Sunday, September 27, 2009

Happy Birthday, Baby

In just a few hours, my baby will be four years old.  I don't know how he got so big - it's not as if he eats anything.  I'm very proud of him, and of all the progress he has made this year.

Ryan's diagnosis came just after his third birthday; we started the evaluation process the month before he turned three.  We had two parties for his third birthday - a small family gathering at our apartment and a raucous kiddie party at the ball pit.  Neither party was without incident.  He did ok at the kid party; he had some trouble transitioning from play time to lunch time, and he dragged me through all those damn tunnels, and he had a small fit about the presence of those chocolate cookie crunchy things in the ice cream cake, but overall he had a decent time.  The family party was the bigger disaster: Ryan was overwhelmed by having his four grandparents and aunt and uncle in the house at the same time, so he spent the afternoon hiding in his room, shrieking. At the time, I knew nothing about PDD or sensory integration disorder.  I thought Ryan was just being difficult.  Not knowing any better way to deal with my child's peculiarities, I pushed him to act like I thought a kid should act at his birthday party: playing with Grandma, chasing his friends around, smearing icing all over his face.  Then I got mad that my efforts only made things worse.

This year, Ryan's birthday party was fantastic.  Again, we held the kiddie party at the ball pit - it's his favorite place in the world, so I never even considered having it elsewhere.  Ryan ran through all the tunnels and ladders and slides independently, once or twice even interacting with his friends.  (OK, I went into the dodgeball pit once, because he looked at me angelically and said "Come on in, Mommy!"  I couldn't resist him.)  His transitions were perfect, he kept his pants dry, he showered Grandma and Grandpa with hugs and kisses.  My friends all commented on how well he did.  And he and the other kids had a terrific time.



This year, Ryan's birthday coincides with Yom Kippur, so it seems appropriate for me to atone for the sinful way I have tried to push him to be someone he is not.  A year ago, I would get frustrated with him for being (in my eyes) withdrawn, stubborn, odd.  I would feel embarrassed by his behavior at the playground.  Over the last year, I have come much closer to truly accepting Ryan the way he is.  I still try to give him tools to help him live in my world, but I also work on developing the skills I need to interact with him in his world: compassion, empathy, patience.  I'm learning to see the world as he sees it.  I'm learning not to dismiss things that make little sense to me but are obviously important to him.  I have much further to go, but I'm trying my best, and I hope God will give me another year to work on this.

The difference from last year's party to this year's was night and day.  I'd like to think the therapy has played a major role.  I'd also like to think my change in perspective has affected things.  My expectations have shifted, and I'm learning how to prepare my son for our adventures.  This has been the hardest year of my life, but I could not be more proud of Ryan.  Happy birthday, Baby!

Wednesday, September 23, 2009

Oh boy, sleep! That's where I'm a viking!

Ryan is adjusting well to his new school, and I am unemployed.  I had a freelance gig during his first week of school, but nothing this week, and nothing on the horizon.

I could be more active about hustling to find another job, but I've been so busy with errands and whatnot that I just haven't gotten around to that.  Stu says I should take the opportunity to relax a little, but I haven't made time for that yet.  Maybe next week.

Really, I should carve out some time for unapologetic napping, even though I feel like I should be engaged in more productive endeavors.  Ryan has stopped sleeping, and therefore Stu and I have cut back as well.  He used to be such a sound sleeper - he would pass out at 7 or 8pm and we wouldn't hear from him til like 5:30am - but lately he starts crying or screaming every half hour or so, starting around midnight and going past 3am.  (He may make noise past then, but I think my brain turns off my ears after a while.)  If I wanted to be getting up every half hour, I  would have had another kid.

I don't know why he isn't sleeping.  He's tired, and he knows he's tired.  Miss Maria said he told her he was tired several times at school (omigod, he identified a feeling and expressed it to someone other than me!  Yay!)  The first thing he said when he got off the bus this afternoon was "Tired."  I assured him he could take a nap.  "Sleep!" he begged.  I sat him on his bed, took off his shoes, tucked him in, and as soon as his head touched the pillow, he declared "Car."  I asked if he meant he wanted to sleep in the car.  "Sleep in the car," he echoed.  I'd like to think that when he echoes me he's agreeing, but I'm not always sure.

I strapped him into his booster seat and pulled out of the garage.  "Playground!" he requested.  Ah.  Since I had been under the assumption he was going to go to sleep in the car, I hadn't packed a Mommy Bag.  I stopped to pick up a bottle of water and drove the very long route to a park.  He looked perfectly awake when we arrived.  He galloped up the hill and into the playground.

