Hulk Smash

Food Coloring Monster

When people feel sorry for me and Atticus over the fact that he can’t walk, I always scoff at them and make inappropriate jokes about how awesome it is to have a kid that stays where we put him. It’s my dark humor helping me cope once again, while recognizing that it is actually kind of great to not have to babyproof and worry about messes and deal with injuries caused by playing too hard.

Those days are officially behind us.

We’ve now had an ER trip for one head bonk and had to cope with another one when he fell off the stair he was playing on, the other day I walked in to find him throwing all his bath toys in the toilet, and now he has gotten into Bear’s baking cabinet, found the giant bottle of green food coloring, and decorated his whole self with it.

And of course, OF COURSE, this sudden burst of precociousness would occur while I am parenting him on my own. Of course he would save up all his mischievousness and mobility for the moment it would drive me the absolute craziest. He’s a wily little sucker.

So on the food coloring day, I did my best not to eat my young, remembered my sense of humor and stopped to take pictures, and then calmly tossed him in the bathtub. The second his toes touched the water a cloud of green rose around him, so I took out his favorite foam letter bath toys so they wouldn’t get stained, throwing them in the toy basket we keep next to the tub. I scrubbed his face and I scrubbed his hands and left him to soak while I saw to the kitchen and my newly verdant tile.

By the time I came back to check on him, my little monster was doing a handstand with his naked booty in the air, balancing his legs on the tub while holding his whole body up with one arm while he used the other to reach for his bath toys and bring them into the water one by one.

Part of me wanted to shake him, and part of me wanted to collapse in awe at the physical feat he was performing.

That’s what I try to remind myself whenever his precociousness makes me bonkers. When he talks back in ways so clever I can’t help but laugh, when he finds brilliant little ways to problem solve around my discipline, when he manages to use his body in ways his therapists and I would never have believed possible to get into something he knows he shouldn’t, I swallow that impulse to scream, I take a deep breath, and I tell myself that this is what is going to get him the life he wants. He might have cerebral palsy, but it doesn’t have him.

If he can make it to adulthood without me killing him, he’s going to be able to do whatever he wants.

Speaking my needs

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Sunday was our most recent rehearsal for the upcoming Listen To Your Mother show, and I am relishing every moment of my involvement with these women. They are such a joy. After our run through, a bunch of us walked up the block for gourmet pizza and I ordered two meals like a glutton just so I could have leftovers. I love this place.

We were walking back to our cars, me in my signature high heels, arms loaded down with leftover boxes and eyes focused on reading a pamphlet about a local historical restoration project, when I looked up just in time to see I was walking into a tree. So I stepped to the side, right into a pothole. My heel wobbled, time slowed, and I saw that I was not going to be able to recover. My arms full and unavailable for catching myself, my subconscious lizard brain took over and without even realizing what I was saying, I heard my voice go, “Somebody save me!”

I still laugh hysterically when I think what I must have looked like to everyone else, holding my pizza box and flailing around, screaming for help. But Sarah just took one step forward, opened her arms, and kept me from breaking my face open on the pavement. She ended what could have been a disastrous fall with a hug.

Since then I’ve been thinking about my reaction. “Somebody save me.” From deep within my subconscious, so deep it passed the more common sense thought of just dropping the pizza boxes or not walking into trees, that expression welled up in time for someone else to act on it. It is a classic example of speaking your needs – spelling out exactly what I need from someone and trusting that they will act on that. In this case, I needed someone to protect my teeth from the approaching concrete, and that need was met with gusto.

Tuesday night I had another such moment. Solo parenting this time around has been ROUGH on me. Atti has chosen this week to suddenly get very precocious – more on that another day – and all of a sudden I have to monitor him and play with him and supervise him every second. He’s decided that with dad out of the house, he’s going to make up for his missed toddler years. I’ve been struggling and failing to meet the smallest of requirements of my usual days and when my sewing machine broke it was the last straw. I called Bear in tears, gasping for breath, and told him I needed more help.

And once I spoke my needs, they were met. He came home yesterday early, we mapped out a plan for how to arrange his schedule to better support me, we called in some friends to help, today I’m taking Atti up to Placerville so we can be tourists and see our new place, and tomorrow I’m cashing in a gift certificate I’ve had for ages and getting a massage.

