June 24, 2010

Another Rebuttal

For the last few days, there has been an interesting discussion over on another blog I contribute to, Autism Sucks. I won't recap the entire debate, but there was a recent post about a poop-related incident at a public pool. It is a great post, illustrating the type of thing parents of autistic kids have to deal with every day. It also touched upon how siblings are affected, a topic near and dear to my heart.

Amid the many supportive comments was a dissenting voice, a teenager, Kathryn, who has autism. She made the argument that since you can't separate the qualities of autism from the qualities of the person, when you say "autism sucks" you are saying the person sucks. If you didn't click above, I'd suggest you go read the initial post and the comments here.

I wanted to post my views on this as well, but since there is already an amazing rebuttal on the site, I thought I'd discuss them here. I agree with the arguments made in the many comments, so I don't want to rehash those here. But I do have a few things to add.

Kathryn says that autism is less like a disease like cancer and more like being blind or deaf. Is she saying that if she had a blind child, she wouldn't want him to see all of the beautiful things in the world if given the chance? If your child was deaf, wouldn't you want him to be able to hear music, birds singing, or your own voice? If you're not sure, I'd suggest watching this video of a baby having his cochlear implant turned on.

There is so much I love about Moe. He is affectionate and has the greatest laugh. He has a capacity for showing pure joy when he's doing something he loves. He is a wonderful problem solver. But yes, if I had the chance, I would take away his autism. I truly believe that his disability is covering up so much talent that is hidden under his autism shell. Autism is not like shyness, or not being good at math. It is a fundamental disability, a social blindness. If I could give him an implant that could help him communicate, ease his frustrations, or make it easier for him to show the world all that he is capable of, you bet your ass I would. I'd give just about anything to make that happen.

Kathryn notes that autism isn't a death sentence, and that many talented people didn't speak until they were much older, including the amazing Temple Grandin. It's true, and it is hard to say if Ms. Grandin would have her incredible talents if she didn't have autism. Probably not. And so I understand the argument that if you were to "cure" autism, you are fundamentally changing that person. But look at another prominent member of the autism community, John Elder Robison. He is working very hard to understand the causes of autism and even undergoing a kind of electromagnetic brain therapy as part of a research study. He describes one session after which he suddenly had insight into people and emotions that he never had before. He writes in his blog, "Turning on the ability to see into other people overnight is, as I describe in the video, one of the most powerful emotional experiences of my life."

At the same time, he recognizes that:

If much of my life is defined by autism, and autism is a terrible thing, how do you think I will feel about myself? I ended up in special classes because I am autistic. I flunked out because I am autistic. I already know I am disadvantaged with respect to others who are not autistic. I don’t need more stuff to feel bad about.

I want useful help. I want to learn how to hold a conversation, how to make a friend, how to get a job. Practical skills are what I need, not moral judgments.

I am a huge fan of Robison's, and the rest of this post on neurodiversity and a cure can be found here. It is a useful perspective, but we, as parents, are looking at this from the other side. We want to provide that useful help, but don't always know how to. We hate to see our children suffering through a tantrum, but often have no way to know how to fix the problem. We are judged by others, and even though we shouldn't care, it hurts because we have tremendous guilt. We feel deprived of the small things that other parents get to take for granted, like their child running up to them after school or hearing their voice call you "Mommy." We feel isolated when we spend our weeks and months taking our kids to therapy instead of going to playdates, and the playdates we do make it to we spend making sure our kids don't run off rather than having any chance to be social. So yes it sucks. I love Moe with all my heart, but I'm not going to pretend that it isn't a tremendous challenge every single day.

For a more powerful rebuttal post, read Response to Kathryn's Comment, written by a mom of two sons with autism.

June 22, 2010

Autism In Translation

As part of the Silicon Valley Moms Group Book Club, I just finished reading Girl In Translation by Jean Kwok. It was a quick and easy read (which is good because Moe has picked up some interesting new obsessions that are requiring me to be on my toes. These include playing with the water that comes out of the fridge, playing with the dog's water dish and climbing the bookshelf to get into the fish tank. But I digress...).

