An Unfortunate Series of Events

Jeff was at a class on Thursday night. I got the kids in bed, ate some dinner and planned to spend the rest of the evening assembling the dollhouse we got for Jelly's birthday. Around 8:30 or so, I noticed Moe was still awake. This was not surprising, and usually I go in, change him if necessary, tuck him in, and he falls asleep in a few minutes.

This time, I went in to find Moe completely naked, a poop-filled diaper off and the obvious mess that would follow the removal of said diaper. Needless to say, getting Moe cleaned and changed, then changing the sheets, pillows and blankets while trying to keep him from running around the house was a royal pain in the ass.

This was not the first time Moe has taken off his diaper in his crib, but it was the first time in the one piece pajamas, and is becoming a bit of a trend. Thankfully, he isn't always dirty. The boy just likes to be naked, I guess.

By the time I got Moe back down, then rocked Jelly who was still awake with all the commotion, it was almost 9:30 and I didn't want to start putting together a dollhouse. After assembling our play kitchen, I know these things can take hours. But I also felt awful that Jelly wouldn't wake up on her birthday with her present all put together.

Jeff got home, both kids were asleep and the house was quiet (of course). But he saved the day and put the dollhouse together. Jelly woke up to find her birthday present waiting for her, and it's awesome.

B Is Also For Birthday

Yesterday, I wrote my first Alphabe-Thursday post using the letter B. Today, I'm writing about another B-word: birthday. Today, my baby, little Jelly Belly herself, turns two.

Two.

Jelly entered my life at a difficult time, just before Moe's diagnosis. I worried I wouldn't love her like I love Moe. I worried she would get lost behind Moe's needs, his schedule, and my all-consuming worry for him.

I shouldn't have worried. From her first night in the hospital when she refused to sleep unless resting on my chest, she made herself known.

I recently heard a story that astounded me. Moe's speech therapist, JR, was at our local My Gym, where I also take Jelly. We go at a different day and time so I had no idea that JR went there. She was talking with the guy who runs the place about sign language with kids. He mentioned that he knows a little girl who uses more than 60 signs. JR realized that he must be talking about Moe's little sister. My little Jelly is already making a name for herself in the world.

Tonight (I'm writing this Thursday night) I will be putting together her dollhouse. I know most of my readers are parents of autistic kids, and so I know you understand the significance of giving a dollhouse to my little girl, who loves to pretend and feed her dolls and give them kisses and change their diapers.

Happy birthday, my sweet little girl. Don't grow up too fast.

B is for Biology

People are always telling us how much Moe looks like his dad. I have a hard time seeing it, but I recently came across these pictures of Jeff around Moe's age.

  

 

   

Okay. I see it now.

Genetics are a powerful thing.

Written as part of Jenny Matlock’s Alphabe-Thursday. My good friend Cheryl at Little Bit Quirky always does these, and since they’re starting a new round, I thought I’d try. I missed A, so here we go with B!

A Salute to Lieutenant

Our family dog was named BJ. She was an adorable mixed breed puppy who turned into an ugly dog. We loved her fiercely.

After I left for college, BJ was my brother Billy's constant companion. When she grew old and died, as dogs do, we were sad but old enough to understand. My mom, who was tired of barking and messes and the general inconveniences of owning a dog, swore she'd never have another.

When Billy's brain tumor returned, and aggressive surgery left him with extreme left-side weakness, he had to move home. He was in his early twenties. When "for a while" turned into "long term," he was understandably depressed. He asked for a dog.

There were rules: no puppies, already housebroken, not too big. Something like a beagle, we agreed. My brother, now motivated to get out of bed in the morning, would surf the internet researching dogs. In January 2000, Superbowl weekend, we drove to Beagles & Buddies dog rescue.

The four of us wandered the premises, greeted by the many dogs playing in the yard. I fell instantly in love with Beauty, an elegant fox hound who followed me our entire visit. Shiloh the puppy, was still recovering from injuries sustained at birth, and would not be available for many months. We asked to see the back kennels.

Billy spotted Lieutenant right away. Louie, as we would come to call him, is a "lemon" beagle mix, with light brown markings on white fur. He was young but not a puppy, playful and energetic, but jumped up on a bench to sit with Billy when he needed a rest. Louie came home with us that afternoon.

