Thursday, June 30, 2011

And, there it went again

I mean, really.  I've had how many months to adjust to this?  It's not like I'm any stranger to neuroses, and yet I still manage to be embarrassed (and, retrospectively, slightly alarmed) when one bad day somehow tips the scales and slides me into Crazytown.
I've decided that I'm writing a manual for coping with life and a special needs child.  Rule #1: check your sanity at the door, people, and don't expect it to call again anytime soon.  When you think of it as a foregone conclusion, it's really not so bad - kinda like the way I feel about finally giving up on trivial things like housecleaning, shaving my legs regularly, and managing to remember the correct kid's name to yell when one of them is misbehaving.  There's a certain peace that comes with acceptance.

So, on to today's blog, subtitled: The Day I Bid A Fond And Sentimental Goodbye To My Sanity.

I don't know why (except to think that God has definitely got a sense of humor), but lately things just haven't been going my way.  Mostly little things, things people with a consistently stable anxiety level would find merely frustrating, but then there's me.  And said neuroses.  So when the car stereo guy screwed up what was supposed to be a congratulatory (and relatively cheap) present to myself for a recent accomplishment, I was frustrated, but managed to still cling tightly to my Zen. After all, he was nice, right?  And they're trying to fix it...
Then, when the windshield wiper motor in my aging but desperately needed and paid off car went out, I took a deep breath.  Things like this happen to people every day, I told myself.  And tried to ignore myself when Myself demanded, "To people who have huge therapy bills due IN THREE DAYS??"
But the tipping point was the interns.
My insurance company and I have a complicated relationship, mainly defined by the fact that my kid needs very expensive therapy, and they have an aversion to paying very large therapy bills.  Like I said, complicated.  So I decide to call the insurance company one morning on my work break, after checking their website and again finding that our claims are "in review.". I've since discovered that this term, roughly translated, means "Hold on while we try to figure out a way out of paying this.".
Meanwhile, unbeknownst to me, my coworker, who sits across from me, has been assigned two interns for an hour.  Not just any hour, this hour.  What I am sure is now thought of, in the minds of these two poor, fresh faced, defenseless college kids, as the "I have NOT had enough drinks to be able to deal with this" hour.  Unfortunately, I do not discover this until after I am dialed in to the insurance company and terrified to hang up, lest I never get through to an English speaking representative again.  The details are long and complicated, but the gist of it is that apparently no one in insurance companies talks to one another, and Cyd's therapy bills are not getting paid any time soon.  Add to that a little patronization from a representative whom I am sure has at least one perfectly neurotypical child at home, and I started crying.  A lot.  I am not usually an emotional person, and cry pretty rarely, but when I do, it's not pretty.  So my sweet, long-suffering coworker is frantically trying to distract the increasingly alarmed interns by talking over my hitching breaths and ugly crying, and the representative on the phone is deciding no, she definitely does NOT make enough money to be dealing with this.  I just want this day to END already.  Multiple departmental transfers later, not much was done, except the representative adopting a "Please don't jump" tone of voice with me.  I'm considering playing the Mean Girls DVD on loop to gear up for a conference call with these people.

Now, if you'll excuse me, I'm off to plan ways to avoid two college kids for the rest of their internship.

