Why I Work

I never thought I would be a stay at home mom. I was home with Moe for a couple years, then had Jelly right at the same time he was being diagnosed. With two small kids, and Moe's therapies as well as our eventual decision to homeschool, it made sense for me to be home full time.

After six years, I finally returned to work. It wasn't easy but it was probably the best decision I've made since the kids were born. Here are a few reasons I decided to return to work.

1. I was burned out

Moe's autism affects everything we do every day. For his safety, he requires full and constant attention. It's intense and stressful and once we started homeschooling, I felt thoroughly trapped at home. Though I have some really wonderful memories of our first few years together, I needed a break.

2. I was bored

When Moe was working with his therapists, and Jelly was in preschool, I didn't have a lot to do. It's one of the reasons I started blogging. I learned some sign language. And read a lot of autism blogs and books. But I missed the challenges of my career. I know many parents really love being at home with their kids, but I admit that maybe I'm not cut out for that much mommy-ing. Autism changed the type of stay at home parenting I could do, but that isn't the whole picture. I wanted a bit of my old life back.

3. I was scared

I still am. I'm scared of what will happen to Moe in the future. I'm scared of his ability to hurt others and himself. I'm scared of what Moe's level of need is doing to Jelly. When it comes to the battle between fight and flight, I admit that I'm more of a flyer. I needed an escape.

4. I wanted to set an example

I'm not sure how Moe felt about my going to work, but Jelly didn't love it. She still complains sometimes. But it is important to me that Jelly knows that both moms and dads can work. I grew up in a traditional household, where my dad worked and my mom stayed at home. This was great for me and my brother. But I have a fancy education and I want to use it. I want Jelly to see that women can have important and fulfilling jobs just like men. And that Jeff and I share the parenting jobs that often fall to moms (especially stay at home moms), like driving on class field trips or taking them to the pediatrician.

5. The money isn't bad either

I wanted to go back to work and was willing to do it as long as I could make it break even after paying for childcare. Fortunately, I'm able to bring in a bit more than that, which helps. And even though I make significantly less than my husband, I work for the company with amazing benefits. So I know I'm contributing to the household, which is important because raising a special needs child (who will also be a special needs adult) isn't cheap. Neither are those boots I just bought.

6. I like it

This may be the most important point. I like working. I like having interesting conversations with smart people. I like solving problems that don't involve my kids. Work is personally fulfilling and that is, in itself, enough of a reason to do it.

Working is hard. Sometimes I miss out on things. I like to think that working gives me the energy to make me a better parent, but I'm not sure that's true. I just know that I'm happier when I'm working than when I'm not.

An Open Book

My hands are looking pretty beat up these days, covered in scratches and scabs. My wrists too. Moe is having a rough time.

When things are really bad, he bangs his head on the floor, the table, or any hard surface he can find. And Jeff and I (or our incredible nanny who pretty much deserves hazard pay by now) spend a lot of time trying to keep him safe. And we get a little scratched up in the process.

I suspect he started off not feeling well, maybe with a sore throat. Then he started banging his head, leading to headaches, leading to more frustration and head banging. Moe doesn't like it when we don't let him hurt himself, so he scratches.

And now my hands look like this. It's minor in the scheme of things. Whatever Moe is feeling to make him want to hurt himself and lash out at us, is worse. I know that.

But it poses a bit of a dilemma for me. I work full time, and I don't hide the fact that my son is autistic. For one thing, I probably wouldn't have my current job if I hadn't started blogging about Moe. I had taken six years off before going back to work so when I started interviewing many of my writing samples were from this blog. So anyone who interviewed me knew at least some of this story.

Most of my co-workers know as well. It's easier to have it be out there. I was nervous about that at first. It's hard enough being a working mom, let alone one with a special needs child. But it makes some things easier to explain, and you never know when you'll find a connection with someone with a similar story.

Besides, as a blogger (read: oversharer), it would be more uncomfortable for me to hide this side of my life. So for the most part, I'm open about Moe. I work with kind and intelligent people who don't try to sell me on the latest fad cures, so I like it when they ask questions. They actually listen. So, when a co-worker notices the bandaids on my wrist and jokingly asks "tough weekend?" I don't make up an excuse about a cat or scratches from the garden. Yes, it was a tough weekend.

But bringing the really hard stuff to such a visible place, not just on this blog but literally on my hands, can be difficult. Work is my escape from life with autism. I don't want those emotions at work and these scratches are a reminder of the hardest part of my life, watching Moe struggle. Worrying about his future. Getting beat up by my own kid. And I don't want that part, the worst part, to be how Moe is represented to the world.

So let me show you the sweet side of Moe too. The one where he snuggles up to me and we hold hands, if only for a minute. And his eyes, such a bright blue when he smiles. A smile that is all too rare these days but that we don't stop fighting for every single day.

Pizza and Parenting, a Metaphor!

Tonight I made pizza for dinner. I've done this many, many times before. I'm pretty good at it. I made the pizza dough, preheated the oven, rolled out the dough, put on the toppings and baked. It turned out terribly.

I had problem on top of problem today. I decided to make two smaller pizzas with different toppings instead of my usual one large one. My pizza stone was out in the garage, and the pizzas wouldn't work on one air bake pan, so I just planned to make them on a baking sheet. I put the sheet in the oven to preheat.

At this point, I thought I
still might salvage something

I rolled out the dough, topped with everything but the cheese, and got ready to put in the oven. But I had a problem. How was I going to get the rolled out, already topped dough onto the heating baking sheet? I don't have a pizza peel. (How this is even possible?) The dough was thin and when I attempted to lift it, it just fell apart.

Meanwhile, Moe was whining and crying and fussing about being hungry. Frazzled and rushed, I decided I'd just make the pizzas separately, got out air bake pans, and managed to get the first very messy dough transferred. I moved the second pizza to its pan a little more easily, but both crusts were stretched very thin.

I baked the first crust for a bit, then topped with cheese. Otherwise, the cheese burns before the crust is baked through. As I put the cheese on the pizza I realized I had somehow bought fat free mozzarella. If you've ever used fat free cheese, you'll know that it is nothing more than flavorless rubber strings that do not melt well and belong on no pizza ever. But it was all I had.

