Thursday, August 23, 2012

Flight

We're transitioning here.  I'm going to back to work.  Sweet Girl is going back to (a new) school and because I'm going back to work, Little Man will be going to day care.  It's exciting and terrifying.  There are so many unknowns to this equation that I can't even begin to properly address them with Sweet Girl.  And though I talk to Little Man about his "school," he's two years old and nothing is concrete until it happens.  Repeatedly.  The good news is that they will be going to the school where I will be teaching.  Well, Little Man will be in the building next door.  Close enough.  The uncertain news is that it is a private school and does not have a specific special education program.  This could be ugly.  This could be great.  This could be somewhere in between.  The only certain part of this adventure is that it will be an adventure.

The disadvantage to taking Sweet Girl to a private school with no special education program is that she may not get what she needs to help her grow; cognitively, socially, emotionally.  She may get so far into her world in an effort to mitigate her anxieties, that she loses a year of education.  In the public school where we originally planned for her to attend, there were stop-gaps in place to ensure that didn't happen.  There were teachers there who have training to help them understand how best to teach my girl, and the increasing number of students who are not so neuro-typical.  She would receive services because it's a federal law that she does.  That law does not apply to private schools.  I do not doubt the qualifications of the teachers at this school (might be a little hypocritical considering that I am now one of those teachers).  I do not doubt that they will want to help Sweet Girl.  I do not doubt that they will try.  I do not doubt that my girl is herself perfectly.  I doubt that the world is not ready for her yet.  And I can not change the world between now and September 4th when I will help her dress in her new uniform, pack up Little Man, gird my loins, and start a new chapter for all of us.

I've spent five years knowing this girl. Holding her, rocking her, comforting her, translating for her, worrying over her, delighting in her, crying for and with her, pushing her, loving her: I've spent five years with her and I think I know her better than anyone else.  I have watched her struggle mightily.  What comes so easily to most were mountains to her.  Hugs and touches were eschewed because they were too much.  Words were the cause of so many frustrated cries.  Relationships with loving people were slow because there was too much unknown in interacting with others.  The world is harder for her on a basic level.  She has struggled mightily, but she has progressed so much.  She is happy to say hello and goodbye to strangers.  She loves to be tickled and hugged and kissed.  She is at ease with her family - from her little brother to her great-grandparents.  She's climbed over mountains and started up new ones.  I see her and I see those things.  I see how she is a force of nature.  I see how she has become my definition of courage.  I see all the things she is capable of doing...becoming.  I see her.

But I am not blind to the rest of the world.  I see how she is not typical.  I see how she doesn't fit in.  Recently I've read two things that I doubt I'll ever forget.  One was a lovely and sad post on The Lone Woman Diaries (she's a wonderful-soon to be published-writer and fabulous mother to five boys) talking about a baby blue jay.  Megan talked about worrying over the bird because it was clear that it was not developing normally.  The bird did not live long: it was not compatible with this world in a way.  It was a reminder of what I'm fighting to give Sweet Girl.  The tools to survive in this world.  The other was part of Louis C.K.'s (oldish) interview with Conan O'Brien, discussing how we've all come to take amazing things for granted.  He talks about cell phones but what I really enjoyed was his take on flying.  Maybe because I just sat next to some LOUD complainers on a flight from Reno to Baltimore, or maybe because it reminded me of my girl.  Here's some of what Louis C.K. had to say (find a video and a transcript here):

"Flying is the worst one because people come back from flights and they tell you their story and it's like a horror story...  They're like it was the worst day of my life. First of all we didn't board for 20 minutes and then we get on the plane and they made us sit there on the runway for 40 minutes. We had to sit there. Oh really, what happened next? Did you fly through the air incredibly like a bird? Did you partake in the miracle of human flight, you non-contributing zero? Wow, you're flying! It's amazing! Everybody on every plane should just constantly be going, oh my God, wow you're flying, you're, you're sitting in a chair in the sky... You know, here's the thing. People like they say there's delays on flights (yeah) delays really New York to California in 5 hours. That used to take 30 years to do that and a bunch of you would die on the way there and have a baby. You'd be with a whole different group of people by the time you got there. Now you watch a movie you take a dump and you're home." 

