The girl in the shoe store

Yesterday, in search of an air conditioned place that wasn’t my house, I took Jelly to the mall. The play/germ-spreading area was being cleaned so I went into the Payless Shoes across the hall. Of course, I couldn’t just look (buy one, get one 1/2 off!) and ended up with two pairs. As I was paying, I noticed the girl at the cash register had a necklace with a really nice, pewter charm. It was in the shape of a puzzle piece and had an engraving I couldn’t quite make out. It looked heavy and important.

Of course, I recognized the symbolism of the puzzle piece, but wasn’t sure if I should say anything. I decided to say, “Do you mind if I ask the symbolism of your necklace?” She seemed surprised and spoke a little too quickly. “It is a puzzle piece that says I AM FEARLESS. My friend’s mom gave it to me.” She didn’t say anything more, so I said “It is really nice,” signed the credit card receipt, and left the store.

As I turned around, I saw the girl, who was probably about high school age, cover her face with her hands and hug a friend. I don’t think she was crying or upset, but rather seemed a little embarrassed at my question. I don’t know if the girl has autism. Before I asked the question, I had guessed the necklace was in support of a sibling, and I certainly didn’t mean to put her on the spot. I didn’t tell her my son has autism, the reason I asked. I wanted to go back and say something more, but when I circled back by the store, I couldn’t see her and the store had gotten busy. She probably didn’t want to hear any more from me anyway.

Before I asked the question, I don’t think I realized how young she was. Assuming she does have autism, I wanted to tell her how proud of her I was. How working in a store in the mall must be hard. How truly fearless she really must be, and by seeing her, how much hope she gave me that my own child will someday be just like any other kid, working in the mall, embarrassed at the slightest mention of something that might make you stand out or be different.

I don’t know if this is the exact necklace the girl was wearing, but here is a similar one: http://thegoodcheercompany.com/puzzle.htm

Excuse me!

Every day I am amazed at what Jelly can do. I have no idea if these things are “typical” or not. She’s hitting her developmental milestones for sure, but there are those are just checkpoints. So yes, Jelly points, but I didn’t realize that she would point at everything. And I didn’t realize that she would use that point meaningfully, as in “look at that!” or “I want that!”

From about the time she turned a year old, Jelly’s language and social skills seem to have just exploded. The fact that Moe never did so many of the things Jelly does makes it that much more fascinating when she does them. She imitates me, plays with toys the way I play with them, and does a lot of pretend play. She pretends to talk on the telephone, for example, and feeds her toys. I thought it would be a good idea to get this on tape, so at yesterday I got out my iPhone and started recording. Here is that recording:

Did you hear that at the end? It almost sounds like I added in a sound effect, but I swear I did not. That is my precious little flower belching like a frat boy. Lovely.

Here is take 2. This time we managed to keep some composure.

Isn't she sweet? You don't have to leave a comment telling me how cute she is, but if you feel like you must, I'll understand. Mwwah!

Back to school and dreaming big

The alarm went off at 7:00 this morning and my heart skipped a beat. Today is Moe’s first day back to school!

Many of the kids in Moe’s old playgroup will be starting preschool this year. I’m looking forward to seeing the pictures of them in their new school clothes, backpacks on and lunch boxes in hand. For Moe, this is old hat. He’s been going to school off and on for over a year now. Although there were some tears at drop off today, as soon as he saw his old classroom, he was all smiles. His teachers greeted him with big hugs.

This is a really important year for Moe. Last year was a really important year too, and it didn’t go as well as I had hoped. It took a few months for us to find the right program. And when we did finally get him the right type of therapy, I had such high hopes for the progress he would make. I imagined that at the end of a year, he would be connecting, talking, communicating. Maybe he’d still have some social issues, difficulty with play and imitation, but he’d be getting back on track. Moe did make progress, but quite honestly he’s not where I wanted him to be. I don’t think we made any mistakes, and there are only a few things I might have done differently (knowing what I know now), but developmentally, he just wasn’t ready to do what I hoped he would be doing, especially in language development.

