Atti gets his Baclofen Pump

Kid in Hospital Bed
After a year stuck in red tape hell, we FINALLY got all the approvals necessary for my little guy to get his next surgery. I kept thinking of this one as a quicky on the road to the two major hip reconstructions we have coming up, but boy was I wrong. This one was HARD. And totally sucked. For all of us.

Atti had a Baclofen pump implanted in his abdomen. The pump is full of medicine and releases it directly into the spine, where it can bypass all the side effects of taking something orally. In this case, Baclofen is a muscle relaxant which, if you’ve ever taken a muscle relaxant you know, makes you stoned. Sleepy and silly and incoherent is no way to go through life. So by having this pump he gets all the medicine he needs but he still gets to keep his clarity.

I didn’t realize until our pre-op appointment that he was going to be in the hospital for a week. Or that he’d require at least two weeks of recovery at home afterward. With all of Atti’s surgeries he’s bounced right back almost even before we left the hospital. This one was different.

Dad and Sick Kid

This time, we couldn’t keep his pain under control. He’s so stoic that he never cried, he just writhed around in bed with the pain written all over his face. The worst was when he’d wake up in the middle of the night begging for help. I will hear that little voice in my nightmares until the end of time.

I stayed with him in the hospital the whole time, and since it was Shriners we were spoiled rotten. I got a roll out bed next to him so I didn’t have to sleep in pushed together chairs or a windowsill like I’ve had to in the past. There was a day room playing music he liked and a cafeteria with decent enough food. But still, it was the hardest time I’ve ever had as a parent of a kid with medical needs. This hurt him so bad. The pain has been intense and bewildering. And it’s hurt how he feels about himself. And there’s nothing I can do but hold him and love him and try to save my tears for the bathroom, or at least where it’s too dark for him to see.

We’ve been home now for a couple of weeks and Atti is crawling around like nothing happened to his little body. The spasms in his legs are way down, we can get his legs open enough to easily change diapers, I think this is going to make a massive massive difference for my little hero.

But we still have some healing to do. Both of us.

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Atti’s Introvert Friendly Birthday Party

Birthday Party
For Atti’s whole life, any mention of a birthday party was met with screams and tears. Even attending other kids birthday parties were too much for him to take as he was humiliated by proxy with all the attention on the birthday kid. Even hearing Happy Birthday in a restaurant was enough to send him into redfaced earcovered dripping wet tears. And for a kid as introverted as mine? A birthday party really would be torture. All that special attention is great for an extrovert, but with my guy being too shy to speak, I can’t imagine a greater hell than opening presents while everyone watched.

So we did things just the three of us. I’d make a special cake, or he’d pick out a special present, but it really couldn’t get lower key. Until this year. Atti finally said he wanted a birthday party. We were so shocked I kept asking him over and over again. “Really? A birthday party? Do you want your friends from school to come? And church friends? Really?” But he kept saying yes, so I jumped on the chance to go absolutely crazy.

And I did. Special invitations, so so so much food (that will be coming later this week), lots of decorations, but I also kept one eye on Atti the whole time, making sure that I had built in some safeguards for my gentle little boy.

So if you have an introverted kid, here’s some tips I’ve tested out for you.

Dance Party
Don’t make your child play host. I made a music playlist and had it going on the computer so as people arrived I’d hand the kids a balloon to blow up or play with (as age appropriate) and told them we were having a dance party. We built the chaos of those early minutes into the party so I never had to ask Atti to go and take a kid to play. We were all just playing from the moment they walked in the door.

Cow Kiss
Create a safe space. For our activity we rented a petting zoo (hashtag country living privilege) but the point of it was to have something Atti could hide in while the other kids could still be entertained. If things got too overwhelming – which they did – he could hang back and make friends with a special calf while all the other kids ran around the backyard doing whatever they wanted. In a pinch a safe space could be a bedroom, or even your lap, but it helps to have a place your child knows they can check in for a few deep breaths to ward off the big overwhelming feelings.

Alpaca
Hit the invitation sweet spot. It might seem counter intuitive, but if you’re not having a party with a couple close friends, than the answer is to throw a rager. We invited a LOT of people. And we told everyone to bring their siblings and parents. We basically had an open door policy. What you’re looking for is reaching peak crowd. If you have enough people that you can’t all sit around and talk in one large group? You did it right. A crowd allows people to break off into smaller groups, people can disappear for a minute if necessary, your child isn’t the source of entertainment, and they can hang back as much as they need in order to be comfortable without anyone being worried or changing the fun of the party.

