Eating and Sleeping

I wrote the other day about our horrendous sleep issues.

Moe also hasn't been eating well. We're not sure if he's not sleeping well because he's hungry, or if he's too tired to eat. Either way, it is a vicious cycle, and although hunger doesn't explain every night, it may be largely to blame for this bout of insomnia. On Thursday, he woke up at 4:30 in the morning and sat down at the kitchen table for a snack. We gave him one and he went back to bed.

I've started a sleep and food log to try to narrow things down. In setting this up, I also realized that I had started Moe on a new vitamin. He's taken a multi-vitamin for a while, but I ran out of the fancy orange ones I usually get him and bought the gummy bears at Costco. It's possible this new vitamin upset his stomach. I hope not because I have a Cotco-sized vat of them, but for now we're taking them out of the equation.

We've also started doing everything we can to make sure Moe goes to bed on a full stomach. This doesn't necessarily mean he has the healthiest diet right. The other day, the kids got to split an Oreo cookie milkshake. At first, Moe would not even touch it. But after seeing Jelly bathing in hers, he got up the courage to put his fingers in it, then finally taste it. Once that happened, he realized the error of his ways and devoured the rest. He even used his spoon, something we've had trouble getting him to do recently.

And today, after dinner, they got Hostess cupcakes.

 It's been years since I've eaten one, but my mom used to buy me and my brother these cupcakes sometimes. Moe is a cake eating machine, so he saw it and immediately dove in. He then tried to grab Jelly's from her plate.

Meanwhile, she was meticulously picking the hard icing and while swirl off the top, eating that part first, just like I used to do.

Notice the dog in the background
 waiting for dropped crumbs.

Path of Destruction

Moe is a sensory seeker, and his particular brand of sensory seeking is highly tactile. Yes, he'll stare at lights or make a certain sound over and over, but give him some nice fuzzy fabric to run his fingers over, and he's a happy kid.

Everywhere we go, he's touching something. He runs his hands along the cars in a parking lot or splashes in puddles. He loves shaving cream and pudding. Hand him a cereal bar and he's as likely to squish it between his fingers as he is to eat it. This does not, by the way, translate to Moe eating foods that may have sticky, goopy or otherwise messy textures, but that is a conundrum for another post.

Because of all this touching, Moe is quite a destructive little guy. We call him our Tasmanian Devil. A Whirling Dervish. He's a Toddler Tornado. Hurricane Moe. The San Jose Tsunami (too soon?).

He doesn't mean to be. He's not the kid that sees a tower of blocks and just has to knock it down. He just walks around the house, knocking books off shelves or dumping over buckets of toys or puzzles. He'll pick up a piece of a toy from one room and bring it to another, then just drop it there. I'm forever matching pieces to their toys, often content when they end up in the correct room, let alone actually back with the toys they belong to.

I've gotten very good at completing all of Moe's puzzles at once. Twelve puzzles are often scattered around the floor, their pieces intermingled. Some hide under the dog bed or bookshelves. As I clean them up each night I imagine I'm in come kind of supermom competition. I'm a favorite in the "advanced clean up: non liquid items" round. Winners are based on time, accuracy and completeness. Obviously, I win.

I'm pretty sure this is why I went to Yale.

Up Sleep Creek Without A Paddle

Some pretty serious sleep issues have returned to our house. It's been going on for two, maybe three, weeks now. I can't remember, probably because I'm so f-ing tired.

I guess it started when we changed the clocks. I didn't think it would be that big an issue, since we give Moe melatonin to fall asleep. But for some reason, both kids started waking up really early. Then Jelly started teething and Moe got a cold and it went downhill from there.

The last week or so, Moe has been waking up several times in the night crying. Sometimes we would find him tangled amid the blankets and he just needed to be tucked back in. We'd do a quick fix and he'd be quiet for a while. Lather, rinse, repeat repeat repeat.

Other times he was comfortably under the covers, head on pillow, going from crying to screaming and back again. We've tried soothing, not soothing, offering water or milk, taking him to our bed or the couch, turning on lights, keeping them off. We're dumbfounded. And did I mention exhausted?

But I've been sending Moe to school anyway, because he doesn't seem sick anymore, and if he missed a day everytime he didn't sleep, he'd never go. And he's had a decent week; on Wednesday his teachers said he even used some words to request things. (He said "frog!" for the 5 Green and Speckled Frogs song!) On Thursday, he was in a good mood in the morning, but when I went to pick him up, in the pouring rain, they had to carry him out to me. He was screaming, covered in tears. They said he had been like that for about half the day.

