Great Day in the HOUSE!

Okay, I know it's been a while since I've posted.  I could offer all kinds of excuses, but the bottom line is that a) I'm lazy and b) my life is actually kinda boring.  Plus I'm studying for kind of a big-deal test which I will hopefully be taking within the next few weeks.

Okay, fine, I just cracked the book today--but crack it I did!

Anywho, onto the blog post, which is, incidentally, what I'm here for.  Last week we got some GREAT news regarding Caleb's progress in therapy.  His ABA program puts "protocols" on him periodically (I'm learning all SORTS of new terms here lately).  Basically, they teach him new skills and monitor his progress on achieving them, including everything from imitative and play skills, to verbal communication and everything in between.  Well, my little super-munchkin "mastered out of" SIX in the last month.  I have no frame of reference, but I'm assuming from the director's tone of voice in imparting this information that this is GREAT!  They re-evaluated him and he is testing WAY higher on the little graph-y thingee than he did when he started, which puts his scores falling "primarily in the appropriate level for his age."  I was FLOORED when she told me this.  I just couldn't be prouder, or happier that we made the decision to get him early, aggressive therapy when we did.  It's been a long and scary road, but it's SO encouraging to see progress.

I had a conversation with Caleb's sitter today (he's in ABA three days a week, and goes to an in-home sitter for the other two) that was very encouraging also.  She went on and on about how much progress he's made, and what a different child he is now after just three months of therapy.  "He's just so HAPPY now," she told me.  During what I now refer to as The Dark Time Before Therapy, he had a lot of problems at her house, staying mostly unhappy and mute, crying for long periods and not interacting much.  I struggled with a lot of guilt, knowing he was a trial for her, but not knowing what else to do since the alternative was a standard daycare setting, in which I KNEW he would struggle even more.  She made a comment that almost made me cry (okay, fine, I did--but not until the drive home).  She said that the other kids, all under three, had noticed there was something not right with Caleb, and when she would try to get Caleb to say something, they would tell her, "Caleb can't talk."  That broke my heart to hear, to know that children hardly more than babies had noticed that there was something different about my little man, when it had taken me so long to accept it myself.
Now, the same children never say things like that anymore and look at him as more of an equal.  One little girl even waved to him today, cheerfully calling out, "Bye, Caleb!" as her mother and I loaded our respective children into their car seats.  If I hadn't seriously considered the possibility that her mom would have been slightly alarmed at my actions, I would have run over and kissed her.  One of the (many) things I have worried about is the possibility that Caleb will never have any real friends - that he will go through his life a solitary soldier, coping with but never really enjoying life to the fullest.  What fulfills a (typical) person's life but people and human interaction?  I was just learning to accept the possibility that my idea of fulfillment might not match his and that that was okay, when this happened.  One little smile and wave from a curly haired little moppet, and hope was born.

Because Caleb, my little MIRACLE, smiled back.

Things I Wish My Autistic Child Knew (Totally Ripped Off)

Shout out to Rob at www.LostAndTired.com for this post, I had to pass it on.

Things I Wish My Autistic Children Knew

1. I’m sorry I have fits, but I’m not a spoiled brat.  I’m just so much younger on the inside then I am on the outside.

2. I’m easily overwhelmed because I see and hear everything.  I hear the lights hum and clock tick. Everything is so loud it makes my head hurt all the time and my eyes hurt from all the bright lights.

3. I’m not stupid, I’m actually very smart. I just don’t learn the way you want me to. Please learn about Autism so you know how to help me better understand what you are trying to teach.

4. Please don’t be mad at Mommy and Daddy because we don’t come over for holidays or birthdays. They really want to go but I don’t do well at another person’s house. It’s too overwhelming for me and they know that. They don’t go because they love me, NOT because they don’t like you.

5. Please have patience with me. I try really hard to make good decisions but I can be very impulsive at times.

6. Yes, I have Autism but that doesn’t mean I’m less of a person because of it. If anything, I’m actually more of a person in spite of it.

7. My house might be messy sometimes. (Editor's note: Can I get an amen?  Anyone?) It’s because my mommy and daddy spend all their time trying to find new ways to help me or teach my brother to talk.

8. Just because I can’t talk doesn’t mean I don’t understand what you are saying. My feelings can be hurt just like yours.

9. I wish my mommy and daddy knew how much I love them. I have a really hard time with emotions and I don’t always like to be touched. But I love them more than anything in the world, even more than my Legos.

10. I know I can be frustrating, but don’t tell me I won’t amount to anything because I have Autism. If you love and support me I WILL do great things in my life in spite of my challenges.

The things I won't do (or blame on) my kids

I'll be the first to admit that I've never really jumped on the environmental wagon. I don't really have anything against the green thing, I guess I've just had a few too many whack jobs put a bad taste in my mouth about it. Plus, as everyone seems to want to get a piece of the pie, "green" products generally equate to "expensive as crap" products. Not that crap is expensive, but, oh, well...you get the drift. It's late, and I'm a little punch drunk. Anyway, with resources severely limited these days thanks to my little therapy monkey, if it ain't cheap, mommy ain't buying it. So, imagine my delight when a family friend passed along a recipe for making homemade laundry detergent that is not only low on chemicals, but EXTREMELY cheap. Now, one thing you'll need to know about me before this relationship goes any further is that I am a grade-A nerd. I LOVE finding out how things work, and I love projects, so this prospect made me one happy camper. I haven't been this excited since I discovered cleaning with vinegar (See, told you. My life is extremely sad sometimes). Side note: when posing the question, "Does making my own laundry detergent make me a hippie?"...be prepared for a brutally honest response. The general consensus is a resounding yes.
So, anyway, after a few days of eye rolling, head shaking and amusement from coworkers and friends alike, I made my way to the local store to buy supplies. I cheerfully stocked up on all the ingredients, including the cutest robin's egg blue bucket you ever did see, by the way. Wisely, I did wait until all materials were purchased and I was fully committed before notifying the husband. This made all the huffing, second round of eye rolling and what-am-I-going-to-do-with-her wondering kind of useless. We've been married for 8 years now, and we've more or less got this down to a routine. It works for us.
Annnnyway, I am now departing on a grand experiment that may or may not end badly. Either way, I'm using the kids as a crutch on this one. The lack of foreign chemicals appeals to my paranoid mommy side, and the price difference between the homemade stuff and the store-bought makes me feel like I'm doing a little more to contribute to the therapy fund. The nerdy kid inside just wants to experiment already.
Wish me luck!