Second pizza was equally screwed up

With the first pizza out of the oven, I still had hope. I sliced it, and tried to lift a piece. It stuck to the pan. Completely. In my haste, I had forgotten to oil the pan.

What can I say? It wasn't my day. It happens to the best of us. I know I can make really great pizza but today, as Jeff said, "my head wasn't in it" and I mucked it up.

Jelly has been into metaphors lately, and wow, what a metaphor this provided. How many times have we all made mistakes either because our heads weren't in it, or because factors just seemed to be conspiring against us?

As a mother, especially of a child with limited communication skills, I rely on formulas—recipes of communication that usually give me a positive outcome. But sometimes I don't have the right ingredients, or I try something new, or I don't plan ahead correctly and I screw it up.

But this kind of mistake is harder to let go. The stakes are so much higher and I want to get my interactions with Moe and Jelly right every time. But I don't. Sometimes I yell, or choose to give iPad time instead of engaging in a game, or cave when Jelly only wants crackers for dinner. I lose my patience with Moe. A lot.

I will never get it right every time. And every time I read a blog post by a parent who has learned to no longer tell her kids to hurry up, who is always patient and positive, who never allows screen time and whose children make their own spinach avocado smoothies for breakfast every morning, I know I am going to screw up. Because parenting is hard. And parenting a tough kid is even harder. Much harder than making pizza.

All I can do is remind myself of past successes and know that I'll probably get it right the next time. Or the time after that.

Better luck next time

Here are a couple of posts about times I've successfully made pizza!
Using Pioneer Woman's pizza dough recipe
Quick and Easy Pizza

Positivity and Authenticity: A Blogger's Dilemma

As a writer, blogger, and participant in social media, I make choices everyday about how much to share of my family's lives. This responsibility takes on even greater meaning as I share the story of someone who is unable to participate in the sharing of his own story.

I do not take this responsibility lightly, but as someone recently called me, I am a staunch "defender of authenticity." I like to tell my truth on this blog, even though it doesn't always paint the prettiest picture of our lives.

Why do I do this? Well, for one thing it helps me. Blogging is, as they say, "cheaper than therapy"(though I pay for that too). Writing helps me process my feelings, and writing about even the hardest times lightens my soul and puts things in perspective. This also gives Jeff a break, since I can cry on my blog's shoulder once in a while instead of his.

Of course, I don't have to blog publicly to write my feelings, and I do keep a journal for more private thoughts (and a lot more swearing). But blogging also brings with it support. I get support from my community and I hope that I provide support for others.

On the other hand, I do believe I have the responsibility to correct some of the misconceptions about autism. Mainstream media outlets are quick to speculate, for example, about the autism diagnoses of the perpetrators of school shootings and this, among other stereotypes, is immensely harmful to the autistic community.

Media also love to share stories about remarkable individuals who "overcome" their diagnoses, or do amazing things despite their challenges. This is a more positive spin, certainly, but one that can be harmful in a different way. For one thing, these tales give a lot of false hope to parents like me, whose children may never have such accomplishments. For another, it sets the wrong expectation for the future needs of our children. Authenticity means being able to share a story of a severely disabled child who will grow to be a severely disabled man—a man who will require lifelong services, support, and resources.

Some bloggers just want to write happy blogs and there's nothing wrong with that. As for free therapy, research shows that people who express gratitude are in fact happier. According to Emmons & McCullough "in an experimental comparison, those who kept gratitude journals on a weekly basis exercised more regularly, reported fewer physical symptoms, felt better about their lives as a whole, and were more optimistic about the upcoming week compared to those who recorded hassles or neutral life events."

Others express the concern that their kids will one day read their blogs, and could be hurt to learn that their parents thought they were difficult. This is a real concern. But the truth is that in all likelihood Moe will never read this blog, although reading is a skill I long for him to have above almost any other. In case he ever is able to read and comprehend this blog, and because Moe is a person deserving of respect regardless of his abilities, I strive to always write first from a place of love.

Positivity and authenticity do not have to be in conflict. We have good times too, and I aim to share these more regularly. But I will continue to share the challenges as well. This parenting gig is tough, made even tougher with the uncertainties and struggles of autism in our lives. If there is anything I want other parents to know, it is that they are not alone. I never want someone to come here and think that if they are not all sunshine and roses, they are doing something wrong.

I Feel Your Pain

This is a post that has needed to be written for some time now.

If your kid was anxious or being bullied, how would you feel? Probably pretty bad. Your heart would ache, and though you'd be strong for your child, you would be crumpled inside. You would be heartbroken, yes? I would. It is how any loving parent might feel.

So why is it when a parent of an autistic child expresses their own pain as a parent, she is vilified?

If you are not involved in the online autism community, you are probably confused by this. If you are the parent of an autistic child, you are probably nodding your head. You've heard this argument before.

How can you possibly be talking about your own need for support? It is so much harder to be the autistic person. 

Pain is not a competition

My son's struggles are not mutually exclusive to mine. We can both be hurting, just as we can both be joyous or scared or hopeful or all of the above. I do not deny my son's challenges by recognizing my own.

Moe gets frustrated. His communication challenges make things very difficult for him. And when he is frustrated or unable to tell me that he is hurt, or uncomfortable, or bored, or he doesn't understand why I'm asking him to do something, or not letting him have m&ms at 7:00 in the morning, he can get aggressive. He cries, and bangs his head. He scratches me and bites his hand. He is strong and it is scary.

Of course I know he's hurting. Of course I know it is hard to be him. I am his mother, and I—as much as is humanly possible—feel his pain. I do not know what it is like to be him, but I see his struggle and I would give anything to make it easier for him.

Moe had three stitches in his forehead a few years ago, and, despite the numbing cream, screamed out in pain at each needle poke. I did not feel his physical pain but I will tell you this: if I could have taken that pain instead of him, I would have. It hurt me to my core to hear him scream. I remember that sound perfectly, though Moe has certainly forgotten it by now. This is no different.

Your feelings are legitimate

You are allowed to have feelings.

Let's say that again. You are allowed to have feelings. Not just your kid. Not just everyone around you. You.