So I finally installed the video monitor I've had sitting on my desk for a couple months. And by "install," I really mean "plug in." Not sure why I didn't do this sooner. And we watched. Moe fell asleep as usual, and though he stirred a little around 10:00, he didn't wake. I set the monitor on my nightstand. I liked having that visual of Moe as I fell asleep, though I'm so glad I didn't have one when he was a baby. As Jeff pointed out I would have been asking him every 5 minutes if he thought he could see the baby breathing.

Around 12:30, Moe woke up. He didn't cry, but his eyes were open. It looked like he was starting right at me, though I think he may actually have been looking at, and possibly calmed by, the little power light on the camera. Moe was quiet, barely moving except to shift from one side to the other. But he was awake until around 5:00 am. I decided to let him take the day off from school so he could sleep in. He didn't get up until after 9:30.

So now I'm freaking out even more. All those nights when he was quiet and I thought he was sleeping through the night? Maybe he wasn't. The problem might be much worse than I thought.

And it gets worse. I tried to make an appointment with our developmental pediatrician, Dr. S, and found out she is not taking any new appointments for SEVERAL MONTHS. Our regular pediatrician told us Dr. S is going on maternity leave. The last time we saw her she was just back from having a baby. Wasn't that one good enough for her? Jeez.

She's supposed to be around for 2-3 more weeks so we're hoping we can get an appointment with some secret code word or something. That actually happened with her once before.

So here we are, exhausted, grumpy and without a plan. Autism parents, I need you. All suggestions welcome.
Special thanks to @jentroester who has been so supportive on Twitter already.

Doughnuts

I knew the date was coming up, the worst kind of anniversary. I wanted to write something worthy of my only brother, gone 9 years yesterday. I was having trouble, lacking inspiration. So imagine my utter shock when I checked this week's writing prompt and found this:

His favorite. The food my family eats to celebrate his birthday. The very thing we leave at his grave when we visit on special occasions.

Bill loved all kinds of doughnuts, old fashioned, cake, or raised, plain or adorned. I love a nice jelly or lemon-filled, but we agreed that the true test of a doughnut maker is the basic glazed.

We grew up in the San Fernando Valley, where Winchell's reigned supreme, and theirs were the standard against which all others were compared. Bill was also a fan of Krispy Kreme, in part because of the free half-dozen you got whenever the Dodger's pitched a shutout. I don't know what my brother thought of Dunkin' Donuts, but they remind me of the walk from my apartment to school in New Haven, cold days warmed by coffee with plenty of cream and sugar.

Near my house, we have Stan's. I was late discovering Stan's, but am glad I did. Stan has the most gloriously dense glazed doughnuts. They are legend around here, with lines out the door on weekend mornings. I'm sorry Bill never got to try one.

A few years ago, Psycho Donuts opened with some controversy near our little downtown. The decor is retro-cult slasher movie, complete with padded room and cashiers in white nurses uniforms who hand you a square of bubble wrap when you walk in. Protesters claimed it made light of mental illness, with menu items like "Cereal Killer" (topped with Crunchberries) and "Glazed and Confused." Granted, they don't have an "Autism Fritter" or a "Stimming Cruller" but I'm not that easily offended.

I don't usually eat a doughnut on this day, preferring to celebrate Bill's birthday in November. But when I found out that Psycho doughnuts has a "cocktail" doughnut, I decided to make an exception. I bought a strawberry margarita doughnut, filled with tequila cream, topped with fresh strawberry icing, freeze-dried strawberries, and coarse margarita salt.

I may not have found the perfect words with which to toast my brother, but I'm pretty sure I've found the perfect doughnut. Cheers.

Would You?

If you could ask a psychic to peer into a crystal ball and see the future, would you? Would you want to know that your child wouldn't talk until he was 6, that you'd be changing diapers at 9, or looking for residential facilities at 20? Would knowing make you hope a little less? What if you learned your son had friends, graduated high school, went to college, made his way in the world? Would you work a little less hard now, knowing things worked out in the end?

If you could be inside your child's mind for an hour or a day, would you? Would you want to know that he understands only a bit of what you say? Would you want to know the frustration he feels when he can't communicate his most basic needs? Would you want to know the joy of simple things, like splashing in the water or hugging a toy? Would you be depressed by the knowledge that you can't make things better, or would it help you understand, have more patience, find new ways to get through?

