March 30, 2012

Something Good

Earlier this month, I wrote about how I really needed something good to happen.

Well, it did! A few weeks ago, I entered an essay writing contest. The contest is sponsored by Notes and Words, a literary and music event in support of Children's Hospital Oakland.

I worked the piece for a long time. I solicited feedback from people who are good at giving feedback, including my dad who used to edit my essays in school and sometimes made me cry. He was a tough critic.

This time, I made him cry.

And yesterday, I found out I was selected to be a semi-finalist!

I am really proud of this piece and I am so excited I can finally share it with you. Five semi-finalists will be chosen by a combination of votes and judges' assessments. And I'd really, really appreciate it if you would vote for my piece!

It is called Lost, and you can vote for it by liking the essay on the Facebook page.

Just go HERE and click "like!"

I'd be forever grateful.

March 28, 2012

Is it Grief?

"All of us...had a distinct plan that instantly turned to rubble. And we're not here to figure out how to clean up that rubble, or at least I'm not. I guess I'm here just to practice saying my story out loud."
--Natalie Taylor

I've heard many times that I should not grieve my son's autism diagnosis. That to say that I feel grief is to say that I feel my son has died. I do not feel that way.

I have heard this stated enough times by people that I respect. I take it seriously. I've commented on other blog posts and I've probably written about it here. I have heard this from both autistic adults and parents of autistic children. I want to understand it; I want to internalize it.

But I'm having trouble finding a better word.

Sad is okay, I'm told. Sad is not grief. Anger is okay too. But sad and angry seem to be missing something. Those words don't seem to capture the feeling that something important has been lost.

Natalie Taylor, in her memoir Signs of Life, shares the story of losing her young husband. "There comes a moment when it settles in that all the things we've pictured will never happen....This is as happy as we can ever be." She continues, "There is no image of the future on which we can rest comfortably."

These words make sense to me.

Of course it isn't true that "this is as happy as we can ever be." We live our lives. The sadness or hopelessness or loss that we feel after a diagnosis--or a death--fade and become background noise while other feelings begin to take center stage. But the hard feelings are always there, ready to show themselves. In one moment I may feel full of joy and connection and empowerment and in the next back to fear or frustration. Emotional swings can be triggered by stressful autism-related things, or by unrelated things, like the dog stealing food from the table, or an ever-growing pile of laundry.

Natalie talks about how, even though she is the same person, she sees everything through the eyes of a widow. Although the eyes of a widow are certainly different from the eyes of an autism parent, we are both forced to wear new glasses. Sometimes we can look around them, or tilt our heads down to peek over the top, but even that doesn't look right anymore. Our vision has permanently changed. And these glasses are not invisible; other people know that we are wearing them too.

I, like Natalie, have moments when I "think that I can somehow go back." I don't just wonder how things might have been different, I picture it, create scenes in my head of what life might have been like. I know this isn't healthy or productive. "I know full well that I should be going in one direction, but subconsciously my mind is in the other."

There is so much in this book I relate to. How do I reconcile the similarity of our feelings, knowing I should not grieve? I don't want Moe to think I felt like he died the day he was diagnosed. Nor do I want to diminish the feelings of those who are grieving someone who has actually passed away.

And what about the autism parents who don't grieve? Am I just a horrible person? Maybe we feel the same things but use a different label. Or maybe they don't remember what it was like during those first few years in the post-diagnosis fog. Maybe, like childbirth, we eventually forget the pain and only remember the joy. Perhaps childbirth is a better analogy after all. It is certainly a more positive one.

I'm not sure what Natalie or her FMG (Fairy Mom Godmother) would tell me. I think she might say that you feel what you feel, and there isn't much you can do about it. Or maybe her therapist, Dr. G, would ask why we need to label our feelings at all. We can just feel them.

And then Natalie would probably tell me to go read a book. I wonder which one she'd recommend.