It’s taken a lot of years and a lot of therapy to be comfortable with the vulnerability it requires to lay it all out there like that and be so naked about what I need. But it’s a skill I treasure. It has saved my sanity, and my skull.

Single Parents, I Salute You

I’m now completing my fourth week with Bear working out of town, and I am weary. He’s come home three out of the four weekends and one night a week, but it hasn’t even made a dent in my energy deficit. Seriously, how are you people doing this??

Because I am not a total self-absorbed jerk, whenever I describe this challenge I refer to it as “solo parenting.” Because even as I struggle, I recognize it’s totally not the same thing as being a single parent. I don’t have to worry about how the rent is getting paid, I have a light at the end of the tunnel, and I have those wonderful weekends where I get to lock myself in my studio and have some quiet. Plus I have the easiest kid in the world. Any parent who is raising kids by themselves would laugh at me like a chump if they could be a fly on my walls.

Well, I suppose there was the minor thing of a surgery, an IEP, two specialist appointments, and three school visits to meet with therapists, but still. Other than that.

So today I just want to say, single parents? I’m proud of you. You’re doing a great job.

Whether or not to be “That Mom”

Atti thinking

Atti had another IEP last week, and normally these things aren’t so bad for me. His teachers and school staff love him and I almost always leave feeling heard and supported and confident that my child is loved. Which is a pretty massive gift for any mom, let alone a special needs mom. I am always aware of how good I have it on that front.

But this one was a doozy. He’s about to go into Kindergarten. Which means that there are different measures that have to be applied for his goals. Which meant a pretty uncomfortable conversation.

For starters, Atti still doesn’t talk a lot. In fact, he talks so rarely that I’m tempted to say he’s approaching selective mutism. But a diagnosis for that is going to be rough, considering how many other variables we’re dealing with.

In children this young, the way they’re intellectually evaluated is mainly by tasks that require physical ability – handing over certain objects, pointing to objects, etc. – and in a kid that is physically impaired, it can be tough to evaluate. So then they go for verbal ability – answering questions, having a conversation, demonstrating comprehension. But if your child is verbally impaired, it’s even tougher. There are also some cues for visual ability – what they’re looking at and responding to – but if your child is also visually impaired, the whole thing is one big guessing game.

Which is where Atti falls in these evaluations. He can’t be counted on to respond with physical ability, he can’t be counted on to respond with verbal ability, and he also can’t be counted on to respond with visual ability. Tapping into that little brain of his is a big mystery.

I explain all of this because as I talk about the school psychologists reaction, I don’t want to paint him as a villain. His job is to remain impartial. He doesn’t spend all day every day with these kids. He has to go with what he sees on the test because he has to be clinical, and because no matter what is going on in Atti’s head, if he can’t do these things when asked, school is always going to be a challenge for him.

But his reaction hurt. If the tests are to be believed, Atti would be profoundly mentally retarded. Which I think anyone reading this blog for any length of time would know is totally not true. My child has known his alphabet since he was 18 months old, has been saying it backwards from 2, and has been reading since 4. And yet on the test? He wouldn’t even reliably say his ABC’s.

The school psychologist, in as gentle and reasonable way as he could, suggested it might be time to revise my expectations. That instead of college, I should be focused on the giving Atti the ability to make change for a dollar.

Every parent, whatever the needs of their child might be, eventually comes up to the point where they have to revise their expectations. Not every child can be a professional athlete, or go to Harvard, or be the President. Letting go of that is part of the work of parenting. But every parent also has to be their child’s advocate. They have to be the ones to push and fight and clear the path ahead of their child until they’re ready to do it on their own. Sometimes that means having faith in your child when no one else does. Sometimes that means sticking it to the man and hiring a lawyer and drafting laws like so many of the moms of kids with disabilities before me. Those moms are never far from my thoughts. My road would look very very different without them.