The first half of the book focuses on a young girl's experience moving from Hong Kong to New York. Her mother spoke no English, and she had just the limited English skills she learned in school. Despite being very bright, Kimberly struggled at first in school because she could not keep up with what was being said in class. The author used an interesting device to describe what it was like for Kim, writing dialog the way Kim heard it. For example, when Kim goes to visit a friend at her house, the pets come running toward them. The friend's mom says "Don't be afraid,...I know they can be over woman if you're not used to animals but they won't hot you." In another scene, the principal of Kim's school asks her if she needs any "recordy shunts" (recommendations), and describes that financial aid is available but that budgets may already be "ex-sausaged" (exhausted).

Kim also has a tough time fitting in with the others at school. In addition to the language barrier, she is incredibly poor and both her ethnicity and hand-made clothes cause her to stand out as being different. But more than that, she has trouble understanding the youth culture, the subtle and not-so-subtle ways that kids interact, express interest in each other, and form friendships. Her outstanding intellect and strict manners, not valued in her public school the way it was in Hong Kong, further set her apart from her peers.

This got me wondering if this might be a useful way to think about Moe's experience with the world. I know I am always talking at him, asking him to do things (or, more likely, not do them), asking him questions, and setting expectations. Many times, I think he understands that something is expected of him, but has no idea what. Other times, he clearly wants to have or do something, but has no way to express his desires. As he gets older, navigating the world of social interactions is likely to also be difficult for Moe. Even if Moe does learn to communicate, which we believe he will, so much of what happens in human interaction is unspoken.

I have no idea if this is a valid analogy for Moe's experience with the world or not. I struggle every day to understand what is going on in Moe's head. I wish I could get inside there and know what it is like for him and how to help him interpret the world. For now, we try to find some common ground, and I think we've found some of that in sign language. I also hug and kiss him as much as I can, squeezing him tight, and hope that the language of a mother's love does not need any interpretation.

The book, Girl in Translation, was provided to me free of charge by the publisher as part of the Silicon Valley Moms Group Book Club. I was not paid for this review.

June 19, 2010

Hello, Everybody

musicalnote We made it through last week, Moe's week off in between school and his extended school year program. Thankfully, my mom came to help out for a few days so we could get out of the house a little bit. We finally had a chance to check out Happy Hollow, bought a fun sprinkler toy for the backyard and generally enjoyed some of the nicest weather we've had in a long time.

On Wednesday, we were supposed to have our last day of music class. Unfortunately, Jelly had a bad cold, but because Grandma was in town it worked out that I could still bring Moe. I think he's starting to appreciate time just with Mommy, and he seems particularly excited when we get to go in the car without Jelly. Moe had missed the previous two classes because he started school, so I was excited that he could make the last session.

Music class has been a mixed bag. I think Moe really enjoys it, but I often have a tough time keeping him engaged. He tries to escape the room to go outside and run around. He likes to go to the back room because there is a kid-height sink and he wants to turn on the water. Lately, he's become pretty fixated on the clips on car seats (I think because he is finally able to clip them himself), so I spend a lot of time directing Moe away from the strollers and baby seats that are in the room. But Moe likes the music and playing the instruments and, especially when we were doing the in-home program, it was often the only socialization opportunity he had each week.

I noticed an big difference this time. He went right over to the drums and started banging on them. He looked at the other kids. He jumped and danced with me. (Did I mention he can jump now? All on his own? Hooray!) He seemed to be trying to participate in the "right" way, imitating when he could.

The highlight of the class for me was as we were getting started. We sat down and started patting the beat to our welcome song. A beat or two before we all started signing, Moe sang "Hello, Everybody," the beginning of the song! Teacher E and I just looked at each other in amazement, both so proud of little Moe! We've been with E for a long time, she led his second birthday party, but I don't think E had ever heard him speak at all. So this was a wonderful way to wrap up the session.

