December 31, 2010

Solving Problems...And My First Giveaway

This year has been a lot about problem solving. Moe is only 3 1/2 so we're still pretty new at understanding his particular brand of autism. I'm looking forward to spending some time reading all of my past blog posts and summarizing some of the problems we've encountered and where we've succeeded or failed. I think it will help us have a more manageable 2011.

But before I do that, I want to write about one more problem we had and how we've remedied it. Moe has always been a pretty good eater, but over the past few months, we couldn't get him to sit still at the table. He outgrew one booster seat, and we got him a really comfy one, but he still never seemed quite comfortable. He was always squirming or sitting sideways. We figured out that the main issue is that his feet dangle. As someone who is quite vertically challenged myself, I understand that this is uncomfortable. But how do you fix this on a 3 year old?

We decided to get a Tripp Trapp chair. I've always like the aesthetic of the chair. I love child-friendly furniture that doesn't look like baby furniture but wasn't sure we needed it. It is just expensive enough that I had to really justify it. But the great thing about this chair is that both the seat and footrest are height adjustable, so it can continue to be an ergonomically correct chair for Moe. And if he gets tired of it someday, it also works as a chair for adults, so I can reclaim it for a desk chair. I'm picturing it at the little computer nook in my fancy new kitchen in my big new house. (That last part may be pure fantasy, but a girl can dream.)

We got it in the walnut finish, with the Fresh Stripe cushion, so it matches our decor perfectly.My only complaint is that I wish the cushion were an oil cloth or more wipe-able fabric. But it is machine washable. I love this chair so much, I got a second one for Jelly. No more high chairs - hooray!

We later mentioned this to our occupational therapist, who said that when a kid's feet are dangling they are focused on that and not on whatever they are supposed to be doing, whether it is paying attention in class or eating a snack. I'm not sure why we didn't just ask her in the first place. But we felt pretty proud of ourselves for analyzing the problem, brainstorming solutions and finding a really great answer.

And now for the best part! If you want a Tripp Trapp chair, or any other modern furniture or accessories for your kids (or yourself), I'm giving away $35 to AllModern. If you'd rather buy something for yourself, you can use the card at any CSN store! Just leave a comment below about a great solution you've discovered for your child, or really anything you feel like saying.

Giveaway open through Sunday, January 2, 2010. Winner will be announced on Monday, January 3.

The winner will be given a promo code worth $35 for use at any CSN Store. Cannot be used toward shipping. I was not given the Tripp Trapp chair, nor was I compensated in any way for this review. 

December 30, 2010

My Gift to You

I love modern furniture. I also love shoes, jewelry and kitchen gadgets, but did I get any of those things for Hanukkah? Nope. How about you? I mean I love my cookbook (I asked for it), but there were one or two things on my list that didn't show up under the tree. Maybe that's because we don't have a tree in our house. I'll have to investigate that theory.

In the meantime, I have something for you. I don't do a lot of reviews or giveaways on my blog, but when I was offered $35 to giveaway to my readers, I thought it would be just plain irresponsible to say no. Come back tomorrow for a chance to win a gift card to CSN stores. You can use it at any one of their 200+ stores.

I've never done a giveaway before so I'm excited! Tell your friends!

December 29, 2010

Guest Post: Managing Stress in the New Year

Christmas is over, and unless you are trying to travel to or from the blizzardy East Coast, the stress of the holidays has mostly passed. We're just a few days short of New Year's, and that means a return to our regular routines, including school, work, and the day to day business of running our lives. If you have a special needs child, the added stress of the holidays may be on its way out, but by no means will stress be absent from our lives.

Suzy, editor of SureBaby, a site for Moms and Moms-to-Be, has written the following tips for managing stress. These tips are good for all parents, but as parents of children with special needs, we need to reming ourselves to pay special attention to managing our stress levels. I know I won't be able to live a stress-free life ever any time soon, but I have seen how the stress of having a child with autism has begun affecting me not just emotionally but physically as well.

Parenting Tips for Managing Stress
How to relax when you have a child with special needs

Caring for children with special needs requires a lot of attention and energy. As a parent, you do your best to be always patient and loving, but caring for a special needs child can be time-consuming and stressful. In order to provide the best child health care you can, you need to make sure you take care of yourself. Follow these parenting tips to manage your stress level and be as strong as you can.

Take a Break
When was the last time you did something for yourself? In order to manage your stress, you need to have "me" time. If you're constantly focusing on someone else, you're going to become physically and mentally drained. Take small breaks at first to ease yourself into the habit.

Small breaks during the day are good, but you also need to make time to relax for longer periods. Ask someone you trust, like a family member, to take care of your child while you go shopping or to a movie with your partner. If your child requires a lot of treatment and care, there are services available that can take over while you get the relaxation you need. Make sure you do something you enjoy. Some people need to get out of the house in order to let go, while others prefer to read.