During the fifth month of pregnancy with her first child, Natalie Taylor was devastated by the sudden death of her husband. Her journey with grief is chronicled in the memoir Signs of Life. Join From Left to Write on March 29 as we discuss Signs of Life by Natalie Taylor. As a member of From Left to Write, I received a copy of the book. All opinions are my own.

March 23, 2012


Today is the tenth anniversary of my brother's death. Ten years. It seems like some kind of accounting error, but then I do the math: Moe is almost 5, Jeff and I are coming up on 7 years of marriage. It all adds up.

I haven't been very emotional about this anniversary in the past: three years, six years, eight--I didn't think too much of it. I thought more about his birthday than about the day he died. But ten years is a long time. It's not that I miss him any more or less today. But he has missed so much.

I realized the other day that Jeff and I met exactly 22 days after my brother died. I don't know why I never thought to count before. In my mind, Bill's death is a clear transition point from the first part of my life to the second. The first part included growing up, going to school, and starting life in general. It started on March 2, 1973 and ended on March 24, 2002. I think of this time as my childhood, even though I was 29 when Bill died and had been fully employed or in graduate school and living on my own since college.

The second part of my life started on April 15, 2002, the day I started my new job at a startup called Danger. I was sitting on the floor on a conference call, my first meeting, and Jeff walked in and the second part of my life began. I'm not sure if the timing is coincidental. It's not that I think I needed my brother to die to move on with life. It's not like he died and suddenly I knew what was important in life. I had already planned to start this job, and I had always wanted to get married and have a family. But I was certainly in a different frame of mind when I returned home after the funeral.

Moe (whose real name starts with a W and I'm sure everyone already knows) is named after my brother, William, though he always went by Billy, and later, Bill. When I was pregnant with Moe, I really wanted a girl, in part because I wanted to avoid the issue of naming my child after my brother. When I found out I was having a boy, I never wanted to name him William, even though the name has become popular again, though these days it is usually shortened to Will or Liam.

I just couldn't imagine calling another child Billy. How could I be angry at Billy? "Billy, you are in time out!" How could I put my dead brother in time out? And I certainly didn't want to be reminded of my brother every time I said my child's name, or worse, stop associating the name with my brother because someone else now inhabited it.

There was another reason I didn't want to have a boy or name him William. I was worried about the expectations that would be put on this new baby, the proverbial shoes he would have to fill. I was worried that people, especially my parents, would put too much significance on the fact that my first child was a boy. Moe's uncle died, but he deserved a clean start, just like any baby. I was thankful that when Moe was born, he looked just like his father. I didn't want there to be any doubt that my son was not sent here not to be a replacement for my brother.

It doesn't take a psychology degree to figure out that although I thought I was worried about my parents' expectations, I was actually worried about my own. I don't know why I'm only just figuring this out. Now that I have almost 5 years of parenting under my belt, I can see that no parent, mine included, would ever think that one child could take the place of another. Even if we tried our hardest to fit a child into a certain mold or set of expectations, kids have a way of being whoever they are going to be. Of course, we have some influence, but in the end, if you kid is going to be shy, or gay, or even (here it comes) autistic, it is ultimately up to them. Or at the very least not up to us.

Moe may be Jeff's little clone, but sometimes I look at him and see a little bit of my brother. My parents say they don't see it. But there is something in his smile, in his small teeth with tiny gaps, that reminds me of my brother. I see it especially when Moe is in the bath, and his curls have temporarily become straight. His fair skin and pink cheeks are exactly like Bill's when he was a little boy. Despite my initial fears, I am thankful for this resemblance, however slight. It's nice to think that something of my brother is still here in a genetic connection that means that, no matter what, we are still family.

March 20, 2012


The last few days have been lovely. Moe has been mellow. He's been falling asleep early and sleeping through the night. He did a great job in speech on Monday, though he was a little tired. Yesterday when I picked him up from school, they said he had one of his best days ever. He worked hard and was well-regulated.

It turns out he has strep.

It has gone through the class like, well, like a bacterial infection. At this point, a couple kids have had it, as well as a few of the teachers.

