Feeling Rebirthed

Easter 2014
We had a quiet Easter over here. Just the three of us with a no-frills ham dinner, matching clothes courtesy of Old Navy so I didn’t even have to work at that, the first hour of church and then a visit to Bear’s work to check in on the patients and spend the holiday with his work family, then home for a nap. It was exactly the speed I’m running right now.

Last week I went in to get my second shot of Lupron and they couldn’t give it to me. The medicine got recalled and they didn’t have any new stuff. They seemed to feel that the dose I got didn’t apply to the recall, but I’m wondering if that’s why things have been so different this time. Why my emotions are on overdrive and completely disconnected from my brain, why I’m still feeling pain a month in, why I’m still living with the worst of the endo symptoms and the worst of the Lupron symptoms at the same time.

But all this time being forced off my feet has been so good for me in so many ways. I’m a big believer in what Joyce Carol Oates calls “Therapeutic Boredom.” That it’s only in the still and quiet times that healing can take place and discoveries can come to light. I’ve made a whole bunch of changes behind the scenes that are too inside baseball to bother talking about since they won’t change much about the blog but change everything about my workload. I’ve spent time examining my goals to see if what I’m spending my time on is what I really truly want out of life or if it’s where I’m spending my time because it’s “enough” for me. I’ve asked myself if I’m doing what I really want to be doing or if I’m doing things as a distraction from taking the risks I really want to be taking. And I’ve found some new horizons for myself.

Like I said, all this vague blogging won’t change a ton here, and it’s all too early to discuss even if it would, but I’m writing about it because I feel like I’m not alone.

I worked at a M&A firm back in the early 2000′s, and when the economy dropped our work dribbled away from a crazy torrent to a whole lot of nothing. My boss at the time called me into her office to talk to me about how much time I was spending on the internet and she said something that’s stuck with me, “We have to be careful not to let the work expand to fill our time. We have to let our time expand our work.” It was a great reminder then to use our slow time productively and to work just as hard in the slow times as I did in the fast times. But I also think about it a lot in my motherhood.

I can get so obsessed with getting a recipe right that I go a whole week without making dinner for my family. I can take something like a Halloween costume and make it as time consuming and important as the Oscars. I can have a big idea or a big dream and put it off for months or years while I work on holiday decorations or printables. None of those things are invalid or wrong by themselves, but they are a distraction if they’re not what I truly want for myself.

So with this slow down I’ve been forced to take, I’ve been asking myself some hard questions and reshuffling my priorities. And then a funny thing happened. I rediscovered my love for what I’ve been doing all along. I longed to come back here and talk through all my thoughts, I felt my creativity revving back up, but I also found the drive to tackle the big dreams. I had just let things get out of order and putting everything back where it belonged helped me rediscover my love and enthusiasm for all of it.

So hopefully soon I’ll have the big dreams far enough along to share, but in the meantime I still have some great things coming up. I’ve finally begun tackling the Master Bedroom makeover I’ve had as a crafty goal for more years than I can count and I have some pretty amazing results to share with you. And a whole new attitude while I do it.


Hormone Crazy

Hello my dear friends. Thanks for being so patient with me during my unexpected hiatus. And thank you ever so much to those of you who emailed to check up on me. You folks are good people and the world is better because of you. Thank you for your kindness to a lady from the internet.

I’ve gotten walloped by a bunch of bad things in a row and I just plain reached the end of my resources. The final straw was starting this new course of medication. It’s not new to me, this is my third round of Lupron and it’s been a miracle drug for me every time, but this time around is totally different. Lupron often comes with some pretty gnarly side effects, and until now I’ve been lucky enough to largely avoid them. But this time? Holy crap. My brain has been snatched and replaced with that of a 12 year old girl. It is marinating in hormones so powerful that I cry because I’m lonely when my family is in the room, I cry because I love them so much, and then I cry again because I miss Atti when he’s asleep. I cry because it’s raining, I rage because I have a food craving I can’t satisfy, I laugh hysterically at how ridiculous I am, and then I cry at how ridiculous I am. I’m weak and lightheaded with hot flashes that keep me up all night and then fatigue that nails me to the couch all day.