Let's get real for a moment. Raising Moe is really hard. We have no real schooling options. We have made a decision to try some pretty serious medications to help keep Moe from hurting himself and others. I worry about Moe's future and the lack of housing options for him as he grows.

And it is really, really heartbreaking and stressful when your child attacks you. And it is even more heartbreaking to see that child hurting his sister, or himself.

So you know what? I get to feel those feelings of fear and stress and heartbreak as they exist. They are genuine and legitimate and no one gets to tell me otherwise.

Feelings are not inherently good or bad

Feelings just are. I can control how I react and use those feelings, but I cannot help having them.

So what?

Why is this important? Why give voice to what might seem a ridiculous discussion to anyone outside of this community? Because these kinds of arguments are tearing apart a community that should be working together. Because when you tell a mother that she shouldn't feel stress or anger or grief, you don't change her feelings, you push those feelings to a place of guilt and shame where they will simmer until they boil over. You deny a father the support and help he needs to be able to put his energy into helping his children. Because ultimately there is no one else. We as parents bear the burden and the joy, the responsibility and the privilege of caring for our kids.

And we're doing the best we can.

Ways to Connect

I've been struggling with figuring out how to connect with both kids. I've been struggling with the idea that I may never have a conversation with Moe of any sort, let alone a meaningful one. I know there is always hope but I have to be able to live with the current state as well.

And Jelly, who is an open book, is too much for me sometimes. She talks non-stop, has been testing us like crazy (“no I won't!”) and wears my patience thin. And yet, I cannot adequately explain my depth of feeling of connection with her. She is mine - and it is funny because when she was born, I didn't feel like I had the same connection with her I had with Moe. He was my little guy, and she was the intruder. Now I can't imagine how I could ever be without her.

So I've been trying to notice the ways I can connect with Moe, even without conversation. And like he knew I needed it, he did something the other day that he's never done before. He walked up to me. I flinched a bit, as I often do, with the anticipation of some sort of aggression or demand. But instead he leaned in, wrapped his arms around my legs and pressed his head into me. 

He hugged me.

Then I knelt down and opened my arms. He came in and hugged me all around. He squeezed hard. It was the best hug I've ever had in my life, truly. And then it was over, and despite my every attempt to get another one, there hasn't been one. I can ask Moe for a hug and he'll kind of lean in, arms down, and let me hug him, but until this weekend he had never come over to hug me.

There is so much pain in the realization that my six year old has never really hugged me before. But also so much joy in that small moment.

I had a great moment of connection with Jelly this weekend too. We were in the car together on Friday on her way home from school. She asked to play the soundtrack from Frozen, and I turned it on. We were riding down the highway, both singing along together. It made me so happy. I hope it made her happy too.

The S-Word

Friday night was one of the worst nights of my life. It wasn't the worst; I was with my brother the night he died. No one was injured (much). No marriages were ended or houses destroyed. But it was a night I hoped would never repeat itself, but has, to some degree, every night since.

I wrote a post about what happened, a play by play of the seven hours that Moe spent screaming. I decided that maybe such detail was better left for a private journal entry. Toward the end of the piece, however, I wrote this:

And this is where I will say what I try to avoid saying. Sometimes, autism sucks. I know that is hard to hear, and I am not trying to offend anyone. But it is our truth right now, and I dare say Moe might agree with me. For some, autism may bring great gifts alongside the challenges. But not here, not today.

I've spent the last few days trying to decide if I would post that statement. On the one hand, I know that many are offended when someone says "autism sucks." On the other hand, it was exactly how I felt.

Autism isn't just a disability. It is the very lens through which autistic people view the world. It is, to put it most simply, their brain. There is no Moe with autism and Moe without autism, so if I say "autism sucks," I am really saying "Moe's brain sucks," ergo Moe sucks. And how could I, as Moe's mom, the person who loves and cherishes him more than any other person in the world, think that, let alone say it out loud?

The flip side of that, however, is that autism is, for Moe, quite debilitating. After all, what is autism if not a disorder? We parents are often criticized for focusing only on the challenges of autism, and not the gifts. But without the disability, what is autism? In other words, if someone had all the "gifts" of autism (say, for example, Temple Grandin's astounding visual thinking skills), but none of the deficits, would she still be autistic? Can you ever separate the person and the disorder? Different people will have different answers to that question.

Moe's autism makes him unable to sleep. It makes him aggressive. It makes him unable to speak or clearly express his wishes, causing immense frustration. I can only guess that if Moe were able to make all of those challenges go away, he would. If behavior is communication, what does his scratching and biting say, if not "this sucks?"

But I cannot say what Moe thinks. I can only say what I think. And I think autism is really, really hard on our family. On days like today, when I've slept only three hours, I love Moe but I do not love autism. The idea that I cannot hold those two opposing views in my mind at the same time is someone else's construct. Not only can I make that distinction, but I do it every single day. I have to.

Scratches from earlier today

I have to believe that it is not him, but autism, that makes him grab fistfuls of my hair at one in the morning. I have to believe that it is not him, but autism, that makes him kick me in the chest when I change his pull-up. I have to believe that it is not him, but autism that makes him bang his head on the hard floor until we're worried he will really hurt himself. 

It is autism that makes him unable to sleep or speak, or use the bathroom, or play with his sister, or go to school. It is autism that makes it so that he can't say "Mommy, I love you."

I have to believe that he would if he could.


Because that is how I keep doing what I'm doing. That is how I get up every morning no matter how little sleep I've gotten and give Moe a hug and a kiss and get to work helping him be everything he can be. That is how I keep moving forward, fighting every single day for more for him, for more than just "appropriate." That is how I live in a house you wouldn't believe, with locks on every door, unable to even have curtains because Moe has pulled them down. To live in constant fear for his safety, now and forever. 

If I am going to be able to love Moe and fight for him, I need to be able to, once in a while, shout to the universe that "autism sucks!" and not be filled with guilt that it must mean I don't love my child. Because I do. Some days, that love is the only thing that keeps me going.

My beautiful boy

I am moderating comments, so yours will appear after approval. As always, respectful disagreement is welcome.