Goat
Throw out the program. It was really important to me that if we were going to throw a party, I wasn’t going to neglect Atti to entertain a bunch of other kids. Free form activities allowed me to make sure Atti was having a special time, but if the other kids were bored with the dance party, they could play with stickers set out on the table. Or pet the animals, or go crazy in the backyard, or play in Atti’s room. There were enough adults around to make sure nothing got broken, but otherwise I encouraged the kids to just play and let go of any plans of moving orderly from one activity to the other. Any kind of an activity that came with an expert to take charge would be great too, as long as they were warned not to single out the birthday kid.

Calf
Have a buffet style spread. I made so much food for this party. Partly because it was so much fun for me, but also because I thought of the food as another activity that could provide a distraction as necessary. I spent plenty of time around the snack table as a teenager, and I hang with so many introverted internet types that I know the punch bowl is a perennial comfort zone. So keeping with the motive of not having to control or lead anything, I had all the food out on the table and made it up for grabs through the whole party. Including the birthday cake. We didn’t sing happy birthday, I didn’t walk in with lit candles, we just had it on the table and about halfway through the party I started cutting it up and putting it on plates.

Cowboy
Make One on One time. When a stressed out overstimulated introverted kid starts getting overwhelmed, the LAST thing they want is attention drawn to that fact. If you can make some activities that require one on one time, you can release some of that pressure without anybody being the wiser. For us it was taking turns on the pony rides, but it could be facepainting, or a turn on the trampoline, or special cupcake decorating time, anything that lets the kid chill out on their own for a minute.

Horseriding
Forget the presents. This will not only save your introvert some unwanted attention, but it will make you a hero among parents.
Buying presents for kids parties is the worst! Who knows what some kid at school wants? You’re left spending money you don’t want to spend on plastic crap the kid might not even want. Boo. Instead we took Atti shopping and let him pick out his own presents, and then we had a couple other things – like his Big Boy Bed – that were surprises. If your kid really really has their heart set on presents, then maybe you could stash them in a back room somewhere so you don’t have to open them while people are at the party.

Family
Throwing this party was a total dream come true for me. I’ve been waiting to go Pinterest crazy with a birthday party for Atti’s entire life! But one of my core values as a parent is not to make Atti’s childhood all about me. It has to be what he enjoys, in a way that he wants to celebrate, no matter how many adorable paper goods I’ve had to pass by. I think with this party we managed to make both of our dreams come true.

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Atti’s Big Boy Bed

Big Boy Bed
The last month has been stuffed full of celebrations. So many that it’s going to take me weeks to share them all, which just feels heavenly. After the gauntlet of last year, this feels like full circle, surrounded with love and good news.

At least, bittersweet news. Atti turned 7 at the beginning of February. 7. Six felt like a big deal – going into first grade, looking so big – but with some of Atti’s delays I could still play at having my baby. Not anymore. He is big. He’s losing teeth all over the place, he’s got an adorable jack o’ lantern grin, he gets mad whenever I call him my baby, and he even changed the lyrics to one of our silly made up songs. He told me I can’t sing “he’s my sweetest little baby boy.” Now I have to sing “he’s my sweetest little super guy.” SUPER GUY! I mean, 1) How amazing is it that that’s the title he picked for himself, and then 2) MY BABY!! WAHHHHHHH!

New Bed
For this big boy birthday we figured it was time to give him a big boy present, so we hauled out the convertible crib/daybed/pile of rubble he’d been using his whole life and got him an actual twin bed. With a real mattress and not the plastic covered brick that babies need to sleep on since they’re too little for pillows. He is obsessed with it.

Every day he comes home from school and asks to play with his kindle in his bed. He sits in it and reads books, he leans over from it and plays with his cars on the floor. He jumps up and down so much that we have to readjust the rug every morning. There is so much victory in this moment. I keep thinking of him in the NICU, in his little isolette covered in wires, and I wish that I could go back and give myself a glimpse of this. That someday he’d be so healthy and happy and big. That despite all my fears for his future and his disability, I would still know what he needs, and even what he wants. I’d be able to communicate with him even without a lot of words and know that his deepest hearts desire is to be big, to grow up, to be independent, to be seen as his own little self. To be seen as the little super guy he knows he is.

I want him to be my baby forever, and he will be, but I never imagined how amazing it would be to get to be the mom of a superhero.

