June 30, 2011
Still, Moe seemed a bit off. He hadn't been eating as much as he usually does, and without going into graphic details (your welcome), his diaper indicated perhaps a bit of a stomach ache. He was a little fussy over the weekend and at school on Monday, and his lunch box came back almost full. Moe puts everything in his mouth, tries to drink water out of the fountain in the backyard, and I was a little concerned he picked up something outside. But he didn't seem sick enough to have an infection, so we just carried on.
On Tuesday, Moe wasn't going to go to school and we were ready to go our penultimate meeting for the PRT research study up at Stanford. I had been stressed about this session because I didn't have childcare for Jelly, and had been juggling things around to make it work. But our new babysitter, who is starting with us next week, happened to be free that day. Moe actually ate a little breakfast, and was ready to go. Things were back on track.
The new babysitter arrived. She had met Jelly once before, but not Moe, who was sitting on the couch. She walked in the house, and just as I was saying "And this is Moe..." he threw up all over the couch.
All I could think was, "you have got to be kidding me."
Thankfully, the babysitter did not turn around and leave. She actually helped me with the cleanup and watched both kids while I rescheduled appointments, called the doctor, and ran to the grocery story for saltines and popsicles.
Moe seemed to be much better on Wednesday. We decided to go ahead with the speech evaluation we had scheduled with an SLP who specialized in augmentative communication. I already rescheduled this appointment once because Moe was sick, and wasn't going to wait another 2-3 months to get a new appointment. So we went...
Did Moe throw up all over this highly sought-after SLP?
Did I get the date of the appointment wrong?
Did Moe suddenly start talking on the way to the appointment?
Stay tuned to find out more!
Don't forget there's still time to enter my book giveaway! Just comment on my post about The Anti-Romantic Child.
June 28, 2011
In many ways, Moe and Benj are opposites. Where Benj was a very early reader and talker, Moe is still, at age 4, almost completely non-verbal. Where Benj suffers from sometimes extreme anxiety, Moe handles new situations without fuss, seeming oblivious to expected changes in his behavior. And where Benj is bothered by over-stimulating sensory environments, Moe is a sensory seeker, craving hugs and squeezes, lights and sounds. Our kids are perhaps as different as any two kids, on or off the spectrum, could be.
Benj's mother and I are on the surface also very different. She was born and raised amongst academics and artists in New York City, while I am a Southern California valley girl. While both attended Yale, she studied Romantic poetry, and I was at the School of Management, business being perhaps the very definition of an unromantic pursuit. Yet we share the experience of being the parent of child with special needs, something that transcends our other differences. We share the same worries and fears about our kids being "different." We struggle with the same day to day challenges of new experiences, of wondering if we're doing the right things, of navigating the world of therapy and finding the right school placements. Our marriages strain under the many pressures of raising a special needs child. And many of us, like Gilman, are also raising a typical child.
Gilman uses poetry as a backdrop for her story, primarily quoting Wordsworth throughout the book. Although I found this challenging at times, there were moments when the words resonated with me. Gilman imagined a romantic and carefree childhood, much like her own, for her son. When that seemed as if it were not to be, and later when her father passed away, she felt "like a grownup, in a negative sense, for the first time." She looked back at her past, and how far she's traveled from those younger days, and noted "Two consciousnesses, conscious of myself/And of some other Being." (Wordsworth, Prelude, II.) I have often felt a great divide between who I was before I had Moe, and who I am now, sometimes not recognizing the latter.
Gilman also struggles with the idea that her son is so different from herself. At first, she believes that Benj is just like her husband, as I have believed often that Moe is just like Jeff. But as it became clearer that Benj was not just a bit quirky and precocious, she realized that she was "living with a very different child than I had been." Although no one can control the temperament of their children, we long to see some of ourselves in them, and this can be very difficult to find when your child is on the autism spectrum.
Gilman is a constant fighter and believer in Benj. Perhaps this is seen most poignantly in her search to find the right school placements for Benj, in the highly competitive New York City private school environment. She longs not just for a school that can manage his needs, but also for others to see him as she sees him, wanting people who "cared for and about his soul." She finds such a placement. Gilman is fortunate: so many of us are lucky just to find someplace that will keep are children safe, let alone teach them and love them.