So here we are. Moe is three and not talking, though lately it seems as if he may be trying again. He’s back in our public school’s preschool autism program, which he attended for just a total of 6 weeks at the end of last year and during the extended school year. Today, we’re starting fresh with a great program and wonderful teacher and again I have such high hopes. I’m afraid to wish for too much so I’m not disappointed – no, heartbroken – again. Jeff reminds me that we have to hope for it all, because what else would we do? Hope for less? If there is one thing I’ve learned, it is to never set the bar too low.

At work, we would always set some stretch goals for a project. These were the tasks we hoped to achieve, but that were probably slightly out of reach. In the striving for them, however, we probably accomplished more than we would have without them. So this year, I will let my hopes and dreams for Moe stretch as far as as I can imagine.

Boot camp? Yes, ma’am!

Yesterday I attended a blogging conference called Bloggy Boot Camp, put on by the SITS Girls. It was a lot of fun and very well run (thanks to super organized, very pretty Tiffany). I learned a lot, met many great women, and I spent an entire day out of the house. The speakers were knowledgeable and engaging, covering topics from privacy concerns (Angry Julie Monday) to how to monetize your blog (Ciaran Blumenfeld and Ted Rubin from OpenSky). Linsey Krolik, leader of the wonderful From Left To Write book club, spoke about bringing our blogs to the next level of professionalism as well as some legal issues we need to keep in mind. I have a notebook full of tips and tricks that I picked up from the speakers as well as the other bloggers I met. Our lunchtime discussion about making Twitter more manageable was especially useful.

I came away with ideas about how to take my blog to the next level. I want to continue to forge bonds within the autism/special needs blogging community. I have a goal to provide more practical information to other parents of kids going through early intervention, and I’m thinking about ways to better incorporate my experiences with regional centers, IFSPs, IEPs, and special education.

I was inspired most, however, by the two content-related speakers. Jessica Bern gave a very funny introduction to vlogging (video blogging). I sat next to her during one of the other sessions, and I instantly wished she was my best friend. Kristy Campbell, who is wonderful (and local!), spoke about the fundamentals of writing: finding your message, your voice and your tone. Jessica spoke first and Kristy spoke last, and for me this was like putting perfect bookends on the day. These women reminded me what I love most about my blog: that I get to write it.

I am generally not one to say that there is any bright side to autism. But if I had to find some proverbial lemonade, it would be that I have become a writer. Writing is my therapy, and my creative and emotional outlet.  It is something I always wanted to do but never before found the time or inspiration. Now I make time to write. And I find inspiration all around me, especially in the form of a little curly-haired boy.

For the love of god, where did you put the apple?

Earlier this week, we lost the remote control. This has happened before, so we have a backup remote. We were pretty sure that 1) one of the kids put it somewhere and 2) it would show up eventually. I found it the following day in Moe’s crib, where, apparently, he slept with it all night.

For better or worse, Moe is becoming increasingly self-sufficient. He can do things like eat with a fork (but only if he’s eating cake), take off his shoes (but only when he’s not supposed to), and, in his latest achievement, take off his diaper (oh, joy). As kids tend to do, he has also gotten taller which has allowed him to climb to new heights, usually using the bookshelf to splash around in the fish tank. Fun times.

Sometimes Moe’s independence is cute and shows some nice problem solving skills. For example, he’ll move the ottoman under the light switches so he can climb up and turn the lights on and off. And if there is something tasty on the kitchen counter, Moe will gladly help himself. So earlier today, Moe saw half an apple up there, took it down and started eating it. It was pretty cute and I didn’t see any problem with him eating the apple, so I let him have it. He happily crunched away while he was playing with a toy. I may or may not have been surfing the web on my iPhone.

Time passes.

Jelly got up from her nap. Other stuff happened. And then I realized that Moe was no longer playing with his toy. He was running around, and there was no sign of the apple.

I have spent the last hour following Moe around trying to figure out where he put the apple. I looked in the toy bins, the pile of laundry in my closet, his crib – you know, the obvious places. I even checked the counter where the apple originated. Moe did put a Lego car there, but not the apple. I begged him to tell me. “MOE! Where is the apple?” No response. I heard Jelly coughing. Maybe she found it and was choking on a piece! Nope. (But in a gorgeous piece of irony, she was reading a book called “A Was Once an Apple Pie”). A clue perhaps? I checked the oven.

