.


Okay, Mom, my little man said, eyes locking onto the in-car entertainment system.  Can I watch a movie?


Maybe he wasn't listening to a word I said - this is possible, but the quality of his silence was a little different tonight.  Believe me, I know the sound of being ignored.  I'm pretty convinced he heard and absorbed every word I said, as he usually does in that scary way of his.  At his innocent age, and in the absence of judgmental "friends" and bullying peers, I think he simply accepted my words as truth, and thought nothing more of them.

I pray to God his acceptance is always that pure.

The sweetest word

There have been many things that I feel we have missed out on, since my little boy was diagnosed with autism. For the most part, we have stayed busy and proactive and have not had time to dwell on them much. Finger pointing - eh, not such a big deal.  Baby babble - no biggie, we can work on it, he'll catch up. The list goes on, but one thing that has really bothered me - really made my heart just hurt, as a mother - is not hearing my baby say "Mommy."

Now that his speech is picking up, he verbalizes all the time, pointing out letters and numbers and various inanimate objects galore. And, if you ask him to, he'll say "Mommy", but only as a manner of rote. He repeats it, nothing more. Maybe it shouldn't bother me - after all, the relationship is the same. He still runs to me the instant he needs something, or just wants to be held. He loves me as much as any typically developing child would love their mother. Yet that doesn't keep my heart from breaking, just a little, when I pick him up from the sitter's house and other children run toward their mothers, exclaiming "Mommy!" happily.  My baby is glad to see me, and his chubby little face stretches in a smile, but he is heart-breakingly mute. Unerringly, I find myself silently coaching him on those sitter-days.  Just say it, baby, I think.   Just once, for me.

But he doesn't.

I don't really know how to explain the lack, there - he knows who I am, he will look for me if my husband queries, "Caleb - where's Mommy?"  He just doesn't say it.  He'll light up and run for his favorite letter, chirping "R!" merrily as dashes by, but for whatever reason, "Mommy" has fallen by the wayside.

I remember him, as an infant, saying Da-da and Ma-ma.  I recall how smug my husband was that he said Da-Da first, and how we laughed about it.  There was never an abrupt loss of speech with Caleb, as there is for so many ASD children.  He just said the words very sporadically, and only when prompted.  I can't pinpoint when even that stopped, but it did.  Sometimes I look back at those words, at how brief they were, and mourn them - I never realized how precious they were.  I would have been miserable at the loss of speech either way, but perhaps if there had been an abrupt cessation, I'd have known something was wrong then.  Those precious syllables would have been fresh in my mind for at least a brief period of time, instead of the very gradual fading that leaves them a faint and distant memory now.

His therapists say it will come - we're focusing on bigger things now, hurrying to take advantage of his youth and eagerness to learn.  I know these things are important - building his vocabulary and social skills and appropriate toy play are all going to be essential to our all-important goal of Mainstreaming.  I get it, I do.  But at the same time that I find myself growing exasperated at hearing "MommyMommyMommyMommy!" a hundred times a day from my four-year old, despite my heartfelt threats to change my name to Bob at any given moment, I still would give anything to hear it from Caleb.

It seems so small, in the grand scheme of things.  It's not like he's never going to say it - it just breaks my heart to think of him being unable to call for me.  There's something elemental about that - what parent doesn't sleep with one ear cocked toward their child's bedroom, always on the ready for that plaintive sound?

But it'll come.  Just like the play skills and imitative learning and the now-approaching-massive vocabulary have come.

I just kinda hope it's soon.