Moe is still Moe, and I did have to spend some time that class keeping him away from baby seats and sinks. But there was a qualitative difference. I truly think it was because of his time at school and I absolutely cannot wait to get him back there next week.

June 18, 2010

Homeless Bloggers

couch As many already know, the Silicon Valley Moms Group has decided to close its doors. This blog has been home to many great writers who will know be living on the virtual streets. Okay, so most of us have our personal blogs, so maybe it's more like losing your vacation blog. Still, it is a loss and many of us will be wandering around, laptop bag in hand, searching for someplace else to unpack for a while. I've only been a writer for the Silicon Valley Moms Blog for a few months, but I'm deeply disappointed that I, and hundreds of writers across the country, won't be writing for them any more.

Unlike many of the writers who have been with the group for a long time, I have not met any other local bloggers, networked at BlogHer or other conventions, or become part of the "in" crowd of mommy bloggers through my association with SV Moms. I looked forward to doing all of these things, and I hope in time, as new communities form, I will have those opportunities.

Silicon Valley Moms Blog was one of the first blogs I read on a regular basis when Moe was born. It was recommended to me by a friend who had "been there." Although I couldn't relate to every post, I found a wealth of information, resources, and a group of moms (and a dad or two) who were facing the same challenges I was. As any new mom will tell you, just knowing you are not alone is incredibly helpful.

As I read the posts, another thing happened. I thought "Why couldn't I do that?" So I started Anybody Want a Peanut? I didn't tell anybody about it at the time, and until Moe was diagnosed, the blog didn't have much focus. By the time I decided to start telling people about it, I had removed most of my early posts to give the blog its current shape. Reading SV Moms inspired me to write, something I've always loved to do but never had the time or motivation.

After Peanut was launched, I missed having a forum to write about other topics, and I wanted to try my hand at writing for a larger audience. So I got up the courage to apply to Silicon Valley Moms, and was thrilled when the founder, Jill Asher, invited me to join. Someone other than my family and friends thought I was a good enough writer and a unique voice worthy of joining their community. It gave me the confidence to continue writing and developing my voice and style.

I will, of course, continue to write here and at Autism Sucks. As new Silicon Valley, Special Needs and other blogging communities form I hope to become a part of those networks as well. For now, I want to thank the team at SV Moms for allowing me to be a part of the site that they built from the ground up, for their hard work, and for considering me for whatever they do next. (Really. I'm interested. Call me.)

June 13, 2010

The High Cost of Autism

There have been a number of reports on the high cost of autism. Kids with autism often need speech therapy, occupational therapy, sensory integration therapy and behavior therapy. Services are often not covered by insurance companies. We have been fortunate that the state's Early Start program covered all of Moe's services until age 3, and the school district is covering his current preschool. Additional services, like respite care, day care and specific behavior therapies could be covered by the Regional Center if we need them in the future. These services are expensive, and even though we aren't paying directly for them, they do cost us as a society.

There are additional costs don't always get added to the estimates of the cost of raising a child with autism. There are, of course, the emotional costs: the strained relationships, high incidences of divorce, and the stress on the family and siblings to name a few.

And then there are the little things. Enter exhibit A:


Moe bit my phone, my beloved Pixi. Moe really needs to chew, and though we try to direct his chewing to appropriate things like his chewy and try to satisfy his need to chew by giving him chewy and crunchy foods, he often bites on whatever is nearby. Fortunately, he doesn't generally bite people. Unfortunately, he does seems to have a taste for expensive electronics. This is the second phone I've lost to Moe's teeth.

The timing couldn't have been worse. The new iPhone comes out in just a couple of weeks, leaving me in a bit of a quandary as to what to do for the interim. I ended up having to reclaim my old phone that I lent to my dad, leaving him without a phone. We're both probably going to end up needing new phones. On the other hand I think I may have the excuse I need to get the new iPhone. I guess I also have a taste for expensive electronics.