What I appreciated most about this book was Gilman's honesty in her journey toward true acceptance of her son. It wasn't easy to realize that "this is and will be my life - this day-to-day work on and for and with Benj." She learned to reject the expectations society put on her, especially as an academic, and her son, to focus on appreciating and understanding Benj:
My goal as a mother is to never stop fighting that battle for Benj's essential self and to teach him how to fight it on his own behalf.I've always struggled with poetry, despite my years of higher education. But Benj's story, his challenges and triumphs, carried me through. And I appreciated Gilman's love for poetry, using familiar words to carry her through difficult times and finding new meanings within those words. Like Gilman, I too find comfort in words. I find strength reading others' stories, in books and on blogs. But primarily, I find strength by writing my own words as Moe and I continue our journey together.
I have two copies of the book, The Anti-Romantic Child, to give away! Just leave a comment on what you use as sources of strength. Books? Movies? Music? This blog? I'll randomly select two winners on Friday.
I was given a copy of this book by the publisher, though all opinions are my own.
If you want to learn more about hyperlexia, I've been told this book is excellent: When Babies Read: A Practical Guide to Helping Young Children with Hyperlexia, Asperger Syndrome and High-Functioning Autism
June 26, 2011
There isn't much to the game. Once Jelly (or Moe) is naked on the changing table, I stop and very seriously say "Uh oh," followed by "I see a naked baby!" Then I tickle her saying "nakednakednakednakednakednakednaked." I'll sometimes embellish the game in a number of ways, usually by making the "uh oh" more serious, or drawing out the "naaaaked baaaaby." It cracks her up and she will often ask for "naked baby" as soon as she is on the changing table.
Our little ones grow up so fast, and with every passing day, it seems Jelly is less and less of a baby. She has an understanding of the world around her that is beyond her age. So the other day, we were playing the naked baby game and I asked Jelly if she was a baby or a big girl. I was so happy when she said "baby."
Jelly has been making big strides toward potty training. I've been introducing her to the potty, talking about it and having her sit on the potty, but otherwise not doing much about it. She's only 26 months old and many friends have told me that their biggest mistake with potty training was starting too early. Yesterday, she asked to "go potty" so I put her on it. She read a couple books, we hung out, but nothing happened. When she said she was "all done potty," we put the diaper back on and went back to playing, though I did notice she had a wet diaper a short time after.
Again today, Jelly asked to "go potty." I put her on the potty, and started reading her a book. Moe came in and we hung out. I wasn't paying much attention, but at one point checked the potty and she had gone! Hooray! We made a big deal of it, and though Jelly seemed to be confused at first why we were so excited, she smiled proudly. And when we made the transfer and flushed the "big potty," she had to follow all the same steps I use, close lid, close baby-proof latch, then flush. Clearly, she's been paying attention.
Today, when we were playing "naked baby" I asked Jelly if she was a baby or a big girl. She said "big girl." I'm not sure I'm ready for this.
June 22, 2011
I don't know a lot of jokes, and when I try to tell one I usually end up either forgetting it or cracking myself up so much I can't get through the punchline. But I can be pretty goofy and have been known to, on occasion, deliver a great one-liner.
When Moe was diagnosed with autism, one of my biggest concerns was that he wouldn't understand me. Kids on the spectrum can be very literal and I am often sarcastic. I was concerned he wouldn't have a sense of humor, wouldn't "get" me. That he'd never lose himself so completely in laughter that he couldn't stop.
My most powerful memories are those times when I've lost myself in laughter: listening to my uncles tell stories around the Thanksgiving table; unable to catch my breath with my girlfriends, where each glance would cause a new wave of pee-in-your-pants hysteria; laughing with Jeff as we catch up in the evenings. Forget for a moment all my concerns about Moe's future independence, or friendships, or marriage. I wondered above all, would Moe have laughter?
While we're not exactly cracking jokes yet, I can definitely say Moe has laughter. Although he sometimes laughs a bit maniacally, with no apparent cause, other times his giggles are clearly genuine. He'll laugh at a certain song, or at an appropriate time in a book or TV show. He'll give you a mischievous smirk before doing something naughty. He, I believe, tries to be funny, and his laughter is the most beautiful sound on earth.
While it may be some time before we're messing up punchlines together, I'm certain Moe has a sense of humor. And since he's still in diapers, I don't even have to worry that he'll pee in his pants.