It soon became obvious he was way too tired for this adventure.  I dragged him back to the car, despite his protests that he wanted to climb more.  I headed for the parkway and drove for a long time, ignoring his requests to watch tv or drink juice.

Twenty five minutes later, he was asleep.

Ten minutes later, I pulled into my garage and transfered him to the umbrella stroller, whereupon he promptly woke up, demanded tv and juice, and refused to go back to sleep.  He remained cranky and overly emotional until bedtime.

Maybe tomorrow I'll use some of my unemployed hours to catch up on some lost hours of sleep.  Lord knows how long this phase will last.

Thursday, September 17, 2009

Dreams

Ryan started his new school a week ago, and since then, he has woken up in the middle of the night - almost every night, sometimes 3 times a night - screaming from a dream.  Miss Maria assures us he seems very happy at school, and the school social worker suggested he's just working through the transition to a new school, new therapists, new kids, new routine.

An aside: it seems like a terrific school.  The teacher and therapists seem very nice, they actually communicate with us every day, they have a woman who comes in to help the kids build various skills through tennis lessons (when I told Stu about this, he said "So you've got a bunch of autistic preschoolers swinging tennis rackets? This seems like a bad idea.)  And yesterday they sent home a permission slip to take the kids apple picking; well, it's less a permission slip than a note saying there will be no bus service for the trip, so if you want your kid to go you have to drive him, and pay for your own admission as well.  Still, when I told Ryan about the trip, he seemed pleased.


Anyway, the first night he woke up screaming "Fruit bar!  Fruit bar!" as if he were hungry, but in that panicked way he has when he feels like he's never going to eat again.

Another night, he ran into the hall at 2:30am, rapidly shrieking "School!  School!  School!  School!"  When I tried to reassure him that it was the middle of the night on a weekend and he didn't have to go to school, his wailing seemed to get worse.  Then he started shouting "Shoes!  Shoes!  Shoes!"  When we got him settled down, he whispered, "Spiders."  "Are there spiders in the school?" I asked him.  "Spiders in da school" he echoed, eerily.  I told him he just had a scary dream and to go back to sleep.

Stu suggested that maybe these dreams weren't scary - maybe this was his begging voice; maybe he woke from a wonderful dream and was instantly having a tantrum, demanding to go to school.  I dismissed this as bizarre and unlikely.

Well, turns out Stu may have been on to something (yes honey, I'm saying you were right; you may now declare victory).

Last night, 3am, I hear screaming in the hall.  Ryan is shrieking "Socks!  Socks!  Socks!"  I tried to calm him down by putting socks on him.  When his socks were on, he started demanding "Shoes!  Shoes!  Shoes" tantrum-style - but still half in bed, obviously not really awake.  I tried to explain that he didn't need shoes in bed at 3am.  I asked where he wanted to go.

"Apples!  Apples on da trees!  Pick apples on da trees!" he wailed.

He had woken us up at 3am to have a sleep-tantrum that he wanted to go on the school apple picking trip.

We tried to keep our laughter quiet enough so he could go back to sleep.

Monday, September 14, 2009

An Ode to the Awesome Power of Wheat

When we learned that Ryan is allergic to wheat, I could only imagine how difficult it would be.  I know there supermarkets sell far more wheat-free options today than ever before, but it's still a pain in the ass.  There's a good reason people bake primarily with wheat and opt for rice/tapioca bread if they don't have to.  Wheat provides a taste and texture that's hard to match, and impossible to beat.  Have you ever tried wheat-free bread?  The brands we've tried range from spongy-but-tolerable-if-toasted at best to who-the-hell-labeled-this-as-food nasty at worst.

Ryan's wheat allergy doesn't make him break out in a rash or stop breathing, thank God.  Instead, it affects his brain chemistry.  His body digests wheat gluten improperly and builds up a high level of a usually-short-lived by-product of wheat digestion that chemically resembles morphine.  So bread makes him stoned.

I didn't realize how important wheat was until I tried to eliminate it from Ryan's diet.  Wheat is everywhere, not just in obvious places like bread and cereal and crackers and pretzels and pasta and everything else that's worth eating.  There's wheat in Twizzlers.  There can be wheat in soy sauce, salad dressing, canned fruit, hot dogs, soup, fried foods, MSG, ice cream with cookie dough or whatnot mixed in, and anything that contains "modified food starch." 