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Atti goes Boom

Atti in the fountain

Atti and I were out running errands together, and like any six year old boy he was testing my patience. We were in Bath and Body Works picking up some presents for Bear’s staff, so I had him in his wheelchair and had the unenviable job of trying to shop, listen to saleswomen, keep an eye on my kid, and block the doorway against a sudden sprint to the parking lot. Imagine a six year old with the bodily experience of a toddler. That’s what I’ve got. Experimenting with independence, learning consequences, asserting his will, but with twenty extra pounds and wheels.

One of Atti’s early therapists drilled it in to me that I can’t treat him like he’s made of glass. His body is no more vulnerable than anyone else’s, he just can’t control it. In fact, he’s actually MORE impervious to pain than a typical kid because of the way his nerves don’t talk to his brain. This kid bounces.

So it’s a running joke with all of my mom friends that I blithely sip my cocoa while they’re nervously hovering afraid he’s going to fall off his chair. In the words of that therapist: “:shrug: Then he’ll learn not to do that.”

Of course, the rest of the world didn’t get that memo.

At Bath and Body Works I was loading the car while Atti was in his wheelchair on the sidewalk. I was talking him through watching where he was going, looking out for the curb, being patient until I could help him, but like most kids, he didn’t listen. He saw the wheelchair ramp and decided to try and do it all by himself, but one of his wheels went off the curb and he fell forward into the parking lot right on his little face.

Experienced moms know, this sucks. When you’re talking skinned knees and not blood or broken things, it sucks way more for mom than it does for the kid. You have to console your child, you feel the typical “I let my baby get hurt” guilt, but since it’s just skinned knees and everyone’s fine it becomes one more pain in the neck hassle you have to deal with in your day. If it was serious you’d drop everything and run to the doctor. But since it’s not serious it’s just aggravating.

But when your kid is in a wheelchair, the world thinks that every fall is serious. When Atti fell over he started crying, but I knew it was an angry cry, not a hurt cry. So because the day had already been long and there were still four more errands that had to get run I was frustrated. And then I saw the people running and I had to put on my show for the public. People were sprinting from across the parking lot, a lady ran out of the store with her basket she dropped in the middle of the sidewalk, all because a kid fell from a sitting position onto the ground. The wheelchair makes it look scary.

Let me pause here in case I sound totally callous. Atti’s fall was roughly the equivalent of a kid sitting on a swing not in motion, and falling out onto their stomach. This happens on playgrounds everyday so frequently that notes don’t even get sent home about it. I asked my mom friends what they do in this situation and they said, “I say, ‘whoops! hop up!’ so they know it’s no big deal.” I’m talking your typical kid learning how to use their body and not paying attention kind of fall. And since Atti fell in his chair, the chair takes most of the impact.

But to people who don’t see wheelchairs every day, it’s terrifying. So then it becomes about their emergency, not my son’s.

Atti was pissed off that he fell over. He was mad he didn’t navigate the wheelchair ramp by himself, but he was WAY MORE upset that a crowd of people were standing around gawking at his humiliation. So he’s screaming and crying because he’s embarrassed, but the crowd of people think he’s crying because he’s hurt and want to help the little disabled boy and his mom, and I want to tell them all to shoo and let me tend to the hurt feelings of my little guy. Atti won’t stop crying until they go away, and they won’t go away until Atti stops crying.

In that moment I feel the burden of representation. That’s my show for the public: the educator. The charming and approachable advocate of disability. The adorable little boy who makes disability not so scary. And in that moment when I want to tell them all to go away I think about my little friends whose disabilities carry disfigurements that make the world not so kind to them. I think of the kids without parents who can force a path in the world for them. I think about all the people with disabilities who are invisible to the rest of the world, who are pushed aside, who are unwelcome in public, who are vulnerable, and I think that doing a little education is not such a burden.

So while my child is crying I’m explaining Cerebral Palsy to the crowd. I’m helping them understand Atti’s speech and that he’s telling us how mad he is he fell on the ground. I’m showing them his chair and how lightweight it is. And inside I’m torn between wanting to respond to these people’s kindness with kindness of my own, and just shoving them aside to tend to my child.

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What are your kids hearing from you?

Atti Listening

Atti Listening

Atti still speaks in what we refer to as “catchphrases.” He’s like that kid in college who had a Dumb and Dumber quote for every occasion, only his quotes tend to come from his LeapFrog toys. There is a lot about that that stresses me out, but there’s also one side effect that makes me feel awesome. Like everything in life, there’s a silver lining in his dark thundercloud of speech issues.