It's funny because it's true.  We don't appreciate the amazing things because they have become commonplace to many of us.  And that's how I feel when I look at my girl.  Sure she just climbed the faux rock wall and went down the slide.  Just like every other kid on the playground.  Except she had to sing constantly to calm herself down to be near the other kids.  But she just climbed a wall and went down a slide and she did it with 15 other kids milling around her.  Everyone else would point out the singing.  I would point out the success.  Yes, she's five years old and just now started dressing herself.  Most of the world sees her advanced age for that task.  I see a girl one step closer to independence.  Today, she pointed out that we had passed the same car twice on the road today.  She said "Mommy, we see that car blue two times!"  The world wouldn't give her credit for the thought because it's not presented in an appropriate structure.  I gave her a high five because she noticed the car, made the connection, and told me about it.  So that's what has me worried.  I'm worried that I'm putting her in a place that won't see how hard she has to try to open her wings, or how many steps it has taken her to get to a place where she is comfortable outside of our nest.  I'm worried that she will be critiqued for a shaky take-off instead of having everyone marvel at her flight.  I am worried, but I'm also hopeful that we'll work it out.  I'm hopeful that she'll soar beyond my expectations.  I'm also hopeful that Little Man won't hate me for life once he realizes he won't be ruling the roost everyday.  It's terrifying and amazing and exciting, this marvel of flight.

Tuesday, August 14, 2012

Play Doh Ebola in T-Minus Three, Two, One.....

He licked that glass by the way.
I had all these ridiculous thoughts about motherhood.  Outlandish ideas that my children would be well-behaved.  I would wake up everyday and get dressed (often assisted by various singing woodland animals) and veritably float down the hall to wake my peacefully slumbering children.  They would great me with a smile and look of gratitude for having such a wonderful mother.  I would have a motherly glow as I went about our day, preparing meals, playing entertaining games, crafting whimsical items to send to loved ones, and just in general loving one another and continually smiling.  At night, I would cuddle them both on the couch with a book and then I would say "To bed!" and they would quickly and quietly go to bed and await goodnight kisses before they fell asleep immediately.  Oh, of course we would have our moments.  They would argue over a toy or who got to prepare their vegetable tray.  They might get overzealous with the glitter at craft time or they would fall as they clambered to whatever outdoor activity the woodland animals had set up for us to do.  But I would know that those times were limited and could tell they were about to get better because the montage music would be fading out while my kids suddenly start sharing or some such.  I blame Disney for these delusions.

What would actually happen seems more like a Scared Straight preview.  I don't wake up of my own will and volition, I get an overly enthusiastic jump tackle that would make most NFL secondaries jealous.  (Also, no singing woodland animals.  I don't know if Oreo scared them away or what, but I need wardrobe help in the morning and the people I live with aren't cutting it, dammit.)  More often that not, Sweet Girl and Little Man needs some time to find their smiles.  They mostly make demands of the woman with the stringy hair and glowing (rosacea; thank you, hormones) cheeks and don't appreciate that I can't meet those demands before they finish making them. Meals are made on the fly.  Games aren't exactly entertaining so much as necessary.  Games like Clean the Cotton Balls Out of the Toilet or Wash the Yogurt Off the Dog, these games are neither fun nor educational for anyone.  Craft time entails five frantic minutes of keeping things out of mouths, nostrils, ears and off the floor.  And the end result usually resembles something the dog wouldn't even consider eating.  And as far as organized activities are concerned, I have one who would live outside if I would let her and one that would gladly fore go fresh air if that meant he could have more animal crackers.  Bed time is seen more as a suggestion to both Sweet Girl and Little Man, as I've heard them both serenading their stuffed animals at all hours of the night.  This is how our life is, and I know it's going to stay that way for awhile because that montage music isn't going anywhere.

Through it all though, I've maintained one sacred separation of Motherhood and State of Confusion.  I have kept my: I Will Never Drink After My Children/Eat Something My Child Has Licked Guarantee.  I have watched mothers happily pick up one of their children's drinks with visible food particles floating in it and drink away.  I have seen mothers finish one of their children's ice creams, though it was mostly a melted pool of delicious dairy and a spectacular amount of spit.  And every time I witnessed such things, I had to sit on my hands lest they betray my disgust and slap the offending item from the hands of these mothers.  For one thing, if they dropped that cup or ice cream then some of that floating food or spit might get on me. For another thing, it's easier to make friends when you aren't continuously knocking things out of someone's hands.  I understand that some mothers feel that anything that comes from their own child is innocuous, and, after all, they've shared a uterus making a little drool on ice cream seem reasonable.  Sorry.  I can't get behind that.  It's part of my own sensory issues and I'm just fine with that.  If I give Sweet Girl or Little Man a drink from my water bottle or glass, then it becomes Sweet Girl's or Little Man's water bottle or glass.  Then I get myself something else that has not been infested by the slobber armada.