Lou, as is common with rescue dogs, had some behavior issues. It took many weeks to get him to do his business in the dog run rather than on the grass. Several times, he sprinted out the front door and we almost lost him. He was incredibly affectionate, but could turn aggressive toward visitors, though he never once even curled a lip to a member of our immediate family.

Louie stayed with Billy for the next two years, as my brother slowly descended further into his illness. Lou was the first dog my father ever allowed on a piece of furniture, and to this day, nine years after my brother's death, Lou still naps on Billy's bed.

Louie's aggressive tendencies are now gone. When I visit, if I'm the first awake in the morning, I sit on the floor with Lou cuddled in my lap. I always notice how his spots go all the way to his skin. He creeps slowly like a hunter when a tablecloth brushes his back. When you open the back door for him, he dashes out, sprinting counter-clockwise around the pool, before going to his designated potty spot. He still cheats sometimes and goes on the grass. Louie's elbows are calloused from chasing lizards up the side of the house. Sometimes he catches them. He pounces like a puppy when chasing a ball.

Lieutenant is old, at least 13 but we suspect older, his beagle's puppy-face and bounding nature betraying his true age. He was recently affected with a strange loss of balance, and although mostly recovered, we are reminded that he is not going to live forever. His death, when it comes, will be significant. He is one of the few things we still have that my brother also loved, and we are scared to lose that connection. My dad will take it the hardest.

We will be sad, but we are old enough to understand.

This week's RemembeRED prompt was to write about a time something terrible happened, but looking back, it brought something wonderful.

Notice of Eviction

To Autism:

This letter is to inform you that, effective today, you are formally asked to vacate the premises. Your presence here shall no longer be tolerated.

I don’t remember asking you to move in. You just let yourself in, uninvited and unannounced. I don’t know if you came via injection, ingestion, inhalation or inheritance and frankly I don’t care. However you got here, I just want you to leave.

You are the worst kind of house guest.

You have imposed yourself in every aspect of our lives. You do not allow us a single meal or visit to the park without your presence.

You’ve cost us and the state of CA, two entities who can hardly afford your exorbitant prices, approximately $300,000 in the two years since your arrivial. Funds were spent on multiple therapies (speech, behavior, and occupational), as well as numerous specialty items (including but not limited to weighted lap pads, chewy tubes, and three identical stuffed monkey toys), not to mention, time, gas, and additional bottles of wine consumed. Complete, itemized list available upon request.

Specialists have told us you will not go easily. They say it takes years to evict you, if it’s even possible. Others say to just let you move in and accept your presence. They say as I get to know you I might even learn to like you. I admit, at times you can be a charming devil, but I’ll take my chances. We can keep in touch on Facebook.

Please remember to lock the door on your way out. I won’t let you lead Moe outside only to find him drowned in a neighbor’s pool. This story is all too common and invades my dreams at night. I guess you’ve taken root there too.

Thank you for choosing to live in the Bush Family. You’ve taught us much and altered our lives forever. Now get out.

Sincerely,
Jennifer Bush
Director of Operations, Bush Family

Today's Red Writing Hood prompt was to write a formal letter to your greatest fear.

 

The Seder From...Well, Actually It Wasn't So Bad

Happy Passover to all my Jewish bloggy pals out there. I know there are a bunch of you. Not sure if there is some connection between being Jewish and having autistic kids, or if we just like talking about ourselves. Either way, I hope the mazoh doesn't have you too backed up today.

Last night we went to a Seder at a friend's house. I wanted to go for a lot of reasons, but mostly to keep the traditions of my childhood going as much as possible, and find some continuity in a very disrupted life. But I was also stressed about it. Anytime we go to another house with Moe, even one he's been to many times, one of us has to be on him constantly. Moe won't just sit and play or hang out with the other kids. He just runs around getting into trouble. At this particular house, he knows where all the bathrooms are, and seeks out every opportunity to find one and splash in the toilet. So we have to hold his hand or follow him around, greatly reducing our opportunities to kibitz. That's Yiddish for chit-chat, something we Jews do very well.

This time, we planned things well, sitting down at the table just a few minutes after arriving. I brought booster seats for the kids and that allowed us to strap him in. I brought 2 Passover books (thanks PJ Library!) and our 10 Plagues finger puppets, 5 per kid. Jelly kissed them all and Moe chewed on them. Regardless, they were occupied. We did a brief Seder so the kids had to wait to eat, but I doled out strawberries and juice to keep them from getting too hungry.