Whenever Atti enters the room to find me, he greets me with “Hey! You found me!” Like I made a valuable and difficult discovery. Or he’ll say “Hi my sweet boy!” or “Hi my angel!” And because of the tense and gender he uses, it’s pretty obvious that he’s saying what he’s heard me say when I’m greeting him.

That’s a pretty powerful mirror to me. The fact that my little guy hears so many words of love and endearment from me just makes me feel like I am KILLING IT. And since there are plenty of other times when I’m not, it’s what gets me through those parenting pits of self-doubt and frustration. If all I ever teach my son is that he is loved, that’s enough. And he’s learned that.

I mentioned to one of Atti’s teachers how much I loved this and how I wished every parent could hear their words echoed back like that. She laughed and kind of shook her head. She said, “I bet that wouldn’t be a good experience for every mom.”

I think growing up the way I did actually gives me a leg up here. I’ve had a catalyst to approach this issue very carefully and thoughtfully since it’s my biggest terror that I’ll repeat the pattern and speak to my child the way I was spoken to. For people whose own parents never crossed the line into abuse but still screwed up occasionally, they haven’t had the reason to really examine things closely. Which means it is so so so so super easy to give in to frustration or lack of time or temper and say things in a way that we don’t mean.

Even if it’s just not saying what we mean. I turned out to be such an affectionate mom it kind of surprised me, but what surprises me more is meeting parents that don’t regularly say, “I love you.” I probably shouldn’t be surprised, my family never did, but now that I am a mom and I feel that love bubbling up through me and unable to be contained, it’s a mystery how anyone does. It’s not something that has come naturally to me, but as I’ve learned to embrace the vulnerability and express myself, I find the reward to be astounding.

This issue has me thinking a lot about things as simple as how I give instruction to Atti. Since my words become his words, I have to chose them carefully. And that thoughtfulness has ripples. I find myself examining my motivations, if I’m setting him up for positivity or if I’m dooming him with negativity.

For example, I need to teach Atticus how to be careful using his wheelchair. I could tell him, “be careful you don’t fall off the curb” or I could say, “you’re gonna fall off the curb!” Either sentence accomplishes my goal, but in very different ways. One uses love and thoughtfulness, and the other predicts a failure. One encourages him to act, the other discourages him from acting. If it keeps him from getting hit by a car, who cares? But if I have the time to think and make a choice, I want my teaching to be positive.

I think this kind of thoughtfulness is most important around issues of body image. We want our children to make healthy choices, but for the right reasons, or else those choices will become a different kind of unhealthy. One of my most vivid memories of my father is when he was trying to correct my table manners but did it in a way that made me feel ashamed of myself. And I wasn’t ashamed of my manners, I was ashamed of eating. Those kinds of messages are so powerful they’ve come with me my whole life.

But I think the good messages come along too. This part I have to take on faith since I don’t have much personal experience of my own. But when I see Atti scooting over to me with a “Hi my love!” it makes it easier. He has yet to repeat any of the words I’ve said in moments of weakness, so I think that my statements of love are winning.

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Growing up is breaking my heart

Atti's growing up

Whenever we stay at Grandma’s house, we all sleep in one big bed. It’s a luxury I treasure since we don’t do it at home – early mornings and places to get mean we actually need sleep, which we can never count on when Atti’s in the bed. This most recent trip I went down with Atti by myself while Bear stayed behind to work, so I had a big queen bed to myself and a snuggly little guy. It was heaven.

I snuck into bed after he had been asleep for a few hours and turned on the lamp so I could get in some hard-won reading time. In the lamplight I curled over to cuddle up to my boy, took one look at him slumbering there, and my heart snapped in half.

When he’s sleeping Atti looks so little to me. I can always see the baby still lingering around the edges. But with his mouth open wide enough for me to see the gaps in his teeth – gaps from his jaw and mouth getting too big for his little baby teeth – I felt that baby disappear forever.

Atti will be six this week. Six.

Every birthday has me feeling maudlin and sentimental, but this one is getting to be a bit much. He got his haircut and I cried. He wears jeans and t-shirts and looks like a big kid and I cry. He brings home school work and notes from his teacher and I cry. No mom is ever ‘ready’ for their baby to grow up, but right now? I’m taking it especially hard.

I think it’s the infertility. Each year that goes by without a sibling for him feels like I’m further and further out on that tail of statistical improbability. Each year older makes it harder, and less likely, that I’ll ever get to have another baby. I have to not only accept the fact that my baby is growing up, I have to try and face that this might be my only shot at motherhood.