But because so much of the hardest work has been done for me, I always wrestle with what is left. Those mom’s have made it so that I have the legal right to get Atti every possible educational opportunity. But just because the opportunities are there doesn’t mean they’re right. I could hire a lawyer and sit in front of a judge and force the school to put Atti in a typical kindergarten classroom, where he might be so left behind by the pace of what they’re teaching that he’ll give up on school altogether. Or maybe he’ll see all the other kids communicating in full sentences and having conversations and using the toilet, that he’ll decide that’s what he wants too.

Maybe by pushing him I’ll be a Tiger Mom and get fantastic results, or maybe I’m the Toddlers and Tiaras mom who thinks their child is the most perfect bit of creation when the rest of the world just sees a booger eater. Maybe I’ll be the best mother in the world and teachers will marvel at what we’ve been able to accomplish together, and maybe I’ll be “THAT mom.” The one that teachers cross their fingers they won’t have to deal with because I’m demanding and delusional.

By the end of the meeting we came to a good resolution. A lot of school districts have “LD” programs for kids with learning disabilities. This will put Atti in a class with kids who talk, it will give him a focus on academics instead of just life skills like making change, but it will be far more flexible than a typical classroom. I think we reached the appropriate solution. But I also know that my child is not intellectually disabled and I won’t let anyone tell him that he is. If it means being “THAT mom,” then I’ll have to wear that label with pride.

Kid’s songs: Bringing Home a Baby Bumblebee

Trying to get Atti to cooperate during speech therapy is a herculean task. This kid has an iron will, which is awesome because it means that when he wants something, he cannot be stopped. But it sucks because often what he wants is to not do what his mom or teachers are asking him to do.

So I had to come up with a way to get him to work on his speech therapy in a way he’d be interested in, which always comes back to music. I was looking for songs that had a lot of the sounds he needs to work on: B’s, P’s, S’s, L’s, and R’s. I remembered the traditional ‘Baby Bumblebee’ song, and Atti thought it was the funniest thing ever. He loves screaming OUCH! at the top of his lungs and falling back on the bed dramatically. So with that success, I kept going and made up verses for all the rest of the letters he needs to practice.

I’m bringing home a baby bumblebee
Won’t my mama be so proud of me
I’m bringing home a baby bumblebee
OUCH! It stung me!

I’m picking up a purple porcupine
I will be so happy when he’s mine
I’m picking up a purple porcupine
OUCH! It poked me!

I’m scooping up a silly slimy snake
I’m so happy, oh for goodness sake
I’m scooping up a silly slimy snake
OUCH! It bit me!

I’m looking at a lizard that’s lean and long
While I sing this happy little song
I’m looking at a lizard that’s lean and long
HEY! It licked me!

I’m rounding up a really rotten rat
Oh just think what mom will say to that!
I’m rounding up a really rotten rat
P.U! It stinks!

A note about use: Since I put this on Youtube I’ve had some professional interest in this. So feel free to sing it with your kids, use it in a classroom, send it to friends (with a link back here), enjoy it all you’d like. But please don’t reprint the lyrics (including on your blog) or record the song without my permission.

Lemonade out of Lemons

Last week and this week have been – and continue to be – challenging in a way that makes me accept every scrap of pity people send my way as the mom of a child with a disability. Bear has already started work in his new building, which is an hour and 45 minutes away. Which means that he comes home one evening during the week, then on the weekend, and the rest of the time he’s in a hotel while I solo parent it.

Of course this would coincide with two weeks stuffed with appointments. Every day last week, and multiple appointments every day this week, including another surgery on his little boy parts. I often say that nobody doles out motherhood medals, but this week? I’ve freaking earned one.

Last Thursday Atti had an appointment with a pediatric neurologist. We’ve been waiting for this appointment for months, and once he visits we’ll start working on scheduling the big surgery that will change everything for him. This was a very big deal, and, of course, an hour and a half away from home.

I planned ahead the night before and imagined Atti and I leaving before the bus to school was even scheduled to arrive, me armed with a change of clothes and snacks and diapers and drinks, driving through the gorgeous Altamont pass and enjoying the view of the verdant rolling hills.

Of course, that’s never how these things go. After a very early wakeup call thanks to Bear leaving his phone alarm on while he was in the shower, I spent the morning trying to get Atti moving, and myself moving, and Bear out the door for three days away, and before I knew it, I should have been on the road 15 minutes ago.

