Tuesday, August 30, 2011

T minus 2 days until we see the neurologist

So we see the neurologist Thursday, and I'm torn between excitement and hyperventilation. Excitement because we got a REALLY positive report from his therapist last night and hyperventilation because, well...I'm me. There's really only so many ways around that.
On the night in question, I, in my OCD, over-preparedness mode, emailed Caleb's therapists to inquire if I may, perhaps, be able to obtain a suitably impressive chart or graph to present to the good doctor to prove that I am not hallucinating Caleb's excellent progress. Shortly after, I get a call from the director, who is genuinely excited about my email and promising to evaluate him the day before his visit because she REALLY wanted his doctor to see these results. She started talking conceptual thinking skills and milestones and I was hearing phrases like, "I don't think we've ever had a child make so much progress, so fast" and my eyes started blurring. No, not from terminology overload (this time), but from tears. My baby was FLYING through his protocols left and right. I have never been so overwhelmed with pride and pure, unadulterated gratefulness. I think of all the nights I lay in bed, feeling broken and BEGGING God to spare my child, to reconnect all the nerves and synapses that had somehow, somewhere gone awry. "I just want him to be OKAY," I agonized. Billionaire or bum, I just wanted him to live a normal life and be happy. For the first time last night, I could see that coming. For the first time since all this started, I felt it may be, just possibly, okay to take a breath. I don't for a second think that he is "cured", but I caught a glimpse of what he is capable of, and it is AMAZING.

My boy--my sweet, lovable, courageous boy--he will move mountains. And he will sketch an elegant bow when he is done.

Sunday, August 14, 2011

In Which God Laughs at Me

I came to the birthday party prepared.  I was kinda psyched to have a party to which I just had to show up and not have to plan out every detail, buy food, clean house, cook food, clean house again, then rush around doing everything I forgot to do just after everyone arrives.  Then, after the party, clean again.  That said, it should have been relaxing to go to a party place, only needing to make the cake (which was pretty rockin', by the way.)

Yes, I do them on the side.  Call me. Therapy ain't cheap.

But, as previously blogged, I was nervous about how Caleb would do.  All I could think about was the times we had gone to friends' houses, or family gatherings, and how anxious he had been.  I was convinced he would not do well at all, so I came prepared - probably more prepared than if I'd done the party at our house.  I had the iPad, loaded with his favorite videos and all sorts of letter games.  I let him bring in his foam letter "R" that he'd sneaked into the car with him, crafty little thing that he is.  I lectured myself: "Self, this is good for him.  He's never going to learn how to deal with social situations unless he's exposed to them."  I had his therapists on speed dial.  I had emergency chocolate stashed in my purse.  I was READY.

I was a MORON who worried for nothing.

We walked in and he was instantly fascinated by everything in the place.  He wandered from place to place, investigating toys on display, cabinets, anything he could get to.  "Well," I told Self, "No one's really here yet.  I don't know that he knows what's going on."  

So people started arriving.  The first few were people he didn't know, and I held my breath.  "Hey Caleb!" the first mom said brightly.  What did my baby do?  Smile and make eye contact and say "Hi!"  (Okay, it was more like "hoy", but hey.)  The eye contact was brief, and he was soon busily getting into other things, but I was stunned.  NO anxiety whatsoever.  Not even as more people arrived.  He smiled at just about everybody who walked in, and even mugged and showed off for a few family members.  When the party started, he sat on his dad's lap and played with the iPad briefly, but mainly wanted to get down and wander around - just like every other 2-year old I know.  Between busily taking pictures with my cell phone, having forgotten my point and shoot (guess party experiences can't be THAT different from year to year), I watched Caleb.  My chest tightened when at one point, the instructor had the kids put their arms in the air and wave them - AND CALEB FOLLOWED SUIT.  It required a little prompting from his dad, but he did it, and he got into it.  He was watching the other kids, which is monumental.  Now, he did whine a bit since he was hungry and the party ate into his nap time, but he was typical-two-year-old whiny, not autistic tantrum-y.  When he was ready to go, he let us know.  "Bye.  Bye.  Bye," he chirped.  This in itself is amazing - he was letting us know, loud and clear, what he wanted.  I was so, so proud of him.  The few times he needed a little extra attention, my phenomenal husband took care of it so I could concentrate on Cade.