We started eliminating wheat shortly after re-introducing milk and eggs (the allergist discovered the wheat allergy in the same battery of tests that confirmed he was no longer allergic to dairy).  Flying in the face of everything I had read about the benefits of a GFCF* diet for reducing autistic behaviors, Ryan improved when we re-introduced milk.  Within the first 36 hours of having milk and cheese, Ryan started doing amazing things:  he willingly played barefoot in the back yard, he wore sandals, his language blossomed into longer sentences, he became more willing to try new foods, he started treating his father better, and he became more patient and generally more cooperative.  His play improved, becoming more independent and imaginative - overnight his animals developed different voices.



Then a week later, we eliminated wheat, and everything went to hell.  He went through two weeks of withdrawal - imagine a three-year-old having a nic fit.  By the fourth day without wheat, I was ready to kill him - moody, whiny, emotional, obnoxious, tantrum-prone, refusing to use his hands, lethargic, speaking only in echolalia.  I was tempted to give him a bagel just to shut him up.  After two weeks, though, I started to see the positive side of wheat elimination.  Language seemed to be improving, he was a little better at paying attention to Chrissy, and he started to get the hang of potty training. 

So up until a couple of weeks ago, I wasn't even really sure the sacrifice was worthwhile. I couldn't tell if his recent improvements could be attributed to wheat elimination or if they followed the arc that started when we re-introduced milk - an arc which had a horrible two-week-long withdrawal dip.

Then Ryan ate wheat.

I don't know where he got it - maybe I didn't clean the cutting board well enough, maybe I didn't read a label properly, maybe the corn tortillas at the restaurant were cooked on the same surface they use for wheat tortillas - but the last week of August/first week of September hit us with our second dose of wheat withdrawal hell.  I didn't figure out what was going on until the end of the first week - we saw the sudden regression, but thought it might have been due to the weeks without school and therapy.

Now that he's coming back out of his morphine withdrawal, it's obvious that wheat elimination really is important for him.  Still just as much a pain in the ass, but a sacrifice I can appreciate is doing good things for his developing brain. 

*GFCF = gluten free / casein free.  Gluten is a protein found in wheat and many other grains.  Casein is a protein found in milk. 

Monday, September 7, 2009

Counting down to Thursday

The weeks between the end of the extended school year and the start of the new school year have dragged on tediously, but this last week has been the worst.  I think about a week ago, Ryan accidentally ingested some wheat, and the regression and tantrums of the last few days can be chalked up to wheat withdrawal.  Maybe it happened at the restaurant, maybe I wasn't careful enough cleaning my kitchen counter, but the heartbreak is that he didn't even get to experience the pleasure of a bagel or good bread or pizza - he got poisoned while ostensibly eating this wheat-free crap.

Even knowing there's a reason for the behavior, and therefore an end in sight, I'm still going nuts.  There are only so many hours per day I can be a good mother.  The frequent meltdowns chip away at me until I feel like I'm about to snap, and then I look at the clock and realize it's not even lunch time yet.  And our weeks of potty training success are flying out the window this week - he peed on my favorite chair twice this morning.

I plan outings for us, but I get bored with the routine:  arrive by opening time, monitor Ryan to see when he's had enough, allow for down-time in the car (or maybe he'll even nap, but that's a long shot), do something physical in the afternoon, be home by dinner time (because you can't just pick up wheat-free food he'll eat on any corner).  And I only have so many good ideas for rainy days, and goodness knows there have been enough of those lately.

This is the last week of summer vacation, and I'm both relieved and saddened.  He will be in school every day til 2pm, and the bus will drop him off around 3pm; I worry that that's too long a day for him.  I worry that an hour each way is far too much time on the bus, so I'll probably end up driving him every morning.  I worry how he'll act when he gets home - I imagine a solid hour of talking to himself and passing things in front of his eyes to try to re-enter his comfort zone.  And I suppose I'll miss him a little.  But I so won't miss these constant tantrums.

I'm putting out feelers looking for jobs I can do during the school day, but I'm skeptical about finding theater-related work that fits our schedule.  I worry that the gap in my resume will be off-putting to employers, even though I know I'm more organized, more confident, and more empathetic than I was four years ago.

Mostly, though, I'm having vivid fantasies of what I'm going to do on Thursday at 8:05 after Ryan gets on the bus.  I can go to the chiropractor, get my hair cut for the first time in months, put in some time at the gym, clean my house, take a walk.  Breathe.

Breathe.

Friday, September 4, 2009

Aaaaaaaaaaaaagh!