I shove Atti in the car and hit the road and after about 45 minutes of frantic driving trying to make up for lost time, I look down and realize my needle is on E.

I find a nearby gas station and as I’m pulling in I see lights in my rearview mirror. Another ticket. This time for expired registration. (Which is Bear’s job.) The officer was very sweet to me and let me pump my gas while she ran my plates, but I had pulled in funny, what with the cop behind me and all, and only the premium gas hose could reach my car. So I paid way too much for a few gallons of gas, since I couldn’t exactly start my car up and repark while the police officer was making sure I wasn’t a fugitive, accepted my ticket, and got back on the road.

With only a few minutes left of our journey the office calls. The doctor had to go into emergency surgery and had to cancel all of his appointments for the day.

So since the morning was such an epic failure, the rest of the day had to make up for it. We were in the Bay Area, the weather was beautiful, I was with my favorite little buddy, so we decided to cast off all other responsibilities and make this MAMA AND ATTI’S DAY OF FUN!

New toys
We went to a fancy toy store where Atti picked out some letters and I picked him out a tool kit…

New fabric
We went to a quilt shop where I picked out some fabric treasures, Atti got a sucker, and everyone in the store fell in love with him…

Splashing in the fountain
We played in a fountain we found in the center of town…

At the nursery
We picked out some flowers for the garden…

Reading
We went to the book store where Atti read his book while I got to read my own…

snuggle
And we finished the day off in our favorite way. Lots and lots of snuggles.

So a long drive, a ticket, a frantic morning, expensive gas, no doctor’s appointment…shrug. It was still the best day.

Listen To Your Mother

Listen To Your Mother Read Through
Photo by Margaret Andrews of Nanny Goats in Panties

So much happened this weekend it’s going to take me the rest of the week to tell you about it. And it took half of this week even to wrap my head around it. It was everything I’ve been missing in my life all wrapped up in two neat little days of relief.

First, I have to try and describe what it was like to meet up with my new cohorts and do our first read-through for Listen To Your Mother. But that is a hard, hard, thing. How do you explain love at first sight?

Let me back up a ways.

Because of the activism work I do, I often find myself the object of a great deal of scorn. And worse. It’s a hard thing to try and describe but in this tiny tiny tiny little corner of the internet, I’m a public figure. It’s not a role I’m really even comfortable acknowledging because as someone who is also engaged in this mainstream world of blogging and writing and YouTube and trying to gain eyeballs, I am painfully aware that the corner of the world that cares about Mormon Feminism is miniscule. Laughably small. So so very tiny that it is pretty ridiculous anyone would think of me as public at all.

And yet, here we are. These issues are deeply felt, and activism for powerless or disenfranchised groups mean that any crumb of public attention matters a whole lot more than it would in any other group or situation. Which means that by being willing to engage with the press, I take a ton of shit. From every side. Mormons who think that I’m an apostate and go so far as to gather random comments I make across the internet to make the case for a church court. Secular feminists who think that a woman in a patriarchal religion is a beacon of internalized misogyny. Other Mormon feminists who think I’m megalomaniacal or representing things wrong or too aggressive or not aggressive enough.

There are people who monitor my every word. I wish I could say that was me being paranoid, but I’m currently paying the price for the truth of that statement. Around the internet there are whackjobs and bigots who are convinced I’m secretly trying to bring down the church with an elaborate conspiracy, but I usually find those people amusing. Locally there are people here in town who also monitor my facebook page and my blogging and report me to my ecclesiastical leaders. I find these people to be so vitriolic and attached to their own political principles over the teachings of the gospel that I think their apostasy court would be far easier to support than my own, but not according to my Bishop or Stake President.

I kept quiet about these things for a long time to try and repair the relationship and be discreet, but those efforts proved fruitless, and I’m now moving so…

For the last few years I haven’t been allowed to hold a calling, or speak without the stake president supervising, or teach a lesson, or even hold book club in my home without the bishop calling me into his office several times over my selection and then coming to chaperone the event. I still have a temple recommend because I’ve done nothing wrong and my conscience is clear, but nevertheless, I’m essentially being disfellowshipped for my actions. When I talked to the bishop about this he couldn’t name any problems and said that things would change, but they haven’t. I’ve lost friends I’ve had for years. People that I was there for in their own times of crisis have told me I should leave the church. But I keep at this because I believe it’s the right thing to do. And because I believe the true test of a Christian is how they treat the people who aren’t kind to them.