This story is not like the remote control story. There is no happy ending. The best case is that the dog found it and took it outside. The more likely case is that I will forget about the apple. Sometime in the (hopefully) near future I will be innocently getting into bed, or doing laundry, and my foot will find the wet, mushy remnants of something that may have once been an apple.

Life, unfocused

I’ve been teasing Jeff for a while about how he needs glasses. He didn’t want them, thinks he’ll become dependent on them and that his eyes will get worse. Then one day we did a little at-home eye test. He realized that I, with my glasses, could see better than he could. A couple weeks later he came home with a minor prescription, and we picked up his first pair of glasses last weekend.

I remember the day I realized I needed glasses. I was in high school, in history class, with a teacher I didn’t particularly care for. I was a great student, but for some reason was always getting into trouble in that class. Once, she told me I was at the center of the sewing circle. Another time, she told me that it was “the quiet ones you have too watch out for.” I don’t really know what she meant by either of those, but apparently she thought I was a girl from the 1800s who might become a serial killer. But I digress.

Anyway, this teacher had very looping cursive handwriting and I used to have trouble reading the board in her class. I could usually make out just enough to get a sense of what she wrote, but never the whole picture. My best friend in HS had just gotten glasses and I tried them on to see what they would look like. I’m pretty sure they were pink plastic frames. Very cute (for the 80s). Lo and behold! I could see the board. About a week later, I got my own very cute, very 80s, new glasses. I’ve worn glasses every day since.

As Jeff has been marveling at how much clearer things are with his new glasses (which he looks very cute in, by the way), I’ve been wondering if that is what it is like for Moe. Maybe the world is just a bit fuzzy for him around the edges. I don’t mean that he has poor eyesight, but that maybe he isn’t always sure what he’s looking at. Moe sees what we see, hears what we hear, but can’t quite make sense of it all. If only I could get him a pair of glasses to help him see things a bit clearer. I think Moe would be amazed by the world has to offer.

Beating the odds

We all have a statistic or two we know by heart. Maybe you know the batting average of your favorite baseball player, or the average number of sunny days in your area. Some of us know numbers we wish we didn’t. Ask any parent of a child with autism about the divorce rate for families with special needs kids and they’ll tell you: 80%.

I was thinking about this while reading the book, The Stuff That Never Happened, by Maddie Dawson. In the book, the main character, Annabelle, has an affair when she is just recently married. She is able to reconcile with her husband, but 26 years later runs into her old flame, Jeremiah, who notes that he “turned out to be just a sad but ignorable footnote in the long and happy marriage of Grant and Annabelle McKay.” She tells him that she and her husband didn’t have it easy for a long time, to which Jeremiah responds “Oh, who ever has it easy in marriage? Nobody.”

In fact, recent studies question the alarming statistic. But even if incorrect, it seems to be widely believed, worn as a badge of courage, another reason that things are so difficult for us. I often wonder, and have written about on this blog, whether I blame too much of Moe’s behaviors on autism, when sometimes he just has “three year old.” Could it be the same with marriage? Why would it be so hard?

We disagree. All couples disagree, you say. Yes, that is true. But we (and I can only speak about my own marriage here, though I suspect others would have the same experience) argue about things that we cannot possibly know the answers to, like Moe’s rate of progress, or what a new behavior means. Everything is scary and unknown and there is very little to tell you that you are doing the right things, making it easy to move in different directions.

We blame and feel guilty. No one knows why our son has autism. They say it’s genetic? Well, clearly he takes after your side of the family. They say it’s environmental? Maybe I should have breastfed longer. Of course there is no sense playing that game, but we are only human and want answers. And when there is no answer, it is easy to either look at the other person responsible for that child’s existence.