Accept Your Limits
As a parent of a child with special needs, you always want to do more. Sometimes you may think you don't do enough, or feel like everything needs to get done in one day. However, you can only do so much, so try to cut yourself some slack. At the end of the day, don't think of all the things you didn't do. Give yourself permission to wind down and think of the things you did accomplish. Thinking positively will help you have a positive outlook for tomorrow.

Even if you can only fit in a 20-minute walk, exercise allows you to clear your mind and produces endorphins, which makes you feel happy. Exercise will not only keep you in better physical shape, it can also calm your nerves and relax you mentally.

Get Support
Support can come in many forms: friends, family, support groups, doctors. Being around others who understand your circumstances can help reduce your stress; knowing others have the same struggles that you do and learning how they deal with them can be comforting. But there are also benefits to leaning on those you love and trust. Feeling a connection with those you care about and having adult-to-adult conversations will help manage your stress.

Remember, your child isn't the only one affected by their special needs. Don't forget that you are entitled to, and require, a separate life (even if it's for only 20 minutes at a time). Make the time and effort to reduce your stress, and you'll be a better parent, spouse and friend.

What do you think of these tips? How do you manage stress?
You can follow SureBaby on twitter.

December 27, 2010

And the nominees are...

Yesterday, I received a surprise comment on my blog. Mamafog at Out of the Fog nominated me for the Stylish Blogger award. I was super excited because I hadn't heard from mamafog before and I had no idea she thought I was a) stylish or b) worthy of an award. Like me, she has a 3 year old, diagnosed around age 2, so we're right around the same place on our autism trek. I hope you'll all pay her a visit.
As part of accepting this award I have to tell you 7 things about myself that you wouldn't otherwise know. If you know me in real life, you may know some of these, but since a lot of you only know me from this blog, I'll include them anyway.
  1. I love weddings. Not the everlasting love, 'til death, mushy parts, but the dress, cake, flowers, decor, invitations, signature cocktails part. I would love to be a wedding planner. I would only do very hip, stylish weddings and would someday get my own show on HGTV.
  2. I hate mayonnaise, Cheryl Crow, and the word "moist."
  3. My favorite band of all time is Depeche Mode. I've seen them in concert at least 10 times, but probably more.
  4. I was in some commercials when I was a kid. The best one was for Strawberry Shortcake dolls. I was so excited to find one of them on YouTube! I'm the girl on the left.
  5. My favorite movie is The Princess Bride, my favorite book is A Prayer for Owen Meany, and my favorite authors are Banana Yoshimoto and Jose Saramago.
  6. My friend once threw me a surprise party at the Little Caesar's inside the Super K-mart outside of New Haven CT. He set up a scavenger hunt that included things like "something in the automotive aisle that begins with the letter M." I was timed and had to run around the store to retrieve the items.
  7. I studied martial arts for many years. Most of that time was spent on Chen style tai chi. I can kick your ass very slowly.
This is one of those pay-it-forward type awards, where I will now nominate three other blogs to get the award. There's no real prize, just the warm fuzzy feeling you get knowing that someone liked your work enough to recognize you, and a cool button to put on your blog. Though I suppose there's nothing stopping you from just copying the button and adding it to your blog anyway. But we'll know. And god is watching.

Before I nominate, I want to say that you should not feel any pressure to carry this on. There will be no chain-letter type punishment if you don't. However, if you want to accept and play along, that's great too.
  1.  I'm Just That Way and That's Just Me - Because Little Bird is such a beautiful little girl, and her mama is awesome too.
  2. Everybody's Boy - One of the first autism blogs I found with great writing and heartfelt content. If you aren't reading this blog, you should be.
  3. Big Daddy Autism - Nothing screams style like a Big Daddy T with the sleeves cut off. Add your blog's button, and you'll be the talk of your next blog conference!

December 26, 2010

A Christmas...Pretty Much Like Last Year

As I thought about our day yesterday, both Christmas and Jeff's birthday, and I prepared to write this post, I took a look at last year's post, Happy Merry Chrismukkah Day. What I discovered is that this year's December 25 looked an awful lot like last year's. This was not because of any great family traditions we're trying to build or because it was such an amazing day we wanted to do it the same way all over again.

Moe has not progressed as much as I had hoped he would in the year, and is in many ways the same kid, still not communicating much, still chewing, still sensory seeking with extreme highs and lows. Jelly has, of course, changed tremendously, as babies are wont to do when they go from 8 months to 20 months old. But despite that she is now walking and talking, she is still basically a baby and not quite on to the whole Christmas thing.

