October 31, 2010

My Finest Creations

I am not a crafty mom. Sometimes I wish I were, but I'm just not. I can cook, and I can bake. I have a pretty good eye for interior design but I'm not the person you turn to to make a new set of drapes. I think it probably saves me a lot of time.
On Friday, there was a Halloween parade at Moe's school. All the classes marched around one by one. This stuff kills me. I melt whenever Moe gets to participate in something so typical, even if he doesn't completely get it. And although most of the costumes (including Moe's) were of the store-bought variety, there were some really cool homemade ones, including two iPods, a Rubik's cube, and a Duracell battery (which at first glance, I thought was a pack of cigarettes). There were also some not so great hand made costumes, including a candy corn that looked quite unfortunately a little too much like a KKK hood. At least they tried.

For today's entry in the SITS Girls Halloween contest, I'm supposed to post about something I've made for Halloween. Looking through old photos, I couldn't find anything I've made for Halloween. Nothing. But I did make him:

And her:

With those faces, who needs a homemade costume?

Saturday, Sunday, and Monday of this week, I'll be writing Halloween inspired posts as part of the SITS Girls, sponsors of Bloggy Boot Camp, and a great resource for blogging tips and meeting other bloggers. They are currently running a contest for a Canon Rebel DSLR camera. Check it out!

October 30, 2010

The First Halloween

For Moe's first Halloween, he was a chili pepper. He was exactly 5 months old. He was a sweet and good natured baby who already slept through the night. We went to a mom's group Halloween party. It was our first mom's group family event. It was at the local community center and it was crowded and hot. Moe was miserable. It was fun seeing all the babies in costume but we were all fussy and mostly wanted to leave. We stayed for the parade and the group picture, then got the heck out of there. But not before getting this:

Totally worth it.

For the next three days, I'll be writing Halloween inspired posts as part of the SITS Girls, sponsors of Bloggy Boot Camp, and a great resource for blogging tips and meeting other bloggers. They are currently running a contest for a Canon Rebel DSLR camera. Check it out!

October 26, 2010

No Crystal Ball

If you read my post over at Silicon Valley Mamas, you'll know that I was on a quest to buy a LoveSac for Moe. Every time I say it, I can't really understand why you would name your store something that sounds...well, you know how it sounds. I did buy one, the KidSac (doesn't sound any better, does it?). Their packaging is covered with "lovesac.com is not a dirty website." It's all very tongue in cheek, including their slogan "It's not a damn bean bag." I'm all for creative marketing, but I think maybe a name change would do wonders for their image. But I digress. The point is, I went to the mall today.

As I sat down with Jelly for an early lunch, I looked around the food court and noticed a group of teenagers and young adults with various disabilities. I see similar groups at the mall often; local groups learning independent living skills. Their impairments are severe. I don't know if any have autism, and if so, these would be the ones considered on the "low functioning" end of the spectrum. Still, I couldn't help but imagine Moe in the future, learning to order french fries, pay and collect change. I know that for some people, being able to shop independently is a huge accomplishment, and I don't mean to take anything away from people who work really hard to get there. But I want more for Moe.

A little while later, a friend of mine posted a Facebook status update with a video of her 6 year old son, G. He went to her Mac and independently made a video of himself singing and signing a phonics alphabet. G has autism and two years ago he had almost no language. Today, he's making videos of himself on the computer. It was just what I needed to see. I can imagine a future where anything is possible.

I used to wish I had a crystal ball to know which way we were headed with Moe. When he was first diagnosed, I longed desperately for a brief glimpse into the future. Will he talk? Will he graduate from college? Get married? But of course there is no crystal ball, so I'm working hard to believe only the best. What would be the point in thinking otherwise? This is what it means to take things one day at a time. We will work hard but what will be, will be. Moe will be the best Moe he can be, and I will burst with pride at his every accomplishment.

October 25, 2010

Check out this Silicon Valley Mama

As you might know, I started writing for Silicon Valley Moms Blog just a few short months before the site, and its many sister sites around the country, shut down. (I believe these events were unrelated.) I really enjoyed writing for them, and am happy to report that I am now going to be writing for a new site, Silicon Valley Mamas. My first post, All Successful Meetings End With Doughnuts, went up today.

Head over and check it out!