If you could be inside of your child's body for a week, would you? Would you want to know what it is like to be clumsy and unsteady? Would you want to understand the need to touch everything, to lick, to crash or spin? Would you want to feel the relief of a tight squeeze? Would the lows help you manage his tantrums, or would the highs scare you with the feeling that he'll never be able to focus?

I have often wanted to see the world from Moe's perspective. I've wished to take a quick peek into the future. But if given the chance, would I do it?

Written for Mama Kat's Writer's Workshop. I was liberal with today's prompt: Ask the psychic! You have an opportunity to get any question answered in regards to your future. What will you ask?

Wordless Wednesday: Jelly's First Ponytail

Work it, girl!

A Natural in the Water

I've written many times about how Moe loves the water and seeks out that sensory input. Our local YMCA has an indoor pool, but we haven't taken Moe much. We did a baby swim class a couple of summers ago, but the pool is crowded and loud with swim camps and lessons. Moe wasn't very happy. Once his class ended, we never went back to the pool, and other than a couple of times in my parents' pool, we haven't done much swimming with Moe.

Our Y membership includes some of the other local clubs and I've started going to Zumba at a location I hadn't been to before. After my first class there, I wandered around the club and found the pool. It's fantastic! Half of the pool is only about two feet deep, and there is a waterslide and a big mushroom that sprays water. We decided to take the kids this weekend.

And I'm so glad we did. Moe loved being in the water, and I couldn't get enough of his giggles and smiles. These were not the crazy, manic giggles we get when Moe is overstimulated, just the sound of a boy having a lot of fun.

Moe also seemed to have a natural feel for the water. I've seen him put his face in the water in the bathtub but I didn't know how that would translate to a pool. We showed him how to blow bubbles, and he did. He liked being able to stand in the pool, and he ducked his head under the water a few times, holding his breath. A couple of times he stayed under for around 2 seconds (we didn't let him stay under any longer than that), and even though we don't think it was on purpose, he held his breath, didn't panic, and came up smiling. As we brought him around the pool, he would splash and kick and paddle, and although he never actually swam unassisted, we were really impressed with how he handled himself in the water. Unfortunately, we left before they turned on the mushroom.

Moe has no fear and water safety is high on my list of priorities for both kids. After his escape from our backyard, I was reminded how important this is. It is also high on my priority list to find ways we can have fun as a family. I think we're going to be taking the kids to the pool a lot. Can't wait to see how he does when they turn on the mushroom!

Thank You!

Two days ago, I asked for support. During a time of financial crisis, during a time when so many people around the world need help, I asked you to give. I asked you to sponsor me as I participate for the first time in the Walk Now for Autism Speaks.

In just two days, you donated $1,440.
$20, $50, $100 (or more!) at a time. All so generous. Right now, I am one of the top fundraisers for the Bay Area walk.

I did not ask to be the parent of a child with autism.When Moe was diagnosed, life took a detour and I'm not sure we'll ever get back. But along the way, I found you. 

I asked, and you responded. And for that I thank you.

I've met my fund raising goal, so as promised, I won't be bugging you for any more money. The pledge drive has ended. But see that thermometer over on the right? I'd love to see that number continue to grow. If you want to sponsor me with a donation to Autism Speaks, just click that thermometer over there.

Wordless Wednesday: Awareness

Click the ribbon to sponsor Moe and his family at the Walk Now for Autism Speaks

We're Walking

When Moe started at his first center-based program, our first exposure to early intervention, I was really anxious. I imagined Moe being placed into a room full of kids flapping and screaming, rocking in corners. It's horrible, I know, but I was new to autism, and I was scared.

Slowly, by choice and by necessity, I've become more involved in the autism community. And on May 21, I'm going to take another step in that direction. A lot of steps, actually. The Peanut clan is going to be walking in the Bay Area Walk Now for Autism Speaks.We're walking on a team with our Music Therapist, my BFF and whoever else wants to join us.

I don't need to tell you why autism research is important. If you read this blog, you are probably the parent of a child with autism. Or maybe you are a member of my family, and are keeping up on Moe's progress. Whatever your reason for reading this, just by being here, you are affected by autism.

So today, I'm going to ask for your support. And like an NPR pledge drive, I'm going to keep asking until you get so tired of hearing me you finally give in, or until we reach our goal.