Becoming Special

About a week after my son was born, some friends came to meet the new baby. Carla, who also had an infant, made herself comfortable in an armchair, threw a blanket over her shoulder and started nursing. She looked at me, smiled blissfully, and said “wouldn’t you just jump in front of a bus for him?”

I didn’t want to admit how tired and frazzled I was. Everything, including that “natural” act of nursing had been a challenge. While not exactly opposed to being a mother, I hadn’t quite warmed up to the whole thing. I nodded my head and said something along the lines of “uh huh.”

My transition into the joys of motherhood took a little while. But I did adjust. I learned how to click the infant carrier out of the car and into the stroller. I wore my baby to the grocery store and stocked the freezer with homemade organic purees. My son and I went to play dates and music classes and at four months to the day we began sleep training. And soon enough, I loved my chubby baby with jump-in-front-of-a-bus ferocity. 

And then, just about the time that I was comfortable enough in my role as “mother” to have a second child - six weeks after that second child was born, in fact - a woman with a white coat and distinct Canadian accent looked at me and said “your son has autism.”

Once again I found myself not quite sure how to feel. Only this time, I had no time to get used to the idea of being a special needs parent; there was no “transition” about it. While there was no denying the diagnosis—the signs had been building for months—I couldn’t quite make sense of the words I had just heard.

There is an essay often given to parents of newly diagnosed special needs kids called “Welcome to Holland.” In the essay, you prepare for a trip to Italy. You read up on the culture, pack the right clothes, even learn some of the language. You board the plane. And when you disembark...you are in Holland. Holland is a beautiful place, with windmills and tulips and lovely people. But you were supposed to go to Italy. Pasta! Gelato! Buongiorno! And now you see only wooden shoes and salted herring.

After Moe's diagnosis, my son seemed a stranger to me. Though people told me “he’s the same child he was before the diagnosis,” it certainly didn’t feel that way. In a single instant, he went from a happy, mellow toddler with some speech delays to a kid whose entire future was uncertain. Would he ever speak? Have friends? Go to prom? Yes, in those first days, I thought about high school prom, that silly yet quintessential hallmark of adolescence.

Even the terminology sounded all wrong. How do I describe my son? What reason do I give when I explain that we can’t go to playdates anymore because Moe has 25 hours a week of therapy? I practiced when I met new people. “He has special needs.” “He is developmentally delayed.” “He has autism.” “He is autistic.” 

I started reading blogs by people who called themselves “autism moms” or “special needs moms.” Was that me? I mean, I don’t have the special needs. “Mom to a child with special needs” was just unwieldy. They were accurate, but nothing felt right. How could this possibly be my life?

And all the things people said to make me feel better only made me angry.

God only gives you what you can handle.

Everything happens for a reason.

Special kids go to special parents.

I resented all of it. They say that people with autism have difficulty with transitions, but I was the one who couldn’t accept this new role. I didn’t want special. I didn’t want different. I just wanted my son back.

I spent hours looking for cures, researching diets or methodologies that would help my son “recover” from autism. I read blog after blog about kids who accomplished so much more than experts said they would. They graduated from college. They got married. Some of them even went to prom! And every so often, Moe would do something so “normal” that I knew in the core of my being that he would be okay. That he, too, would be a success story.

In the four years since Moe's diagnosis, I’d like to say that things have gotten easier for us. I want to share with you that story of amazing progress, of undiscovered talents or remarkable beauty. But that is not our story, at least not yet. In many ways, things have gotten harder. My son, who is approaching six years old, doesn’t speak. He is not toilet trained, can be aggressive and often goes for weeks without sleeping through the night. His disability and behaviors became so challenging last year that we pulled him out of school so he could return to a full time in-home therapy program.

I’m not yet comfortable with the life my son is forced to lead, though I suppose he isn’t forced any more than any of us are forced into our own neurologies. I’m not comfortable with the praises that are automatically given to parents of special needs kids. I’m not comfortable with the scratches and bruises I’ve acquired when Moe becomes frustrated at not being able to communicate his needs. I’m not comfortable with the uncertainty of his future, with the knowledge that my husband and I will never be empty-nesters or with the ongoing fights with school districts, insurance companies and therapy providers to make sure that my son is safe, educated, and treated with respect.

But some transitions happen no matter how hard we fight them. I am no longer a tourist in this foreign country. I know the terminology, able to throw around acronyms with the best of them. I have learned to speak Dutch, as it were. I have become adept at advocating for Moe's needs and have immersed myself in local and online communities of special needs moms, some of whom have autism themselves.

I am no longer trying to cure my son or make him into the “normal” child I expected to have. I wear proudly the title of autism mom, just as I want Moe to grow to be a proud autistic adult.

I am Moe's mom. It is a special role indeed.

Things Change

I wanted dark wood.

The walls were light green with white wainscoting and I thought dark wood furniture would make the room feel more grounded. Modern. Just right for my baby boy.

A couple years later, dark finishes would be everywhere, but at the time blond wood was the fashion. I found a crib with an espresso finish, but couldn't find a dresser that was just right: big enough and not too tall so it could double as a changing table.

We found an unfinished dresser. The dresser, in itself, was nothing special. Pine. Simple. But the work we put into it was the very definition of a labor of love.

Jeff stained it to match the crib. I added jungle animal drawer knobs, lined the bottom with shelf paper and filled the drawers with baby clothes.

The top right drawer held diapers. Socks in the middle drawer. Jammies on the left.

As Moe grew, the contents evolved. The bottom drawer had to give up its blankets to make room for shorts and swimsuits. Jeans and t-shirts replaced onesies.

Other things changed. Chewies and sensory items, stretchy vests and a bright green body sock found their home in the top left drawer. Some things stayed the same. Diapers, replaced by pull-ups but diapers nonetheless, remained in the top right drawer.

Last weekend, we had to donate the dresser. Moe had been sleeping in a bed tent, and after a year or so of being climbed on, one of the poles broke. The tents are on back order and we needed a change. So we took down the tent, and to keep Moe safe we took all the other furniture too. The toy chest went to his sister's room. The swing and his little work table can be relocated every night. But there was no place to put the dresser. It had to go.