June 7, 2010

Preschool Begins and I'm Already Late for Summer

crayons Last week should have been a great week. We celebrated Moe's third birthday with a party at Grandma and Grandpa's house, Moe started his new preschool, and I got some of my freedom back. Unfortunately, our sleep issues overshadowed much of that. So while I should have been running up and down the street rejoicing that I can leave the house again, I was so tired I could barely get my butt off the couch.

Still, it was a big week for Moe. He started preschool, and it is going great so far. It is a long day for a little guy, 8:30-2:40, but he's handling it like a champ (though the change in schedule is probably not helping our sleep problems). We adore his teacher, Mrs M, and she and the aides seem to have taken to our little guy right away. Jeff drops him off in the morning and I pick him up, so we're getting a nice routine at home as well. We also get a daily communication log from the teacher with a short note about how the day went. My favorite so far was about playtime with the water table. Apparently, he tried to climb in the water table for a little swim, which everyone thought was very funny.

Having Moe out of the house is a nice break for me. I do miss him, but it is nice to have some time with Jelly Belly. And since I appreciate just being able to get out of the house, even going to the grocery store seems like a real treat. (I'm sure that won't last.) But I am looking forward to signing up for a mommy and me class, and I joined our local YMCA so I can take her swimming and even get some exercise myself (they have childcare - hooray!). In the fall, the mommy friends I met when Moe a baby will start sending their kids to preschool as well, so I'm also looking forward to reconnecting with them and getting our younger babies together for their own playdates.

The big challenge for this week is finalizing our summer schedule. Because of the timing of Moe's birthday, he only gets two weeks of preschool before summer break. Moe qualified for Extended School Year (ESY) services, but that class only runs for four weeks. So we have a five week break at the end of the summer that I need to fill. I'm concerned about not having services for that long because I don't want to lose any progress. Having a break might also make the transition back to school more difficult. All of the private programs I've contacted so far are either full or don't take kids as young as Moe. So I'm at a bit of a loss.

Assuming I can't find a placement for Moe, I'm a little big panicked about what I'm going to do with both kids for that long! I can't take them too many places by myself because Moe will run off. So parks, beaches, museums, zoos and the other great places we have in the area are not possible unless I have help. My wonderful babysitter is traveling for much of that time, so I'm considering hiring some help for those weeks. If I have someone to watch and play with Jelly, I might be able to make it work.

June 4, 2010

A Prayer for Sleep

I've been lucky when it comes to my kids and sleep. Sure, we had the typical rough few months with both of my newborns, but at four months old, we took a hard line. We sleep trained. We let them cry it out. We stuck to early bed times and a good nap schedule. And it worked. My kids learned to self-soothe and fall asleep on their own. Sure, we had (and still have) the occasion rough night for teething or stuffy noses, but most nights they slept twelve hours a night. My kids were good sleepers.

I tried not to brag about it at mom's groups meetings and playdates. While others were talking about their sleep issues, I tried to keep quiet about how good I had it. I would offer suggestions as to what we did, trying to sympathize but also feeling like there must be something they were doing wrong - something we somehow did better. Well, ladies, it's payback time.

The sleep monster has struck our house, and good. It started about 6 months ago. Moe, my 3 year old with ASD, started waking up in the middle of the night. We'd hear him playing, often giggling. He'd stay up for an hour or maybe two, and would eventually fall back asleep. I was a little concerned because it made it harder for him to wake up in time for his 8 am therapy sessions, but by the time I consulted with our OT on some strategies to help him get back to sleep, he had grown out of it.