So please, if you can, make a pledge to support Moe on behalf of all your beautiful kids. Any amount will help. Thank you.

CLICK HERE TO DONATE NOW!

No More Wishes: Redux

A few months ago, I wrote about the song "Airplanes" and why I wasn't making any more wishes. I wrote about hoping instead of wishing, with hope being more grounded, requiring "hard work, long days and exhausting nights." And I still believe that.

But sometimes, hope is hard to come by. Day to day, surrounded by other kids with Moe's delays, it is easy to remain optimistic, to lose sight of how far he has to go. But it doesn't take long before reality slaps me in the face.

Take last weekend, for example. Moe seemed fine: no fever, not stuffed up, no cough. But from Friday afternoon he did not stop crying or whining. It was pretty much continuous, even through the night. We were worried. So on Sunday, Jeff took Moe to urgent care. And do you know what they do for a non-verbal autistic kid who can't tell you where it hurts or even if it hurts? Everything. They checked his ears, throat, stomach, teeth. They checked for twisted testicles. I don't even know what that is, and I'm definitely not Googling it. But I'm sure Moe freaked out at the exam. The doctor didn't find anything except maybe a little fluid in his ears, and I'm glad she was so thorough.

But it would have been so much much easier if Moe could just tell us about how he felt, even a little bit. Sign "ouch" and point to an ear, throat or tooth. Something. Anything.

I just got a birthday party invitation for next month. The kids from Moe's old play group are starting to turn four. Four. That's not even close to being a baby anymore. The party is at the park, and the invitation says to bring bikes and scooters. Moe can't ride a scooter. He can't even pedal a tricycle. No one at this party will be judging us; they know about his delays. And I know it is important for Moe to go to things with typical kids. But I also know that Jeff and I will spend the day chasing Moe around the park while the other kids pedal right past him, literally and figuratively.

I recently heard another song. It is from the album Lonely Avenue by Ben Folds, lyrics by Nick Hornby. It is called "Picture Window:"

You know what hope is? Hope is a bastard. Hope is a liar, a cheat and a tease. Hope comes near you, kick its backside. Got no place in days like these.

It turns out, Hope is a fickle lover. Sometimes you work hard and hope with all your might, and there are still days and weeks that kick your ass. And Hope laughs at you, and throws another punch: a regression, a tantrum, a teething toddler. Even the phrase "get your hopes up" is revealing, since what goes up must come down. Or so they say.

And then, just as suddenly, when you thought all hope was lost, you have a good day. Smiles and giggles, eyes looking right at yours, a wave goodbye. So you start to think maybe? Maybe everything will be okay. Maybe this time will be different. So you start to hope all over again.

After all, what choice do you have?

Today's post is part of Mama Kat's Writer's Workship, and was inspired by the prompt "a song of significance."

Wordless Wednesday: Moe and his Monkey

Fitting In

What does it mean to fit in? To assimilate?
If I am a Jew or a Muslim in a primarily Christian country, will I ever feel I truly belong, even if I was born here?
If I am an immigrant, with Spanish or Mandarin or Hindi as my first language, will I ever feel like a native, even if I am here legally?
If I am a person with autism, will I ever feel like I fit in, even if I learn how to behave in socially accpetable ways?

When Moe was first diagnosed with autism, we started behavioral therapies. We worked on (and are still working on) things like waving hello or goodbye, responding to his name, and making choices. We've come a little way on these, although Moe's responses are inconsistent at best, and often seem more like learned responses than actual greetings or choices. So we asked our developmental pediatrician about it. If we teach Moe to respond to a smile or to look at someone when asking for something, will he really understand the meaning behind what he is doing? Or are we just training him how to behave?

The answer we got was somewhere between "we don't know" and "partially." And although I try to tell myself that it doesn't matter, I do want Moe to do more than just cope in society. I want him to be a part of the world, to feel accepted and understood. To belong.

We don't know yet whether Moe will be in an integrated classroom in the future or if he'll always been in a special education program. If he is integrated with typical kids, he may learn from them, and they from him. He may make friends and be accepted by them. But will he ever feel like he fits in? If his mind works so differently from the "normie" kids, will he feel at home with them? Or will he always just be playing a role?

And if he is in a classroom with only other autistic kids, he won't have as much exposure to the outside world, and it may magnify his sense of being an outsider. But there may also be a benefit to being with other kids who share his experience, who understand what it is like to be different.

