Year of Pleasures: Nostalgia

Rockin
A scary computer glitch made it appear that all my photos had disappeared somewhere. Luckily I tracked them down before I had to do anything drastic, but once I found them I had myself a little slideshow in celebration. Gosh my kid is cute.

This photo is from a couple of years ago already, Atti was three and we were playing some music. Loud. I was inspired by his t-shirt and so I put on the playlist I made for him of Beatles music. And he rocked out. And I died of happiness. And today I’m dying all over again from the memory.

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Tutorial: Kid’s Bow Tie

DIY Kid Bow Tie

DIY Kid Bow Tie

This Kid’s Bow Tie tutorial is so easy you barely need to know how to sew to make this bow tie, I promise. You can sew this it by hand if you felt like it.  And isn’t it worth it for such a cute look?

Atti in a bow tie
Little boys all dressed up are just the very very cutest thing. They are so adorable that I don’t know why it’s so hard to find little bow ties, it seems like they should be as plentiful as socks, just as an obligation to make the world a cuter place. And yet the only time I find them is at craft fairs. I figured it was time to make some myself, so after a little experimentation, I found the easiest possible way. A bow tie with three little seams and no special hardware.

Bow tie tutorial step 1
First cut out all of your pieces. Get your iron hot because you’ll do a lot of pressing, but that’s what does all the work here.

Cutting Measurements:
2 Bow tie pieces: 9″ x 5″
1 Strap piece: 15″ x 1 1/2″
Center loop piece: 3″ x 1 1/2″
2 pieces of velcro cut skinny enough to fit on a 1/2″ wide strap

Each piece then needs to be pressed to the finished size.

Finished sizes:
2 Bow tie pieces: 4″ x 2 1/2″
Fold the edges into the center until they just overlap. Adjust as necessary to get the finished size you want. Press. Then fold the sides into the center until they overlap. Adjust again for the finished size. Press.

1 Center loop piece: 3″ x 3/4″
Fold the edges into the center until they overlap. Press.

1 Strap piece: 15″ x 1/2″
Fold the raw edges into the inside, then fold the whole piece in half. Press.

Bow tie tutorial step 2
Layer your two bow tie piece on top of each other, all the fold lines facing in. Sew them together with a line of sewing right down the middle.

Bow tie tutorial step 3
Fold the center loop so that the ends are meeting, fold lines out. Sew as close to the edge as you can, and reinforce that seam several times. This is the point that will take the most stress, so you want that seam strong. Turn right side out.

Bow tie tutorial step 4
To make the strap start by sewing it shut. Fold the end edges inside and then sew a line of stitching as close to the edge as you can while enclosing everything. Sew on the velcro by sewing a line all the way around the edge of it. Just make sure that each edge of your velcro will line up the way you want it to when the tie will being worn. One piece of the velcro will need to be on the front of the strap, and the other on the back.

Bow tie tutorial step 5
Fold your bow tie pieces over until they’re small enough to fit through the center loop and shove them through.

Bow tie tutorial step 6
Thread the tie piece through the center loop too. If you want to make sure that it doesn’t slide around, you can use a few hand stitches to secure the center loop to the bow tie and the strap, but I didn’t bother taking the trouble.

Handsome Atti
I mean, seriously. How can I dress him in anything else now?

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The decision

My little guy

Have I mentioned lately how much I love special ed teachers? Because I really do. With all my heart.

His IEP went great and I feel really confident about the plan we have in place, which was different from the idea I had going in. But one thing I’ve learned on my parenting journey is when to shout and when to listen.

As soon as we sat down, the first thing the teacher brought up was a letter I sent with Atti on his first day of school. I wrote, “Don’t let him fool you. He’s brilliant.”

But of course, what mother doesn’t think her child is brilliant? So she read my letter and filed it away with a grain of salt. Until she started working with him. She told the whole roomful of specialists assembled to make a plan for Atti that she had been tempted to dismiss my advice, and then she learned how right I was. Her willingness to admit her mistake made me love her.

Then she started explaining Atti to the other specialists. His ridiculous stubborn streak, his love of music and letters, how he will fight and fight and fight to not do something he doesn’t want to do, and that he is brilliant. She tested him the morning of our meeting and he knew 100 sight words before they stopped counting. (And they don’t even know about outliers like dinosaur and helicopter.) She tested his number recognition and he got all the way up to 100. He has basically just blown past all the Kindergarten academic requirements. Her description of my child, knowing that she saw him just like I saw him, made me listen to her.