We’re scared and stressed. Some families of special needs kids live in fear of losing their child to illness every day. We all have fears about the future. We are asked to make decisions about our child’s care, often without much to guide us. Do we try a certain diet/treatment/therapy/school? And when we do find the right diet/treatment/therapy/school, can we afford it? With all of this stress and fear, we might just take it out on each other more than we should.

Autism is all consuming. There are days when we don’t talk about much else, except maybe what is for dinner. We deal with it all day – and sometimes all night. You have to work at any marriage, and that requires energy we sometimes don’t have. 

So yes, I think it is hard. Is is harder for us than for someone else? Maybe. But does it matter? In the novel, Annabelle thinks “There are so many ways a marriage can implode…sexual infidelity is just one of them.” In the end, a marriage succeeds or it fails, and the heartbreak is no less if your child has special needs. Jeff and I are coming up on our fifth anniversary, and although this past year has been tough for us, I am pretty proud of the family we’ve become.

If you’re a parent of a special needs child, how is your marriage holding up? What are you tips for success, or lessons learned the hard way?

I received the book, The Things That Never Happened, free of charge from the publisher for the From Left To Write book club. For a great perspective on a marriage with not one, but two, special needs kids, read Rachel Coleman’s (of our beloved Signing Time) blog post Creating the Year 2010. Then plan to spend the next hour reading the rest of her blog.

Something in the air (Or everybody's crib camping!)

What is this force that propels us through life? Maybe you believe in destiny or karma, or my own favorite religion “coincidentalism.” I read quite a few autism blogs and sometimes, I swear, the autism gods are working together. I’ll read a post about how one kid made a big language leap, for example, and then it seems that’s all I’m reading about that day. Sometimes this can be a force for good, and we can all celebrate. And sometimes, well, yesterday happens.

It seems some of the more devious gods were working together. I’ve mentioned a couple of times that I read a blog called Both Hands and a Flashlight and that you should too. The writers, both parents of a child with autism, are fabulous and they often say exactly what I’m feeling, only better. When I first started, they wrote me a personal email with words of support I continue to refer to over a year later. But I digress.

A week or so ago, they wrote a post called, Climbing Out. But I hadn’t read it until yesterday. I even left a comment. My exact comment, dated Sunday August 5 at 3:03pm, reads:

Moe has been getting up a lot at night with such manic energy. He can climb out of his crib, but doesn’t, and I dread the day he decides it’s time. I don’t want to see that manic energy running all over the house at 2 am. No words of advice – just hoping to learn from you on this one.

I’m sure you can guess where this is going. At 2:00 in the morning, Jeff and I were awoken to the sound of Moe running down the hallway. Lord have mercy, it scared the crap out of me. You’ve heard the rest of this story from me before, so suffice it to say that it was not a fun night that finally ended with Moe falling asleep in our bed, when he was successfully transferred back to his crib. We had to get up two hours later.

The answer, we hope, is a crib tent. Unfortunately, no one sells them locally – not even Babies R Us - so I had to order one. It will arrive tomorrow.

Still not sleeping

I’m writing this post on borrowed time, in brief moments while Jelly naps and Moe occupies himself (read: stims) on various toys with lights, sounds and spinning pieces. These toys which I, in an attempt to encourage imaginative play, allowed to run out of batteries and be silent until today, are saving what little of my sanity I have left.

Despite the melatonin and despite the new mattress, our sleep issues continue. I say “our” sleep issues because when Moe doesn’t sleep, I don’t sleep. And last night, we didn’t sleep.

Yesterday, Moe had a morning appointment up at Stanford Child Psychiatry. We’re trying to get him into a research study up there and he had a language assessment. I couldn’t handle watching him at another assessment, so Jeff took him. Although these assessments are always stressful for Moe, Jeff said it wasn’t too bad. It was shorter than a regular day at school, so it shouldn’t have affected his schedule.

That afternoon, I put him down for a “nap.” Moe doesn’t actually sleep during nap time. He hasn’t since around his second birthday, but he likes hanging out in his crib and I like the break time. But yesterday, he napped for 3 1/2 hours, until almost 5:00 pm. Normally, I wouldn’t let him sleep that long, but the babysitter was here. Moe was also a little stuffed up and I suspected a cold. In the past, naps haven’t really affected his ability to fall asleep at night, but right now all bets are off. A half hour before bed time, he took his melatonin as usual and we put him down at his usual 7:00 bedtime.