Genetics

I've been thinking again here lately.  I know--bad habit, I desperately need to cut back, as it most often leads to (more) worry and stress.  But I am, at the core, a thinker, and I can't help but over-analyze things.
Some day, hopefully one day soon, we'll know what causes autism.  Hell, if Apple can develop a new iPhone every six months (even if they can't manage to hold onto it), some scientist some day is going to figure out what makes our babies tick.  Maybe it'll be something environmental - teflon, or gluten, or freaking green peas, for all I know.  I myself am more inclined to think it's just plain and simple genetics, or some combination of factors.  I'll tell you why.
Kids in my family have always been a little weird.  Me being a case in point (insert snarky comment here).  We were always a little slow to develop physically, but I was also a little quirky in the mental department.  I still hear stories from relatives about how I could "read" at two years old.  It wasn't so much actual reading as memorization, of every single word I saw, once it was pointed out to me.  When I was still a toddler, I was reading billboards from my car seat, riding down the highway.  This in combination with being a wee tiny bit socially awkward makes me wonder, now. 
I am seeing this same behavior (minus the social awkwardness) in my 4-year old.  Case in point, he literally sat down and read me a book which he had had read to him a max of three times (and hadn't seen in at least a month) the other day.  While his class has plans to start working on the building blocks of reading later in the year, he has not had any sort of formal training as yet.  Needless to say, I was floored. 
Suddenly, things started clicking.  He had always been very smart, learning his letters at eighteen months, his numbers by nineteen.  He was slow on his physical milestones, but far outpaced others on the mental ones, learning the lyrics to songs and dialogue to movies after just a few viewings, learning every sign on the Signing Time DVD after only a handful of viewings.  And all of this was self-driven.  Although I've known a few moms who were grimly determined to make their children into little prodigies, I was content to just let mine be - he had the rest of his life to learn.  Yet, with very little effort, my child's brain is developing in astonishing ways, at an amazing rate.
People remark on how lucky I am, to have such a smart child. Me, I'm terrified.  Everything comes so easy for him, there doesn't seem to be a learning curve.  Instead of remarking on the pictures on the walls of the pediatrician's office, he wants to discuss the anatomy charts.  He remembers driving routes after only one trip to a particular location.  How do I keep up with that?  Am I stimulating him enough?  He's a social butterfly now, but how long before his intelligence affects his relationship with his peers?  How will he relate as he gets older?
Don't misunderstand me, he's not doing calculus or composing Nobel worthy works of literature, by any means.  I think he is more than capable of living a "normal" life, but I worry - alternately about him not reaching his full potential because he will try to "fit in" with his peers, and that he will exceed -  potentially always regretting being different.
Maybe I'm being selfish, worrying about this - plenty of people have bigger problems than too-smart kids.The worry is mostly for me, I think - it certainly doesn't do my children much good, but it makes me feel like I'm doing something for them, at least, when there's so little else I can do.  When it comes down to it, the hard work is up to them. 
One of these days, I'm going to have to let them go, and pray that whatever they are - ahead, behind, social butterfly or recluse - that they'll be happy about it. 

Just so much

It's amazing all that can happen in a week, even more amazing the array of emotions one person can experience in that same week.  By turns, I have felt worry, triumph, fear, sadness, joy, loneliness and gratefulness; each emotion leaving its own little footprint behind in its wake.  In watching my baby change, day by day, I feel as if I am changing just as fast, no longer the same person from one moment to the next.

Just a short time ago, I thought I was strong.  I juggled work, caring for three children, household chores, and working in time for that man in my house whom I happen to love quite a bit, known as my husband.  My biggest problem was how best to save for Christmas, my biggest worry that my 3-year old was getting spoiled with too many sweets at his grandparent's house.  How distant that person seems to me now.

In the past week, there has been much coverage of the 9/11 tragedy - most of which I am unable to bring myself to watch.  I tell myself that I owe it to the memories of those fallen that day - to hear their stories, to cry for them, to grieve with those they left behind.  To marvel at their courage and the massive, senseless loss of life.  For these reasons, I'll probably pick the longest, saddest, most sob-inducing prime-time special to watch, and watch it I will.  I will cry until I ache, and afterward I will hug my babies and my husband, and I will be grateful they are here to hold in my arms right now, in this moment.  Then the next day, I will get up and think of other things, get a little distance on it again, until next year rolls around.

It occurs to me that there are some parallels here, for me.  I was young when those towers fell, and I still remember the feeling that the event had created a Before and an After in my life.  We had never experienced a terrorist attack, so in our reality, the threat did not exist.  When flying, our baggage was checked, but only cursorily.  Pocket knives were an essential tool a good southern boy was rarely without, not a potential instrument of death, and strangers were simply people we hadn't met yet - not people who might be expected to kill themselves, and us, in the name of a god for whom peace would never be good enough.

Another Before and After was created for me on March 1st, 2011, when my baby boy was diagnosed with an autism spectrum disorder.  I look back at the person I was before that day with mixed emotions, wondering that I could have been so blind, so naive to think that because I had already survived so much, worked through so much in my short life, that no other demons were lurking around the corner.  Surely I was golden, right?  Surely I could not be expected to conquer MORE than I had thus far, right?  I imagine God looking down at me that day and responding with an emphatic, "Yep."  And maybe those previous struggles, that previous survival, was the reason for that answer of His.  Maybe God could have given that earth shattering diagnosis to anyone, but He chose me, because He knew I could take it and run with it.  He knew that of all the mothers in the world who had been, were and would be in the future, I was Caleb's best shot.  He was going to need some backup in moving those mountains of his.

So if I could go back to that day and say anything to myself, it would be, "It's going to be okay."  Six months ago, I don't know if I would have believed myself.  At that point, I was so mired in panic and worry and denial and confusion, I don't know that I would have even paused long enough to listen.  I wish I could have told myself that six months to the day from that first neurologist visit, I would be back in her office again - (slightly) more educated, calm(er) and bearing progress charts. PHENOMENAL progress charts, as a matter of fact.  My baby and his therapists worked hard for every bit of achievement represented in those little colored squares, and I absolutely could not be prouder of any of them.

No, Caleb was not pronounced "cured", but he sure did put a smile (okay, an approving look) on that doctor's face, as well as that of every therapist that had worked with him.  I'm half convinced THAT group was more excited about his neurologist appointment than we were.  The official diagnosis was kept as PDD-NOS, but the prescription was simply, "Keep doing what you're doing.  Don't change a thing."

We couldn't have received a better one.