It's so hard to know when Moe is really sick. He didn't seem to be in a great deal of pain. The one time I had strep as a kid I remember walking around with a bottle of Chloraseptic spray. He hasn't been eating great, but that could be from any number of reasons. Maybe his throat hurt, but maybe he was just being picky, which happens sometimes. He didn't have a fever. All I could say was, he seemed "off," a little sleepy but certainly not lethargic.

He would sit on the couch and watch TV with me. It was nice.

Then this morning, I noticed a rash on Moe's stomach and back. It wasn't a terrible rash, and easily could have been something that was from a skin sensitivity. Then I read an email from another mom in Moe's class telling me that others in his class had tested positive. I figured it was time to get him swabbed.

That was not an easy task. I'm so grateful to have a pediatrician who doesn't think I'm crazy every time I bring Moe in when he seems "off." I try not to be overly worried, but with Moe I can only go with my gut. I was able to get Moe in a pretty good hold on my lap, and she got the swab. He was already upset being there, and he was not pleased about having a cotton swab shoved down his throat. Fortunately, he recovered quickly. He's usually good like that.

I'm glad I trusted my mom-sense on this one. We started the antibiotics today and he already seems to be feeling better.

In fact, he's in his bed right now, having trouble falling asleep. Just like usual.

March 14, 2012

Writers Without Blogs: An Unexpected Revelation

I'm excited to launch what I hope will be an occasional feature on my blog: essays by writers who don't have blogs. 

This piece comes from my good friend Wendy, whose son goes to Moe's school. Drew is a few years older than Moe, and Wendy and her family have been a source of information and hope, as well as lots of laughs, especially when our typical kids play together. Today she writes about a topic that I know is near and dear to many of us: raising an autistic child and a typical sibling.

An Unexpected Revelation

Before James was even conceived my husband and I were so terrified to even consider having another child. Our firstborn son was 5 years old with severe Autism, and we had so many concerns about what having another child would do to him, to our marriage, or if we could handle the possibility that we would have a second child with Autism. I had a million questions, a million reasons not to take the leap. And I was still dealing with the guilt that I had somehow caused our son's regression into Autism. That I had eaten too much tuna, or drank too much diet soda, or that the dental work I had to have done in my second trimester somehow damaged him and set his fate.

So when the day finally came that I felt I had healed enough to take the leap and add to our family I was even surprised myself. I never thought I would get there, but it is amazing what therapy and a group of supportive people can do for your heart and soul. 

I decided that if we were going to do this, that I was going to do everything right. Which meant everything opposite of what I did the first time around. I was going to eat as clean as possible. No artificial anything, organic as much as possible, DHA and multivitamins religiously, etc. Exercise, no unnecessary procedures, I even had my mercury fillings removed before trying to conceive. That also meant a drug free birth, no vaccines, and breastfeeding from the moment he left the womb. Cloth diapering, limited exposure to hazardous chemicals, and anything else I could think of that would be completely opposite from what our son endured. I am sure that those things were not necessary, but in my mind, I was going to give this baby the best chance to have a "normal" life as I could. Obviously the guilt had not completely left my mind. 

James was conceived within 2 months of trying and after a healthy pregnancy and drug free birth he came into the world exactly as I had planned so meticulously. I am grateful for that, though I know ultimately it was in God's hands that all went well and I am just blessed that their were no complications. 

He is now 20 months old and as far as we can see, he has dodged the Autism diagnosis and is not presenting anything unusual at this time. While we are so relieved and ecstatic about this, it has brought on something I never expected. The painful realization that he is typical. That his brain is functioning as it should and that there will come a time in the near future where he will become the big brother even though he is 6 years younger than Drew. I was completely blindsided by this knowledge as it had just never entered my mind. 

Now I see what a toddler who isn't battling sensory, comprehension, and auditory processing issues is able to do, and all the memories of Drew at this age come flooding back. The pain of seeing what was stolen from him when he regressed at around 18 months. Seeing James point at things to communicate which Drew still cannot do at 7 years old. Watching James seek out other children to interact with. Seeing that he can follow directions and has a comprehension of language that Drew still doesn't have now. The pain cuts so deep in my soul. 