These three weeks were exactly what I needed – the permission to just deal with what I need to deal with and to disappear for a while. I’m not yet over the worst of it – I get a shot every month and I’m hoping that the second shot will bring me a little equilibrium – so I’m still going to have to take things a little easier than I used to, but at least I’m rested now and not at such a low emotional ebb. And who knows, maybe at the end of all this I’ll not only be healthy, but manage to get a little baby out of it all too.


Welcome Back Endometriosis. You weren’t missed.

I’ve had to come to a tough realization over the last couple of weeks: The endo is back.

It never truly goes away. Whenever I finish a course of the drugs that put me through menopause I start right back up with the slow growth process. Eventually I have to admit that midol won’t get me through my period. And then slowly I’ll go from having one bad pain day to having a bad pain week when I’m on my period. And then eventually I’ll have pain around the time of ovulation. And now I have to admit that I’m having pain every day.

This really blows.

Aside from the obvious, pain hurts and that sucks, it’s hard to manage my life when I have to be on serious pain killers. Right now I have to wake up and rush through any work that requires my faculties. Any writing, any thinking, any interviews or public speaking, I have to do it all while gritting my teeth until I have to cry uncle and go take the drugs. And then I have to deal with all the guilt and shame that comes along with chronic illness – feeling like a waste of space, feeling guilty for being a burden, feeling intense intense shame over being stoned in front of Atticus and not present for him. Every day I have to decide, do I want to be in pain? Or do I want to be functional? Which is a higher priority? And because a mom taking prescription drugs is such a ridiculous cliche, I try as hard as I can to never let people see me medicated. I’ll talk about it publicly on my own terms, but I don’t ever want a teacher or bus driver to see me altered. And I obviously never drive on medication – duh – which puts another crimp in my life management plans. No trips to Target for diapers or to the grocery store when the fridge is empty.

But what I’m really struggling with right now is the fear. I’m afraid it will get as bad as it was in my 20′s when I was completely disabled. Back when I first started blogging because I was on pain medication every minute I was awake and I could go weeks without talking to a human besides Bear. I lost a decade already to this disease, it’s terrifying to contemplate going back there.

Of course, this time I actually have health insurance. I have a doctor who doesn’t think I’m crazy or that periods are supposed to hurt. I have a treatment plan in place and I just have to wait until the medicine is available at the right time in my cycle. It shouldn’t be much longer before I’m complaining about hot flashes and food cravings again.

But for today, I’m mourning. I’m mourning my own limitations, I’m mourning the pain I feel and all the emotions that come with that, and I’m mourning that I can’t be the kind of mom I want to be. I guess the good thing is that in just a little while the pain medication will kick in and I’ll find it all hilarious.


How to cope with suicide

Atticus looking at the light

Someone close to us killed himself two weeks ago, and we spent the end of last week traveling down and attending the funeral. It is tragic and heartbreaking, but out of respect for the family I’m not going to talk about that. Instead, I want to talk about how to cope in the aftermath.

As someone who struggles openly with mental illness, I want to speak for those who commit suicide.

There have been times in my life with the threat of suicide was very very real. Times when I had a plan and the only thing that kept me from enacting it was people who helped me when I reached out to them. So I feel like I can speak from experience when I say: no one does this because they’re thinking rationally. Teenagers have their own unique dilemmas that threaten suicide, but if we’re talking adults? They do this because the disease they are living with – depression, bipolar disorder, addiction – has overcome them. It’s the disease that ends their life. Suicide was just the form it took.