June 20, 2011
Moe's first year of preschool flew by. Progress peeked through in small but noticeable ways.
As suddenly as the school year ended, the weather changed. Now it is 90 degrees. I'm folding sweatshirts and long sleeves from Moe's laundry, even as he's running around in shorts and a t-shirt.
Moe was off last week, his only real break for the summer. We spent the time outside, playing in the wading pool and running through sprinkler toys. He had a really good week, and was tired at the end of each day. We were all happy to get to sleep in a little, lounge in our pajamas each morning, with no hurry to pack a lunch or be anywhere on time. But by Sunday, we were ready to get back to a routine.
So today, Moe started the summer session. He is in the same classroom as he is during the year, with a new teacher (the same one from last summer) and a new aide. Thankfully, one aide, Ms. K, stays through the summer. We love her and I feel better seeing a familiar face.
I remember so clearly watching the moms of older kids last summer, the ones who knew the routine, knew where to park, knew each other. This year, I am one of those moms. I no longer let my inner fears betray my outer confidence. Not usually, anyway.
Pick up and drop off were chaos today. There is some kind of summer enrichment program at the school and they are using the same drop off point as special ed (usually we have a separate entrance). Someone blocked the school bus in the drop off circle, and now we can't use it. Many of the teachers are new, so they don't know which parents they are supposed to be looking for. Kids were late. I stepped in gum. Darn typical kids ruining it for the rest of us.
The new aide walked Moe back to his classroom. They were almost at the room when I saw Moe break free and start running. Ms. K and I laughed. She'll learn.
June 19, 2011
Eating waffles with berries and whipped cream.
Hanging out together.
So I'm not writing much of a father's day post. We'll do a wrap-up tomorrow. For now, I give you this:
Happy father's day to all of the wonderful dads out there!
June 18, 2011
I got up to an alarm. I took a shower. I got dressed. I poured coffee into a commuter mug (that I would actually commute with), and grabbed a bag that did not contain diapers, wipes, or sippy cups. I put NPR on the radio and drove by myself.
|Why, yes, Lynn. This is exactly what I look like.|
When I cam home, the kids were sill in their pajamas. There was crayon on the walls. The dishwasher had not been emptied and dishes were piling up around the kitchen. The dog had not had her pill.
None of this, by the way, was Jeff's fault. Other than the crayon, things were just as I had left them. I realized again that my going back to work would not make these tasks go away.
Nor would it make Moe's therapy schedule go away, nor my need to be involved in those therapies. It would just make things more complicated, schedules more difficult to arrange, and add a lot more stress.
But for one morning, it was really fun having a house husband.
Image from http://www.123rf.com/
June 17, 2011
He has light blue eyes.
|Moe, 18 months|
|To. Die. For.|
I've heard it said many times that kids with autism tend to be unusually good looking. Moe's teacher said she's noticed in her many years of experience that her autistic students are almost always really beautiful. She noted "it's not fair," and I knew exactly what she meant.
Then again, isn't it fair? Since one of the primary markers of autism is difficulty with social interactions, wouldn't it be only fair to have a beautiful face, one that might draw people to you? Genetically this seems to make sense. Adults with autism (or shyness or other social anxieties) might find it difficult to meet people. But those who are good looking might have a better chance at attracting a mate, passing along both those beautiful features and their autistic ones. (This may also be why there are such high rates of autism in the Bay Area: all those smart engineers who are valued for their brains and higher earning potential. Those "geeky" traits might not be fully appreciated elsewhere.)
Did I mention I'm not a scientist?
Did I mention I married an engineer?
Moe's teachers are immediately drawn to him. He is a lovable kid, but he can be difficult, mischievous, and frustrating. He bites. He makes an enormous mess at snack time. He takes off his diaper. Jeff and I often find ourselves saying "it's a good thing you're cute." I know Moe's teachers and therapists would teach him with love and professionalism no matter what he looked like, but his adorable features do serve him well. You want to help him. You'll do almost anything to see him smile.
This isn't always a good thing. During Moe's intense year of ABA (behavior therapy), Moe walked all over some of the less experienced therapists. It's hard to say no to his face. It's hard to make yourself stop his giggles to get Moe to focus and do some work. And he knows it. He uses it.
If you looked like this, wouldn't you?