Our home used to be the place we could run for safety. Away from the judging eyes of the world that can be cruel and heartless. Home was where we could, if just for a while, forget that Drew struggles with Autism so much and is so far behind his peers. We could just enjoy him for who he was and relish in all his amazing qualities that I would never trade for a moment. Autism has given him so many things that I love about him. He is so very loving and affectionate. He gives the best hugs and kisses and longs only to be with his Dad and I...playing and flapping and enjoying our little world. 

I never fathomed the fact that now with a typical developing child we would no longer have this world to escape to. Away from the children that were so much younger and so much more developed than him. Gone are the days of leaving a park for the solace of home....crying because a 2 year old came up to my 6 year old and asked to play with him and he could not respond because he is non-verbal. Going home and just hugging my child and willing myself to forget the pain of what has been robbed from Drew. Now, there is a precious little boy in our world that is going to be one of those kids. Asking why Drew doesn't talk to him, or play with him, or why he flaps and stims and seems as though he doesn't see him at all. 

And I wonder how much Drew understands. Will it hurt him to see that his little brother can do things he just can't do? Will he feel that pain and wish for the days that he could just be at home with us and forget that he isn't like other kids. Part of me hopes that he will have that kind of clarity, and part of me prays harder than anything that he won't. That he will be blissfully unaware of the differences between him and his brother and the rest of the world. 

This is a heartbreak that I wasn't ready for on this journey. And it is only the beginning. I just hope that I can deal with it in the best way possible. Parenting two children that are so different in every way is such a difficult thing. Finding the balance and meeting the needs of both kids in the best way I know how is going to be a learning process. I am grateful that I have some amazing friends that have gone before me in this journey. Theirs will be the shoulders I can lean on and their wisdom will help carry my through the process. 

Know someone who has a story to share, but doesn't have a blog? Have them contact me!

March 8, 2012

Still Breathing

I don't quite have the words to describe the last few days. The only thing I can think to say is, they've been a lot.

I turned 39.

We are in the process of wrapping up a very time consuming and expensive psychological assessment for Moe.

Moe threw up "several times" at school yesterday. In typical form, he was completely fine once he got home. He threw up again during today's afternoon snack at school. I have no idea what is going on with him.

I had to bring the dog had to the vet today for blood in her stool, which is most likely caused by anxiety. Time to talk to the vet about a change in her Prozac dose. Yes, I'm serious.

Then I was stung by a wasp.

I'm not allergic as far as I know, but I had a fairly unpleasant reaction. My "symptoms" may have been less allergy and more anxiety. Either way, I felt panicked, and drove to Jeff's office to made him sit outside with me for a few minutes. I needed him to tell me I would be okay. That I was still breathing.

After Jeff went back in the office, I sat in the car and checked email. I found out I was not chosen to be a part of the Listen To Your Mother show. I wasn't surprised. My words seemed to fall flat during the audition. I was already getting nervous about finding a babysitter for that night. (You know you're an autism parent when the thought of finding a babysitter fills you with more anxiety than performing in front of a live audience.) Though I do admit I briefly thought about sending them an American Idol style rejection response: "you will regret this!"

Regardless, rejection hurts.

And I really needed something good to happen.

At one point I thought "could this day get any worse?" If ever there were a day for hyperbole, it was this day. But the truth is that yes, it could be much worse.

The first thing I read this morning was a story about a mother who shot and killed her 22 year old autistic son, and then herself. They lived nearby. Her son had attended a school not far from my home. My heart is broken for them, and the news has shocked and saddened the autism community.

I'm not prepared to write about how we need to do more to help support adults with autism and their caregivers. I don't want to be trite about using one family's tragedy to gain perspective in my own. I will let this story stand on its own. It is something we all need to think about for a while.

I just sent Jeff a text message telling him that I'm still breathing. Right now, it is enough.