As I settled the bill with the owner of the place, Caleb wandered in the office, still telling everyone "bye."  The woman made the comment that he was a little chatterbox and compared him to her young grand-daughter, who was not interested in talking at all.  I let her know that Caleb was autistic, and had not spoken a word up until about 4 months ago, and how proud we were of all the progress he had made.  The look of surprise on her face was priceless.  When she asked if he would give her a high five, I told her yes, and she asked him for one. My baby ran over this complete stranger and gave her a huge slap on the hand.  I know this sounds like a little thing, but this child could not follow a single command just a few months ago, so this small gesture was the icing on the cake.  

So, in conclusion, I think God is laughing at my panic.  Every time I get myself good and worked up, something wonderful happens.  My kid was great at this party, my big boy had a blast (and came home with reasonably parent-tolerant toys) and my teenager tolerated it admirably.

And I didn't have to clean.


Thursday, August 11, 2011

A Race to a Meltdown

Maybe it's the fact that my house is a wreck.  Again.  Maybe it's the fact that I have been getting very little sleep, even less "me" time, and not eating well.  Maybe it's the fact that I haven't had chocolate in, oh, about 6 hours now.  Maybe (probably) it's the stress of planning my 4-year old's birthday party and worrying how my autistic 2-year old will deal with said party.  It's probably a combination of all these factors, along with the ever-present financial concerns of therapy, but I just feel DONE tonight.  As high as the highs are in this whole experience, the lows are just as extreme.  I guess it's the nature of the beast - as no two autistic individuals are the same, neither are two parents of those autistic children.

I wish I could be one of those people who look at the situation as simply the way things were meant to be, and deal with it as it comes.  We all know that mom, right?  What I like to term the Michelle Duggar (bless her heart) mom.  The woman who always has a smile on her face, who ALWAYS uses her patient, loving "inside" voice to impart sage words of wisdom and guidance to all God's children, including the twenty or so (I'm counting the husband) she calls her own.  Contrast that with my method of patience, teeth gritting, more (slightly less patient) patience, stern warning, time-outing, attempting-to-explaining, releasing from time out-ing, exasperation, MORE time-outing...well, you get the picture.  And this is just the method I use for the husband (okay, just the 4-year old, but they're remarkably similar).  All of this while eyeballing and analyzing every move the 2-year old makes, keeping up with therapy methods, getting our oldest settled with school, etc.

I feel like the worst parent in the world for admitting this, but I'm kind of dreading my big boy's birthday party.  I'm looking forward to it too, but that's mostly why I'm dreading it.  In my grand plan, my little boy (who's not a baby anymore, even though I'm trying not to think too hard about that) has a perfect day, with all of his best friends coming, getting the perfect mix of kid and parent-friendly toys (I hate you, Play-Doh) and his Mommy and Daddy being able to make this day all about him.  In reality, although his little brother loves him to itty-bitty pieces, Caleb will probably take one look at the large-ish assembled group of people, another at the unfamiliar surroundings and lack of his favorite distractions, and commence freak-out mode.  Usually, this involves him planting his hands firmly over his ears and clinging to me tighter than one of Snooki's dresses, throwing in a distressed whine now and then for good measure.  So, I'll probably spend the length of the party watching Cade from the sidelines, trying to do anything I can to distract and/or settle Caleb, and worrying about everyone else's reaction to his behavior.  The attendants at the party will attribute his crying to just another spoiled toddler with an ineffective parent, and I will feel miserably guilty for not being able to give Cade all the attention he deserves.  My husband will do everything he can to help (including attempting to soothe my nerves), but in meltdown mode, only Mommy will do.  With all the progress he's made, all the FANTASTIC things he's doing, outsiders will see him only as that little autistic boy, poor thing.