Jeff brought the dresser to Goodwill. They almost didn't take it at first, but thankfully they did. I busied myself fighting holiday traffic (already!) to get a set of drawers that would fit in Moe's closet. It was the right thing, the safe decision.

The next day I had another donation to make, this time of outgrown clothes that I had collected emptying the drawers. I drove back to Goodwill, and I couldn't help myself. I went inside.

And there it sat. My dresser. I tightened the drawer knob that always came loose. I knew it was just a thing. But that thing had seen us through a journey. A journey that began with hopes and dreams and the cutest little baby you've ever seen. And just as those hopes and dreams have had to be adjusted since Moe's (still the cutest boy you've ever seen) diagnosis, some practical things have had to be adjusted too.

Waiting to be purchased

Even so, I cried on the way home.

- - - - - - - - - - - - - - -
Originally posted at Hopeful Parents, where I contribute on the 14th of every month

To Friends

In the three years I've been writing this blog, I've connected online with many parents of autistic or other special needs children and adults. Through Facebook, I'm able to have conversations with some of the smartest, funniest, kindest people all over the world, from Australia to New York, North Carolina to Berkeley. These are people who get it, who know what to say to each other when we're hurting, who prop each other up when we're down, and make each other laugh when it seems the world will come crashing down.

Sometimes one of these people will lament the loss of a friend or family member. Someone who didn't want to be around "all this autism." Or someone who got a little too judgmental about the parenting of a special needs child, even though she doesn't have one of her own. Who had an negative opinion about  their decision to medicate, or how they discipline, or what the kids will eat, or any other of the things we delicately balance every day. Sometimes these friendships end abruptly, and other times simply disintegrate from disuse, lifestyles no longer compatible. It happens.

But I am lucky. I have not lost one single friend or family member since Moe's diagnosis. In fact, I have some really great friends who have shown how great they really are. They make an effort to connect. They understand that I have to say no more often than not and continue to invite me anyway. They ask me about Moe and his school and they care about my answers. And when I don't want to talk about autism anymore, we talk about other things.

The other day, one of these friends said, "we miss Moe." I don't know if she realized it, but that was, to me, a remarkable thing to say. Because while Moe is still running around like our kids did when they were toddlers, their kids are in kindergarten, and riding bikes and scooters, and playing and making mischief of one kind and another. I am not as close to many of these friends as I was when I saw them every week, and I am sometimes a little bit jealous of how much they see each other and involved they are in each others' lives, but they always welcome me in, on whatever terms I need.

I'd like to say that this is because I am the most interesting woman in the world, and that they are just happy to have whatever time with me they can. But really it is a testimony to them. To their openness and intelligence and all around loveliness. And I got to spend last weekend with several of them in one of the most beautiful places in the world.

They are also funny as hell. And they catch me when I run to them.

Not Sweating the Not So Small Stuff

It's the 14th of the month, and that means I'm over at Hopeful Parents today! Come read about something I'm not stressed about for once.

 

 

Posted with Blogsy

Always Something There to Remind Me

There is a kid at Moe's former school who looks just like Moe. He is maybe a year or two older and has the same curly hair and fair complexion, though I never saw his face. This boy was not in a special education class but I would often see him as school let out for the afternoon. As I waited for Moe, this boy would walk by and for a brief moment I'd think "why is Moe over there by himself?" Sometimes I'd allow the fantasy to go a little bit further, imagining that this was Moe, walking nicely by himself, looking for me. I imagined that the last five years had been a dream, that I would wake up and that this child would be my own, just as beautiful, just as sweet, but just another typical kid in the crowd.

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There are a couple of families in the neighborhood with developmentally disabled kids. The girl, who is maybe twelve or thirteen, often has vocal tics or stims, possibly Tourette's. She yelps and shrieks as she walks by (not an unfamiliar sound, though different from Moe's). The boy, who is probably around 18, usually holds a child's toy when he walks. I think it might be a radio. I don't know them, have never exchanged more than a passing nod, as they walk around the neighborhood. They all seem happy enough, or at least content, but I can't help but notice how old the parents look. They look so very tired, like they haven't slept in years. They look like my future. I wonder, when we stroll by, if they look at me and see their past.

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Earlier this summer, I was invited to the graduation ceremony for Moe's playgroup. Moe hasn't done much with that group since he was two, though I'm still friends with several of the women. The ceremony was a way to celebrate the kids moving on to kindergarten, graduating from babyhood into their school years. The invitation tore me to shreds. I knew we couldn't go. Moe wouldn't sit still for a ceremony. He wouldn't understand why we were there, wouldn't behave appropriately. And I didn't want to see him there, surrounded by typical kids, the only one not full of words and readiness to take on this new chapter. These children were all babies together; Moe used to be just like them. But didn't he deserve to go? Didn't he make it through five years just like the rest of them? On his own path, different in so many ways, but here nonetheless. Didn't I deserve, maybe more than anybody, to say "I survived. Am surviving?"

We didn't go.

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Today is the first day of school in this area. My Facebook feed is full of first day of kindergarten pictures. Friends with kids I've known since they were babies, since Moe was a baby. I didn't expect heartbreak today, didn't prepare for the crushing emotion. Today, I am having a hard time breathing, having trouble finding solace in the small crumbs of progress Moe throws me occasionally. I don't begrudge anyone these pictures. I posted my own "first day" picture as Jelly returned to preschool. And I will take a photo of Moe next week, when he starts his new school. I am hopeful about this year, anxious to get started. But it isn't the same. We are different. He is different. And there is always something there to remind me.

An Unnatural Position

Moe has a great laugh. Sometimes I hear this laugh, a sweet giggle that is pure joy, when he's watching TV or we're in the car. Occasionally, during a rare moment when I can get Moe to play, he'll let out a genuine, adorable belly laugh.

But Moe also has another laugh. To the untrained ear, this laugh sounds a lot like the first laugh. But trust me, it is different. This is the manic laugh, the one that escalates, the one that starts and does not stop. This laugh is not in response to a game or a joke, but comes from inside, from a place I do not understand. This laugh is a warning.