LTYM
Photo by Lisa Smiley of Lisa Smiley Photography

So with all that pressure, and all that emotional energy going out, I’m sure you can imagine that I’ve been feeling depleted. I think it’s shown in the blog here. My creative mojo has been gone, the words have not been coming. I am luckier than most in having many deep and true friends but I’ve been feeling a loss of community. Without my family in my life, I long for a group to understand me, to support me, to hear me.

And it was with that big aching need that I came to the Listen To Your Mother read through. As we sat around the table we poured out our most intimate feelings and experiences. Our emotion built on each reading, tears flowed, we laughed until we were sore, and we nodded and clutched our hearts and said, “me too.” Here was this roomful of funny, smart, passionate, present women, with vulnerable open hearts, and we filled each other up. In that one afternoon we did the work of years of friendship.

Margaret and Nichole thought they were selecting readers for a beautiful show, and that’s true too, but really, they were curating me a group of great friends.

World’s Youngest Perfectionist

Wary

Atti has a significant speech delay, and we’re always trying to unlock the mystery of exactly how to help him past it. You would expect a speech delay in a kid with Cerebral Palsy, it’s even more common than needing a wheelchair since all those tiny mouth and tongue muscles have to coordinate together in micro movements at a rapid pace, but Atti’s doesn’t seem to be so clear cut.

For one thing, he’s capable of making a whole lot of sounds he just doesn’t use in speech. Sometimes I think this kid is going to be the next Michael Winslow. He imitates the car, the dishwasher, the Gu-Gung of the Law and Order gavel, the static of an HBO production bumper. And his singing. You guys, his singing. He hears a song three times and he can sing it perfectly. He sings songs I’ve never heard. He sings songs I don’t even realize he’s heard as I’m flipping between radio stations. He sings introductions to podcasts he’s only heard second hand through my earbuds. He sings songs that I made up in a waiting room once and completely forgot about. He sings and sings and sings. Often jumping off a word in the conversation or choosing a song that can answer a question. He’s a prodigy.

So with that kind of skill, you’d think, or at least I would think, that he’d be able to communicate in words. He’s capable of making the sounds (close enough to be understood, anyway), he gets the meaning of them, and yet, he doesn’t talk to me. He repeats scenes from his favorite books or television shows, he’s constantly repeating the sayings his toys make, but if I ask him what he learned at school that day? Crickets.

At our last IEP I was sharing my frustration about this with his team. I really want him to enter Kindergarten in a typical classroom, because he’s freaking brilliant. He sat on my lap as I texted Bear and he read his first sentence today. I love you. If he had eyes that could stay on the same line I think he probably would have done it years ago. But if he can’t communicate with his teacher or follow directions or answer questions, that could be a real hindrance. School is all about performance. You have to be able to prove you know stuff on cue.

In that meeting one of the program directors said, “You know, if we were talking about an older child, I’d almost wonder if he was a bit of a perfectionist.”

She blew my mind. Perfectionist. Of course. He is my child after all. He certainly has some speech issues to work through, but his real communication problems aren’t from a lack of ability. When he sings a song, each word has a place. There is a right word in every moment. When he repeats the things his toys say, he can get it exactly right. He can be understood. He doesn’t have to guess. We don’t have to guess. He doesn’t have to fail.

Since that meeting we’ve been working on reinforcing him whenever he makes an attempt, and slowly, slowly, slowly, we’re seeing our efforts bear fruit. Now when he wants to tell me how much he loves me, he’ll use a saying from his toy, but with a twist. “You make me happy too…Mama!” He’ll say with a gleam in his eye. Watching to see if I caught how he used my name instead of the name his toy uses. He’s starting to repeat what we ask him to say. Still not originating speech, but being brave enough to try and follow our lead.