So imagine my horror at the events of our shopping excursion this morning.  I made the mistake of going to Walmart.  Normally this isn't a problem, but it's tax free week here and when combined with back to school frenzy it produces a mass of humanity that appears to be wholly unaware of commerce etiquette.  Today, people forgot how to queue properly.  They forgot that the laws of physics apply to shopping carts and that you can not, in fact,  safely place a mini fridge atop a dozen eggs and two loaves of bread.  They forgot basic social skills (my toes were run over twice) (ok, fine, I ran over my own damn toes one of those times but the other time was a total stranger and she didn't even slow down in her hot pursuit of the tissue twelve-pack to acknowledge the grievous wound) and I found myself waiting in line to check out for 15 minutes despite every cash register station being open.  As a means of diversion I often take lollipops for Sweet Girl and Little Man.  I find it limits their ability to make noise due to their mouths being preoccupied, which often makes a shopping trip better for all of us.  Sweet Girl gets special lollipops, ReVita Pops, which are gfcf, no artificial anything, discs of bio-available B12.  They're great for her - she has a B12 deficiency and can't handle too many Dum Dums in general due to all the artificiality running around in there - but cost almost as much a meal per lollipop.  Originally I gave Little Man the same suckers his sister was getting, but he never finished them and since they are quite literally worth their weight in gold I switched him to Good Earth lollies.  They are also gfcf, organic, all-natural, etc, etc.  But they are more readily available and cheaper so it's ok if he decides he's going to drop it on the floor.  Sweet Girl chews her suckers so she was finished about a minute after I handed it to her.  She gave me back the empty stick (You're welcome, Walmart, she used to leave her sticky remnants anywhere she could reach and now she's learned to look for a trash can of hand it to me.  I have learned to hold on to the wrapper so I don't have to carry that loveliness exposed for the entire shopping trip.) and resumed stacking the apples in our cart.  Little Man was still enjoying his lollipop.  He likes to take his time with it.  You know: really savor his suckers and let the flavors develop on his tongue.  Actually he's just easily distracted so his lollipops last longer.  But he never finishes them.  I'm not sure if he gets bored or if he's scared of sticks but he always hands it back to me with a "You hold this now." I always put it back in the wrapper and throw it away at the next opportunity.  Except today.

Today Little Man handed me that sucker, glistening with little boy spit, and in that frenzied moment when I had my phone and wallet in one hand, was attempting to push our cart forward in line before I got run over, was in the process of putting our groceries on the check out belt, and was telling Sweet Girl to please hand me her stacked apples before they fell over, my brain recognized I was not equipped with enough hands and in order to free up space had my stick my son's half-eaten lollipop in my mouth.  Two seconds later, when my mouth caught up with my brain, I spit it out in disgust.  But I'm sure the damage was done.  I can not even begin to tell you what has been in this kid's mouth.  He has licked bubble wands.  He has licked sand off his hands.  He has tried to eat Play Doh.  He is a walking petri dish for every kind of weird germ a kid can carry.  And those germs were on that lollipop.  And I put that lollipop in my mouth.  If you don't hear from me for awhile, you'll know why.  I might as well wash it down with some dirty water.  It's probably the only cure for Play Doh ebola.

Tuesday, August 7, 2012

That Was Unexpected

If only it were as organized
as this looks.  Hint:  it's
not.


Let me first say that we're enjoying our new location.  Sean moved this direction in April and the rest of us followed in June.  The moving process was not necessarily a party a minute, but I can't ever think of a time when it would be. Thanks to Nana and Aunt Carrie no one was injured or left behind in our relocation.  And I was lucky to get the first group of movers who actually listened when I begged to get our stuff in a reasonable time frame.  I am forever in their debt, cause one more night of sleeping on the floor was going to add to the population of Crazy Town.  Regardless, Sean is happy to be back in the eastern time zone and I'm happy to have another set of ears to absorb the noise pollution that surrounds us like Pigpen's dirt cloud.  Oreo is still going through the process of intimidating (in his mind) all the people, dogs, cats, woodland creatures, and weather that dares to be within five miles of the new house.  Sweet Girl is loving the swing set in the backyard and Little Man has made it his personal mission to drink his weight in pool water (ew) every time we go to the neighborhood pool.  So, all in all, we're getting back to the "normal" that passes for our days as a family unit.  I still need to get all of Sweet Girl's therapies underway and get Little Man set up with pediatric GI specialist (love means not crying in front of your kid when he's getting a barium enema and doing radioactive poop laundry as if it were an everyday thing), but that will all get done in due course.