It is a warning that Moe is overstimulated. It is a warning that he is not able to control his impulses. It is a warning that he won't be sleeping any time soon, that I need to be on high alert because he is going to grab the dog or pull Jelly's hair. And he better not need a diaper change because it might be nearly impossible to accomplish.

Sometimes Moe wakes up laughing like this, and I know it is going to be a rough day. As parents, we innately want to hear our kids' laughter. In those earliest sleep deprived days, we are propelled forward by our baby's first smile. And just when we wonder how we will make it through another spit-up covered day, we hear our child's first laugh, and are energized once again.

But if ABA has taught me anything, it is that we humans are, as all animals, creatures of behavior and conditioning. And though the power of motherhood is strong, we cannot deny our Pavlovian dispositions. And my life, turned upside down in a myriad of ways, is one in which my son's laughter fills me with dread. I hear Moe laugh and my heart sinks.

It is an unnatural position, an uncomfortable contortion of emotion.

I suppose I am lucky. Moe doesn't have tantrums. He survives trips to Target and is able to eat at a restaurant largely without incident. He rarely cries. If, on a trip to the grocery store, Moe begins to giggle wildly, the stares will largely be of the "aww, isn't he cute" kind, rather than the "I wish she'd control her kid" kind. Not that it matters what anyone else thinks, but I'll take what I can get.

I cannot tell if Moe is happy when he's giggling wildly. I suspect not, that he doesn't enjoy that his mind and body are out of control, or at least I suspect they are. Sometimes he calms down by finding a quiet space, in a closet or reading a book in his room. Though sometimes he seems to try to make the feeling continue, spinning wildly or running back and forth. I imagine it is like a drug, that high feeling, one he wants to continue. And all I can do is try to help him come down gently, and not get hurt in the process.

A mother, trying to stop her son from laughing.

My Uncle and the Yellow Beetle

After I graduated from business school and moved back to California, I bought my first new car: a 2000 yellow New Beetle. It had a manual transmission, and though I had driven a stick shift for several years, the new car felt different. The clutch was stiffer, and had that German push-down to get into reverse thing. It took me several minutes to get out of the dealer parking lot.

When speaking with my uncle about the new car, he told me "Don't worry. Soon it will feel like an old friend."

It's like this with all big transitions, isn't it? Anxiety builds as changes approach, but soon enough, what is new becomes the status quo.

We are just two and a half weeks away from the start of the new school year. I am nervous about the new school, about how Moe and I will respond to the long drive each morning, about being so far from Jelly's school, about hiring help to care for her. Our days will once again be turned upside down but I know, soon enough, it will all be routine.

Jelly Makes Her Mark

Today was Jelly's last day of her first year of preschool. I wanted to make a big deal of it, help her say good bye to her friends and teachers. But I also had to pick her up a little early, in order to make it to a small end of year celebration in Moe's class. As I walked to Jelly's classroom, I noticed a piece of paper sticking out of her folder, the words "Incident Report," peeking over the top.

I wasn't too concerned. I assumed she got hurt, but since they hadn't called during the day, I knew it couldn't have been too bad. I glanced at the page. "Jelly bit another child..." I had to read it again, thinking that couldn't be right; someone else must have bitten her. Nope. Jelly bit another kid in a skirmish over a toy.

Jelly has been very possessive of toys lately, but she has never once tried to bite someone. I was - still am - shocked. Of course I can't help but wonder if it is my fault. She's been battling control over everything lately. Recently Moe, in a moment of frustration at Home Depot, grabbed Jelly's hair, catching his nail on her nose and scratching her so she bled. Has she started imitating Moe's bad behaviors, even though of course we try to stop those? Is this yet another attention getting behavior?

I know this happens with preschoolers. I have been down this road before with Moe, but of course that was a much different situation. I even said to my mom, "she's supposed to be the easy one."

And that is when it hit me. Parenting--all parenting--is hard. Typical or special needs, all kids need guidance and care and time. All kids need to grow and mature and learn lessons. Little Jelly has been so far ahead in terms of language development that I often forget she is just barely three.

Frankly, we've all been off our game lately. We are sleep deprived and fighting colds and possibly seasonal allergies. There is a new and completely stressful drop-off and pick-up procedure at school that requires me to walk both kids across campus among the swarm of kids at the end of the day. I have been preoccupied (since February!) with Moe's IEP, getting him new services and figuring out this summer. And as the year wraps up, and things are still very much in limbo, I've been an emotional wreck, only made worse by Jelly's frequent 3 am wakings and Moe's exhausting relapse into aggressive and unregulated behavior (though also more attempts at some communication). Did I mention our master bathroom is gutted?

And tomorrow is Moe's last day of school.

My Excuse

I have so much to blog about but just have not been able to. Some things, like the details of our latest IEP, I can't write about now. Other things, I would love to write about, but the kids really do require constant attention. Here's a snippet from today.

1. Jelly is momentarily occupied watching TV.
2. I hear a noise from Moe's room. He's on top of his bed, messing with the blinds. He's already broken one of the strings so he really can't be up there. Oh, and he could fall. I get him down.
3. Moe runs from the room. I start to make dinner which will take all of 5 minutes because I'm just reheating leftovers. Moe starts asking (pointing to the gate) to come in the kitchen. I notice he has a dirty diaper.
4. I bring him to his room to change him. He's wild, tired, and hungry and starts grabbing and kicking me. I know he's trying to tell me he wants to be eating, but I'm so flippin' tired of being kicked every time I change a diaper.
5. I get through it, and nearly trip over the dog who insists on being in the way whenever there is any commotion. I make it back to the kitchen.
6. Plate the quiche and and the chips I didn't eat at lunch. (Surely, I will lose at least a pound for that, right?) The chips entice Jelly to come to the table. I go look for Moe.
7. He is once again on top of his bed. I get him down. On the way back to the dinner table, I notice Jelly's shutters are open, and the valance is messed up. I see Moe has somehow gotten the finial off. I suspect he's been working on that for days. I pick it up and put it "someplace safe" for when I can get a step stool or Jeff gets home. It's probably already lost.
8. Safely at dinner, I get exactly 23 seconds before Jelly pushes herself back from the table. She gets down to retrieve her new Dora bathing suit which she has been carrying around all day. She climbed back up and asks to be pushed back in. I get up, and push her in. "Jelly," I tell her, "don't get down again."
9. She pushes herself back from the table. I push her back in. Repeat 1,000 times.
10. "Jelly, no more chips if you push yourself back again." It works!
11. Moe gets down from dinner table. I make him sign "all done." I feel like I've done my job.
12. I hear Moe on top of the bed tent. I trip over the dog. I get Moe down from his bed.
13. He comes back. I slice an apple so we can work on using a picture card to request more.
14. He doesn't want any apple.
15. Jelly starts asking for tape. I tell her no. She asks. I tell her no. She asks. I tell her no. Sheasksitellhernosheasksitellhernosheasksitellherno. She wants tape to cover a staple sized hole in the baby gate. I tell her she can have one piece of tape if she stops asking. She is quiet, but I can tell it is really hard. It is worth it for the 30 seconds of silence.
16. I trip over the dog looking for the tape. I give a piece to Jelly.
17. Moe is spinning wildly in his swing. I decide he needs a bath. I trip over the dog.
18. Jelly hits me while Moe is in the bath and I am writing this. She gets a time out, which involves taking away the Dora bathing suit.
19. I think I hear Jeff pulling into the garage. There is only one question left. Beer or wine?