Before Atti was born I had firm plans to be a homeschooling mom. And then I met this kid and realized that I needed the backup that comes with dedicated people who have put time and work into a specialized education. It’s not like teachers as a group are in it for the money, but special ed teachers are an even more rarified group of people with a sincere passion and a tender heart. Sometimes I think that having a child with special needs is a privilege just because it lets me know so many special ed teachers.

Today was Atti’s first day in his new classroom, the Orthopedically Impaired class. There they will customize an academic program for him where he will be challenged beyond the Kindergarten level, and they will work to mainstream him into the Kindergarten class as much as he can tolerate. The ultimate goal is to get him into a typical classroom, and I think we’ve got a plan in place to do it.

It can be hard to admit that I might not know best. I know HIM best, and my job as his mom is to make sure other people see that dazzling little mind and spirit in there. Once I know they do, I can back off, take a breath, and accept the help being offered.

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Year of Pleasures: The kindness of strangers

St Jude

My friend Regina and I were enjoying a beautiful summer day by eating at a local sandwich shop and sitting outside at a little cafe table. Regina is a more protective mom than I have learned to be, so we tease each other all the time about that. She has a heart attack when Atti pushes up to balance on the two back wheels of his chair, I shrug my shoulders and say, “He’ll learn what happens when he doesn’t listen to his mama.” This day Atti was wheeling all around the patio, slaloming between the other tables, threatening to roll out into traffic, and giggling at Regina’s distress. I showed him exactly how far he was allowed to go and called him back when he crossed that line, and he listened. It was awesome. It was just how any little precocious 5 year old would act while he’s stuck at a grown up lunch.

Just before we were getting ready to leave, an old man came up to our table and handed me this little medal. He pointed to Atticus and said, “That’s for your little guy. God bless.” And walked away. I thanked him sweetly while the color rose in Regina’s face. When he was safely out of earshot she asked, “Does that bother you? A stranger coming up and saying he’s an impossible cause?” I got where she was coming from, it was defensiveness borne out of a ferocious love for this little guy. She calls Atti “our boy” and loves him like he really is one of hers. She knows exactly what he’s capable of and how indomitable his little spirit is, and isn’t going to let anyone say anything different.

But I was really moved. I’m always moved when someone wants to share a sincere expression of their faith and love with me, and that’s what I felt from that sweet man. Atti really is up against a pretty daunting challenge. I think he can take all the prayers and hope and kindness anyone is willing to extend to him. And then I think he’s going to show that the only impossible cause is betting against him.

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Atti goes to Kindergarten

Atti's first day of school

Today marked the first day of the second week of school. It went great. Which is a wonderful change from last week. Which was a nightmare.

For one thing, I had no idea that elementary school started in the middle of August. This is what happens when your child has a disability and goes to school year round. I kept thinking that I had plenty of time to deal with registration only to discover that I had a couple of weeks. Which might sound like oodles of time if all you have to do is fill out the emergency contact form, but is no time at all if you have to have multiple meetings to decide which class he is best placed in, which class he is legally required to be placed in, what equipment they need to get ordered and who is going to pay for it, how they’re going to get him back and forth to the bathroom and diaper changed, when he’ll get therapy and how he’ll get there, if they even have a bus with an elevator and how it’s going to get to pick him up, when he’ll get speech therapy, and more and more and more.

Most of the time when people want to give me pity or praise for being a special needs mom, I don’t take it. Most of the time I insist that I’m no hero and it’s really not that different, and every good parent tries to meet their kids needs in whatever form those might take. The one time I cave and want every ego stroke anyone offers is when it comes to school.

There is literally not one thing that can just be taken for granted. Where, how, and when he arrives, where, how, and when he eats, plays, sits, learns, what utensils he can use, how long he can sit in his chair, whether or not he can leave his chair, where, how, and when he leaves class, every single detail of his day has to be negotiated and requires meetings between me, his teachers, therapists, aids, the nurse, and the program director. It’s exhausting.

I don’t want to get carried away with my complaining. Each one of these meetings represents massive victories for disability rights. Because of these meetings, I can have confidence that he’ll get the best possible education and never just be stuck in a room somewhere. Even the special ed classes of my childhood, let alone decades before, were little more than holding pens. Now I know that there is a whole team of people fighting for him and pushing him and because of that he will accomplish everything he’ll want to in this life.