Our last time at therapy we were trying to get Atti to play with a basketball hoop, but he was not feeling it. Instead of stretching his arms over his head like we wanted, he’d toss the ball somewhere in the direction of the net and then try and talk us into letting that be enough. I know this because he was using my words against me. “Good try, my sweet boy!” “Excellent work!” “Atti did it!” That’s apparently what I say to him when he tries, and so that’s what he said to me to tell me he was.

Tutorial: Family Goal Ornament

Family Goal Leaf
This week is a big one for sharing new traditions. Since New Year’s found me in a bit of a funk (if by a bit of a funk you mean clinical depression), and Atti’s birthday comes right on top of it, you get two traditions in one week. A real sign that the dark days are behind me.

Like a lot of people, I’ve occasionally tried to do a “word of the year.” One word that can inspire my endeavors for the whole year, that I can focus my energies towards. But like most people, I’d forget what the word was about three weeks after I chose it, and out would go all those good intentions.

So in wanting to start my year of seasonal traditions, I wanted to revisit this. Instead of a personal word of the year, I decided that we should have a family goal. So we all sat down and thought about what this year would bring us and chose a word we wanted to use to set our goals around. Since this year is bringing us big opportunities and big changes, we chose “courage.”

Family Goal Leaf Pieces
To make sure that I wouldn’t forget our word, I wanted to make something that would keep it visible. And I loved the thought that by making something, I’d be keeping a family record of these goals. So I went for something that would be heirloom quality. Which in my world always means crosstitch. I made up a pattern with our goal on one side, and our team name and year on the other, and then cut them into a leaf shape.

Family Goal Leaf Crosstitch
I put the two embroidered pieces back to back with two thin layers of batting in between them for stability, and then stitched an overlock zig zag stitch all the way around the outside, tucking a loop of ribbon in before sewing up the top so it can act as a hanger.

Crosstitch Pattern
This is the image I created to crosstitch, which you are welcome to borrow. To make a pattern out of it there are a whole bunch of awesome online pattern generators, and here’s one I think is particularly good.

Want me to talk you through it step by step? Here you go!

Need to learn to crosstitch? I’ll walk you through that step by step too!

I really love the thought that as the years go by we’ll have more and more of these leaves, with more and more values that we’ve grown together as a family. These will become the visual representation of the family tree we’re building, one day at a time.

Our new birthday tradition…Wishing Lanterns!

Atti's Birthday Lantern
One of my many crafty goals for the year is to start seasonal family traditions. As a religious person, I have a reverence for ritual, and I want the power those rituals evoke to be present in my family life. It is one of my foundational believes that we can mold our lives into anything we want through the power of our creativity, and one thing I want to use that power for is to make the people I love feel treasured. So I want to create rituals and traditions that create moments where the people I love feel honored, and see how important they are to me.

I’ve been thinking about something I could do as a birthday tradition, and I really loved the thought of using that time to set goals or list hopes or make wishes – using a birthday as a chance to evaluate and refocus priorities. But the only ceremony I found with that agenda involved letting balloons go, which is terrible for the environment. So after a lot of thought and research I came across these paper lanterns.

If you’ve ever seen Tangled, you’ve seen these in action. They’re commonly used in ceremonies all throughout Asia, and the glow filling up the night sky is absolutely stunning. I ordered some white lanterns off the internet, and then one night after dinner we all sat around and drew on it, listing all the things we want for Atticus this year.

 

Lighting the Birthday Lantern
The lanterns are made to be let go, but that’s not great for the environment either, mostly because it can be a big fire hazard. So once we lit it, instead of just letting it float off, we used a long piece of wire (has to be wire so it doesn’t burn or melt) and tethered it to a tripod so it couldn’t get out of our sight.

 

Floating lantern

 

Then we laughed and snuggled and watched the lantern dance in the breeze.

 

Atti's birthday

 

 

Watching the lantern fall

 

Once the fuel burned up, the lantern floated gently to the ground. I was hoping it would catch the paper on fire and we’d have a great symbolic burning, but the paper must be treated with something because the best it did was smoke once we held a match directly to it. So not quite as satisfying at the end, but no fields burned down, no birds choked on a balloon, and we all got a chance to hold each other close and watch something beautiful as we celebrated another glorious year with this special little guy. It was magic.