Thursday, July 28, 2011

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.

Tuesday, July 19, 2011

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!

Thursday, July 7, 2011

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.