I don't know why this situation will be different than the other night at the car dealership, but it will be.  Maybe it will be the smaller space of a party-venue, maybe it will be the fact that he's familiar with these people--they are not just strangers passing by, but people who love and care about him, and will therefore attempt (with the best intentions imaginable) to interact with him when he is NOT in the mood.

Maybe I'm over-thinking this.  I hope and pray that everything will go well.  We're on a roll here lately, right?

I don't think anyone's told this kid he's autistic.

We bought a new vehicle tonight, a combination of necessity due to the crap-mobile's sudden strut failure and a small financial miracle, thank the good Lord. These past few months have been very humbling for me - I am a person who likes to have a detailed plan at all times, so surprises and learning to roll with the punches has proved difficult for me. But every time I've gotten really, truly, frantically-searching-for-Prozac stressed, something has worked out, as in this situation. In church, we were always told, "Let go, and let God.". That sentiment has echoed in my head quite frequently lately, so that's become my new goal, mentally referred to as "Shut up and take a back seat already."

So, off my soapbox and on to our experience at the dealership. Naturally, Mommy was fraught with nerves, thinking of all the things that could go wrong with Caleb along. This trip would be challenging with an average 2-year old, much less an autistic one. I watched anxiously as we entered the brightly lit showroom, were greeted by the strange salesmen, and were surrounded by unfamiliar noises. My kid's first words? "Down!" (Okay, fine, it was more like "Dow," but you get it.). He rushed around, getting into this and that, and for once did NOT want me to hold him, which was a welcome change from his recent clinginess. Random strangers spoke to him, and he LOOKED UP AT THEM, and they ruffled his hair and he DID NOT CRY, or even act like he minded. He made eye contact, and looked to us for a reaction when something unexpected happened, and I kept thinking, "Doesn't this kid know he's autistic? He's not supposed to be doing any of this.". I flashed back to buying another vehicle at the same dealership when Cade was the same age, and Caleb was acting the exact same way as his big brother had in the same situation. It amazes me, the progress he's made, but it also involves some other mixed emotions. I wonder, if he doesn't "qualify" as autistic, what IS he? What else is going on? I get so excited with new skills he picks up, and then I hit the doldrums when someone else with a child the same age talks of having a conversation with their child and them comprehending and I know Caleb is not capable of that as things stand. I almost feel guilty when I hear of other autistic children having much more serious issues then Caleb, but then I also feel isolated around the other, neuro-typical kids his age. It's very odd, being in the middle.

So, while I'm very proud of Caleb, some days I'm still terrified for him. Who am I kidding with "some days?". I'm terrified EVERY day. But I was so, so proud of my baby tonight. My little schitzautistic.

Monday, August 1, 2011


I've been brooding a bit this weekend.  I know, shocking, right?  I had a huge high with Caleb's recent evaluation results, and then I got a little thrown off by something he did Saturday night.  One of the positives of Caleb's situation is that he's a little atypical in a lot of ways.  I feel a little guilty sometimes, reading about the struggles of other parents, when my son presents little of the most common major problems.  No rocking, no head banging or self injury, no screaming fits, no rigid attachment to schedules.  But as much of a blessing as it was to catch his condition so early, it was also a curse, in a way - I don't know what to expect.  Being so young, he's still unaware of a lot of things, so who knows what may become a problem and when - and how he'll deal with it when the time comes.