October 22, 2010

Up and Down, Salty and Sweet

There are times for thinking, contemplating, and planning. There are times for reflection and healing. And then there are times for action, when we have to pull up our big girl panties and get to work. This has been one of those times.

Moe has been having some trouble with regulation. This means that he'll go from being really mellow one minute to running, climbing, and screeching the next. This may sound like your average 3 year old, but it is more extreme than that, and, when he gets really keyed up, he can't easily calm down and needs external help. The great thing is that Moe is often able to recognize when he needs to calm down and will independently go to his room, close his door and climb into his crib, his comfort place. Or he might rock on his tummy on the rocking chair or exercise ball. But during the times when he's really up, he can be quite a handful, climbing walls, splashing in whatever water he can find (including the dog dish and the water that comes out of the refrigerator). It may look like he's having fun, but being so over-stimulated can be quite uncomfortable for Moe, and hard for me to deal with.

We've been working with an occupational therapist who is helping us create a good sesory diet for Moe, especially on the weekends when he lacks the structure of the school day. A sensory diet just means that Moe gets a good range of sensory input throughout the day, to make sure all his system's needs are met. It also means we have to find the right type of activities for different parts of the day. The first step is to figure out the right "up-regulating" and "down-regulating" activies for Moe. For example, a warm bath is usually a nice, calming activity for kids. Not here. Water is very stimulating for Moe. He seeks out this type of input, but we don't want such an exciting activity before bed. So I've started giving Moe his bath when he gets home from school. This is the crux of our new plan: make sure we do stimulating activities in early the afternoon, and calming activities after dinner. Sounds obvious, no? But it is actually quite challenging to make sure Moe is getting what he needs, especially since we aren't always sure what that is. And there is a 17 month old hanging around with her own agenda.

Some of the aspects of Moe's sensory diet include:
  • water and other sensory play, like shaving cream or sand
  • variety of snack textures, including chewy and crunchy, and strong flavors like salt or lemon
  • heavy work, including jumping, pushing heavy things, climbing
  • swinging, rocking, bouncing
  • brushing techniques, deep pressure, joint compresions, "active" sitting (sitting on an uneven surface, like a ball or wedge)
We know that some of Moe's sleep issues stem from this same inability to easily self-soothe. He wakes up in the middle of the night, is tired and wants to sleep, but is unable to calm himself enough to do so. This can be really frustrating for Moe, and lead to some pretty rough nights. I hope that being more regulated during the day will help at night. Our other goal is to help Moe learn some self-soothing techniques so that when he does wake up during the night he can get himself settled down and return to sleep. This may mean opening up the crib tent so he has access to things in his room, but we're not there yet.

Another way to think about this is that Moe may have trouble calming his mind at night. He has a lot of input to during the day that he needs to process. Older children with autism have said that they feel like their minds are very busy, and they can't shut them off. I know I've felt that way if I've had caffeine too late in the day or am worried about something. One suggestion I really like is to try using music as a calmer. We've started doing music time before bed, and are looking for a kid's mp3 player that Moe can control himself. The idea is to load some calming music on the player and if Moe needs to settle down in the night, he can turn it on. We're also experimenting with some guided meditation for children. These are calming audio stories that help kids relax. These can be really useful for older kids who have trouble shutting down at night. I don't expect Moe to understand the stories now, but I do think the relaxing cadence could be calming for him.

As you can tell, it is a time of putting in the work and trying lots of things. I wish someone could just give me a plan and say "do this." But it doesn't work that way, so we're experimenting. Some days will be better than others, but hopefully we'll hit on the right combination of up and down, high and low, salty and sweet.

October 18, 2010

Too Cute

It's been a busy week, and I do plan to write about what we've been up to around here. For now, enjoy this, Moe's first official school photo. The aides at school said they worked really hard to make sure to get a good picture. I'd say they succeeded.

October 15, 2010

Inner Demons

Today's post is written by Cheryl D., mom to a beautiful six year old with Asperger's syndrome. She has been blogging about their experiences since February of this year and recently won Scholastic's "Parent and Child" magazine's top blog award for special needs issues. You can find her personal blog at Little Bit Quirky.

My daughter has been totally amazing for about 2 weeks. She was as perfectly-behaved as any child can be. All that ended yesterday when she had the worst tantrum ever. It may not have been the longest one, but it was the most intense. This time, I think the trigger was hunger. She hardly touched her lunch at camp, so all she ate while there was a small bag of crackers.