Yesterday was one tantrum after another. 

When Ryan wants something (a snack, to watch tv, whatever) it is not unusual for his first approach to be panicked shrieking, repeating the name of whatever he wants over and over rapidly.  Then I try to calm him and remind him that he can use words and calmly ask for the snack or the tv show or whatever.  I model the words for him, then make him repeat them calmly before he gets what he wants:

"Fruit bar! Fruit bar! Fruit bar! Fruit bar! Fruit bar!" he shrieks.

"Calm.  Calm."  A few moments of hyperventilating and wailing.  "Say, 'Mommy, can I have a fruit bar, please?'"

"Fruit bar pwease?"

"Can you say it calmly?"

"Calmwy?"

"Can I..."

"...have fruit bar, pwease?"

"Caaaa..."

"...I have fruitbarpwease."

Good enough, I usually don't feel like belaboring this any further.

Sometimes in addition to the panicked screaming and crying and endless repetition, he also throws himself on the floor and refuses to be calmed for many minutes on end; I will call this The Bloody Fit.  Sometimes I can distract him from The Bloody Fit after several minutes, often by taking him to a completely different environment, and sometimes I can calm him by squeezing him really hard and holding him down for a while, but sometimes there's nothing I can do.

Yesterday was a special day: almost every request he made of me was in the form of a Bloody Fit.  Fruit bar!  Banana!  Clean it!  I tried to buy myself some peace by turning on Sesame Street, but then he just wanted to skip every other scene.  DifferentDifferentDifferent! Number of the day!  Zoe!

I feel I must insert here that Ryan never gets what he wants if he's crying and screaming.  I do not reward or otherwise encourage these tantrums.  But pointing out to him that he has never gotten what he wanted as a result of carrying on does not change his behavior.

Here's one brief example of what a great time yesterday was.  In the afternoon we went to a nearby park of Ryan's choosing.  We ran around a little, I pushed him on the swings, he had a snack, everything seemed to be going well.  Then he decided he wanted to ride in the baby swings.  I told him, as I always do, that he's too big for them; I have too hard a time hoisting a 40 lb child in size 12 shoes into those damn basket swings.  Then he launched into a Bloody Fit.

"Sit in da swing!  Sit in da swing!"  he cried.  I repeated that he's too big for them.  I pointed out the big-boy swings.  He grabbed at the baby swing and screamed.  I walked away; this did not impress him.  He wailed and begged at each of the park's three baby swings; I said no and walked away.  Then he noticed an older boy sitting on one of the big-boy swings.  Instead of going over to one of the two empty swings, Ryan proceeded to cry and wail in the other boy's face in an effort to drive him from his swing.  When I noticed what was going on, I dragged Ryan away.

All efforts to engage him in something else failed, so I announced that we were leaving the park.  He followed me, running, the whole time shrieking "Sit in da black swing!  Sit in da black swing!!"  We walk three blocks, and the tears and screaming do not stop.  As I'm about to turn a corner to head toward home, I notice that the words Ryan is shrieking have changed.  He is now crying "Go to the rocks park," which is what we call the park at the local elementary school.

I get on my knees to try (again) to calm him.  There's a freaking river of snot pouring down this child's face.  I look down at my necklace and remind myself that he is in agony, and he's not just trying to be a pain in the ass.  I hold him as tightly as I can and whisper "Calm, calm."  He actually catches his breath - progress.

"Do you want to go to the rocks park, or do you want to go home?" I ask.

"Rocks park."

"Then you have to be calm.  If you're crying and screaming, we can't go fun places."

He is quiet.  We cross the street in the direction of the elementary school.  Immediately, he starts wailing, "Rocks park!  Rocks park!"

"Yes, that's where we're heading, right now."

"Rocks park sit in da swing!  Rocks park home!  Home sit in da swing!"

I have no idea what's going on.  I drag him home.  I park him in front of the tv while I make the dinner he won't eat.  I'm trying to remain calm.  I remind myself I'm the adult.  That idea terrifies me.  I concentrate on slicing carrots.

As soon as his show is over, he starts another Bloody Fit.

So I did the only thing I could thing to do:  I left.  I walked out of the apartment and closed the door.  I sat in the hall and listened to him screaming.  When there was a break in the crying, I opened the door.  He immediately started crying again; I left again.  It was like sleep-training a baby.  This Ferber game went on for at least 20 minutes.

And then he had exhausted himself and was calm.

I wiped his face and we went out to play in the back yard.

And it was a good 40 minutes until the next tantrum.