Our day is born out of necessity. We've spent the last two years quietly at home, where Moe is comfortable, and where Jeff and I wouldn't have the stress of constantly following him around, not able to enjoy wherever we were anyway. And besides, it's Jeff's birthday and clearly anywhere we went, everyone else would be celebrating someone else's birthday. This way we can make the day all about Jeff.

I started the day with chocolate croissants. You just take Pillbury crescent rolls, put a handful of chocolate chips in them, and roll them back up before baking them. I had been looking for an excuse to make these, and this seemed like the perfect day to try. They hardly compared with my favorite pains au chocolat from Fleur de Cocoa, but I still got to have chocolate for breakfast so I'm not complaining.

Last year I made a key lime cake. This year, I made a key lime pie.


The pie? Much easier. But I liked the cake better.

Last year, we got to play outside. This year, it was raining, which was tough for the kids. But Moe did get to play with some whipped cream. He’d clap his hands and it would splatter everywhere, which was the funniest thing ever.

Jelly kept saying “bye bye!” She’d just grab her purse, and put the baby in the stroller as if she had someplace very important to be. With her, who knows? Maybe she did.

Around this time I realized I didn't have the chicken broth I needed to make Jeff's special birthday dinner. So I got in the car. Five stores later, I found some.

The kids eventually went to bed, and I got to open this:

Jeff is still recovering from his cold and didn’t feel like having wine, but I was forced to open it to make the risotto, and then it was already open, so it would be silly not to have a glass (or two), right? It was delicious and went perfectly with the mushroom risotto, which is also what I made last year. Jeff gets to pick what he wants for dinner on his birthday, and I make damn good risotto. The secret is lots of butter and parmesan cheese.

I hope next year, we’ll see some more improvement with Moe, and I'm sure I'll be writing more about this as 2011 approaches. I’d like to be able to be a little more social around the holidays, and feel able to attend some of the open houses and get-togethers we have to decline. But holidays are at their core about family, and I got to spend my day with him…

and her…

and this guy…

So it was a pretty good day.

December 24, 2010

Feeling Groovy

All four of us have been down with terrible colds. It's been, literally, weeks since we've all been feeling better. Yesterday was the first time I even remotely felt like drinking coffee, so you know it was serious. Once I feel like having a glass of wine again, then I'll know I'm truly well again.
When you've been sick for a while, all stuffed up with no energy at all, there's that one day that you wake up one day and feel almost yourself again. And on that day, you are so thankful for being able to breathe again, and you have even a little bit of energy, that you feel absolutely amazing. You are thankful to be alive! The world is beautiful and the sun is shining! What were you complaining about all that time?

Well, I think Moe had that day yesterday. He was in such a good mood, and his only grumpiness at all was when I put him in the bath with his sister and he did not want her there, and who can blame a boy for wanting his bath to himself? But otherwise, he was engaged and actually even initiated some requests from me ("mands" for those of you hip with the ABA lingo). He tried to talk a little and signed even more, but mostly he was just happy to be - singing, hanging out with us and not hiding in his dark room. And I, also finally starting to feel better, was overjoyed. I remembered that my boy is sometimes the happiest, lovliest, sweetest boy and that even though he doesn't talk, simple exudes his adorableness (adorability?) just by being himself.

As you know, Moe loves music and especially loves to sing. He's been enjoying watching The Sing Off, and although I have to skip the talking parts, which means I miss my hearing my nerd-crush Ben Folds, Moe seems to really love the singing. Last night, before getting ready for bed, Jeff found some YouTube videos of Bobby McFerrin. Moe loved it! He took it all in, giggling at the upbeat, funnier songs, quieting for the more serious ones.

It was perfect.

December 22, 2010

Too Much Information

And I'm not talking about the good kind of TMI where you get to hear some juicy secret of mine. You see, I've been home a lot lately. I mean a lot. We've all been sick and that means I've had a lot of time to surf the internet. I've also been writing a little for Technorati, so I've been researching autism and paying attention to autism news a lot more, and there's just so much of it.

Just this week, I've learned that autism may be caused by: mitochondrial dysfunction, living too close to freeways, and living near a cement plant. In the past, I've also read that autism is caused by: heredity, other genetic mutations, vaccines, bad parenting, heavy metals in the bloodstream, premature birth, and allergies. The list goes on. (Read this great summary of the flaws in some of the recent research.)

Within autism, there are so many diagnoses and co-morbid conditions: high functioning to severe, Asperger's, apraxia, sensory processing disorder, hypotonia, hyperlexia, and echolalia to name a few.