Written for this week's Red Writing Hood prompt: Physical beauty. It can open doors - and can also shut them.Write a scene in which a physically beautiful character is somehow impacted by that trait.
June 16, 2011
One of my concerns has been that she hasn't shown a lot of interest in other kids her age. When we go to playdates, she prefers to play alone or with me. Although she's playing completely appropriately, the other two year olds we know have older siblings to play with, and I can see the difference in their behavior. Of course, Jelly has Moe, but he is at school all day and doesn't pay much attention to her when he is at home.
But in the last week or so, something seems to have switched. Jelly started following some of the other kids in music class, imitating what they were doing and sometimes even being the leader. She's making more of an effort to interact with Moe, and will often run down the hall yelling "Moooooe, where aaaare you?" She'll find him and say "Oh. Hi. Good job guys. We did it!" (Those are things either I or Dora say, which of course leads me to wonder if she's using too much scripted language. Ugh.)
Moe doesn't interact with other kids at all (though he does engage with adults), and his social and play skills are, along with language, my biggest concern. Yesterday, we were outside and the kids were spending time in the wading pool (the best $10 I ever spent). Moe was sitting in the water and Jelly was filling her watering can and pouring it into the pool. Moe loves to put his hand under pouring water, so he noticed what Jelly was doing and put his hand in the stream. They repeated this at least five or six times. They weren't quite playing house, but it was interaction, and I was so proud of both of them!
June 14, 2011
Going places with Moe can be a challenge. Because he will run off if not held tightly, I always need a plan. Park close to a parking ticket vending machine. Leave Moe in the car while I retrieve the ticket for the dash. Then get Moe out of the car seat and cross the long parking lot.
We enter the lobby of the child psychiatry building and check in. Moe pulls my arm or drops to the floor trying to break free. He tries to run down the hall. I steer him to the fish tank and we count the fish. We wander the lobby. One time he tried to get to the elevators. If we have to wait more than just a few minutes, we both come very close to a meltdown.
Eventually Dr B comes and gets us. She shows us to one of two or three different rooms, set up like little living rooms with couches and lamps. We exchange the business of the study, I hand her the forms I fill out every week and she gives me next week's assignments. Then we start.
We wait for Moe to get interested in some toys. We give choices of things to play with. We get shared control of favorite things, and make Moe request "more." We block access to favorite hiding spots unless we get a verbal request. One time Moe made up a game: get on couch, get down from couch, cross room, turn off light. Over and over he did this, and over and over we were able to stop him and ask him to say "down" to leave the couch, "off" to turn off the light, or "up" to get back up. It worked really well.
Sometimes, Moe just isn't very interested in the toys we have and he'll start to flip through a magazine that has been in the room since early May. I know the date, because it is a People magazine with pictures of the royal wedding. Moe flips the pages, stopping always at certain ones. Sometimes we hold the pages and ask him to say "turn" before allowing him to turn the page.
Moe is a fairly affectionate kid but he isn't much of a kisser. As I've written about before, if I say "give me a kiss," Moe will hold out his hand for me to kiss, a response he learned in the days when I couldn't reach him in his crib and I just had to give him one last good night kiss. So imagine my surprise when, last week, Moe was flipping through the magazine and all of a sudden he stopped, looked up, and kissed me. A real, on the cheek, kiss.
Dr B and I looked at each other with surprise and delight. We cooed over him for a moment, and then moved on. I don't have any idea what brought on that cute kiss. Perhaps he saw a picture of the royal couple kissing on the balcony. Or maybe he just felt the need to reach out and kiss me, as I do to him as often as possible. Whatever the reason, I basked in the glow of that moment for the rest of the day.
Moe hasn't kissed me again since that day. Like so many of his behaviors, I see amazing glimpses that last just a moment, then slip away so quickly I wonder if they really happened at all. But these moments keep me going, remind me that although Moe may not be able to express his thoughts or feelings, they are there inside him, just waiting to come out at the most surprising moments.
June 11, 2011
I'm honored to be guest posting today over at The Squashed Bologna for her regular feature, Special Needs Sibling Saturday. This series has given me such insight into what it might be like for Jelly and Moe as they grow up together, and I'm honored to be able to share my story.
While you're over there, get to know Varda more. Her blog is all about being part of the sandwich generation, something I know many of you can relate to. She is a wonderful writer and our virtual paths have crossed in many blogging circles.