7:30 rolls around, then 8, and he’s still making noise. Around 9, I checked his diaper. Clean, I tucked him back in. He was quiet for a while, then started jumping and squealing. Brought him into my bed and snuggled for a while. When he was calm and yawning, I put him back down, and he was once again quiet for a while, then not. Rinse and repeat three times or was it four? At some point, we gave him more melatonin, which did nothing. Around 1 or 2 am Jeff brought him to the living room and closed our bedroom door. Moe finally fell asleep at – wait for it - THREE O’CLOCK IN THE MORNING.

Thank god I had already decided not to send him to school today. I am also thankful that it is Friday, that Jelly didn’t wake up during the night, and that someone invented coffee, Diet Coke and chocolate covered pretzels. I am less thankful that the dog won’t stop barking, that I have not had a shower in what smells feels like days, and that I cannot put Moe in his crib today for fear that he might actually fall asleep.

I wish I were at BlogHer10. Mostly for the hotel room.

Quit It!

We have a new development in our home. It started just a couple of days ago. Honestly, I’m not sure if this is progress or not, but it is definitely new: Moe cannot stand Jelly. Doesn’t want anything to do with her. Passionately.

Yesterday, Moe was having a pretty colossal meltdown. I had no idea why, but I took him over to the couch, put a lap pad on him and sat and cuddled with him for a few minutes. He started to settle. Just then, as she does any time I’m paying attention to someone or something that isn’t her, Jelly came speed-crawling over to us. She stood up and cruised over to me. As she got closer, Moe got more and more upset. Soon, she was touching me and Moe lost it. First, he pushed her away, which clearly I couldn’t allow, so I had to tell him “no!” This, of course, only upset him more.

Then, in the sweetest, most heartbreaking brother-sister scene in our house to date, she offered him the cracker she was munching on. He freaked out even more because she dared to get even closer to him, and attempted to kick her, which I blocked. Again, I had to reprimand him with a “no kicking.” I felt bad, knowing that Moe just needed some Mommy time, but obviously, hitting is not okay.

At closing circle at school today, Moe was in my lap. Jelly was next to me on the floor, but of course wanted in my lap too. Moe was not happy about this, tried pushing her away, and could not get out of there fast enough.

We got home from school and the kids were playing (separately, of course). I made them both grilled cheese sandwiches and got them to the table for lunch. I put Jelly in her high chair first, then got Moe. He wanted nothing to do with lunch, left the table kicking and screaming, and ran to his room. I can’t be sure but I think he didn’t want to eat because Jelly was also there. Although I don’t plan on making this a habit, I let him work it out himself in his room. Some time later, after Jelly was finished and playing in the living room, Moe came back over to the table and sat down to eat. Again, Jelly came over, pushing her toy shopping cart, and offered Moe his favorite toy Monkey. This time, I made a big deal of it: “Oh look! Jelly is giving Moe his monkey. How nice!” Then I handed Moe the monkey, which he took.

When Jelly first came to the house, Moe completely ignored her. He would occasionally push her in her swing, but that was just because he liked pushing the swing. The last few months, the two have peacefully coexisted. Moe would play with toys, Jelly would steal them, and Moe would passively walk away. But this active resistance to her presence is something entirely new. That said, I’ve also noticed Moe imitating Jelly a few times. I’ve always hoped having her typical brain around would be a good influence on Moe, or at least provide some competition. It is going to be interesting to see how this continues to develop.

A day at the beach

This past weekend, we visited some friends who have been renting a house in Capitola, a great beach town near Santa Cruz, CA. It is an easy drive there, and the beach is such a fun place for kids.

Moe loves the water. Splashing in the water table in the backyard is one of his favorite activities. He is happy as can be in a swimming pool and bath time is such a fun activity that we’ve been trying to correlate whether taking a bath before bed actually makes sleeping harder for Moe. So it was no surprise that he absolutely loved the ocean.