And then there are the plethora of therapies out there, including but not limited to: ABA, Floortime, SonRise, Pivotal Response Training, Relationship Development Intervention, occupational therapy, speech and language therapy, sensory integration therapy, music therapy, recreation therapy, riding horses, surfing, gluten free casein free diets, chelation, B12 shots, other vitamin and mineral supplements, essential fatty acids, fish oil supplements, gut treatments including probiotics and antifungals, and hyperbaric oxygen therapy.

It is enough to make a person crazy.

Our approach has always been:
  • Let the science guide us.
  • Go to trusted professionals for guidance.
  • Do no harm.
  • Do what works for our family.
And because of that, we've gone what might be considered a fairly conservative route for Moe's autism therapies. We started with individual ABA, speech therapy and occupational therapy, and gradually added a group component. Now Moe is in our school's program (which is excellent), a small class based on the Competent Learner Model, but taking cues from traditional ABA and developmentally-based techniques. He gets group OT and both group and individual speech at school.

We recently added some music therapy, which is also a lot like ABA but using music (instruments, musically based games, singing, etc.). This is not "traditional" but because Moe is so musically inclined, we thought at the very least it could be fun for him. Our music therapist also teaches older spectrum kids to play instruments so my hope is we are building a basis for that in the future as well.

We've recently decided to add in some more OT. It's not going to be strictly sensory integration therapy but we will focus a lot on Moe's sensory-seeking needs. He has a lot of them (chewing, spinning, swinging, etc.). We've had to delay starting because of all our illnesses but I hope we can give Moe some of that extra input he needs to help keep himself more regulated and focused throughout the day.

I am not advocating this approach for everyone, but it is what we can handle. I do think it makes a lot of sense to start small and add in as you go, both in terms of keeping some sanity and for tracking progress. But every day I question whether we're doing the right things, too much or too little. Jeff seems more confident in our approach, and that's good, because I'm sure I'd be all over the map if these decisions were mine alone.

Autism may be a puzzle, but its really the maze of options for parents that is so confounding.

December 20, 2010

'Tis The Season

Today's post is over at Silicon Valley Mamas. Click to read 'Tis The Season, and learn what I'm really grateful for this season.

December 18, 2010

Small Things Saturday: The Elf on the Wall

I've been sick for a few days. So has the rest of the family. Moe is a little ahead of us, getting this nasty virus first but also getting better first. Thankfully, he was back at school today, the last day before the two week winter break. He came home with a bag full of art projects, including this Moe elf. Moe has the best teachers, who do these little projects and send them home. I know this one must have made them laugh out loud, and I chuckle every time I see it.

December 17, 2010

The Faint Light At the End of the Tunnel

Originally written for Hopeful Parents, where I contribute on the 14th of every month.

We’ve been having a tough time at home. I’ve been hearing this a lot from parents lately, most attributing it to the hectic times of the holidays, with schedules interrupted, different people coming and going, and busy places to visit. My son’s teacher said that this time of year is always challenging because the kids have been in school a long time without any significant breaks.

Whatever the reason, my son Moe, has been having a lot more temper tantrums and meltdowns. He’s become sometimes sensitive to light, insisting on playing alone in his room with the door closed and lights off, piling his toys and books into his crib and burying himself under the covers. When he’s not in his boy cave (the three year old equivalent to a man cave), he’s over stimulated, chewing everything, spinning on a chair, splashing wildly in the bath. I spend a lot of time managing the extremes and trying to keep some level of calm in our house.

I am physically and emotionally exhausted. I feel like I did when I had a newborn in the house, tired, forgetful and distracted. When Moe was first born, the one thought that got me through that overwhelming time was “it will get easier.” I knew that I had to get through it, survive for a few months, but I was assured there would be a time when things would get easier. And sure enough, those feedings stretched out, Moe started sleeping through the night, and things did get easier.

But it was still hard. Everything was more challenging, even just getting in the car to go to the grocery store. Will he fall asleep in the car, jeopardizing an afternoon nap? Did he eat enough at the last feeding so I won't have to find a spot to nurse? Do I have everything I need in the diaper bag? But time passed, and once again, things did get easier. Then I had a second child and it started all over again. Now I had sleepless nights and a toddler. I had to learn all over again how to accomplish these same simple tasks, with new challenges like getting two kids in and out of the car, one of whom was (and still is) a toddler who would dash across a parking lot if I wasn’t holding securely to his hand. And then Moe wasn't talking, and there were doctor's appointments and assessments, and finally an autism diagnosis. I remembered how hard I thought it was when I had only one happy little baby. And I realized, that was the easy time. And it's over.

I recently wrote a post about a particularly rough day. Fellow bloggers and parents assured me that things will get better. I survive each day with this in mind. I tell myself that we will someday look back at these early years as the most challenging times of our lives. We just have to slog through it. But now I’m not sure. What if Moe’s behaviors don’t improve but he just gets bigger? What if this is the easy time?

