Tuesday, August 30, 2011

Boog vs. Monkeys

Okay, so, young children tend to have favorite objects or themes, yes? Some kids like dinosaurs, some kids like princesses, etc., etc. Well, autistic children have these nifty things called "fixations", which means basically, you take that normal amount of toddler obsession for a certain object or theme and you crank it to 11. Or 12, possibly.

The Boog's current fixation is monkeys. He goes apeshit for anything with monkeys on it (sorry, I couldn't resist). On a side note, not really a Curious George fan, because, as my biologist husband shouts in exasperation at the television every morning, Curious George IS NOT A MONKEY! HE'S AN APE! BLEEAARRGGHH! Apparently the Boog appreciates and respects this difference. He is his father's son. Anyway...

The problem with fixations is that they are obsessions so strong that they tend to cause problems. I am firmly convinced that his love of monkeys will be my son's downfall. You know what they say: the love of monkey is the root of all evil. Sheesh, I'm on a roll today...

Thus far monkeys have caused the following distracting, painful, or embarrassing snafus:

1. At the Boog's speech therapy group, they sing that Monkey Alligator song. You know, the one where the alligator eats the monkeys one by one because children delight in murder and mayhem? So, all the kids get a little stuffed monkey to hold and the alligator comes by and eats them one by one. The children love it. They shriek with delight...except for the Boog. The Boog will not give up his monkey. He. Will. NOT. Now, this is a child with fine motor delays who can barely hold on to a toothbrush, but he grips that thing like his life depends on keeping that monkey. When the therapist finally pries it from his tiny fingers, he howls in great despair and is generally cranky and uncooperative for the rest of the session. Oops. Monkeys - 1, Boog - 0.

2. The Boog now carries this fabric block with a picture of a monkey on it everywhere with him. It's kind of dirty and gross, because he likes to rub it on the floor and then give it kisses. Ew. Anyway...the other day, we were walking in the parking lot at the grocery store. Dylan and I stopped so he could hand me the Peej, and the Boog, entranced by the sight of the monkey block he was holding out in front of himself, kept walking and went straight over one of those cement block thingys that stops one's car from running over the sidewalk and into the front of the store, because apparently people don't know how to park. Conk. Ouchmyface. Luckily he didn't lose any teeth or break anything, but he got a bloody nose and has some wicked bruising from his chin to his forehead. Monkeys - 2, Boog - 0.

3. Now for the awkward...The Peej has these pants with a smiling monkey face on the butt. I don't know why clothing companies feel it necessary to put things on the butt of babies' pants, but it's a big thing right now. So, Pippa was wearing these the other day and laying on her tummy, monkey-side up. The Boog, walking by, monkey block in hand, spotted the monkey on PJ's butt and immediately dropped the block, smiled a big smile, leaned down and began to rub his face all over the monkey...on his sister's butt...yikes...Monkeys - 3, Boog - 0.

You see why I'm concerned. Monkeys have thus far caused the Boog to misbehave at school, injure himself, and unwittingly commit mild incest. Bad monkeys. Bad bad monkeys.

Friday, August 26, 2011

Magical Boog and Me

It is an odd experience being the mother to a kid with special needs. You have the schedules and the therapies and the doctor appointments and the constant explaining, "This is Rylan, he probably won't say 'Hi' back to you, he's autistic", and the accepting and kindly brushing off of sympathies from people who just don't get how awesome it is to be the Boog's mother...

...and then you have these quiet moments at home when no one else is watching when you become aware that no matter how on top of things you are out in that world of doctors and therapists and other parents, you really have no clue at all what you're doing and no idea of how to properly manage this magical being you've been entrusted with.

I really do think of the Boog as a magical being. Some, perhaps lesser educated, people might think of a person with special needs as being less than a whole person, as if their emotions and thoughts were somehow smaller because of the labels we've put on them. I have no doubt at all that the Boog is a whole person, I just don't have access to most of him. It's like loving someone you only see in your dreams. Half the time I spend with him, it seems to me that he's some place else entirely.

I have, on occasion, described raising the Boog as raising a large, extremely advanced baby, mainly because he's non-verbal and I mostly have to guess at his needs and desires, but this is both a disservice to the incredibly bright and whole person he is and inaccurate. It's really more like raising a fairy or a merperson or something. I have said that it's like trying to communicate with someone who speaks a different language, but it goes deeper than that. We not only don't understand each other's languages, we don't understand the very methods we use to try to communicate with each other.

I also occasionally think, usually after a particularly grueling therapy session, well how dare we insist that he live in our world, speak our language, appreciate our things when he has his own very rich inner world that he lives in? The trouble is, though, that he has to live in our world. I can't live in his. He has to at least try to learn to talk, read, write, add and subtract, go to school, graduate, get a job, get married, etc., etc., etc., because there's nothing else to do.

