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.

Knowing Me, Knowing You

How many times have I said "if only I could get inside Moe's brain for a day?" When my online book group, From Left To Write, announced we were reading "Raising Cubby: A Father and Son's Adventures with Asperger's, Trains, Tractors and High Explosives," I jumped at the chance to read a book written by an adult with autism. (I have also read John Elder Robison's first memoir, Look Me in the Eye.)

I have very little insight into how Moe thinks and feels. His processing of the world must be so different from mine. I imagine it is based much more on sensation and impulse, that he thinks, as Temple Grandin puts it, "in pictures" rather than words. How does the world sound to him? Look? When he covers his ears when the wind blows, is it because the sound hurts him? Or does he like the way it sounds when he covers his ears, just like he seems to enjoy laying on his back in the bath with his ears just below the water? I can only guess.

I know how Moe behaves in certain situations. I have a general sense of how Moe communicates his needs, what his various sounds and gestures mean. We make it through each day, somehow piecing together each other's demands. Clumsy as it is, it usually works. But sometimes there are things I can't puzzle out. Is he frustrated? Not feeling well? Hungry or thirsty or cold? Sometimes, he may himself not know; he is only five and still developing emotionally. But sometimes, I know he's trying to tell me what he needs, and I can't figure it out.

Reading the words of autistic adults can help. In many ways, they are perfectly suited to explain how it feels to have different sensory processing needs, why eye contact can be so challenging, or how to calm a restless body and mind. I do my best to listen. As Moe grows older, I hope that we will find some autistic adults who can help him understand his body and mind in a way I cannot.

But the thing that struck me most about this book, is how little the fact that John Robison had Asperger's seemed to help him raise his son, who was also later diagnosed with the same disorder. Although Robison suggests that some of this lack of insight may have been because he has Asperger's himself, that isn't the whole picture. The fact is that Cubby (the nickname Robison gives his son) is very different from his father. Cubby is outgoing and smart, but disorganized and has difficulty with executive functioning skills. He has some obsessive compulsive behaviors, like hand washing and hair brushing. John, on the other hand, struggles more with social behaviors. Both father and son have Asperger's, but it doesn't necessarily bring them much closer to understanding each other.

Sometimes we neurotypical (i.e. not autistic) parents of autistic kids are made to feel that we cannot possibly understand our autistic children. That the therapeutic approach many of us take to helping them succeed is inappropriate. That ABA methodologies are nothing short of abusive. These words sting--how could they not? We are told that others know better what our kids need.

I don't believe it.

Moe's autism is uniquely his. And while some of his experiences may very closely resemble the experiences of some other autistic people, others experiences may more closely resemble my own. He loves to have his feet rubbed, for example. So do I. Some people hate to have their feet touched. This probably has absolutely nothing to do with autism, but there is no way to know where the line begins. Moe's primary area of need is with language and communication. I can look at other people with autism and see how they have learned to communication, but those methods won't necessarily work for Moe.

In the end, we each have a unique perspective on the world. There are a billion factors involved, and who says who might understand Moe best? All I know is it is my job to try, and one I do with love and the best of intentions every single day.

This post was inspired by Raising Cubby: A Father and Son’s Adventures with Asperger’s, Trains, Tractors, and High Explosives by John Elder Robison. Parenting is a challenging job, but what challenges does a parent with Asperger's face? Join From Left to Write on March 12 as we discuss Raising Cubby. As a member, I received a copy of the book for review purposes.

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.

Scenes from My Life

I arrived early at Moe's school. Jelly was in the backseat with the iPad, my new strategy for keeping her happy and in the car. The school secretary called out to another parent "is that Moe's mom?" and all I could think was, "What now?"

A few minutes later, they brought out a weepy Moe. They weren't sure what was wrong, but I suspect that his being up a 4:00 in the morning was a part of it.

Moe was okay at home, but certainly whiny and unhappy. I decided to give him a bath, the one thing I can usually get him to do for more than thirty seconds.

At that point, Jelly was sitting at the table, still playing with the iPad, when she started screaming "fix it!" The battery had (thankfully) run out. I tried to explain to Jelly that I had to charge it up, that it wouldn't work, etc. but she, being two, was not having any of it. She threw a fit.

I left her to it, to go run Moe's bath. He got into the bath and immediately started crying, then screaming and whining. The water temperature was fine, so I'm pretty sure it was a sensory overload thing, but at that moment all I could hear was two simultaneous meltdowns.

I clicked my heels three times but I was already home.

I ignored Jelly, having learned that the best way to negotiate with a two year old is to just avoid the whole thing altogether. She isn't crying now, so I guess she stopped at some point.

I took Moe out of the bath, did some tight squeezes with the towel, and got him dressed. He seemed better, and went to his room to swing, so I started to make dinner. This involved preheating the oven for a frozen pizza organic flat bread.

The dog, meanwhile, had been scratching to go out, but I had been ignoring her because I now have to escort her on leash. Our neighbor's dog, a very aggressive golden retriever, has been spending a lot of time outside because our neighbor has been having work done on her house. So Berkeley and this dog have been fighting through the fence, and actually scratched a hole through it. But I was tired of the whining at the door, so I let her out anyway.

I heard an unfamiliar noise and went to investigate. I found Moe in my bathroom, pumping shampoo all over himself and the floor. He was covered in it as well, but at least he smelled good. I tore his clothes off and started to clean up the mess, when I heard Berkeley fighting at the fence. Dammit!

I called her in with the magic words "want cheese?" and got Moe, who was then whining at me because he was ready for dinner. Thank goodness the oven was already preheated.

Sandwiched?

I’ve been lucky to have avoided the issues plaguing some of my friends in this sandwich generation of ours. In the past year, two of my good friends have had their fathers pass away, and one of them is now managing her mother’s care, from housing and finances to dialysis and medical appointments. This friend also has a two year old.

But like I said, I’ve been lucky...

To read the rest of this post, follow me over to Hopeful Parents, where I write on the 14th of every month.