I hope as time goes on, the answers to these questions will become clearer. And perhaps Moe will even be able to help us answer them. It is hard knowing that there is a fundamental difference between the way Moe sees the world and the way I do, that I will never truly understand his experience. I just hope he knows that we'll work as hard to understand him as he is working to understand us. And that no matter how large that gap, he is accepted, loved and needed right here at home.

Today's post was inspired by Mr. Rosenblum Dreams in English: A Novel, as part of From Left To Write. I was given a copy of the book by the publisher, but was not otherwise compensated for this post.

What Is

Saturday morning, tired after a restless night. He went to sleep crying and woke up the same.
Dad sleeps in. It will be my turn tomorrow.

All awake, we decide to take a drive. Get some lunch at our favorite diner.
Hope getting out of the house will help him calm down, still whining after 4 hours.

Just a 10 minute wait, but it is too long. Whines have turned to cries and we can't subject anyone else - or ourselves - to that through a meal. We return to the car.

Put the kids in the stroller. Decide on an impromptu sidewalk cafe lunch. 2 sandwiches for the adults. 2 frozen yogurts for the kids. And a muffin to share.

One yogurt remains untouched by its intended consumer. Good thing I brought crackers. Crying subsides, though occasional whimpers remain. Able to relax for a moment, however brief.

Walking down the sidewalk, a woman and her son. He's maybe 4. She's adorably pregnant. The boy peppers her with questions. An image of what might of been.

A few minutes later, another mother and son. This time a young man, maybe 15? He's a quarter block ahead of his mom. As he approaches, I can tell. Autism. Possibly Tourette's. An image of what might come to be.

We pack up and head back to the car. Exhausted. Spent. But hanging on. An image of what is.

The Best Birthday Present Ever

This is my birthday week and I couldn't be more excited about my gift. No, I'm not talking about the new iPad which was announced on my birthday and which will, I hope, soon be mine. I'm talking about a shiny new piece of blog bling I get to display:

That's right, today I have a piece syndicated on BlogHer! Winning! It is called Unspoken But True. Even if you've read this piece before here, I'd appreciate it if you'd visit BlogHer and leave a comment over there. I'm hoping to be invited back again.

If you're visiting me for the first time, I'm so happy you're here. I write primarily about raising Moe, my three year old son with autism. You can learn about me and my family by clicking on the Peanut Gallery link in the header.

Here are some of my favorite posts from the last few months. Enjoy them, and I hope you'll visit again soon.

Dreams of a Parallel Universe: One of my favorites ever, it holds a little surprise.

Remember Only This: A post inspired by a Maya Angelou quote.

Cold Hands, Warm Heart: My short and sweet approach to Moe's autism.

Forever Linked: Post inspired by events that changed me, and the world, forever.

No More Wishes: Why I've given up wishing, but found hope instead.

Water Baby

Today's writing prompt: "Water gives life. Water takes it away."

Moe is a sensory seeker and water is his first pleasure. It is almost like a drug for him; he seems to physically need that particular type of input. Put an open cup of water in front of him and he is perfectly able to drink out of it, but he'd much rather put his hands in it. If Moe hasn't had his bath for the day, he will seek out water in any way he can: splashing in the dog dish or fish tank, turning on the sink and splashing water everywhere, or pressing the lever on the refrigerator's water dispenser and letting the water spray on him.

This can be really scary, especially since Moe has almost no sense of danger. When Moe was around two, we went to a park with a lake near my parents' house. Although the day was uneventful, for days, I couldn't fall asleep thinking about what would have happened if Moe had run into the lake. I'd close my eyes and picture him slipping beneath the black water. A trip to the beach last summer required absolute constant attention because Moe wanted to run straight into the ocean. I can't imagine what would have happened when Moe got out of our yard if our neighbors had a pool. 

The flip side of this is the absolute joy on Moe's face when he's in the water. I wanted to sign him up for an amazing surf camp for autistic kids, but we didn't think he was ready. I want to get him swim lessons this summer, though I have no idea how you teach a child with very little receptive language and no desire to imitate. I found a local pool with an adapted aquatics program, and may give that a try.

For now, Jeff and I are going to start taking the kids to the pool at our local Y (it has a waterslide and big mushroom!) and see how much we can teach Moe ourselves. Mostly, we want to just let him have a lot of fun. And maybe keep him out of the fish tank.

Big news! I'm going to be syndicated on BlogHer today.

Come back after 3:00 p.m. for details or follow me on Twitter (@wantapeanut).