Sunday, June 26, 2011

A little history

Okay, so my house currently looks like an episode of Hoarders: Children's Toys Edition, but I thought to myself, screw it, I'm working on the blog.  I am excellent at excuses, by the way.
So, to back up a little, I want to detail Caleb's story.  For us, there was no single "Aha" moment when we realized something was wrong.  He was slow developing physically, but I have a family history of those issues, and our older child was also slow to walk and climb, and was a little bit behind verbally, so we didn't think anything of it.  Cade had caught up, and so would Caleb, we rationalized.  The lack of verbal skills soon became puzzling, but everyone has a story for you when your child is developing differently - "Well, my cousin's kid didn't talk at all until he was three, and he's a physics professor now."  So, naturally, my mind raced ahead to Harvard classes and degrees, and eventually to Nobel Peace Prizes.  Denial is also something I excel at.
Doctor's appointments were made, and we were still a little at sea.  Our pediatrician is an excellent doctor (who I keep trying to talk into going into family medicine so I can become a patient myself, but he's still holding out on  me.  Turns out he's a very stubborn man.)  Caleb didn't really meet much of the typical criteria for an autism diagnosis - he was not talking, but was also not exhibiting any other "red flag" behaviors, like rocking or banging his head, or spinning in circles.  He had no attachment to routines, no social anxieties that we'd observed, nothing other than the lack of speech, and lack of pointing, which turns out to be a pretty significant symptom, incidentally.  We had his hearing tested - nothing (except a big fat medical bill).  So, our pediatrician referred us to a state program that provided speech therapy assistance.  A few weeks in, the therapist dropped the "A" bomb.  Autism.  I can still remember the frozen fear that filled me at that word.  My mind went completely blank - I had no idea where to go from there.  Something like that had never even occurred to me, which is shocking, since my mind is usually busier than a hamster's wheel, stressing about just about everything I can come up with.  So, we went to the neurologist our pediatrician recommended, and I have never been as scared in my life as I was at that appointment.  Logically, I knew that my child was what he was, regardless of what a doctor wrote down on a piece of paper, but I couldn't help but pray that that "A" word wouldn't come out of her mouth - if she didn't say it, maybe it wouldn't be true.  Maybe the speech therapist was wrong - what did she know, anyway?  She only spent an hour a week with him, and we were his parents.  I was his mother, I would have noticed, right?  My mind raced as my husband, a former psychologist, and the doctor conferred while Caleb busily banged through cabinets.  We went down the checklist, and again, Caleb was a little puzzling.  The speech was a problem, but that was the only "red" flag.  He had other yellow flags, but not enough to make a diagnosis.  So, she settled on another diagnosis - PDD-NOS, pervasive developmental disorder, not otherwise specified.  Only time would tell, she told us - we could come back in six months and, after re-evaluation, he could be classified as autistic at that point - he was still very young.
Wait and see is not a good game plan for me.  I like to plan.  I like to research.  I like to KNOW WHAT THE CRAP I'M DOING, and when I don't, I get anxious.  So, naturally, anxiety ensued.  My friends, family and coworkers were all very supportive and sympathetic -  although looking back, I'm convinced at least a few of them were secretly considering crushing up a few happy pills and adding them to my morning coffee when I wasn't looking. 
For the first time in my life, I felt completely out of control.  I did as much as I could - researched therapies, schools, at-home methods, and got him signed up for a great Applied Behavioral Analysis program.  Even then, I felt helpless.  This wasn't anything I could FIX, and that made me so angry.  Around that time, Caleb started learning his letters.  We didn't think anything of this - if anything, he was "late" learning them, since Cade had learned his at 18 months.  But Caleb seemed to take comfort in them - he would carry wooden ones around with him, and focused on the letters on various toys we had.  Still, nothing to any extreme degree - we could always distract him if we tried, and he did play with other, non-letter toys.  The letters led to numbers, and we were proud of him, although still a little confused.  His speech picked up with therapy, and he had no problems expressing himself - I have a crystal clear mental picture of him at just barely 2, toting this huge box of goldfish to me that he'd pilfered from the kitchen cabinet, proudly announcing, "Shish!  Shish!"  It still makes my heart smile to think of it.
So, here we are.  Some new things have popped up since we got started on this ride, as the doctor suggested they might.  He doesn't like large groups of people, although he will usually warm up about 10-15 minutes in and be fine, but he still likes to keep me in sight.  He's very affectionate, especially with me, but tends to be clingy.  I'm still hoping this is a 2-year old thing, since I remember Cade doing the same thing, and I had extreme separation anxiety as a kid.
Unfortunately, this is the nature of autism.  No two children are exactly alike, no set of symptoms the same.  Just as I'm relieved that he doesn't exhibit one symptom I hear about, he does something else that makes my heart race in my chest, and I panic, thinking, "Is it autism?  Or is it a phase?"  Kids this age are quirky by nature, so I can never be sure.  One day he'll play with his letters for long periods of time, sending me into a tailspin of worry, the next he's crafting elaborate plans to sneak his favorite snack out of the kitchen cabinet, and shouting "RO!" into a toy telephone like he's talking to his (apparently very hard of hearing) granny.   All we can do is focus on the positive -  his therapists and doctors are very encouraging, and the research I've done on my own has been enough to make me realize that it could be so much worse, and he's got a lot going for him.  Emotions are conflicting - a terrible love tinged with worry, sadness and a fierce protectiveness.  And guilt.

Hey, I am a mother, after all.