But holy crap is it a lot of work.

And it’s not just a lot of work for me. The teacher who ended up with Atti only got a few days notice and in that time had to figure out how to completely reshuffle the resources of her classroom. The program director had to reassign aids and money and services and all kinds of things. There wasn’t time for any evaluations, and I warned them about how poorly Atti tested, so they had to just take my word for it when I talked about how brilliant and stubborn he is. All the time wondering if a mom bragging about her baby could ever really be trusted as accurate when a curriculum depended on it.

The first week Atti had a really rough time. His class has kids as old as 3rd grade, and he’s the only Kindergartener. It’s the first time he’s ever had to sit at a desk, or raise his hand, or obey classroom rules. It is a massive massive change for him, and he was just not having it. I got called to the school when he pinched a teacher, he had to go to time out when he threw a screaming hissy fit in the middle of the library, he refused to hold a pencil or follow any instructions, and one teacher wondered if he was ready for the amount of academic work being asked of him. And I had a massive crying jag as I questioned whether I was unwilling to see my child for who he really was – limitations and all – or if the school wasn’t meeting his needs.

Since then Atti and I have had a lot of talks about what we expect from him in his new school. I’ve talked with the teacher extensively and tried to find ways to make up for the wrong foot I got us all started on. And we’ve been doing lots of homework. Which means trying to get Atti to do a puzzle.

Today when I dropped him off his teacher told me that she was seeing proof of how much he knew. When I went to pick him up the aide told me that he had an A+ day and got every question right. She went on and on, describing how he knew every letter, every number, every sight word, named every color. My pride was bursting. I know what he’s capable of, the trick is always trying to get it out of him. I think he might be willing to set it free.

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Conquering my fears (and his too)

Wavepool
My parents weren’t in to doing all the typical kid things. I never went out for Little League, I never took dance class, and I never learned to swim. It wasn’t for lack of trying. I begged my parents to let me do things – anything – even things I was barely interested in. The things I really truly wanted for myself – like taking acting classes or even going out for auditions – I couldn’t bring myself to bring up. It was easier to keep those things locked away in my innermost heart.

I was never really interested in learning to swim, but now that I am a parent I can’t help but shake my head at two people who had five children and never gave them a basic safety education. We grew up in Washington where we’d often go to the lake with friends, or go inner tubing down the river, or wade in the frigid water of the Puget Sound. We’d beg for a ride to the community pool and then wander around town all day, buying candy from the drug store until somebody thought to claim us. We were around water all the time, and could barely do more than dog paddle.

There were a couple of times when I had some very close calls. Once at a community pool I got out too deep but all the lifeguards thought I was playing and an older boy came to my rescue. A backyard pool party where I lost my footing and found myself floundering in the deep end. Falling off the inner tube and floating down the river on my back, praying for safety until I reached a calm section.

When Bear and I were engaged, we went to a family reunion where I met most of his extended family for the first time. They all wanted to float down the river on these foam pads Bear’s uncle had found at a flea market. I was nervous to get in the water, but I was more nervous to make a bad impression, so I jumped on the pad and tried to keep up with all of Bear’s cousins. Until I hit a log, my pad flipped, and I spent the next 20 minutes having a panic attack while Bear wrestled me to shore.

For all my bad experiences, I’m proud of myself for not having a bigger phobia about the water. I can go out on boats, I can get in water up to my neck, I can do just about whatever if I’ve got my life vest, but I would never say I enjoy any of it.

At the waterpark
And so, as is so often the way in parenting, I was destined to have a child who loved water more than air. Doesn’t it always seem to work that way? Kids seem to find your biggest fears, your secret soft spots, and press on them.

I would never want to pass fear on to my child. That is one of my grandest goals in parenting: To raise a child without fear. Caution, yes. Good boundaries and the wisdom to follow his instincts, absolutely. But I think self-protection is very different from fear, and it’s that desperation, that terror, that I want to save him from. I want to raise a child that makes decisions from a place of love. Love of humanity, love of the journey, and love of himself.

Which means I have to model that for him. If he is going to learn it, he has to see it.


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Camping with disabilites

Atti and I went camping
Last week I talked about the hard parts, now I want to shamelessly brag. I am a camper. Hear me roar.