We have a mat that we put down on the bottom of the kids' bathtub to keep them from slipping, which I take out once a week to wash (Side note: Silverfish: Creepiest.  Things.  Ever.)  Anyway, the mat was being laundered at bathtime, so we had to do without.  The minute Caleb saw the tub, he started crying.  Covering his ears, and crying.  And my heart plummeted.  I knew it was the lack of the mat that had him upset, and it was such a helpless feeling.  My head told me to calm down and power through it - he was never going to understand that change was okay if he was never faced with change and allowed to deal with it.  My heart wanted to run into the laundry room and rip that stupid mat out of the still-running machine.  Still another part of me reminded me that hey, my kids are quirky.  My 3-year old was terrified of my mom's garden tub until he turned 3.  Literally, it was like trying to bathe a cat in that thing.  Maybe my kids have some sort of fiberglass bathing instrument phobia.  It's possible, right?  TLC is in the business of outing people who do weird stuff all the time!  My kids are positively bland in comparison to some of that stuff.

Needless to say, I steamrolled through the bath, sans mat.  Once we were out of the tub, he was fine.  But I spent the rest of the weekend fretting.  He'd never shown any attachment to schedules or routines before.  Should I expect more of this?  We are not schedule oriented people, really, so he'd been faced with change plenty of times before.  What set this off?  Why now?  Should I have handled it differently?  Where do we go from here?  Why can't I stop THINKING about this?

My son's therapist likes to tell me when I get worked up about something he's doing, that kids are WEIRD.  Take the average class of 2-year olds and an ABA therapist is going to want to treat at least 1/3 of them.  They just do strange things, and kids on the spectrum are no different - just because it's weird, doesn't mean it's necessarily ALWAYS an autistic behavior.  Luckily, I remembered this the next night when I bathed him again, and I was encouraged to see that his reaction was a little different this time when I deliberately left out the mat.  He did not react at all when he saw that the mat was missing, and when I put him in the tub, he clung to the side like he was petrified of slipping.  He whined, but did not cry or hold his ears, although my poor baby did NOT look happy with me.  So, I calmly told him to tell me "mat", and once he did, I replaced the mat in the tub.

Look at me, acting all rational-like.

I don't know if this was a true autistic behavior or not.  He's had a lot of behaviors that have started out autistic but that he's learned to cope with in a very un-autistic way.  Case in point: he cried and held his ears the first time he heard my blow-dryer.  The second day, he held his ears and stared at it from across the room.  The third day, he stood next to me, held his ears, and glared at it.  Now he's not crazy about it, but has decided that it poses him no ill-will and will dart past it if he needs something badly enough.  Otherwise he avoids it, but it does not seem to distress him.

For the most part, I am very, very grateful for how well he is doing.  It's easy for me to not sweat the small stuff when I read stories such as Lost and Tired's (www.lostandtired.com) and I ache for what that family has been through, and is still going through.  As I hold my babies in my arms, I think hey, I can deal with quirky.  If the biggest problem we have is needing to make sure the bath mat is down at all times, we're doing good.  But when he's holding his ears and crying and I can SEE the distress on his face, I want to stomp my foot and throw a plate like Richard Dreyfus' wife in Mr. Holland's Opus and scream, "I. CAN'T. TALK. TO. MY. SON!"  I want to know WHY he's so scared of groups of people, and missing bath mats, and the stupid marching band song on Bubble Guppies.  I want to be able to ask him what's wrong and have him TELL me, like other 2-year olds.  While his communication has come a long way, if he's really upset, he looks at me with this anguished look on his face and just cries.  Yes,  he is learning to communicate, but it does not come naturally to him.  When he's that upset, the only language he speaks is that of tears, and it breaks my heart.

These episodes come few and far between, but will they always, I wonder?  He's improving rapidly with therapy, but can I expect the problems to ever be truly solved?  There's still so much ahead of us - school, friends, birthday parties.  Thinking about it makes my chest tighten with worry, so I try to focus on the numerous GOOD things he's done lately, instead of the bad.

Okay, now that I've gotten my brood out, I'm going to catch up on Big Brother.  Don't judge me.