So there are times when I sit and watch him quietly watching the gold-colored doorknob for half an hour and I have no idea at all what he's thinking and no connection is possible. Then, there are times like tonight when, after taking a header onto the concrete earlier because he was too mesmerized by his monkey block to watch his feet, he needs a little human contact. He was crying in his bed and I went to him and picked him up and put him on my lap and rocked with him and sang his lullaby. Instead of pushing me away with stiff arms, he laid his little head on my chest and wrapped his arms around me and when the song was over, he looked up in my face and whined and put his hand on my mouth to let me know he wanted me to sing it again, and I did - three more times.

Then I put him back to bed and I cried, because it is so hard and so wonderful to be his mother.

Friday, August 19, 2011

The Boog Speaks...Well Kind Of...

Obviously I haven't gotten the chance to do all those fancy things to the blog that I alluded to in the last post. What can I say? My children are anti-sleep. I promise it's coming...eventually...

Anyway, so I wanted to talk about a very exciting development: the Boog is starting to communicate. No, he's not talking or signing. He's handing us pictures.


Okay, so there's this nifty thing called the picture exchange system. Non-verbal kids get a bunch of cards with pictures of objects and activities on them and they can hand them to a caregiver to request items, answer questions, etc. Cool, right?

As you can imagine, the Boog made this system infinitely more complicated than anyone could have foreseen. He wouldn't be the Boog if it was easy. He threw a wrench into the works by falling in love with the picture cards! He loves to hold small items and feel them all day long (his therapists call them fidgets), and the cards were apparently just the right size for fidgeting. Thus, all early interactions with the picture cards turned into,

"RyRy, give Mommy the card to get block."


"RyRy, give Mommy the card."

So ignoring you, Mom.

"RyRy, look, block!"

Uh huh. Yeah.

"RyRy...don't you want the block?"

No, it seems vitally important to you, though, why don't you keep it?

"Okay fine, keep the darn card, I'll play with the block!"

Suits me!

All of this occurred while my son blissfully turned in circles, rotating the card and staring at it in glee while periodically pausing to give me a look like, "I ain't playin' your game, lady, look how friggin' awesome this card is!"

After much training at therapy, however, we're finally starting to be able to use the system a little bit. I can ask him certain questions and get answers and he occasionally brings me a card to ask for something. It is AMAZING what he knows and hasn't been able to express so far. He knows who Mommy and Daddy and sister and doggy and kitty are. He knows block, book, ball, blanket, TV, etc. Completely independent of the PECS stuff, he also has started responding appropriately to commands and requests like, "Come here", "Give to Mommy", "Show to Mommy", "No touch", "Where's your (insert object here)?", "Point to (a character or object in a book)".

It all seems to have come out of nowhere, but it seems obvious now that he's been in there all along and he's bright and funny and delighted to finally be able to communicate a little. He's still not talking, but it helps to know that he's listening and retaining information. Maybe he can eventually explain to us what the appeal of rotating a small card is...though he probably thinks that should be obvious. Silly parents.

Wednesday, August 10, 2011

The Blog Abides

Howdy folks! I know it's been awhile. As I observed before, time is scarce with two children, though the real problem, honestly, is that brainpower is scarce with two kids. I honestly have times when I'm talking to someone and I hear words coming out of my mouth that have nothing to do with what I wanted to discuss. "Honey, can you pick up the kids' meds after work?" can turn into, "Honey, black sandwiches and octopi live after work?" Seriously. The beginning and end of the sentence usually come out right, but the middle turns into a scary mess of gibberish which is also a window into the dark abyss of randomness that is my brain.

Um...see...this wasn't what I came here to write about...darn it black sandwiches and octopi again...

So, it's been pointed out to me by more than a few of you lovely people lately that I have a gift for writing. To those lovely delusional people, I would like to offer my collection of rejection letters up for review. The publishing world does not agree with you. Anyway, I've been toying with the idea of re-vamping the blog, getting an actual template, figuring out how to upload pictures, and basically turning it into a real grown-up blog. Maybe, and I hesitate to even type this because I'm pretty sure I can hear the sound of rejection letters being typed (Can they reject blogs? I'm fairly certain they can. In my head, those rejection letter folks are omnipotent and they also sit at desks 10 feet high with giant books and huge black feather quills with which to write those words of doom, "Thank you for your submission..."), I can find a nice little niche and make a few dollars.

To that end, there may be a few changes around here some time soon (soon being a relative term when you have two kids...). Please stick around, folks, I promise there will be tons more Boog anecdotes for you Boog fans, but perhaps I will pull my head out of the depths of the sea of picture exchange cards and dirty diapers that is my life as a mother, look around and write about what I see out there on the dry land of reality as well (how's that for an overwrought metaphor?).

So, thanks for reading, be patient with me, and when things are more together around here, I'll ask some of you lovely delusional people to tell your lovely delusional friends about me and my stream-of-consciousness babbling. You guys rock.