Saturday, June 25, 2011

Kids are still kids

So, I have every intention of penning my next, potentially brilliant blog detailing more of Caleb's story soon, but for now I figured I'd share a little window into raising boys.  When we learned we were having another boy on our third and last go-around, I immediately started having visions of my two little ones as best friends - envisioning them playing together, fighting with each other, growing up together, and being there for each other after their father and I are dead and gone.  You know, all that cheery maternal fluff.  The day we had to explain to our 3-year old that his baby brother was a little different was one of the hardest days of my life, and there have been times that I have mourned what I thought was the loss of that special sibling relationship.  And then there are nights like tonight, which shine a little hope (and a healthy dose of humor) into our situation.  Poor Caleb was engrossed in the TV and absentmindedly decided to sit down on the lip of the half-full laundry basket currently residing in my living room (I'm getting to it, I promise).  What resulted was a basic function of physics - weight overbalanced, he dropped to the floor, the other lip of the basket flying up and knocking him solidly on the back of his head.  During this process, Cade, my 3-year old, is sitting on the couch nearby.  There was a moment of silence after the thump, Caleb trying to decide if it hurt enough to cry about, Cade trying to decide how mad Mommy was going to be if he laughed at his little brother's pain.  Typically, laughter won out, and he cracked up.  Caleb took one look at Cade, rejected the possibility of joining in the laugh fest, proceeded to shoot his brother an ugly look, then ran to me, boo-hooing pitifully.  I might have believed it wasn't ALL for effect if it hadn't been for the smug look he then shot Cade over my shoulder once I had picked him up and shown him suitable attention.
Who knows what the relationship between those two will be one day.  Autism being the fickle monster that it is, it's impossible for us to get any solid sense of what it will be now.  But incidents like this help keep me positive.  Their relationship may not be the partners-in-crime-and-friends-forever scenario I had planned, but that doesn't mean it can't be good - even great, maybe.  Hopefully we can do a good enough job raising all three of them that each child's differences will be seen as a part of who they are, and accepted instead of being seen as something that's "broken."

Thursday, June 23, 2011

Annnnd, here we go

It's been a mere three months, three weeks, and one day since I was introduced to the diagnosis "PDD-NOS."  Or, in other words, "He's on the autism spectrum, but not quite autistic-y enough to get a real diagnosis.  Good luck with that."  Only my kid could be so confused about his degree of disability.  And on that note, I'll introduce myself.  I'm a young-ish wife and mom of three, battling pre-teen-dom, potty training and autism all at once.  The aforementioned three months, three weeks, and one day ago, I received my label - the Parent of a Child With a Disability label.  Another world opened up for me that day, and by "world", I mean more along the lines of a yawning pit of denial and anxiety attacks.  At least at first.  I'm an information hound - my first instinct (after considering and rejecting the possibility of prescription assisted relaxation) was to gather information.  I wanted newsletters, I wanted blogs, I wanted how-to lessons...but found very little.  What I did find only served to depress me.  Where were the parents who had survived this with their sanity intact?  Where were the parents who were confident and capable, who didn't live a life filled with constant worry, sleepless nights and poor personal hygiene? While the first is yet to be determined, I can tell you that I'm a sketchy candidate for those other qualifications, but I'm plugging along.  This blog is my attempt to give a voice to autism - or at least a unique one.  Autism is, by turns, a number of adjectives - terrifying, isolating, bewildering, frustrating.  But it can also fill one with amazement, pride, hope, and humor.  Some days I am defensive and angry at this THING that I feel is cheating me out of truly getting to know my child as other mothers around me are.  Another day I am excited and slightly (okay, not always slightly) smug in recognizing a new direction my son's brain is taking ("Take THAT, neurotypical two-year olds!  Screw your talking in complete sentences, my kid knows his STATES!")  As parents, we have an ingrained need to keep that stiff upper lip, get the job done, sacrifice for our kids, and make it all look easy to the rest of the world.  The problem with this being that while everyone is busy pretending they've got it all in hand, it's easy to feel like you're the only one floundering.  Hopefully this blog will inject a little reality into what it's like raising a child with a disability.  Maybe this thing will end up being a diary, something I can look back at one day with my children - a testament to my typically developing children on how to handle (and sometimes how not to handle) life's curve-balls, and a love letter to my baby, letting him know that although Mommy didn't always have a clue what in the world she was doing, she put her heart into every effort.  Alternately, maybe it will take off and make me a blogging superstar and I'll go on talkshows and make lots of money that will all end up going to therapy anyway.  In any case, here we go.