What?! OK, fine.  I had
a drink.  Just one drink.
Of course with a new home you will have differences.  One of the different things about our new location is the difference in commissary clientele.  If you have been or are around military commissaries, then you know that the clientele is often as varied as the deli selections.  You name a classification of humans, I've probably seen them at the commissary.  (Also, name a type of meat/meat by-product and some well-intentioned woman has tried to give a sample of it to my son - who has no manners and no tolerance for any kind of meat that ends in wurst - as we cruise by the deli section.) The commissary is good like that because the armed forces are good like that.  Name a classification of humans and they're probably represented somewhere in the armed forces, and if they aren't then someone in the armed forces is married to someone that is.  It is a melting pot to be sure.  And the commissary reels us all in with their lower food prices and their excellent German and Asian food selection, not to mention the best wurst this side of the Atlantic.  Heretofore, though, every time I've ventured to the commissary I've been surrounded by current or retired (I could write a novel on how not to shop at the commissary when you retire, but all the retirees are too busy pushing their two or three carts down the middle of every.single.aisle to read it.) army people.  It's very much a mission-driven excursion when visiting the commissary.  We've been stationed at Ft. Bragg and Ft. Campbell; two very army-centric army installations.  I know army-centric should be implied when describing army installations, but that's not always the case.  Here in the DC/Baltimore metro areas, there are representations of practically every service running around and grabbing groceries where they can.  Here are Ft. Meade there's a large population of civilians working side-by-side with soldiers of all kinds, and so the commissary is a different kind of experience.  

I had run in to grab some gfcf staples: Glutino pretzels, uncured bacon, and rice milk, with my kids in tow.  Gluten-free Bisquick happened to be on special, so I grabbed a box (it's really quite good, by the way) and we made our way to check out.  Due to the lack of cash on my person, not to mention on my children's persons - they always expect me to pay for their stuff despite our many conversations that being five and two are no excuse, I headed to the self check-out line to avoid tipping a bagger.  Oh, that's another thing about the commissary, they bag your groceries and take them to your car.  Baggers work for tips only and so I often feel inadequate at establishing the proper bag-to-tip ratio, but I have yet to have a bagger stand there with his/her hand out for more or spit in my general direction so they're all either really nice or my guessing hasn't been too far from appropriate.  While waiting our turn to check-out and pay we sang a couple of rounds of "Hail to the Redskins" and directed Little Man's lollipop back toward his mouth as it has a tendency to migrate dangerously close to his hair during check-out performances.  As we were doing this I noticed the older gentleman next to us had Betty Crocker gf chocolate chip cookie mix in his cart at the same time he noticed the gf Bisquick in ours.  He asked if we liked it because his grandson stays with them during the day and loves pancakes, but because of his food sensitivities he couldn't eat regular pancakes.  I told we did like it and that we had food sensitivities in our house too.  Then he started talking about his grandson and all the progress he has made once his diet was changed and basically all the typical proud grandparent talk that one expects to hear.  All of it sounded familiar to me before he said it, but then he confirmed my suspicions when he said, "If it weren't for his autism and this diet, I wouldn't know what gluten is."  I pointed to the beautiful girl in the front of the cart, who happened to be lost in her own music, and said "I understand completely."  

"Mommy, I sure would LOVE
to go swimming!"
Yeah, I get it.
And then then he really started talking: asking questions about what she eats, how I prepare it, if I ever thought about adding either the gluten or casein back in.  I told him about adding pureed vegetables to muffins and pancakes and about the vegan "butter" we use, he told me how he goes half and half coconut/vegetable oil blend because it still has the health benefits but his grandson can't detect a difference in taste or texture.  Then we paid for our stuff and left.  It was nice to have this conversation with someone who understood.  A complete stranger who didn't judge; didn't think I was trying to "fix" my daughter, didn't think I was making up digestive issues, didn't think I was reading too much into behaviors, didn't think I was desperate to reshape my daughter or desperately seeking a cure, didn't think I was a little crazy for trying something that wasn't directly out of the pediatrician's playbook.  It was nice to talk with someone else who got it.  In the autism community there are a great deal of people who don't really want to get along with one another.  They'd rather accuse other people of being lazy or trying too hard than to get to know one another and accept that there can be more than one "right" way.  There is no one autism and therefore there is no one way to go about mediating the challenges that come along with autism.  The gfcf diet is one of the ways that Sweet Girl has been helped.  That does not mean that everyone should try the diet, it just means that it works for us as a family, and this complete stranger accepted that within seconds of talking with me.  And he was at the commissary of all places.  That was totally unexpected.  