I am the child of the hardest core of campers, but we only went camping a handful of times growing up. I think that a household full of girls flummoxed my father once we all left diapers. When we started to be able to articulate our bathroom needs in the wilderness, he was kind of done with taking us along.

I think of myself as a bit of a fancy lady. My expertise runs more to navigating subway grates in heels than peeing in the woods. Even at my least fancy I was way more urban. I can find you the safest spot to park your car for a good night’s sleep, but I don’t know how to book a campsite. And once you ask me to bring Atticus along, I am so far out of my comfort zone I can’t even see the light. Wheelchairs are not made for off roading. Basically, if I can’t wear my pretty shoes, Atti’s wheelchair can’t travel it.

But if there’s one thing that gets me over my fears, it’s the prospect of missing a good time.

Atti at camp
This camping adventure brought all of my favorite internet friends together in one place. All the ladies I love and admire and work with in our Mormon Feminism troublemaking efforts. So I was not going to miss out. My friend Lindsay offered me space in her tent, she organized a meal co-op, and all I had to do was show up. I could do it.

The thing that gave me the most courage was knowing how much Atti would love it. This kid is an outdoorsman. With our new backyard, I CANNOT get him to come inside. As soon as he wakes up he says, “Play outside on the ground?” He has spent the last two months so covered in dirt I could never tell where the tan stopped and the dirt began. Every time I changed his diaper I’d find pebbles and bark. He loves it. And any time I mentioned sleeping outside his little eyes would go wide and his smile would creep up as he hid his head in my chest. Like he was afraid to jinx it.

The big problem to solve was transportation around camp, since his wheelchair wouldn’t cut it. I shopped for months looking for some kind of accessibility equipment but everything I found cost as much as a car. And then at Costco I found this wagon. It folds up for storage and has big fat tires that will roll over anything. It’s like the camping gods put it directly in my path. With this wagon Atti was on the same level as all the other kids. He got competitive and mad when he was excluded. He played dress up and actually WORE A HAT because it’s what the other kids were doing. He sang campfire songs and danced in the firelight. When a sudden cloudburst soaked us all, he giggled and turned his face up to the rain while he sang Itsy Bitsy spider. It was a miracle. He completely bloomed out there.

But you know what? So did I. I solved all of Atti’s accessibility problems. First with the wagon, but also with his sleeping. The kid won’t use blankets and needs his own space. Sleeping bags would never ever work. So I bought him a dog bed. And it was magic. I was worried people might give me the side eye for it, but there were a whole lot of moms there who envied both the wagon and the bed.

And then I tapped in to my inner camper. I got stung by two wasps, I started a fire with wet wood, I roasted vegetables in tinfoil and made a goat cheese sauce for pasta, I got so dirty that on the last day I had to choose between wearing a shirt that had been mildly peed on or a shirt that smelled like two days of body odor, I sang Bohemian Rhapsody at the top of my voice by the light of the campfire, I stayed up until sunrise discussing the problems of the world, I talked with girls who are more aware of the world at 11 and 12 than I was until my 30’s, I cried and I hugged and I loved and I felt known. It was an embarrassment of riches.

I think I’m going to go out and buy a tent of my very own.

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The Aftermath

The end of a road trip

I’m still recovering.

I did it. But I’m still recovering.

Last week I drove east in search of friendship, just me and my little guy with a car jam packed with everything necessary to make him mobile in the wilderness. I found it, and I found a new piece of myself and it was incredible. But that’s a story for later this week. You all know that I never try to pretend things are better or rosier than they are, and while the camping trip was successful, it was also HARD.

A nine hour drive by myself with Atti, a night staying up too late gabbing with friends and sleeping on the floor amongst a pile of toddlers, two nights in the woods, another night on the floor, a nine hour drive back, hosting house guests, picking tomatoes, throwing a party for my guest, and now canning all those tomatoes I picked. I may never get enough sleep again.

My dear friend Jerilyn and her five year old daughter, who were also at the camping gettogether, live in Oregon. So they hitched a ride back from Utah with me and I made them stay at my house for the rest of the week as payment. As we drove West over the salt flats (which are not snow nor glitter as she tried to get me to believe) we told our whole life stories to each other, tag teamed parenting duties, tweeted whenever our phones had bars, and kept each other company on the end of our ropes. A week of parenting on your own, away from home, all the things your kids are particular about, and any structure, is a challenge. And by the time we were driving home we were over it.