The kids did remarkably well, and sat through dinner. Both kids found enough to eat, though I couldn't convince them to try the most delicious items, including charoset (a concoction of apples, cinnamon, walnuts and wine) or some amazing sweet potatoes. They wouldn't try matzoh balls but ate hard boiled eggs. These are clearly not my children.

The highlight for me was getting Jelly to say "mah nishtana" during the four questions, traditionally said by the youngest person at the seder. The other kids joked about Jelly being too little to say them. She showed them. Next year, she'll probably be reading them herself.

I made 3 desserts: espresso meringues, chocolate toffee matzoh, and a sponge cake with strawberries and orange curd. We left around 8, and the kids both fell asleep quickly, surely another Passover miracle.

Photo found at http://basiceating.blogspot.com/2010_03_01_archive.html. Unable to locate original photo, although reference given as http://www.flickr.com/photos/idovermani/.

Sleep Update

It's now been 3 weeks since I last wrote about Moe's sleep issues. Jeff and I read your comments. We tracked and experimented. We have not done a formal sleep study, but we met with our developmental pediatrician. I'll leave out the boring details, but here is a brief summary of what we've been doing.

The first thing we did was to try take a break from the melatonin. The first day, we put down Moe down at his usual 7:00 bedtime. He didn't fall asleep, so at 8:30, we gave him the melatonin. He fell asleep within 15 minutes, and he didn't wake up until morning. We did this for the next few days.

Last week was spring break, so we decided to wait it out a little longer. We put him down at 7, skipped melatonin, and he still fell asleep around 8:30. And he didn't wake up until morning. Interesting, right?

We wondered if it was time to push Moe's bedtime back. We had thought about this but any time we tried it in the past, he woke up tired. Now I think Moe wasn't tired because he went to bed too late, but because he was awake part of the night. The melatonin was putting Moe to sleep artificially early, so he was waking up. Aha!

It's been over a week and Moe has been off the melatonin and consistently falling asleep on his own. Some days are easier than others, and he has woken up a couple nights for a brief time. But it's better

So here is what we learned:

1. Moe can fall asleep on his own. 
2. Moe doesn't need as much sleep as we thought.
3. Inconsistent sleepers are consistently inconsistent, so this will likely change again.

We're still putting Moe down early, around 7:30 or so, since it seems to take him a good hour to wind down. We wonder how much the fact that it is staying lighter later is a factor. And things may be a little different this week, since Moe will be back in school.

Hoping for the best, and enjoying some uninterrupted sleep, at least for now.

One Ranunculus

Last year, I planted flower bulbs. In the front yard, I planted big purple Allium. In scattered pots, I planted daffodils and paper whites. And in the backyard, I planted apot of my new favorites, ranunculus, with their fine layers of petals and pure, bright colors....

Want to read more? Read the rest of this post over at Musings of a Marf Mom, where I'm guest posting today. Click over and check us out!

Escargot? Oh no.

I sat down to write an update on Moe's sleep, what we've tried, what we've learned, what's worked and what hasn't. I still plan to do that, but not right now. Because as I sneak a peak at Moe on the video monitor, now sleeping peacefully, I just feel relief.

This week is spring break for Moe, so I've had him and Jelly at home. We've had some appointments, but for the most part, we've been home, as it is impossible for me to take both kids almost anywhere by myself. Just getting Moe and Jelly safely out of the car and through the parking lot to his OT appointment was so stressful and involved me unbuckling Moe but leaving him in the car, going around to get Jelly, going back around to the other side of the car and then pulling Moe out with one hand while still holding Jelly with the other. I've gotten this down to somewhat of an ungraceful art.

So we stayed home. We played inside and out, but Moe isn't very good at organizing his time, so he spent a lot of the day running aimlessly and putting things in his mouth. Inside, he bit the tire off a toy car, the very definition of a choking hazard. Outside, he put a snail in his mouth. It's disgusting - don't think about it too hard. The point is he is starting to need absolute constant supervision.

Moe was really manic before bed tonight. Jeff tried to calm him down by reading to him. They read some books, like Where the Sidewalk Ends, that I keep on a high shelf in the office so Moe can't destroy them.When they were done, he ran back into the office and tried to get the books by climbing on the swivel desk chair. Twice I rescued him from what I was sure was imminent head trauma.