I wish I could conclude on an optimistic note. I want to say that if this is the easy time, I will learn to enjoy it now, and then, if things do get better (which they probably will), I’ll be pleasantly surprised. But if things don’t improve, I’ve learned how to enjoy the moment we’re in. But honestly, I’m not sure how to do that. So right now, I’m just trying to survive, a day or even an hour at a time, believing that there is a light at the end of the tunnel, however faint.

December 14, 2010

Study of Sign Language on the Rise

Article first published as Study of Sign Lanugage on the Rise in U.S. Colleges on Technorati.

Thinking of taking up a foreign language? Or maybe you've always wanted to refresh your high school Spanish or French? Why not try sign language instead?

A recent article in USA Today reports that American Sign Language (ASL) is now the fourth most studied foreign language in the United States. Enrollment in college ASL classes is up 16 percent over the last three years, according to a survey by the Modern Language Association. Spanish and French are in the lead, with German beating ASL by just 0.3 percent

Although some in the deaf and hard of hearing communities may take issue with the term "foreign" when referring to ASL (as the language does not come from any foreign country), it is certainly a language in its own right. ASL is not simply a translation of English into a gestural language. ASL has a specific syntax, with regional variations and slang. And, like other languages, ASL evolves with time especially to incorporate signs for new technologies.

It makes sense that languages that are seen to be the most useful, especially in the job market, would be the most commonly studied. In the United States, about 12 percent of the population speaks Spanish, and it is the most common foreign language spoken here. It stands to reason that a background in Spanish would be useful. The language classes with the highest increase in enrollment is Arabic, up 46 Percent. Again, this makes sense given the importance of the Middle East in today's global and political climates. So why ASL?

ASL is claimed by many to be the fourth most common language used in the United States, although Gallaudet University, a liberal arts college for the deaf, is unable to verify this claim. It seems unlikely that many are choosing to study ASL with the goal of becoming a sign language interpreter, although this is certainly an in-demand position. Other growing professions, however, including Special Education Teacher and Speech and Language Pathologist, incorporate the use of sign language into their work. In fact, sign language has been shown to be a helpful method of communication for special needs children who may have trouble speaking, including those with autism, cerebral palsy and Down's syndrome. In addition, it is becoming quite popular to teach hearing babies to sign, as they are able to use gestures to communicate before they can form words.

In my house, signing is a part of every day life. I began signing with my son when he was just a baby, though he didn't pick up much. He wasn't speaking either, and when he was diagnosed with autism, I redoubled my efforts, studying ASL and become a sign language instructor for children. My daughter, born just before my son's diagnosis, has been around sign language since she was born. Her first sign was at 8 months. She is now 19 months old and speaks and signs more than 100 words. She is able to communicate her needs even when she cannot clearly articulate a word. And my son now has a few signs that allow him to communicate basic needs like "water," "more" and "all done." But since he cannot speak, those signs are invaluable.

December 13, 2010

Twelve Days

The countdown has begun: 12 days.

A few days ago I breathed a sigh of relief. Hanukkah was over, all of the presents unwrapped. My holiday cards arrived, and are now stuffed, stamped and sealed. All the rest of you suckers could brave the malls to get your last minute shopping done - I was done! And then I remembered. I still don't have my husband's birthday present.

Yes, my friends, my husband's birthday is December 25, Christmas Day. I'm pretty sure he married me because I'm Jewish and his birthday wouldn't be competing with Jesus's big day in my house. Sure, we have a few gifts for the kids to open from Jeff's parents, but mostly, that day is all about Jeff. We'll spend the day at home. (Where would we go? It's Christmas.) I'll bake. I usually make a cheesecake, although last year I made a really delicious key lime cake. This year, he has requested key lime pie.

But I still haven't figured out what I'm going to get him for his birthday! I had an awesome idea, a ukulele, but since it was the only thing I had bought, I panicked and gave it to him for Hanukkah. There are a ton of things I want, but I can't seem to figure out how to turn size 5 grey cardy UGG boots into a gift for him. So now, I'm stumped. I had thought about braving the mall today, but got caught up in making the gift labels for Moe's teacher's holiday gifts, and then it was too lose to Jelly's nap time.

I'm desperate people, help me!

December 11, 2010

Small Things Saturday: Those Curls!

Have you ever seen anything like these? I never in my life thought I'd have a curly haired kid. These curls usually flatten out a little after a night of sleep, and they get very messy. But shortly after a bath, they are absolutely perfect. And I love every one of them.

December 10, 2010

Cold Hands, Warm Heart

Today on Facebook, a friend of mine posted this:
I really get a huge burst of satisfaction when I see a slow-flowing storm drain, and I clear the leaves away. The rushing water, the noise, the cold wet fingers, the diminishing lake in the street...all so fantastic. I wish all problems were that easy to solve.
So simple, so poetic.