That distinction is crucial in every way. When we process a loss, we all go through the anger stage. This is a normal and healthy part of processing our grief and isn’t something to be avoided. But when it’s suicide that complicates that loss, the anger stage contains a specific component that blames the loved one. We talk about the person “giving up” or say they “couldn’t cope.” That they’ve abandoned their family or sneer that suicide is a “permanent solution to a temporary problem.” Well, sometimes that problem is temporary – the problems that often affect teen suicides can be temporary – but sometimes it isn’t. Mental illness and addiction are not temporary. And if someone dies from suicide after a struggle with a permanent problem like that, it’s not because they couldn’t cope. It’s because the treatment failed.

If someone had cancer, and they had good care from doctors and fought through chemotherapy and they still died, we would never say it was because they couldn’t cope or lament that they weren’t stronger or criticize them for being selfish. We would say the treatment failed. That despite every effort the cancer did not respond to chemotherapy and it took their life. That’s how we need to treat mental illness and addiction. (I keep saying mental illness and addiction because I want to pay special attention to addiction. It is, in fact, a mental illness and should be taken every bit as seriously.)

I am extremely lucky because in a nation where it is far from the norm, I have had access to mental health care including prescription medications. And I’m lucky again because the medications work, and I am absolutely diligent about staying healthy with the help of supportive family and friends. Not everyone has that string of luck.

We have no real treatment for addiction. There is no medical treatment, there is no cure. We have some excellent therapeutic tools, but we have no way to change brain chemistry or structure in a way that consistently and reliably counteracts addiction. Which means that every person you know who is sober and living with addiction is performing a mind over matter feat of strength that should humble us to our core. Unless we can use our mind to lower our cholesterol or blood pressure, how dare we judge an addict whose disease ends their life?

Blaming a victim of suicide for being weak reinforces the stigma surrounding mental health and feeds into the diseased mind that tells us the world would be better off without us, that we’re too much of a burden on our loved ones, that we shouldn’t reach out for help, that we’re not capable of coping.

But it also is a tragedy for the people left behind.

Your loved ones didn’t commit suicide because you didn’t love them enough. They didn’t commit suicide because they didn’t love *you* enough. They didn’t do it because you enforced boundaries or consequences or to teach you a lesson. They did it because the disease overwhelmed them and the treatment failed.

No other cause of death has us feeling so guilty. We wouldn’t tell ourselves that if we had put up with the cancer better than our loved ones would have survived. If only they loved us more they wouldn’t have been overcome by the tumors. If we had loved them better than they never would have gotten cancer in the first place. All of those thoughts are absurd, but when you replace cancer with addiction, they are commonplace.

Mental illness is a disease. Addiction is a disease. And losing someone to it is tragic, but it does not make them, or us, weak. All we can do is rest in the knowledge that their fight is over and try to leave room in our hearts for the knowledge that whatever length of time they managed to fight this disease was heroic.


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.


Mental Illness at Christmas time

Christmas Takedown
The holidays are a tough time to have wonky brain chemistry. The few hours of daylight, the pressure to be happy happy happy, the family get togethers that often remind you of how screwed up things are, it all gets to be too much for a depressed brain to deal with.

My brain is a complicated mix of brain chemistry and conditioned behaviors and the way things work together is sometimes awesome, and sometimes decidedly not. Since I have both Obsessive Compulsive Disorder and Bipolar II Disorder, sometimes those things combine like the Wonder Twins and I get creativity, energy, and focus. Other times I can’t pick up the phone or leave my house.

During Christmas time I tend to be more manic than anything else, and I think that’s mostly because of this blog right here and the big plans I commit myself to every year. Mania can be provoked by creating the right conditions, and for me that’s stress, deadlines, and a lot of work. So right up until Christmas Day I’m humming along, fingers flying, making and making and making and not bothered in the least by the sun going down at 4 o’clock.

It’s right after Christmas Day, when the work stops, when most people are relaxing with their families and taking time off, that I start the slide down to the depressed pole. And typically I stay there throughout most of winter. Looking through the archives, you’ll never find the New Year greeted with the ferociousness of Christmas. I often don’t even get my New Year’s projects up until February, because it takes that long to navigate through the molasses of depression that closes in as the last of the wrapping paper is thrown away.