Before I had Atti I always tried to hold a place in my heart for people suffering through secondary infertility, but it was always an exercise in radical empathy. Deep deep down, I really believed they didn’t have a right to ache like I did. They got to be a mom. They shouldn’t be greedy. But now I know so so so much better. For one thing, I know that pain is not relative, and anyone who tries to rank “appropriate” pain is just a jerk. But I also know what happens to your heart when you open it up enough to be a mom. I feel like this raw pulsing organ, running around with arms outstretched begging for someone to let me love them. I feel like I have no defenses. Like my vulnerability is wandering unsupervised through the world and I can never again pretend to be hard and closed off and impenetrable. My achilles heel is riding around on wheels and pushing his hair out of his eyes.

As hard as it was to not be a mom, and it was so so hard, it’s also, and a different kind of hard, to not get to be the kind of mom you want to be. Either way I had my coping devices. Pre-parenthood it was pursuing careers and education, taking advantage of my freedom, closing myself off to the world of babies and kids and putting all my attention on the adult world. Now it is wrapping myself up in my sweet little guy, getting kisses from him even if it means I have to trick him into playing a game where he gets to smash his face into my lips. I see now that there’s really no comparing the two. Being a mom of one doesn’t erase the pain of infertility, even as you enjoy every moment of it. Just like being independent and having opportunity doesn’t erase the pain of not having children, even as you enjoy every moment of that. It’s hard and it’s great. Full of silver linings and wonderful joys and also full of sorrow. It’s both at the same time.

No matter what the circumstances surrounding it are, it is always heartbreaking to want to love and not have an opportunity to give it.

I’ll be celebrating Atti’s birthday with him later this week, but today I’m grieving. Every bit of independence our kids achieve is us mom’s putting ourselves more and more out of a job. That’s tough for all of us. But it feels especially bitter and only a little sweet to me today. I love being a mom more than anything else. I want another chance.

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Atticus finds a soulmate

Atti watching Jellyfish
We spent the weekend off on a business trip for Bear that happened to be at Pebble Beach. So, yeah, that happened. The girl who lived in her car and learned to keep orange juice in the glove compartment because it didn’t go bad as fast as milk now has an opinion on which luxury resort spa has the better masseuse. I just…it’s too bizarre to fit in one lifetime.

But while I was getting massaged and pampered, and while Bear was off playing a world class golf course (all on his company’s dime), Atti was off spending time with his grandparents. They drove up from Orange County to watch Atti for us and they decided to all have a little vacation in Monterey while the parents were away.

When we first brought up the idea of going to the aquarium, Atti thought we were offering him goldfish crackers and got super pissed off when they never arrived. I’ve been taking him to zoos for years and he’s just reacted with the bored expression of a teenager being dragged away from their cell phone, but the last time we tried there was a petting zoo and he could not get enough of those goats. I figured he might be ready to at least not be sullen and screamy as my inlaws enjoyed a walkthrough.

Not living close by and having daily contact with Atti, they’ve struggled to learn his communication style. They have other grandkids they see much more regularly, and all but one are typically developing, bright little funny kids. And even the other grandkid with challenges interacts with them and speaks to them in his adorable little voice. Then they see Atti a few times a year, he doesn’t talk to them like the others do, and it’s easy to make assumptions. Most people do. When we’re together I have to spend a lot of time reminding them to not put limitations on him, to pick up on his cues, and to remember that he understands everything going on around him.

According to the inlaws:
There was one room in the aquarium that had a lot of statues of different things, but they weren’t really paying attention to them because they were surrounded by sparkling sardines swimming around the whole of the room. Grandma kept asking Atti if he was ready to move on to go look at the jellyfish, and he wouldn’t go to them. Instead he’d wheel his chair over to one of the statues and pat it. Grandma would let him look at the sardines some more, and then try to get him to leave to see the jellyfish again. So he’d go back over to the statue and pat it. Grandma said, hitting herself on the head as she told me the story, that it took her about four times before she realized that the statue he kept patting was a jellyfish. He was showing her he understood.

Grandma took that picture up there. He was entranced with the jellyfish.