During the tantrum, she did and said some hurtful things to me. She said that she didn't like me and that she wished she were with her daddy. While the rational me knows that all this is normal during this type of episode, it was still hurtful because it plays with my own inner demons. You know, those thoughts in your head that tell you what a horrible mother you are.

Back in the day, mothers were actually told that their child was autistic because of their poor mothering skills. They failed to provide enough love and interaction during their baby's development thus causing the autism. We know now that is entirely wrong. However, I've heard many a mother of an autistic child complain that when their child tantrums in public, they're met with either judgmental looks or comments. People have actually gone up to them and said things like, "Can't you handle your child?" or "Let me buy her the damn candy bar, if it means that crying would stop!" One friend told me that, while her daughter was having a meltdown in the grocery store, a woman came up and commented that her daughter was a "drama queen." "No," she replied, "my daughter has autism!"

The professionals who provide the autism services can also make comments that make you feel like a less than stellar mother. When I first had my daughter assessed by the school district because I felt that something wasn't right with her, the psychologist actually told me that I had the best girl in the world and that I needed parenting classes. It wasn't until she observed my daughter at her preschool that she called me with an apology and told me I was right about my daughter's autism. Other providers have told me that they wonder if an autistic child is truly autistic or the product of bad parenting. I know my parenting is always being looked at and dissected into pieces.

My daughter used to tantrum every day when I picked her up from preschool because she'd rather stay at school than go home with me. That hurt me on two levels. First, I had to deal with the looks from the other moms who I felt were judging my mothering ability (whether they actually were is probably irrelevant--it's how I felt). Second, I felt inadequate as a mom because my daughter didn't run and give me hugs like the other kids did with their mothers. Instead, she tantrummed as soon as she saw me because she didn't want to go home with me. This hurt my self-esteem. A lot.

This feeds into our own feelings that we caused our child's autism due to our bad parenting. While most of us know, on a rational level, that this isn't the case, I think ALL mothers of autistic children feel this way at some point in time--or at least wonder about it. These are the inner demons that I fight with when my daughter is having a tantrum. It's one that I think all mother's of autistic children deal with.

I wish I could tell those demons to go away. That I'm a loving, caring mother who is doing the best she can. After my daughter's tantrum ended and she ate some food, she told me how sorry she was and how much she loves me. I have to hold on to these moments, and the moments that she's perfectly behaved. It's hard, but I have to tell those inner demons to take a hike!

October 14, 2010

I'm a Hopeful Parent

I'm over at Hopeful Parents today. Read my post, The Biggest Favor, and spend some time reading some of the other great pieces on that site. It's a great place to hear from parents with kids with all kinds of special needs.

October 11, 2010

One Final Mix Tape

This month, for From Left To Write, we read a memoir called The Kids Are All Right. This book is not the same as the movie that recently came out by the same name; rather, it is a memoir written by four siblings. In it, the siblings, in rotating chapters, tell the story of their early childhoods, through the deaths of both parents, and into their adult lives.

If you've read other posts for From Left To Write, you know that we don't do book reviews, but instead write posts inspired by the book we've read. This book inspired me over and over, touching on topics from parenting style to legal guardianship for your children, eighties music and fashion to the importance of family wherever you can find it. But ultimately, this book is about siblings, and this book reminded me over and over of my relationship with my brother. He was my one and only sibling, and he died in 2002.

I don't write about Billy very much on this blog, but he is in my thoughts daily. His absence in my life is painful, but his presence is powerful, especially in the little things. I remember once, as kids, talking about our favorite time. Mine was 11:11. He said his was 12:34. I smile whenever I catch "his time" on the clock.

My brother and I shared a sense of humor, and an unspoken connection. It has become family lore that we were unbeatable at Pictionary. We both went to Cal, and enjoyed many Berkeley dinners together on mom and dad, as the deal was that they would pay if we went out together (a tradition I hope to pass along to my kids someday). And we shared similar taste in music.

The Kids Are All Right is filled with mentions of the mix tapes they made. If you visit the incredibly cool website for the book, you can watch some iconic seventies and eighties music videos and hear the iTunes playlist they set up. There, the authors comment, "While writing this memoir, we realized just how important music has been in our lives – so many of our memories involved specific songs."