Finding the Right Door

Can I tell you a secret? I really wanted to win that essay contest. Of course, ego has something to do with it. Competitiveness. A desire for validation. To state the obvious: no one likes to lose.

But there's more to it than that. I really thought I might win. And I had this feeling that by doing so, some door might open that would give me a clue as to what is next for me. It wasn't even I door I knew I wanted opened, but when I found it slightly ajar, I really wanted to see what was on the other side. And now that door is closed. C'est la vie.

But now I'm staring at a closed door, wondering what's next. I've been working so hard to figure out what's next for our family, especially for Moe, that I'm not really sure where I fit in anymore. Not as Mom, but as me.

You see, I never really wanted to be a stay at home mom. Oh sure, I wanted to try it for a while. When I was pregnant with Moe, it felt like an inflection point in my career, and I was more than happy to take a short break and spend some time with my newborn. But I always pictured myself with both a family and a career. I imagined myself rushing around in the mornings, getting ready for work, dropping the kids off at day care on the way. Life would be so busy! I guess a lot has changed about that picture in my head.

I know many parents, especially moms, face this dilemma, but my choice is clear: it is better for Moe if I am not working. This is the Right Thing. But I feel like I've lost a little bit of myself.

This is not Moe's fault. This is no one's fault. This is just the circumstance of my life.

I am not especially unhappy being at home. It just isn't who I am and I need to figure out a way to get some of that back. Blogging regularly again is a start, but it isn't the whole answer.

They say that when one door closes, another one opens. I seem to have misplaced my keys.

Lost

As you know, I was recently selected as a semi-finalist (top eighteen) in the Notes and Words essay contest. Although I was disappointed to learn last night that I did not make the top 5, I am proud that I can finally share the piece with you here.


The bracelet arrived in the mail, small and shiny. I put it on my son’s four-year-old wrist, fumbling with the clasp.

For a few days, we both were acutely aware of its presence. When I tried to put it on him in the morning, Moe would squirm. I’d curse under my breath as I struggled to take it off at bath time. His wrist was pink where he tried to bite it.

I thought of the kids who wore this type of medical jewelry when I was young. The kid with the peanut allergy. “You can’t even use the same spoon as the batch with the nuts” my mom would tell me, “or he could die.” The diabetic kid at camp—the one I pretended not to stare at whenever he took out his kit.  My friend with epilepsy.

But Moe doesn’t have any of those things. In fact, Moe doesn’t have anything. My son wears a bracelet because of what he is, and what he might do.

Moe is autistic.

Moe doesn’t speak. He is unlikely to respond to his name. And he loves to run.

Like many kids on the autism spectrum, Moe attends a special education day class. My husband drops him off in the morning, and six hours later, I pick him up, chatting with the other moms as we wait for the teachers to bring out our kids.

Every day, I spy my little Moe, with his blue eyes and curly blond hair, walking hand in hand with one of the people I entrust with his education and his care. Every day they bring him back to me.

Except one day, when they didn’t.

I wasn’t worried at first. Moe’s class is often last to appear, as they are the smallest bunch, preschoolers slowed down by oversized backpacks and the frequent need to investigate some bug or crack in the sidewalk. But when the rest of the class had arrived and I signaled to his teacher, she made an excuse about a forgotten backpack. I saw her run back toward the classroom, and I knew.

They had lost my little boy.

For a few minutes, I waited there, the still center of a time lapse photo.  The other parents left. Teachers went back to their classrooms. The bus came and went. And I stood there, waiting.

During those seven or eight minutes, I thought of Moe’s bracelet—the one that had finally become part of his morning routine, the one he still fiddled with but no longer fought against. Why had I put so much faith in that thin piece of metal? It couldn’t keep him safe from the creek running behind the school, or getting hit by a car, or lost in the sea of children leaving school.

I still don’t know who found Moe, who had slipped into an empty classroom. His teacher brought him to me like nothing had happened. I cried on the drive home.

Later that day, Moe was wild. He ran maniacally around the house, screeching and crashing into the walls. I dodged his attempts to bite me as I wrestled him to the floor for a diaper change. His nails, overgrown because he refused to let me cut them, scratched red marks into my neck.

I was bursting with rage. Why couldn’t Moe just control himself?  Why did everything have to be so difficult?

And why wasn’t I strong enough to handle it with grace and good humor?

F. Scott Fitzgerald wrote that the test of a first-rate intelligence is the ability to hold two opposed ideas at the same time, yet still retain the ability to function. To be able to see, for example, that things are hopeless and yet be determined to make them otherwise.

By that definition, I must be a genius.

We parents of special needs kids face overwhelming joy and sadness, intense love and frustration, breathtaking wonder and fear—often in the course of a single day. We work tirelessly to help our kids succeed in the world, even when we have no idea what that success will look like. We are given so much reason to be hopeless, and yet, sometimes hope alone propels us forward.