Later in their visit they stopped by the octopus tank where the uncooperative octopi would only show the crowd their suckers vacuumed on to the glass. Atti was not so entranced then, but in the next room they got to hear one of the biologists talking to a group of kids about octopi. The speaker had an octopus with her and was explaining how an octopus’s body functioned. She showed the suckers on the tentacles and Grandma showed Atti how those were what he had seen in the tank. The biologist explained how smart octopi are – all the ways they can distinguish between trainers and even do tricks – and Grandma told Atti that the octopus was smart just like him. The biologist explained that octopi are very shy – how they can camouflage themselves and ink and swim away super fast – and Grandma told Atti how the octopus was shy just like him. She said, “The octopus is just like you, Atti! Very smart, and very shy.” As she told him these things, Grandma said that Atti’s whole face lit up and he just beamed. Grandma kept going, telling Atti stories about the octopus and how great it was to be shy and smart, and Atti was in heaven.

She was so touched to see it. He communicates so much to me that sometimes I forget how rarely he uses words or does it in a way others understand. But at the aquarium, Grandma saw it, and so did Atti. He stared at those animals until it was time to meet us, grateful to have somebody else in the world to understand him.

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Atti is not sneaky

Atti makes a mess
Since Atti is on his own unique path of development, I never know what to expect out of this kid. He’s nearly six years old and I still can’t keep him from playing in the kitty’s water dish, and then he’ll crawl over to me and we’ll work on learning addition in kisses. He can read like crazy and sings any song he hears more than twice, and yet he won’t even glance in the potty chair’s direction and throws screaming hissy fits when I turn the music off. He’s an eight year old and a three year old trapped in a five year old body.

But it kind of makes sense. For most of a kid’s early life, they learn through using their body. They conduct little experiments with their toys and learn how the world works. They learn cause and effect, they learn consequences, and as they grow their behavior matures because of what they’ve learned. Atti hasn’t had any of those experiences.

Some of those lessons he’s picked up along the way, but his knowledge is spotty. He’s like someone who didn’t go to school and is instead working their way through all the books of the library, one shelf at a time. In certain areas he’s an expert, but until he makes it all the way through the dewey decimal system, he’s going to be surprisingly ignorant of some subjects.

There are a lot of frustrations with this situation – helping people understand him and what he is capable of, getting him to behave appropriately, learning how to make school work for him – but it’s also pretty fun to be constantly surprised by this brilliant and creative little guy. With there being no really thing as “age appropriate” for him, I just get to keep giving him information and see what he can absorb. And then be delighted when new, more developmentally mature behavior comes along.

Atti’s latest development is trying to be sneaky. When you tell him he can’t have something, he’ll try and wait you out as he inches closer and closer, hoping you won’t notice until it’s too late. We were playing in bed together the other day and he was trying to get to something on my bedside table which I refused to let him have. He claimed he was done playing and crawled off the other side of the bed, and then I watched from over the book I was reading as the top of his little head bounced up and down, scooting from around the foot of the bed to my bedside table where he tried to stay low enough that I wouldn’t see him and he could still get what he wanted.

It’s those moments that really test your parenting mettle. You can’t laugh. No matter how badly you want to. You have to pretend you’re angry at him for disobeying you. But oh my gosh I love it. I love getting to see how his mind works, I love watching him solve problems, I love his determination. I just don’t love that it’s against me.

I really don’t have to worry too much, though, because I have a big advantage most other parents don’t when their kids try and pull things over on them. My child doesn’t have much motor control. Which really REALLY cuts down on the sneakiness. When you cross the house with a “SLAP, drag. SLAP, drag. SLAP, drag.” he’s not going to get too much passed me.

The other day he threw his kindle so it automatically went to time out. (We have a zero tolerance policy about throwing screens.) So I put it up high, set him in front of his other toys, and got back to work. After a few minutes I heard a GIANT CRASH. I went out to the living room and there was Atti, standing up on the couch, trying to reach the kindle. He had used the cord of the desk fan to pull himself up and in the process it dropped to the floor with a ferocity that popped the cover off and sent it flying.

Again, I had to bite my lip, furrow my brow to make an angry face and properly punish him for his disobedience, but inside I was laughing my head off. Both out of pride over his massive physical feat – pulling himself up on the couch, pulling himself to standing, reaching for the kindle – and because it is freaking hilarious trying to watch him be sneaky. Kids can be so smart and so dumb at the same time.

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“All Boy” is offensive. Stop it.