This year we were slow to end Christmas. One cold, and then another cold on top of that cold, and then the stomach flu, meant that we were not exactly on top of our game. I think I finally have to admit that my Christmas cards are not going out this year, despite paying for a photo shoot and getting my favorite picture ever, because on top of the epic string of sickness I also had my local Costco lose my print order not once, but twice. I was not letting go this year, hoping that it wasn’t too late to get those out, and then just yesterday I finally had to face facts. The cards weren’t getting out, my house needed to be cleaned, and it was time to face the New Year.

But of course, going so big for Christmas means that it’s a big process to take it down. And this is where the OCD became a real problem. Boxes stacked up everywhere, pine needles and glitter on every surface, a huge pile of dried sap on my wood floors, trying to keep Atti away from stacks of boxes threatening to crush him, and the chaos – the total swirling chaos. Last night when it became clear we were not going to get Christmas cleaned up before it was time for bed I had an honest to goodness panic attack. Not a “Oh dear, I’m finding this stressful!” moment. A hyperventilating, weeping, clutching at my heart, panic attack at the thought of having that chaos in my house while I slept.

But I’m not new at this. I did what I’ve come to think of as “working the program.” (Which is recovery speak for any of you friends who aren’t Anonymous :wink wink:) I took my medication, I spent some time meditating on the scripts I want running through my head, I exercised some self-care. So I think in this sordid tale of mental illness, this is what I’d like to tell my friends walking this road with me. I got through it. I did sleep. I got up this morning and I got to work and I did it. I’m typing this in a clean house, with a clean and orderly garage full of decorations waiting for next year’s celebration of abundance. I’ve got a list of New Year’s plans on a notepad next to me and I’m looking out my window at my giant dog basking in the winter sunshine.

In the midst of the suffering, it’s hard to think anything will ever be OK again. But it will be. We can do this. These are the hard months, but they’re not impossible. Batten down the hatches, commit to health, and let’s get through this together.

Christmas Card 2013

New Year Card 2013


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.


“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.


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.

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.


The power of a look

I didn't do it
My journey into motherhood has been so complicated, I’ve never really felt like there was one moment where I wasn’t a mother and the next I was. The whole thing has been a gradual growing into process, first while we waited for Atti to be healthy enough to come home, and then over and over again as we negotiate each milestone at such a different pace as the kids around us. When I sit with other moms and talk motherhood, there are so many times that mine doesn’t feel official somehow. Like we’re the Jamaican bobsled team making things up as we go and watching the precision and success of the Swiss team whooshing down the course. Our little family huddles together, reminds ourselves to keep our eyes on our own work, and adapt parenting to work for Atti, even if that means we never swap stories with other parents like comrades in arms.

There was a brief time there where I could always rely on a poop story to fit in, but now that Atti’s nearing six other parents don’t laugh at those stories as much. Their eyes just widen in terror at the thought of a life without potty training.

Put it away
Lately Atti has developed a love of playing under my sink. I have a basket filled with lotions and things and he loves to pull out all the different bottles, give them a squish, and play with them like building blocks. Which I wouldn’t really mind, except there’s also nail polish remover and hair dye under there, and, I know I’m a bit of a worry wart, but I don’t love the idea of my child playing with poison. I’m very consistent with discipline, and Atti’s old enough to understand consequences, so I haven’t baby proofed anything, I just expect him to make good choices.

But those dang lotion bottles have proven irresistible. He asks to watch Super Why as he lays on my bed, and as soon as the show ends he climbs off the bed, opens the cabinet, and I come in to find him with a lotion bottle in his mouth.

The other day, after a week filled with time outs and lotion bottles and more time outs and more lotion bottles, Atti got into that dang cabinet again. At the end of my patience I just put my hands on my hips and looked at him silently, biting my tongue so I didn’t yell. Atti just looked up at me, saw my face, and started putting the lotion bottles away without me saying a word.

With one look I was able to stop and correct a behavior. That is pretty dang official mom material to me.