And yet such a perfect analogy for how I approach Moe's autism. Thoughts and ideas are flowing in Moe's head, rushing around in a powerful eddy, but they aren't always able to flow in the right direction. It seems as if something is clogging up the works, slowing things down. But I know a brilliant little boy is in there, just waiting to show the world everything he knows.

So we're doing the work, clearing the leaves. Our hands are cold, but our hearts are warm.

December 8, 2010

Science, Anyone?

We're about to start participation in a study that includes an MRI component. Researchers at Stanford are trying to determine if they can tell if a certain type of behavioral therapy will be effective for a given child by studying their brain structures. Wouldn't it be nice to know in advance if the therapy approach you're taking has a good chance of being successful?

If you're interested in some of the scientific research surrounding autism, including what's being done with MRI and brain imaging, check out these articles I've written recently at Technorati:

Brain Imaging May Provide Better Autism Screening
Scientists are using MRI to diagnose autism with astounding accuracy.

Data Released From National Database for Autism Research
Will the collaboration of scientific data help us get closer to understanding the causes of autism?

Study Claims Children Can Recover From Autism
Study claims children recover from autism with behavioral therapy, but there is danger in thinking we have found a cure.

A Day in the Life

Tuesday, December 7, 2010

6:50am  Monday I woke Moe to go to school and discovered he had a fever. I'm keeping him home today so of course he wakes up early. At least he's in a good mood.

6:51am  Jelly walks in. Moe starts screaming.

7:15 am Moe is still screaming and crying. I'm trying to comfort Moe. Jelly starts screaming. Both kids are crying in my ear. Where's Jeff

7:20 Jeff walks in, dressed for the gym and ready to go. He takes a screaming Jelly from my arms and brings her to the kitchen.

7:40 Moe is still upset. Maybe some breakfast will help. He sits at the table but doesn't want to eat or drink anything. Jelly refuses to get in her high chair even though she's yelling "cereal, cereal!" So I strap her into a booster seat. She starts screaming and crying. Jeff has to leave.

8:00 Jelly wants "down!" Then she wants her milk even though the rule is she has to drink it at the table. I cave and give her the milk. I cannot handle both kids screaming for one minute longer.

8:15 I sit with Moe on the couch. Eventually I turn on the TV and Curious George is on. Moe quiets down, snuggled up against me with his head pushed into my side. If I move he gets upset so I stay still. It's kind of nice to know I can still comfort him. The dog scratches to go out. I do not move.

8:30  Where's Jelly? I'm sure she's fine.

9:00am Moe figures out a new game where he runs around the spinning chair a few times to pick up speed then lifts his feet and spins around. It can't be good for the vintage 1970s chair, but I let him do it.This chair used to be my pride and joy. Now it is missing buttons and has bite marks on it. I'm just happy he's not crying.

9:15am Moe is still calm, now sitting on the chair. Berkeley, our dog, barks because a garbage truck went by. Moe loses it again.

...Time Passes...

The day goes on. The dog barks every time someone is calm or napping. I'm imagining just opening the door and letting her run away, except she wouldn't leave and would just scratch up the outside of our newly painted front door until I let her in. Suddenly, there's a knock at the door. It's FedEx. The dog barks.

12:30 Hooray! It's the new chair I bought Jelly to match Moe's. Now everyone can sit at the table together. I think I'll just put it together now.

12:40 Why is there a hole in the box? $%#$!@!!! Hardware is missing. I have 6/10 screws and 3/6 washers. Dammit.

12:50 Chat with Amazon guy who tells me that he can't just send a new one. I have to send this one back and they'll refund it, then I can buy another one. Arrgh.

...More Time Passes....

The rest of the day is a blur with fun art activities, puzzles and games. Not.
Jelly naps. We watch more TV than we should. Moe listens to music in his room. I surf the Internet. We're bored and grumpy.

3:15 Bath time for Moe. Jelly chants "Brush teeth! Brush teeth!" and chews on her toothbrush for 15 minutes. Good oral hygiene is very important to her.

4:00 Warm and dry. Let's have a snack. I pinch my finger in the clip on Jelly's booster seat. #$!@@#!! No one eats much but Moe is comfortably sitting on his new Bitty Bottoms seat cushion. This is the longest he's stayed sitting in a while. He's flipping through his new Animal Baby magazine and seems content.

5:00 Dinner time. I over-microwave their Trader Joe's mini pizzas. Jelly won't touch hers and Moe eats 3 bites. The kids have grapes and milk for dinner. But they're happy. Moe goes back to flipping through his magazine.