When we got to the beach, Moe immediately took off running. There was so much sand and space! But when he finally saw the ocean, he knew where he wanted to be and made a break for it. He absolutely loved splashing in the water. Unfortunately, he has no sense of danger at all so one of us (usually Jeff) had to be by his side every second. As Jeff put it, if given the  chance Moe would just run straight into the water and keep on running until he drowned.

Capitola is cloudy in the mornings and it was only about 60 degrees out. When we finally dragged Moe out of the water for a snack, he was shivering, trying to wrap the towel around himself as tight as possible. We got him dressed and warm, but as soon as snack was done, he wanted right back in the water. We spent the rest of the day chasing him, making sure he didn’t get soaked. He only sat still when he was eating or when we buried him in the sand (which he quite enjoyed). This seemed, at first, like a brilliant plan, but didn’t keep him still for very long.

While Jeff was chasing Moe, Jelly was digging in the sand and just looking completely adorable. She played ball with Grandma and Grandpa, noticed all of the birds, and generally got very, very sandy.

 

As I mentioned in my last post, going anywhere with Moe has its challenges. I want to take him places, not just because I want him with us, but also because I think it is important for Moe to learn about the world. He needs to see how other kids play and act, and learn what is expected of him even at the beach, a place where it would seem very little is expected of you. Overall, it was not the most relaxing day on the beach, nor did I expect it to be. Moe deserves a chance to have his own kind of fun, and if this isn’t pure joy, I don’t know what is. What more could a mother want to give to her child? 

Why it’s hard

Sometimes I wonder if being Moe’s mom isn’t quite as hard as I make it out to be. Aren’t all three year olds are challenging creatures? Moe can’t talk, but he can jump and run and laugh and what else does he really need to do right now? But invariably, something will remind me that Moe isn’t just any three year old. He is delayed, difficult, “special.” As he gets older, it becomes more obvious, and, over a year into this, it still feels like a slap across the face every time.

Two weeks ago, we were invited to two parties on the same day. The first was a small birthday party for a three year old girl. It was just a backyard playdate, with a kiddie pool. Most of the parents could sit and chat, while keeping an eye on their little ones to make sure they were safe and playing nicely together. Moe loves water, so the pool was great fun for him. He’d play in the water for a while, but then he would get out and run the perimeter of the yard, including right through the rose bushes or along the side of the house where we couldn’t see him. By the time we left the party, he was scratched up from rose thorns, and we were worn out.

Off we went to party #2, a large going away party for friends. After averting Moe from grabbing a huge chunk of cake from the table, we directed him to the bounce house. He’s only recently figured out how to jump but now that he can, he loves it. He climbed right in and had a great time. Jeff and I could actually talk to some people while we kept one eye on him. It was how we imagined “normal” parents are at parties. That lasted about 15 minutes. Then Moe noticed the slide on the side of the bounce house. He wanted to climb up the slide part, rather than the stairs. But of course other kids wanted to come down, and Moe has no sense of danger or of being in the way. So we were back to having to be on top of him, redirecting him away from the slide over and over again. After we leave a party, I’m always left wondering why we bothered to go.

Even at home, things have gotten challenging. Moe is getting taller and stronger, able to climb and generally get into more trouble. We try to keep the house safe for him but he seems to always find something: splashing in the fish tank, turning on the bathroom sink if the door is left unlocked, or throwing the makeup out of my drawers. Today he took a glass of water off the kitchen table and threw it on the floor. In the back yard, he’s started eating mud – only occasionally but enough that we have to watch him vigilantly. When Moe is awake, there is very little down time and it is exhausting. I’m tired of having to tell him no all the time.

I want to take Moe places, but at the risk of sounding completely selfish, it just isn’t fun going out anymore. We do it so he can have some fun and learn socially acceptable behavior, and so we don’t lose all of our friends. But wherever we are, we are all about him. At home, I know that it is best to keep Moe engaged in safe, appropriate activities. But finding those activities is tough, especially with a 15 month old who does not like to share the spotlight.

Autism affects the whole family in so many ways I never could have predicted. Life is hard right now, and it is taking its toll on all of us.