March 3, 2012

An Education

About a year ago, I wrote a piece called Notice of Eviction. I've been thinking about that piece a lot lately.

Over the past few months (and probably much longer), there have been discussions taking place between people in the "autism community," in this case, mostly parents of children with autism and people who themselves are on the autism spectrum, sometimes referred to as autism self-advocates. I am not going to summarize everything that has been said, though I will provide some links below, some of which contain other links.

It is hard for me, as the parent of a very young child with autism, to wrap my head around these discussions. But I have learned a few things that I want to share here. I do not claim to summarize all of the issues, but just a few that have been salient to me.

  1. It is hurtful to autistic people to say things like "autism sucks." Someone might mean "it sucks that my son has no friends" or "I really hate the fact that my five year old isn't potty-trained." If autism describes the fundamental way in which a person views the world, what we are really saying is we think our kid sucks. And I know I don't mean that, and you know you don't mean that, but do others? Will Moe look back someday and read these words and know what I meant?
  2. Using a term like "cure" can be hurtful. As in the above, the term "cure" implies that autistics have something wrong with them that needs to be fixed. In one piece, Rachel Cohen-Rottenberg compared able-ism to racism. Imagine if I said "I wish my kid weren't black. I would just be so much easier for him." The analogy isn't perfect. Moe, for example, may never be able to live independently, not because of any societal constraints, but because he lacks the judgement and skills to do so. That said, it is a good analogy to use to check my thinking.
  3. It is patronizing to say "children with autism" when you mean "people with autism."
  4. Terms like "grieve" and "mourn," often associated with death, are hurtful. This is a tough one for me. Having lost my only sibling, I know what it means to grieve a death. I also know the profound sadness and loss associated with seeing Moe's skills slip away. I don't want to belittle the process that I or other parents go through. However, I am going to try to focus on my own process of accepting a family that is different than I expected, and try to leave talk of grief behind.
Many people's feelings have been hurt during these discussions. I don't think only one side or another is to blame. One mailing list I am on used the subject "Autism Parents Doing Damage" to inform the group about these discussions. I don't think that is fair to say. A lot of people did damage by being quick to judge, being reactionary or overly-defensive, resorting to name-calling, and not listening to the intentions of others. This is the nature of the Internet.

We aren't always going to agree. You'll notice, for example, that I will be walking in the Bay Area Walk Now for Autism Speaks. Many people do not support that organization, for, among other reasons, their use of "cure" terminology, and lack of autistic people on staff. I respect this, but I find a lot of value in the community aspects of the walk, and do think AS does good research. I think we need to know more about the causes of autism (I suspect there are many), not necessarily to find a cure but so we can be more knowledgeable about which types of therapies will be most helpful to a given person without so much trial and error.

I have flown mostly under the radar in these discussions. No one has come to my blog and called me a bigot. Perhaps I am not smart to point out one of my own "able-ist" pieces here. But as I read Notice of Eviction now, I see how this could be construed not just as me wishing away the challenges that autism has brought, but wishing away the fundamental parts of my son.

I thought about taking the piece down, but I won't do that. It was where I was at the time. I do think it is possible to both simultaneously hate the disability that has brought a lot difficulty to our lives and love the unique perspective he has on the world. Moe is four, doesn't speak or communicate well with pictures or signs, so it is hard for me to know what that perspective is. 

I hope he will learn to share it. And I hope I am capable of hearing it when he does.

For more background on this post, here are some links:
The Evolution of An Apology, Jo Ashline
I'll Take Offense, If You Don't Mind, Rachel Cohen-Rottenberg
This is MY Reality, Sunday Stilwell
Telling Autism to Suck It -- 10 Thoughts, Landon Bryce

March 2, 2012

Special Needs Ryan Gosling. Birthday Edition.

This post inspired by the awesome and hilarious blogger, Sunday Stilwell, from Adventures in Extreme Parenting. You can learn about Special Needs Ryan Gosling, and see more hilarious entries, here:


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