By 7 o’clock we were in Reno, two hours away from home and ready for a dinner break. After a week of camp food and fast food hamburgers, we got the brilliant idea to find a little restaurant where we could sit down and have a nice meal, the kids could stretch their legs, and we could take our time over food we actually enjoyed eating. Half an hour later after both google and yelp let us down, we pulled in to a round table pizza. With his wheelchair buried under luggage, I left Jerilyn to order for us as I carried Atti into the bathroom for a diaper change.

Of course there was no changing table. Of course not. So as only the end of a vacation will do to you, I abandoned all sense of hygiene and set Atti down on the floor of the bathroom while I used the facilities. But now that he is so much more mobile he wouldn’t just sit in the corner, he had to crawl away. On his hands and knees. On the bathroom floor of a Reno Round Table Pizza. He found his way to the drain and stuck his fingers inside, an ant crawling out, up his arm, and on to his face.

I washed us up as best I could and went out to our table where Jerilyn informed me that they were all out of everything we wanted, so she had to get creative with our order. And then we waited. And waited. And waited. An hour later our pizza finally came.

Our spirits broken and giddy with exhaustion, everything was hilarious. After the bathroom floor nothing scared me so when Atti crawled down off the bench and laid down on the carpet, I didn’t stop him. Jerilyn loves to tease me about my “brand” – Reese Dixon the domestic goddess – so she was laughing and laughing at Reese Dixon (TM) letting her son play on the dirty floor, when all her pizza toppings fall down her shirt and her 5 yr old asked, “Why are you laughing? Because you have food stuck in your boob?”

Just when we collected ourselves a kid who worked at Round Table came over. He couldn’t have been older than 17. He saw Atti, who was falling asleep by this time, old pizza crumbs stuck to his face, and said, “You might want to move him to a bench. That floor is filthy.”

We laughed right in the poor kids face.

Yes, I hit my domesticity rock bottom. My dirty child and dirty self ate pizza we didn’t want, after waiting too long, and I let him fall asleep on the floor. Of a Reno Round Table Pizza. With a floor so dirty even a 17 year old boy was disgusted.

But we went camping. So. It was worth it.

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Atti and Mama’s big adventure

Atti in his wagon
Bear and I are not camping folk. We’re more, fancy people. An actual conversation I had with him yesterday: What do I wear camping? I don’t have grubby clothes. Can I wear a skirt?

We camped a bunch when we were little kids, but we didn’t have camping clothes and nice clothes. We just had camping clothes. And as an eight year old I didn’t pay attention to things like what we were eating and how to prepare it over a fire. Once I left home as a teenager I was far more comfortable navigating public transit than hiking trails.

But this little kid of mine is an outdoor kid. And since he already has enough barriers to participate in the outdoors, I can’t be another one. So despite my personal reservations I am ovary-ing up and taking my boy camping. Bear has to work so I’ll be doing this on my own. Sort of. Atti and I are leaving here (right now! Type faster!), driving to Utah to meet up with friends, camping together for three days, and then driving home. I deserve a medal.

Since Atti’s wheelchair isn’t built for off-roading we found this little wagon at Costco that he just loves. He rode it in the 4th of July parade, I pull him around the backyard in it, and tomorrow he’ll be riding in it through the Uintah mountains.

Camping was one of those things I thought I left behind in my childhood and would never get back to. Bear and I would much rather spend our time in a nice hotel than even the most majestic of state parks, but this is what we do for our kids, eh? Odds are I won’t be a soccer mom or drive Atti around to his hockey games, so instead I’ll have to hold my nose and become a camping mom. And watch my little guy lose his mind when he gets to sleep under the stars.

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Year of Pleasures: New friends

Atti and his new friend
Moving is rough. And moving as often as we have, there have been times when I just did not have the energy to put myself out there again. This time I didn’t have to find it. Friends found me.

My first week at church I found an instant friend and we’ve been close to inseparable since. A friend from a facebook group found me and adopted me, and introduced me to even more friends from the facebook group, including one who lives super close and dropped everything to come and say hello. And our next door neighbor brings her coffee over on Saturday mornings for chats in the garden or has us over for barbecues. This is her grandson Gavin. Gavin has autism, and that feeling of being a little different, of needing to do things their own way, of making room for their needs, has made him and Atti fast friends.

You know Atti loves him when he shares his iphone games. In his world that is like sharing the last piece of chocolate cake.

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