Look! It's a Light at the End of the Tunnel! Please, God, Don't Let It Be a Train!

I've got to brag on my kid a little bit now.  We recently met with his therapists, and I've since affectionately dubbed him my little schitzo-tistic (say it fast, you'll get it).  I mentioned before that Caleb was a little bit of a puzzling case, autism-wise, and my baby is nothing if not consistent in his inconsistency.  For those of you who may not know much about autism, the term "autism spectrum" is used to describe the array of potential symptoms present in any diagnosis, and it's a HUGE array.  Some children are mildly affected, others severely, exhibiting symptoms from mild social anxiety and OCD to tantrums and self-destructive behavior.  There are, however, certain hallmarks - things that are ALMOST always seen in children on the autism spectrum, and Caleb seems to be lacking quite a few of them.  Now, don't get me wrong, my denial phase is firmly in the past (on my good days).  I know my child is somewhere on the spectrum, although he seems to be merrily sliding along toward the high functioning end of the scale here lately.  He will probably always be a little quirky, and yet will still be regarded as relatively normal when compared to certain branches of the family.  But I digress.  One of the hallmarks of autism is a lack of comfort with social praise, or any sort of attention, really.  You can't really clap for an autistic child's achievements, most of the time, as they will either be made uncomfortable by this, or have trouble distinguishing positive connotations from negative and it would not matter to them at all (I'm probably on shaky medical ground here and should include the caveat that I am not, in fact, a medical professional).  The long and short of it is that my kid doesn't want you to clap for him, he wants APPLAUSE.  And a "Yay" thrown in for good measure.  "Good Job" never hurt anyone either.  When he does things, he'll look around to make sure someone's watching.  He brings things to our attention, which is not typically characteristic of an autistic child - at least naturally.  Imitative play and learning through observation is also rough, and my baby is ROCKING those skills.  His verbal skills have picked up and he's copying just about every word we throw at him these days.  He's still very quiet, and has trouble in group situations where people are focusing on him, but it's progress.  HE EVEN FED A STUFFED MICKEY TONIGHT, PEOPLE!  Granted, I demonstrated first, but imaginative play is usually pretty rare, so this is huge for us.  His therapists are extremely pleased with his progress and we couldn't be happier.  So, yay therapy!

Score one for the little guy

I'm trying to decide on a theme song for this post.  I'm torn between "We Are the Champions", by Queen, "Rip Her to Shreds", by BoomKat (thank you, Mean Girls soundtrack), and the theme from Rocky, by...whoever did the theme song to Rocky.  Feel free to read on and weigh in.

The last time I posted, I was gearing up for a conference call with my insurance company. I am, by nature, not a confrontational person. I like to talk trash, but inevitably, when the time comes to put up or shut up, I panic, my mind goes blank and I stumble through the conversation, only to be haunted by what I should have said for the next few weeks after the incident. This is why I love Dina (shout out!). Dina is now my personal barracuda, an employee at my son's therapy center who handles the insurance filings and is now a rock star in my book. She offered to conference call with me to my insurance company to try to get things straightened out. Unbeknownst to me, Dina had been trying to call my insurance company herself for a while, only to get transferred repeatedly to their "provider" department, aka "Press-One-For-English, Haha-Just-Kidding!" land. Knowing what I know now, I can only imagine that this was intentional, and they somehow saw Dina coming. This conference call was undoubtedly the most entertaining time I've had in quite a while. After being transferred to the "These-People-Pay-Our-Premiums-So-Be-Nice" department, Dina proceeded to take a sip of water, clear her throat, make sure her claws were thoroughly sharpened, and tear the representative to itsy bitsy, teeny tiny shark-bait-sized pieces. Excuses?  No ma'am.  Lost claim?  Let me tell you how you're going to fix this, honey.  She literally steam-rolled over the girl and no kidding, I had to mute my phone to keep them from hearing my laughter. The whole time Dina's doing her thing, I'm mentally hiding behind her back like a kid being picked on at school, cheering her on. "You go, Dina! Go on with your bad self!". Apparently my school yard self is pretty ghetto. And stuck in the 90's.

So, in conclusion, Dina simultaneously got the job done and probably put both our names on some ominous insurance company LIST, but I don't care. I was deliriously happy once I realized I was actually going to get PAID, until I realized it's all going right back into therapy and I'm probably going to drown in debt anyway. Still, very excited, since my kid is doing PHENOMENAL, by the way. Definitely money well spent.  But it leads me to wonder - how is the average, barracuda-lacking person supposed to DO this?  Are the insurance companies really that sneaky?  I like to think I would have gotten it straightened out myself eventually, but who knows.  Working for an insurance company (albeit not a medical insurance carrier), I've always been a little skeptical of the insurance-companies-are-evil line.  But I've heard enough horror stories now that it makes me REALLY nervous about this whole process.  Hopefully now that we have a suddenly-very-nice insurance company contact, this process will go a little smoother from here on out.  But if not, there's always...

OOOOOOH, Barracudaaaaa!

Annnd, we have our theme song.

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.

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.