Then, about a month or so ago, Moe started to have some trouble falling asleep. The behavior was similar. He'd giggle and shriek in his crib. He was clearly over-stimulated and it started taking longer and longer for him to fall asleep, sometimes up to three or four hours. Again, this made for difficult mornings. We consulted with our OT, made sure we had a 30 minute wind down bedtime routine, tried the calming techniques. Nothing worked, and after consulting with our doctor, started him on melatonin before bed. It works like a charm at helping him fall asleep.

Relief! Problem sovled! Right? Right?? Wrong. Now we have a new problem. Moe is once again waking up in the middle of the night and having trouble falling asleep. On three separate occasions - enough to qualify as a trend in my book - he has been up for over five hours. Yes, dear readers, my once-was-a-great-sleeper child is waking up at midnight and not falling asleep until five in the morning. I feel like I have a newborn again. I'm so tired I can barely remember my name.

Everything is worse when we are tired. Moe's behaviors increase and speech decreases. My patience and ability to look at things with any measure of perspective goes out the window. I crave chocolate chip cookies. It gets harder for me to hide the bags under my eyes. It isn't pretty. Oh, cruel and vengeful gods of sleep, I beseech you. I am at your mercy. Please, let this pass.

A lot of other interesting stuff has been going on over here, but I'm way too tired to post about it now. This was originally published at Autism Sucks.

June 1, 2010

What is Hope?

After Moe's diagnosis, I couldn't help but imagine the future. When we received the news from our developmental pediatrician, she asked if we had any questions. Through tears, all I could say was that I just wanted him to be okay. I imagined all of the difficulties that he would have in school and wondered if he would have friends, go to prom or attend college. We had to make decisions about the type of services he would receive, but without a crystal ball it was impossible to know that the choices we made would be the right ones. When I tried to take it all in, at best it was overwhelming; at worst, it was panic-inducing. All of my hopes and dreams for my sweet boy were disappearing before my very eyes.

The most common piece of advice I received at the time was to take it one day at a time. We had no idea what Moe would be like in 1, 5 or 20 years, so it didn't help to worry about it. This works for a while. Certainly, taking things one day at a time helped keep those overwhelming feelings at bay. It allowed me to revel in the triumphs of the day without worrying about how he compared to the other kids his age. On really challenging days, I knew that the day would soon be over and that tomorrow would be another day. I didn't have to solve everything - just make it to bedtime.

As part of my participation with the Silicon Valley Moms Blog, I recently read the book, "I am Nujood, Age 10 and Divorced." It is the true story of a little girl, married off to a man three times her age. She is pulled out of school, taken to live far from her parents, beaten and sexually abused. But against all odds, she escapes and makes her way to the courthouse where she finds the courage to ask for a divorce. With the help of sympathetic judges and a lawyer who agrees to take her case, she is successful, making history and paving the way for other young girls who find themselves in similarly horrible situations. Life continues to be tough for Nujood, but she has dreams of becoming a lawyer so she can help others the way one inspirational lawyer helped her.

This got me thinking about the other piece of advice I received after Moe's diagnosis: have hope. People reminded me that there is no single trajectory for kids on the spectrum. Many learn to cope so well they "lose" the diagnosis, while others continue to have more obvious challenges their entire lives. But we just don't know. And as I've written about before, there is no reason to write off Moe's entire future just because he's having challenges at age two. But isn't hope the opposite of one day at a time? What is hope if not the ability to look forward in time and imagine another reality?

Our lives could not be more different, but Nujood's story reminded me of the power of hope through adversity. If Nujood had taken things one day at a time, where would she be now? Without the ability to imagine a brighter and better future, what reason would she have to try to change her situation, to "climb mountains to keep from finding myself...alone against that monster?"

Sometimes I still need one day at a time. One day at a time is for "those" days. It is about survival. But hope is about the future. It is about dreams and possibilities, and it is about action. I've never been very good at one day a time, anyway. I think I'll choose hope.

The book, "I Am Nujood, Age 10 and Divorced," was sent to me free of charge by the publisher as part of the Silicon Valley Moms Group Book Club.


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