Muddy Knees
I really don’t believe that boys and girls are all that different. On some things, sure. Bear does the heavy lifting in the house, for example. And I am perpetually suffering through the effects of having a woman’s biology that is constantly trying to torture me, if not outright kill me. But most differences, I think, come down to how we’re raised. Men are usually taught not to deal with their emotions, so most women will seem more nurturing in comparison. Girls aren’t encouraged to play in the dirt, or wrestle, or play with trucks, so by the time they’re grown all that stuff is a world away from them.

We talk about this all the time in activist circles. LGBT rights and feminism are deeply concerned with our ideas about gender. We say that while differences certainly exist, there is far more difference amongst genders than between genders. You take someone like me, a crafter in heels and lipstick who is unathletic and doesn’t like getting dirty, and put me up next to a female forest ranger or firefighter. We’re both women, and neither of us should feel like we’re the “right” kind of woman, but who has more in common? Me and her? Or her and her male firefighter colleagues? The human experience is too vast for boxes about how men are and how women are. It’s just how people are.

And yet, there are definite trends. When I’m with my woman friends, I feel a power there in our shared womanhood. Is it just shared experiences? Or something more? My mom friends all tell stories of boys turning barbies into guns and girls turning trucks into baby dolls. Tiny little girls insisting on pink dresses and princess stuff. Boys making car noises before their first words. It’s an argument that sociologists, anthropologists, and hosts of other ists have been having forever – nature or nurture? Chicken or the egg? Are they taught this because they love it? Or do they love it because they’re taught this?

I was watching some dumb sitcom the other day and one plot line was the dad telling his son that whenever he wanted to get out of trouble with a woman he shouldn’t put up a fight, he should just immediately give in and say, “You’re right. I’m sorry.” He taught that with this one bit of wisdom the son could get away with anything, just use these magic words afterwards and he could always have his way. The kid then went on to pull all kinds of shenanigans and get out of trouble every time as he would just say, “You’re right. I’m sorry.” to his sister and aunt when he got caught. Because women just want to be right. They don’t care what you do, as long as they win the argument in the end.

It was just a dumb sitcom, but by the end I was fuming. That’s not how women react, that’s how PEOPLE react! Because you APOLOGIZED! Only a jerk would reject the apology and keep yelling just to satisfy their own rage. When someone says I’m sorry, people who haven’t been raised by wolves stop being angry and accept that the lesson has been learned. But in the world of this sitcom, women are nags always trying to keep men from doing what they want to do.

I could write a book about how and why this happens (short version: too many men in the writer’s room), but it happens hundreds of times a day. Every day. And eventually we stop noticing it. The world we live in teaches us that men are one way and women are the other and we rarely stop to consider if that’s how it really is. Underneath the razor commercials and anti-aging ads.

This is another one of my silver linings in being a mom of a special needs kid. The rule book was stripped from our hands and it was terrifying and overwhelming, but it means that the only rules we have to play by are the ones we make for ourselves. I think many moms get there one way or the other. We were kicked into that lesson.

The first time I was at a scrapbooking night and realized how many cute papers and embellishments I’d never get to use – first steps, baseball games, soccer teams – it was heartbreaking. And then right behind that realization came the thought that if I was rethinking what and why and how I scrapbook, that meant I didn’t have to use any embellishments just because it was what they were selling, and I started thinking through everything I was seeing on the shelves. Out went the “All Boy” stickers, the “Little Man” die cuts. Those things are gross, and offensive. People use them because they love their children and they’re proud of them, but think about what the opposite might mean. What exactly is someone who’s not ‘all boy?’ A girl? A gay person? A trans person? And if you’re bragging that your child is All Boy, does that make it bad to be something less than that?

The “All Boy” stuff is almost always covered in tire trucks and mud, camouflage, sports balls. What if you have a kid like mine who loves hugs and kisses, music and books. Where are the All Boy papers covered in letters and numbers, or kissy marks? They don’t exist. Because when people say “all boy” they mean something very specific. And anything different is not All Boy and therefore not worth bragging about.

When I saw these muddy knees, my heart lept. Not because he’s “All boy” but because of how hard won that playtime was. These muddy knees represent Atti dragging himself through the house, out the door, and into the grass. It shows that he got up on his hands and knees after years and years of therapy to accomplish that. It’s that work ethic that I am proud of. His love of nature. Who he is. Not because he’s officially checked off the “Boy must play in dirt” box.

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Disneyland with Disabilities

Disneyland with Disabilities
Atti and I spent last week down in LA on a business trip. I got to go to what is quickly becoming one of my favorite places in the world – Maker Studios – to film some segments for the Youtube channel I’m a part of, The Mom’s View. And then as part of a press day we got to go to what is quickly becoming one of Atti’s favorite places in the world – Disneyland.