My brother and I were almost four years apart, but despite our age difference we got along really well, especially as we got older. One thing we shared in common was our music. Our tastes were slightly different. My favorites were Depeche Mode, The Smiths, and The Cure. He loved the Red Hot Chili Peppers, Rage Against the Machine, and Smashing Pumpkins. But we had a lot of overlap, and there was a lot of music that we listened to together. Some of our favorites were James, Oingo Boingo and Barenaked Ladies. Like the siblings in the book, we made mix tapes for each other, or copied CDs to tape whenever one of us bought something we thought the other would appreciate.

After my brother passed away, I made him one final "mix tape." I actually bought a CD burner so I could make this for the funeral. We brought it and played it as people were arriving for the service. Making the CD was something to do to get through the first few days of grief, but I know he would have appreciated the mix.

The photo above is me, my brother and my grandfather, Pop Pop Dave, on a Southern California beach around 1979-80.

I was given the book, The Kids Are All Right, by the publisher free of charge and with no obligation. The opinions expressed here are my own.

October 7, 2010

A little progress goes a long way

Ahhh...quiet. There hasn't been enough of that this week. If you read my last post, or have followed my blog for a while, you know that we've been having some pretty serious sleep issues for about the past year. I won't bore you with the details of the rest of this week. Suffice it to say that we've been experimenting and have had some successes and some failures. Last night, Moe got to sleep on his own without melatonin (success). Tonight, we ate our spaghetti to Moe's screaming in the background (failure).

On top of that, Jelly has been sick with a fever, runny nose, the works. And she only wants mommy. When Jeff even tries to go near her, she screams "no!" (her new favorite word) and clings harder to me. It was cute once.... Once.

Despite all of that, Moe had an interesting day at school yesterday. When I picked him up, his teacher, the Magnificent Mrs M, came running over to me to tell me how talkative Moe was! She put a list in his daily communication book of everything he said that day: stamp, morning, four, please, open please, more, more pear, and mad.

These were pretty interesting to me for a few reasons.
  • "Morning" was in response to Mrs M saying "Good morning, Moe." Socially appropriate!
  • "Open please" and "More pear" are two word phrases. Haven't heard those before!
  • He said "mad" when he was tired of the aide, Super K, working with him at snack. He expressed an emotion! (I haven't mentioned Super K before, but she's great and I'm sure I'll be mentioning her again.)
And here is the coolest thing of all. Moe went up to another kid in his class, grabbed his hands and tried to play ring around the rosie with him. This is amazing at so many levels. He noticed a kid. He decided he wanted to play something. He initiated contact with the kid. It's just so interactive and new.

Of course, I'm so proud, but I'm also trying to figure out what made that day so great and how I can recreate it. The rest of the day, Moe continued to be happy and well regulated, though less chatty than he was at school. The only thing I know is that this fabulous day came after Moe had a full night's sleep, which is something I seem to have very little control over. I don't think this is a coincidence.

It has been a tough week, but this note was just what I needed to make it through the rest of the week. A little progress goes a long way.

October 4, 2010

Trying not to go there

Moe's sleep issues seem to have returned as quickly as they left. I should rephrase that - the issues never really left, but with the start of the school year, Moe has been more tired and sleeping through the night more consistently. But over the last week or so, Moe has been waking up again in the middle of the night. I'm sure it is related to his other regulation issues which have also been worse lately.

This time is a little different from last time. He used to wake up giddy, giggling and jumping. He was a little manic, but didn't seem unhappy. These past few times Moe has been screaming. He's inconsolable, crying and pushing us away. It is painful to watch, but there seems to be very little we can do to help him in this state. A couple times, we've brought him to the living room to try to settle him down and as soon as we're not holding him, he runs as fast as he can back to his crib. I've started to wonder if he's having night terrors. Whatever the case, he's clearly exhausted and quite upset that he can't get back to sleep. The whole thing usually lasts about an hour before he's calm enough to fall back asleep.

Last night was especially bad because Jelly has been sick with a cold and waking up more easily. So when Moe finally settled down, Jelly woke up. And when she got back down, Moe was up again, this time back to his old laughing and jumping tricks. After the chaos died down, I sat down on the couch and had a little bit of a meltdown myself. I try not to let myself indulge in too much self-pity, especially when sleep-deprived, but last night was really hard. These night wakings, on top of the regulation issues Moe has started having both at home and at school, like needing to chew all the time, rocking on the rocking chair, and spinning in circles around the rug, are starting to get me pretty freaked out.