I tried to calm him with deep pressure, rolling a ball on him, giving him tight hugs, but could barely keep him still. He pulled my hair and tried to bite me - not out of aggression, but when Moe gets really wound up, he bites whatever is in sight: books, his monkey toy, your arm if you're not quick enough. The only thing he won't bite these days are his chewy tubes. Go figure.

In the end, we couldn't do anything to help, so we put Moe in his crib and zipped up the crib tent. This was, as it turned, out exactly what Moe needed, and he calmed down in just ten or fifteen minutes. But I didn't like that the only thing we could do was basically lock him up. Moe is not quite four, and a small four at that. He's maybe 35 pounds, but I couldn't control him. What happens when he's five? Or ten?

Moe is growing and changing. I'm learning new ways to work with him that I hope help his ability to communicate. I understand that this is a long journey. But what is hitting me hard right now, is that Moe isn't getting any less autistic. Maybe that seems like a stupid thing to say and I don't mean to be insensitive. I recognize that this is a way of being, but it isn't my way of being. And part of me naively thought, or at least hoped really hard, that someday he'd be over it.

And now I find myself in a position where I am unable teach my son the things he needs to know. Like not to climb on a swivel chair, or run into the street. And definitely not to eat snails unless they are first drenched in butter and garlic.

Focus On Speech

One of the accepted, behaviorally based therapies for people with autism is Pivotal Response Training (PRT). Although many ABA providers, including the one we used during Moe's first year of early intervention, incorporate the concepts of PRT into their programs, few are exclusively implementers of PRT. Moe and I have been lucky to be accepted into a research trial at Stanford, and will be receiving 12 weeks of PRT!

PRT focuses on motivation. Although there are specific ways this is implemented, the general idea is to find your child's motivation and use it to elicit a response. In our case, we want a verbal attempt at saying the word. So if Moe wants his monkey toy, I hold the monkey, and say "monkey?" Then I wait for a response. If he says, or tries to say, monkey, he gets it; otherwise he doesn't. We're building the associations between words and getting what he wants.

This is only our first week, and though the concept is simple, the practice is challenging. It is hard to find something that truly motivates Moe. Though he has toys, activities and foods he likes, when asked to work for one, he'll usually walk away.

It is also tough to determine what is a true vocal attempt. You don't want to accept crying, whining or laughing since you don't want to associate those things with getting a desired result. Moe does a lot of singing and what I think are vocal "stims," or random sounds he likes to make. So I'm finding it tough to determine what is a true verbal attempt.

Finally, because this is a study focused on speech, I can't accept sign language. Although Moe doesn't do a lot of spontaneous signing, he will often sign when prompted or if the sign is modeled. And now that I'm focused on getting him highly motivated, Moe is signing better than ever. Part of me thinks that this is bad; any attempt at communication should be rewarded. But the focus of this study is language, and ultimately we want Moe to speak. (I'll talk more about this in the future.) And he can talk a little when he tries. So, as the researcher told me, for the next 12 weeks, we focus on speech.

As Moe approaches his fourth birthday and still doesn't speak, I'm really hoping this study produces some results for us. I'll update more as we progress through the study.

Stolen

There were words: first baby, then banana. We looked at belly buttons, pointed at pictures, made animal sounds.

And then the words disappeared: first banana, then baby.

Stolen.

I thought autism had taken everything. It wanted more than just words. It wanted my whole child, his mind, his innocence, his future.

It wanted to steal from me too. Wanted my time, my friends, my dreams, my marriage.

But now, as I work to clean up the mess, straighten up the drawers of life that were thrown open, their contents strewn about, I can see that all was not lost.

Friends who stuck by. A husband and father who loves no matter what. Hope above all.

And once in a while, we even find a word or two.

 

Post written as part of The Red Dress Club, and is, of course, open to concrit. 

Today's prompt: "Someone has stolen something from you (or your character). Something of tremendous value. What will you do to get it back? Or will you give up?"

A Confession

There is a grass roots movement to stop the use of the "r-word." It is an offensive term, hurtful when used to describe someone as stupid or silly. The organization R-Word notes on their website that:

when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity. 

They ask people to take a pledge to "support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities."

I agree. I understand the power of words and want to make mine count. But recently, when faced with an opportunity to educate, I did nothing.