Now go read my post, Brothers and Sisters: The Next Generation!
June 10, 2011
And because Lynn blogged about pizza today.
And because it is one of the only ways I can get my kids to eat vegetables.
I now present to you my easy-peasy broccoli tomato pizza.
First, start with The Pioneer Woman's pizza dough. I made mine this afternoon. You can substitute whole wheat flour for all purpose if you want to. I usually do half and half, but today I used all white flour.
Spread it as thin as you can get it on a well oiled pan.
Top with sauce of your choice. Sometimes I use homemade, but this time I used Trader Joe's pizza sauce. Then add veggies of your choice. I love broccoli on pizza. The key is to chop it pretty small.
I happened to have some fresh tomatoes from our veggie delivery box that came today, so I put those on too. At one point, Moe came over and was watching me. He sampled a small piece of broccoli and ate it, so I gave him a bigger piece to eat. He took it from me and put it on the pizza.
People? Moe helped!
|Moe's piece is the large one left-center|
And bake in a hot 500 degree oven for around 8 minutes.
Let cool for a few minutes and serve to hungry children.
Note: Your toddler may decide not to eat the pizza, but prefer instead to sort her fruit.
The dough recipe makes a double batch, so wrap the other half in plastic wrap and pop in the freezer. Wedge between various frozen items from Trader Joe's.
June 9, 2011
Moe will spend the first half of the summer in the district's extended school year (ESY) program. Although his teacher doesn't work summers, it is the same classroom and one of his current aids will be there as well. After the ESY program ends (I can't imagine how anyone thinks a four-week program is enough), Moe is going to attend a private autism preschool for the rest of the summer. Both classes end around noon.
Leaving me with long, hot summer afternoons to fill. The area we live in has wonderful activities for little kids. Happy Hollow Park and Zoo and the Children's Discovery Museum are all within ten minutes of our house. I can be at the beach in 45 minutes. Gilroy Gardens, an amusement park geared toward toddlers and preschoolers, is less than an hour away. We live near numerous parks with water features. There is a pool at the Y, and many beautiful swim clubs we could join.
Oh how I'd love to join a swim club. I'd relax by the pool while the kids splashed in the water with their friends.
Okay, okay. That last one is unrealistic for any parent with a two year old and a four year old. I got caught up in the dream for a moment.
The point is, I can't take both kids anywhere by myself, unless they are strapped into the stroller. Moe is just too much of a flight risk and Jelly couldn't keep up if he took off. I do have some babysitting help, but mostly to watch Jelly when I take Moe to therapy. Maybe I should have hired someone five afternoons a week. But that is expensive, and would seriously cut into my future swim club membership fees.
The good news is that we do have an enclosed backyard. We will be spending a lot of time out there. I got some sprinkler toys and will buy a little wading pool. We can take stroller walks around the neighborhood when it isn't too hot and air conditioning when it is. I'm fairly certain our house will be an enormous mess. But I guess it already is.
I will try to make the most of the summer, and like last year, we'll get through it. Maybe next summer, I'll be able to take the kids out myself. For now, there's only 74 days until school starts again.
June 6, 2011
The kids like watching "So You Think You Can Dance." A couple of days ago, Jelly requested "watch dancing" so I shouted down the hall, "Moe, do you want to watch dancing?" He ran down the hall and plopped on the couch. A minute later, it hit me. He understood that.
More and more, Moe seems to be listening and comprehending. He can follow simple commands, like "sit down" or "let's go." This progress seemed to have taken both years of therapy and happened all of a sudden. This is the paradox of progress.
If you watch a snail creep across the ground, especially from a few feet away, you hardly notice it is moving. It seems like it would take forever for it to get anywhere. But if you look away for a few minutes, that snail will have made progress, and perhaps gone farther than you expected.
So many endeavors are like this, from weight loss to a child's growth and development. The changes happen almost imperceptibly. But then one day, you're packing away old clothes and replacing them with a new size. Or your son starts understanding the world around him a bit more.
The progress is there. Sometimes we just have to take a step back to notice.
This post was inspired by The Sound of a Wild Snail Eating, by Elisabeth Tova Baily. I was given a copy of the book as part of From Left to Write book club, but was not otherwise compensated for this piece. You can read other members' posts inspired by the book on book club day, June 7, at From Left to Write.