Atti on the Teacups
How Disneyland deals with guests who have disabilities has changed since the last time I went there with Atticus. Before I just had to show up and claim a disability and they gave me a little pass that said how many people were in our party and let us through the back door of every ride. This was super convenient before Atti had a wheelchair but was still too big to just carry everywhere, and it allowed us to stay with our cousins all day and not split up to wait in two separate lines.

But like most good things in life, people had to go and ruin it. [I initially had a sentence here that commented on other special needs parents who used this pass. I had a specific encounter in my head, but wrote it vague to not call the person out. But then my vagueness left lots of room for causing offense. I’m sorry to anyone I offended, and for the record, sensory issues at Disneyland absolutely qualify in my book for getting whatever help available.] But the people that really caused the trouble were rich elitist jerks who actually *hired* people with disabilities to act as their guides and get them bumped to the front of the line. There are so many ways that is gross I don’t even know where to start.

So without those precious guest access cards, I didn’t know what to expect.

Atti and Grandma on the rocketships
Since I was making a video I asked the gal at Guest Services to go on camera and discuss the new policy, but she politely declined. She said that the foundation of their new policy is to customize the experience based on the needs of each particular person. She asked us to just communicate our needs to any staff member who would be happy to help, and gave us a brochure with all the information we would need – which forms of transportation were accessible, where there were bathrooms with disability access, and how to line up for each different ride.

I had my suspicions. A day begging for help amongst the throngs of Disneyland did not sound like fun. But happily, I never once had to beg for help, or even ask. People anticipated my needs everywhere we went and made it even easier than when we went with that magic guest access pass.

Atti on Buzz Lightyear
My favorite moment of the day was taking Atti on the Buzz Lightyear ride. They have a special carriage you can roll a wheelchair right onto. They stopped the conveyor belt to give us all the time we needed, and even let us go around twice so we wouldn’t have to get out and go through all the trouble of getting back on again.

I really can’t express what that meant to me. Atti’s still little enough that transferring him in and out of his chair isn’t the worst, but I won’t be able to say that for long. And even now, after a full day of lifting him up and over, carrying him into weirdly shaped carts, lifting his wheelchair over and over again, pounding the concrete pavement of that massive park, my back is done for. One ride where I don’t have to lift him made me so grateful I could cry. That that was the ride where he needed to use his hands was even better. If he had to use all his concentration and effort just to sit upright, he never could have used the laser gun to defeat Emperor Zerg. But since he was in his chair with all his safety straps, he grabbed that gun and went to town.

Dory gives a kiss
I can only imagine that in changing the policy Disneyland gave extensive training to its employees because we were treated like kings. When we went to see a stage show the ushers weren’t content with Atti just stopping wherever there was room, they found him the best seat they could find even though it meant they had to move some things around. Then after we were seated and some other Disney staff members realized the people in front of us were big dudes, they offered to ask them to move so Atti could see.

At the parade they made sure Atti had a front row seat and Dory came in close for a little make out session.

Buzz Lightyear mania
That front row seat meant he was *thisclose* to Buzz Lightyear. It’s like he saw the Beatles.

Pound knucks
Even the tram ride back to the parking lot was amazing. They used three point tie-downs to secure his wheelchair, just like they do on a schoolbus. And the tram driver made faces and mickey ears for Atti to entertain him while he was being strapped in, and finished by offering him his knuckles to pound. Literally not a single staff member we met this time was anything but eager to help, including the sweet gal who offered to help us get on the teacups as we had literally just exited the teacups. They are so on top of things that all we had to do was pause near an exit door and we found ourselves on the ride.

Wonder
The first time I ever took Atti he was using a stroller as a wheelchair and even though I had that magic guest pass, I still got a fair amount of stinkeye from staff members. And after reading the articles about how people abused the system, I get that. It must get really wearying to have to make all these special allowances for people you’re pretty sure don’t need them, so annoying that a little of that annoyance pops through even to the people who do need the help. But by customizing the program to the individual, it brings out the best in everyone. They don’t have to police anything, they just get to be generous.

As tempting as it is to say, “There’s so much my kid can’t do, doesn’t he deserve this break?” I’m learning that special isn’t better to these kids. Same is better. Normal is better. Being able to wait in the same line as their cousins and not split up over and over again is so much better. I will happily wait in lines all day, if it means that my kid gets to experience Disneyland just like any other kid.

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