Two evenings a week, I go to Zumba class. It's fun and I'm able to break a sweat without getting bored. The class I go to is very popular, with around 80 people coming every time. The instructor is fantastic,  likeable and funny. She's energetic and has abs to die for. And though I've started to recognize the regulars and even engage in occasional small talk, I don't really know anyone there.

Last week, about half way through the class, a lot of people left the floor for a water break. And that's when it happened: the instructor dropped the r-word. She said something like "don't make me do the next routine alone. It will look retarded." My heart sank.

But at the end of class, I gathered my things like always, and just left. I didn't say anything, just opted out. Of course I know that people who live with disabilities don't get to opt out even for a minute. And this class is at the YMCA, an organization that promotes inclusion. The instructor might have even been thankful if I had told her; I'm sure she doesn't mean to offend. I should have said something. I know.

I could make a lot of excuses as to why I didn't, but the truth is I didn't want to. Zumba class is the one place that I am anonymous, just a face in the crowd trying to shed some pounds and not fall down doing it. No one there knows my kid has autism. For 60 minutes, I don't have to be an advocate, therapist or teacher.

It was the weak choice, and I'm not proud. But if given another opportunity, I'm still not sure what I'll do.

For the perspective of someone who is putting some real effort behind the elimination of the r-word, please read this post by Ellen at Love That Max.

No Longer Babies

I remember when my BFF's twins turned four. They had a party at Pump-It-Up, and Moe had just finally started to walk. The pictures from that party are always shocking to me. There's one where Moe is pointing right at the camera. He's interacting with other kids. I used to look to those pictures as "proof" that he couldn't have autism. Now I look back at them as the turning point.

The birthday boys' grandmother, who I've now known for (gasp!) 20 years marveled at how big her grandsons had gotten, and how they really weren't babies anymore. They could dress themselves and were becoming self-sufficient. These kids, born premature and with speech delays of their own, were racing away from toddler-hood and barreling headlong toward becoming big kids.

Last weekend, we took Moe to a birthday party. Moe's playgroup friends, now just the kids of my "mom friends" since Moe hasn't participated in the playgroup in almost two years, are starting to turn four. I wasn't sure about going, but I really like this family and decided to try. It was in a park, so it didn't seem like it would be a big deal if Moe did his own thing.

As it turned out, Moe's "thing" was to run around and try to steal food, especially doughnuts, off of other peoples' plates. It was cute and we laughed it off, everyone understanding, joking about Moe's infamous love of cake. And yes, it was cute. It was funny. But it was also exhausting and frustrating, embarrassing and depressing.

As I looked around at the birthday boy and his friends, riding bikes and scooters, playing soccer and hockey and baseball, I saw a lot of children who were, indeed, no longer babies. All except for one, my child, who is still very much a baby. And though we parents often lament at how fast our kids are growing up, how we wish they could stay babies just a little bit longer, this is not what we really want.

Of course, Moe still doesn't understand any of this. He just really wanted a doughnut.

Lighting It Up Blue

See that peacock up there? He's usually green.

Tomorrow, April 2, is World Autism Awareness Day. To raise awareness, Autism Speaks is sponsoring the "Light It Up Blue" event. Prominent buildings around the world, from San Francisco's City Hall to the Empire State Building will turn their lights blue to raise awareness for autism.  

For those of us raising an autistic child, this is redundant. People on the autism spectrum do not need to be reminded. We are always aware. And we promote awareness every day: when we ask for help or accommodation, when we seek support, and when we blog and tweet about our lives.

But every day isn't enough. Most insurance companies do not cover autism services. Too many of my friends still receive rude comments at their child's behavior, are cut off from friends and family, or are told services are simply not available. Too many people are made to feel "less than" or their skills ignored or devalued because of their differences.

So this month, the peacock will be blue. It is my reminder that we still have work to do.

In other news... I was lucky enough to be featured by The Talk as one of the mom bloggers they're following! You can follow me on Twitter too @wantapeanut.

If you're visiting for the first time, thanks for coming! I write primarily about raising Moe, my almost four 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.
Unspoken But True: A special moment between me and Moe. Syndicated on BlogHer.
Forever Linked: Post inspired by events that changed me, and the world, forever.

Want to do something else to help raise autism awareness? Consider sponsoring me in the Walk Now for Autism Speaks! Just click that thermometer over on the right.