5:45 We all go to Moe's room. He climbs into his crib and I come over to see him. He pushes me away with his foot. I fake getting pushed across the room and he thinks it's hilarious. We do it over and over. Hooray! An actual social game. Jelly thinks it's pretty funny too.

6:15 Jeff is home. Let's light Hanukkah candles. When we're done, Jelly says "more!" "More what, I ask?" "Hanukkah!" she says. We open presents. Moe is unimpressed but Jelly loves her new stacking blocks and plays with them for a while.

6:40 Dammit! I forgot to give Moe his melatonin. Give him the pill, get him in a clean diaper and pajamas. He climbs right into bed. I think he's been trying to say "night night." It sounds like "nnn nnn" but I'll take it.

6:50 At hearing the words "bed time" Jelly takes a new interest in the blocks. I tell her she can pick out a book, so we go to her room. We read "I Love You Through and Through" 3 times. She begs for more, but I tell her she has to go to bed. Tuck her in. "Ni Ni!"

7:00 I start making dinner. Jeff makes me a Gin & Tonic. I'm in love. Jeff is pretty cool too.

7:30 We're eating dinner. Jelly is still chatting away in her room.

...Time Passes...

3:45am I hear Jelly making noise in her room. She's not upset so we leave her alone. She better not wake up Moe.

3:57am Moe is awake. He starts crying. I go in there but he pushes me away. I try to offer him milk. He kicks it and I barely manage to keep it from spilling. I leave the room and vow not to go in for 20 minutes.

4:17am Jeff and I go back to Moe who is still screaming. He still pushes me away. We get him tucked in again and I look for monkey in the dark. I can't find the monkey. Ugh. We leave.

4:45 Moe is quiet.

7:00am Alarm goes off. I go to get Moe up for school. He is fast asleep. Of course he is - he was up half the night. I open the blinds. He starts to stir so I leave for a few minutes.

7:25 He's screaming. I manage to get him dressed and in the car. He is going to school today.

December 6, 2010

I Want My Life Back

Remember a few months ago when BP executive Tony Hayward said that he "would like his life back?" Well, Tony, I hear you. I'm not excusing Hayward for those insensitive comments; after all, my company didn't just cause an environmental disaster of global proportions. Although there was a pretty serious poop incident this weekend.

But sometimes I really just wish I could get some of my old self back, and for me that means my career. Here is a short list of what some of my business school classmates are doing:
  • VP, People Operations at Google, Inc.
  • Senior Vice President, Team Marketing & Business Operations, National Basketball Association
  • Author, The Career Within You
Let's just say nobody at my alma mater has called me to come present to the incoming class for my achievements as a blogger.

Today, I saw a job posting for what sounds like the perfect job. I know I shouldn't have looked, but much like my frequent perusals through what a friend of mine calls "real estate porn," I couldn't help myself. It is a marketing position, in social media. The company is looking for someone to be their "brand voice" and "editor-in-chief" for their social media channels. They are a very stylish company, specializing in the wedding and baby industries. I use their products, and they are located nearby. And I know the founders of the company.

I'd love to go back to work. I love being Moe and Jelly's mom, but I miss collaborating with colleagues, and going out to lunch, and being part of a team. I miss feeling smart and in control. But does going back to work make sense right now? The money would be nice and logistically, it could be done. Moe is in school 5 days a week, and a nanny could certainly pick him up. He has music therapy and we're adding some occupational therapy, and, yes, a nanny could take him to those too. But I like getting to see his teachers every day. We share information even during the few minutes of school pick up. I feel like I need to see firsthand how Moe does during therapy, learning the techniques his therapists use so I can continue at home. And I'm not sure adding the stress of a job, however much I love it, is what this family needs right now.

I know that this is a challenge faced by all parents, but like so many of our decisions these days, it is complicated just a bit more by autism.

December 2, 2010

Day 3: Moe's Favorite Things (video edition)

It's been a busy day, so I'm going to cheat a little on our "Moe's Favorite Things" holiday special and just say that what Moe really loves to do is be really, really active. If we let him go at a park, he'll just run and run. At home, he spins, runs, climbs and jumps. He can get quite manic, actually. I used to try to calm him down when he got in these moods, afraid that over-excited Moe would quickly turn to over-tired Moe and end in a screaming meltdown. But a recent OT consultation helped us realize that Moe needs these releases of energy, and that we can use them rather than work against them. That led to us making a few changes in Moe's schedule, like giving him a bath (a very exciting activity) in the afternoons instead of right before bed.

I also try to use Moe's energy to try to get some language out of him. For those of you who don't know Moe, he is able to talk some. He has very little functional language, so that is obviously something we work on a lot. He used to talk more, mostly labeling things, and was easy to understand. But now, when he does talk, he has trouble forming the words. It is almost like he hasn't used those mouth muscles so he needs to build them up again. But lately he seems a bit more willing to try, so I use every opportunity to hear his words. Here is an example of that. Enjoy!