At one point last night, Jeff had Moe in his lap and we were trying to calm him with some deep pressure. Moe was kicking and squirming so hard that he head-butted me. I thought he busted my lip (he didn't). And that is when I started to wonder: If this is what Moe can be like when he's three, what happens when he's 5? Or 7, or 13?  I try really hard not to "go there" and I didn't say anything to Jeff at the time, because it bothers him when I travel down that path. Things could be much, much better by then, or they could be worse. Nobody knows.

In the meantime, I've started looking into getting some additional in-home behavior and occupational therapy for Moe and to help me create some more structure and predictability at home.

If you're local to the San Jose area and have a great behaviorist, I'd love a referral! Feel free to contact me at wantapeanutblog[at]gmail[dot com], or DM me on Twitter @wantapeanut

October 1, 2010

An hour of utter chaos

When I need suggestions from friends, I go to Facebook. It is a great way to ask a question to a lot of people, most of whom know me fairly well, all at once. This isn't always a good strategy. When searching for hobby suggestions, both "vodka" and "sniper" came up as popular suggestions. But on Wednesday, I posted the following question:

What do you do to get through the post-dinner, but before dad gets home crazies?

This hour of the day, from about 5:30-6:30pm is really challenging for me. The kids are getting tired from the long day, I'm tired, and we're all (including the dog) at that point where slap happy could turn into a meltdown at any moment. This is the time of day when Moe, quite literally, starts climbing the walls.

I will often put the kids in the stroller and take them and the dog for a walk. But this week, it was too hot:

I got some good suggestions. My favorites were the ones reminding me to let the kids get messy: shaving cream play, pudding play, sand & water play. These are all activities we've done, of course, but a great reminder that Moe probably could use some sensory input around that time.

So yesterday, I was armed and ready. Moe had woken up pretty early so I knew it would be a tough evening. Sure enough, at about a quarter to six, he starts getting pretty manic. Giggling, running up and down the halls, chewing everything. I first tried to do some jumping with him on the exercise ball. This worked great, but of course Jelly wanted a turn. If I put her on the ball, Moe runs away. If I don't, she cries. So I decide it's time to go in the backyard.


As soon as I say the word "outside," the dog goes nuts, running, licking me, barking in my ear (and this is her on Prozac). With all of the chaos, I can't get Moe's shoes on, so I just let him run. I try to get him in the swing, usally a favorite and great calming tool, but he doesn't want it. So I start to fill up the water table.

While I'm getting the hose out, Moe darts over to Berkeley's potty area along the side of the house - the one place in the backyard he's not supposed to go. He's barefoot. I run over, scoop him up, and bring him to the water table.

He then starts trying to drink the water out of the table. "Not for mouth!" I yell. So Moe runs. But as he does, he grabs a handful of sand and puts it in his mouth. Ack! Wait, where's Jelly? I do a quick scan. She's safely playing in the playhouse, but, shit! (literally) Moe's back in the dog poop. Once again I grab him and take him out. At some point, I call Jeff and ask him to please get home as soon as possible. Now the dog starts barking and scratching at the neighbor's dog on the other side of the fence. As I'm dealing with her, Moe runs back to the water table, which he proceeds to climb into. As I take him down, he falls on the grass, which he tries to bite, and then starts grinding his teeth. As I run in the house to get a chewie, Moe darts back to the poo area, which this time, he steps in.

So now, I somehow have to get both kids stripped down, back inside, and in the bathtub (one at a time because Moe does not like it when Jelly is in his bath). By the time bath time was over, I was drenched, physically and emotionally. As I write this story, it sounds funny, but let me assure you, it was not. Moe was completely manic. He could not stop running, giggling, squealing. Usually he can calm himself in some way, by rocking on a chair or going into his crib, or I can calm him with squeezes or back rubs, but he was truly out of control. I know the idea is to avoid letting him get into this state in the first place, but that isn't always possible and I was actually a little scared. Right now, I could still put Moe in his crib as a safe place if I needed it, but happens when he's 5, or 7, or 13?

Around the time Jeff got home, Moe was sitting quietly reading a book. Of course.


Related Posts with Thumbnails