And then Sweet Girl has been doing some unexpected things at home as well.  For the past week she's been dressing herself.  Like, walk-into-my-bedroom-already-dressed-for-the-day dress herself.  Granted, she spent a morning with her (mismatched) pants on inside out and backwards, but she did it herself and I'm pretty proud of her for that.  She still can't do socks.  I don't know what it is about the cotton Tubes of Death that she can't handle, but it usually ends in tears with me putting her socks on so she can put on her "sneaker shoes."  We'll get there.  I'll be sure to hit that hard with the new OT when we get one (miss you, Miss Carleigh!), but for now I'm reveling in the awesomeness that is my daughter's fashion sense.  In case you're wondering, it's all purple all the time and two necklaces every day.  Sweet Girl is also brushing her teeth at the sink now.  To this point we'd been using the training stuff because she's not a good spitter and though fluoride is excellent for your teeth, it's not good for your brain (I'm not making that up, it's a neurotoxin.  Go ahead.  Google it.  It's why they have training toothpaste.).  But thanks to something she saw on TV, she now stands at the sink, wets her toothbrush, puts her toothpaste on, scrubs, and spits.....mostly on her chin.  But the point is, she's not swallowing the toothpaste and she's sloooooooooowly but surely getting the hang of it.  I definitely wasn't expecting her to agree to attempt these things let alone initiate it on her own.

Not my girl.  But it's a good
album and I hope Sweet Girl
can rock her bee costume with
equal unique enthusiasm.
But my favorite so far is her unexpected enthusiasm for Halloween.  Costumes and make-believe don't necessarily mix well with sensory issues and literal-mindedness.  But last year Sweet Girl seemed to enjoy dressing as a ladybug and doing the trick-or-treat thing at school.  Of course that culminated in Skittles and cupcakes, so what's not to like.  Then yesterday the mail provided us an opening to discuss Halloween.  A costume magazine fell out on the table when I brought the mail in and Sweet Girl picked it up for me.  She looked through it and then I asked her (really just to get the ball rolling, I mean I don't normally do anything Halloween related until October 30) what she'd like to be for Halloween.  She thought for about 3 seconds and said "I will be a bee!"  Then before I could question any further she started assigning costumes for every member of our family.  "Brother will be a dog.  Oreo will be a frog." Um, OK.  I'm sure the dog wants to be a frog as much as I want to wrestle the dog to the floor to get him on his lily pad, but we'll deal with that later.  Then Sean walked through the door and all of a sudden "Daddy will be a camel! And Mommy will be a monkey! Mommy's gray car will be a ladybug!" Great.  Now I have to outfit a Honda Pilot and quite honestly, I'm the closest thing to a slow plodding creature with two humps around here.  But, again, that's not the point and still not my favorite part.  My favorite part was at the pool twenty minutes later.  Sweet Girl and I were taking a quick "swim" while Daddy was on "Don't drink that!" duty with Little Man, and she asked for a story!  She can recite just about every one of her books, but she doesn't ask for stories.  Stories are made-up and aren't visual, so they're not preferred activities, therefore I was thrilled to oblige her request.  Then I asked her what she wanted to hear a story about and she said "My bee costume." Say what??! OK.  So I made something up about Princess Bee who hopped from flower to flower collecting honey and being friends with Winnie the Pooh.  Sweet Girl giggled and giggled, and then asked for one about Brother Dog.  Say what!? OK! We went through the whole family and she loved it!  Not scripted, totally spontaneous, no visuals, no sensory input, and she loved it!  That's some pretty serious progress and seriously unexpected.  So now I have a little over two months to fashion these costumes and teach my dog to hop.  You might see me Halloween night with a happy and cooperative dog dressed in green, but I wouldn't expect it if I were you.