December 1, 2010

Day 2: Moe's Favorite Things

Let's talk toys, people. Moe doesn't like very many toys, unless they have lots of lights and sounds. To encourage creative play, and keep mommy sane, we try not to give him too many of these. So we have a lot of legos and blocks, a play kitchen, and lots of puzzles. For the most part, these are not Moe's favorites, though he does like to pile the legos in his crib and dump out all of the puzzles so before bed I have to reassemble 15 puzzles. I've gotten pretty good.

But there are some toys that keep Moe's interest, so here are a couple of his favorites.

Alphabet Pal
One of our most recent additions is this caterpillar toy. We originally played with this with Moe's OT, who thought the shape of the buttons would encourage using an index finger point.I resisted purchasing one Moe for a long time, but when I found a used one, I bought it. he loves it and it keeps him engaged because there is music (26 songs!) and the antennae light up.

Fisher Price Music Player
Moe sings all the time and gets really excited when I put on the music from school. We started using music as a way to relax before bed time and it seemed to work. We finally broke down and bought him his own player when were looking for some self-soothing techniques Moe might be able to use if he wakes in the middle of the night. We've loaded it with familiar songs from school, some audio books (Brown Bear and The Hungry Caterpillar) as well as some calming meditations for children from Relax Kids, like this one: Relax Kids Nature: Enchanting Meditations For All Ages.

Moe loves all his books, and will spend long stretches sitting among a pile of board books, chewing on some, flipping through others. I think he understands some of them because he will often choose books that are relevant to what is going on at the time (i.e books about school or about having a baby sister). This astounds me for a kid who seems to have very little language. But Moe really loves to look through magazines. He gets a kid-oriented nature magazine that he enjoys a lot, but he seems to especially like looking through cooking magazines. It may be just because that's what I happen to have lying around, but flipping through the pages and looking at the pictures is very calming to him. Jeff always laughs because Moe and I both like to flip through magazines while we're eating. Moe will also page through the decorating and gardening books we have in our combination office/playroom.

We do a lot of trial and error around here with toys, and some toys seem to come in and out of favor periodically. I can't wait to give Moe his Hanukkah present tonight: 

What are some of the toys that keep your kids engaged?

November 30, 2010

Day 1: Moe's Favorite Things

If Oprah can have two days of favorite things, Moe can have a whole week, right? Well, 4 days because I took the first day with my ode to Tassimo. Today, we're going to talk chewing.

When Moe was first diagnosed we didn't think he had a lot of sensory processing issues. He didn't seem to be affected by lights or noise very much, and loved cuddles. Hahahaha! We had no idea how wrong we were. We didn't realize that it could work the other way. Some kids are sensory averse, but Moe is a sensory seeker. He likes to touch and fidget and splash and especially to chew. As an infant he rarely mouthed his toys the way many babies do, but for the past year or so he's made up for lost time. There is not a book, toy, item of clothing, or piece of furniture that does not have bite marks on it.

I didn't think I'd have to tell anyone to stop chewing on the furniture since the dog did this:

For whatever reason, Moe needs to chew. It calms him and he likes the deep pressure. Lots of people like to chew and we find socially acceptable ways to do this, by chewing on things like pen caps or gum. For Moe, who wants to chew on everything, we say "not for mouth!" and redirect to appropriate things to chew on. That means basically three things: food, chewy tubes and his monkey puppet.

You know what food is, so I guess I don't need to really explain that. We do try to give Moe a lot of oral input at snacktime, with plenty of chewy and crunchy foods.

We also try to always have a chewy tube hanging around Moe's neck. This is tough because he tends to take it off and drop it wherever he happens to be when he's done chewing, but I have a lot of these around the house. For those of you who don't know, chewy tubes are hard rubber tubes that you can, well, chew on. I suppose I didn't really need to tell you that either. These are Moe's favorites:

Chewy Tube with Bumps
Pen Cap Chewy

We also allow Moe to chew on a gorilla puppet he's had since he was a baby. He's actually on his second one and I have another one waiting just in case. We removed the electronic squeaker so we can put it in the washing machine. Moe loves chewing on this puppet and bites down really hard. Here's a before and after:

Before: Happy squeaky monkey!
After: Sad Monkey
Not all kids with autism chew and plenty of kids without autism do. As far as Moe's sensory seeking behaviors, it is annoying, but not something we are too worried about. He'll either grow out of it or we'll help him find socially acceptable ways of getting this input.

For information on where to buy the chewy tubes mentioned here, click on the link above called "resources."


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