And so it is that I send Moe out into the world every day, offering the only protection I can give him: hope, a hug, and a small silver bracelet.

A Visit to the ER (Part 2)

We do what we can to protect our children. We vaccinate. (Or not. Let's not go there today.) We keep sharp knives off the counter and we cover the electrical outlets. But as I found out on Wednesday, kids find a way to injure themselves anyway.

To continue with our story, we got to the emergency room at a small, local hospital that we had never been to before. As emergency rooms go, it wasn't too bad. Jeff pointed out, "no bullet proof glass!" But all ER visits require the one thing Moe hates to do: wait. But wait we did, first in the waiting room, then in our little curtained-off cubicle.

I was pretty calm while we were waiting. It helped that Moe was no longer bleeding, and that the triage nurse put some gauze over his cut so I wasn't staring at my failure as mother it. It was about this time that I realized that we had left the house in such a hurry that I neglected to get either a shirt or shoes for Moe. It was cold in the waiting room, but he didn't seem to mind.

When we were taken back to the area with the beds, I got really nervous. Fortunately, we had at least another 30 minutes of waiting for that to wear off.

The doctor finally came in. He was young and very nice, and he confirmed that Moe would need three or four stitches. We told him that Moe was autistic so wouldn't be able to understand his directions. The doctor was incredibly kind to us and Moe. I was concerned that Moe wouldn't be able to stay still for the stitches. It turns out that most four year olds won't stay still for stitches, and he knew just what to do.

They started by putting a topical anesthesia on the area. Then we had to wait 20-30 minutes. We gave Moe a snack and changed his diaper. Moe played with my iPhone. I reversed the camera and showed him how to take pictures of himself. (Side note: why did I never think to show him that before?)

About 45 minutes later, the doctor and RN (an awesome guy with a hilarious southern accent that I can only describe, with apologies, as "redneck") came back with their tray of medieval torture devices. We swaddled Moe in a sheet, something we do in OT for calming. He was okay. Jeff held Moe's torso. The RN held his head still. And the doctor started with the Lidocaine injections.

The first shot wasn't too bad. Moe cried a bit, but it didn't seem horrible. But the second shot, which seemed a bit more directly into the wound, hurt. Moe screamed something like I've never heard from him before. I felt it physically. Even though I knew I it was necessary, that sound has stayed with me. And Moe never stopped crying - hard - through the whole process, from two more Lidocaine shots, to cleaning out the cut with water, to three stitches.

Despite the Lidocaine, I swear Moe could feel that first stitch going in. The doctor said he didn't think so. After the painful shots, I'm sure Moe was scared, didn't like his head being held so tightly. Coincidentally, one of my BFF's kids had the exact same injury when he was little, and she also said he didn't recover during the process.

As you can see, the cut is 2 feet long and
required 117 stitches.

As soon as they were done, and Jeff picked him up, Moe was completely fine. No more tears at all. But I haven't quite recovered. I can still see his hands covered in blood and a gaping wound on his head. I can still hear his scream from that shot, and see the fear in his eyes as that first stitch went in. In the scheme of things, this was minor. How do parents watch their kids suffer through worse? I hope I never know.

Also, I'm not looking forward next week, when Moe gets his stitches removed.

It is, however, strangely nice to write about this. Moe's autism had very little to do with what happened or how the process went. Through all the waiting, he was so well behaved in the ER. He hasn't been messing with his stitches, and he's letting me put antibiotic ointment on it. I wish it had never happened, but sometimes it is nice to have typical parenting stuff to talk about.

That reminds me: I must ask our realtor to make sure our next house has padded walls.

A Visit to the ER (Part 1)

Yesterday started off like any other day. I was excited because my BFF and her two boys were coming over for dinner. I made pizza dough in the morning, Jelly and I had the first day of the new session of music class, and things seemed under control. Oh, how wrong I was.

A little after 4:00, Jelly was watching Sesame Street and Moe was doing what he always does when the TV is on: watches a bit, runs down to his room, plays a bit, and comes back. He doesn't sit still for long. If he's out of my sight for too long, and I can't hear what he's doing, I check on him, and often will find him in some precarious spot like the top of his toy bin or standing on his dresser.

He's also a little bit clumsy. I'm sure this is because of his motor delays and nothing to do with my athletic prowess. It isn't unusual for him to trip occasionally as he runs down the hall. So yesterday, when Moe tripped in the living room, I barely even looked up. He wasn't on top of a bookshelf or swivel chair; he was maybe ten feet away from me. But Moe never cries when he falls. He always just gets back up. He cries when he's hungry or frustrated, but like many kids on the spectrum, he seems to have a very high pain tolerance or experience pain differently than you and I. So when he didn't get up from the ground, had his head buried in his hands, and started crying, I went to him.

And when I picked up his head, all I saw was blood. I ran to get a clean towel, and see what was going on. It wasn't his teeth or eyes, but a pretty deep cut on his forehead. I was worried at first that he actually landed on something, but that didn't seem to be the case, so I just held him and applied direct pressure.

Jelly was aware of what was going on, but since she doesn't understand blood yet, she wasn't too freaked out. The dog, ever sensitive to the slightest increase in stress in the room, immediately started barking. She always knows how to make a difficult situation just a little bit harder.

At that point, I was a little stumped. I didn't want to just put the kids in the car and run to the ER, since I felt like I needed to keep applying pressure to the wound. (At what point does a cut qualify as a wound?) After a minute, I ran for the phone, called Jeff and told him to come home. I also called my BFF, who was supposed to be coming in another half hour or so, to come right away.

Then I waited, holding Moe and the towel. After about 10 minutes, Moe did not want to sit still. He was not amused at the towel I still insisted on holding to his head, and kept trying to go to the table for a snack. Both Jeff and the BFF called, but between Moe's crying and the dog barking, I couldn't hear a thing. All I could say was "just come here." She arrived in about 15 minutes, and Jeff was right behind her. Apparently, he made some daring traffic moves right in front of a cop, but fortunately did not get pulled over.

By the time we got in the car, Moe had stopped bleeding, but it was pretty clear he was going to need stitches. He now has three of them. That story tomorrow...