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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Year of Pleasures – Love Note

Love Note

Atti has a lot of trouble with fine motor skills. Those darn fingers of his won’t listen to do much more than follow the pointer finger around. So a lot of the therapy he does involves art so he can practice working with little pieces and give those other fingers a job. He’s still obsessed with the alphabet, so his OT gives him a lot of foam stickers to work with – it’s something he cares enough about to keep at while he’s frustrated trying to get the backing off the sticky part.

I visited him the other day and his OT helped him cut out a heart shape with special scissors, then asked what they should spell. I admit, this was my suggestion, but Atti got all excited and spelled it out himself. He was so proud of what he made he could have busted wide open, and so was I.

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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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Milestone

Atti Kiss

All of last year I felt like I was drowning. Whether it was the life threatening depression that turned out to be a med reaction to my endometriosis treatment, or the kidney stone that sent me to the hospital, or to finish out the year, freaking whooping cough, I was limping through just trying to make it through the day. In that condition I had to jettison every responsibility that was more taxing than breathing in and out and not dying. No more craft designing, no more blogging or Youtube-ing, no more contributing to the household. Bear has proven once again to be an exceptional partner and over the year he’s handled meals, organized help, and gotten Atti on the bus every morning.

As I’ve recovered, that last task was the one that loomed larger and larger in my mind. Slowly I started adding responsibilities back into my day. I’d do the laundry, I’d go grocery shopping, and then I’d fall ill again. I’d start to recover, blog through December, and then get sick all over again. But as I felt better and felt empowered to start picking the pieces up again, any mention of being responsible for waking up early to get Atti on the bus would send me into a panic.

You know that one thing that really isn’t that hard, but you dread it and so it grows and grows and becomes even more insurmountable to you? Like calling the credit card company or making the appointment or going to the DMV. It will just take a minute and then you’ll be done, but you can’t bring yourself to do it? And the more you put it off the bigger and bigger it grows until you just can’t see how you can possibly manage it? That’s how getting Atti on the bus became to me.

I should stop here and say – I know. This is nothing special for parents all over the place. And I am super lucky to have a partner who can take over for me for so long. But Atti also isn’t your typical nearly seven year old and getting him ready is A LOT more intense than shepherding him around the house as he dresses himself and eats his own breakfast. It’s a very physical labor that involves lifting and hauling and bathroom trips and trying to yank pants over his hips and putting braces on his legs and carrying him to his wheelchair and getting the heavy wheelchair full of kid down our super steep driveway without accident. It’s all the work you used to do with an infant, but that infant weighs 40 pounds. And is on wheels.

So it’s hard work that I wasn’t capable of for a very long time. Because I was too weak, because the most important thing governing my mental health is the amount of sleep I get and for a long time I couldn’t count on getting that by 7 am, and then because it had grown into this overwhelming and terrifying task loaded with shame. Because this is nothing special for parents all over the place, what was my problem? Because I love my son with ferocity and I couldn’t manage to do this for him. Because I was forcing my partner to carry all the weight of our family by himself. And that shame grew and grew until it threatened to bury me.

Today I got Atti on the bus. It was difficult, just like it is on my best day, but I managed it. And as I kissed him goodbye and he went through his morning goodbye call and response (“Ba-Bye! Have a good day at school! Mwah!” Repeat two times) I nearly broke out in tears. Because I did it. My fears of falling to pieces or not being up to the task didn’t come through. I have been beating myself up for months that I wasn’t able to do this for Atti, comparing myself to every other parent, and making the mistake that just because a task is common, doesn’t mean it’s easy.

I conquered this big shame covered complicated task and that means that I am officially back on my feet again. A little wobbly, but here.

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2015 coming in with a wheeze

She-Ra

In case you’ve missed my whining on facebook or twitter or instagram, I have Whooping Cough.

Bear thinks it’s hilarious. He keeps asking me if I need to eat citrus for my scurvy. Or if I need to watch for symptoms of Scarlet Fever. Of course, I would get this stupid old-fashioned illness that most people get vaccinated for and never even think about. Of course I would.

Just before Thanksgiving I had such crippling abdominal pain I couldn’t move. I actually had to have Bear call the ambulance and a bunch of dicky EMT’s stood over me and yelled at me to stand up while they rolled their eyes at me laying on the bathroom floor in shock. Luckily my ER doctor was an angel and ran every test and determined that I had passed a kidney stone and had a kidney infection.

And all that is after six months of suicidal depression because of a reaction to medication.

So basically, it’s been SUPER FUN over here.

I had hoped that the New Year would bring me a new lease on health, or at least back to my typical state of functional enough poor health, but here I sit, unable to change the laundry over lest I exert myself too hard and have a coughing fit. I am so over this bullshit.

In good news, we have a new member of our fuzzy family and she is taking very good care of me. Every picture I have of her is blurry because it’s taken from about two inches away while she’s sitting on my chest. She takes her role as nursemaid very seriously. Her name is She-Ra because she’s my little princess of power, and she’s another purebred Ragdoll, this time with lynx point markings. I love her and say the stupidest and most ridiculous things to her in the stupidest and most ridiculous voice. I wish I could blame the cough syrup with codeine, but it predates that.

Since Cheetara died, I have been missing my own little companion. One of the reasons we love Ragdolls so much is that they pick their person and bond to them. Gizmo is Atti’s cat, Jem is Bear’s, and my lap has been empty for years. Finally, FINALLY! I’ve convinced Bear that that can’t go on any longer. We are a three cat family. I think he just felt sorry for my stupid sick body.

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JORD watch giveaway

JORD watch
While I was sick I had to quit a lot of gigs. I left design teams, I returned products and money for posts I’d agreed to write, there were a whole lot of opportunities I had to let go of in order to get healthy. That’s hard on a whole number of levels. It’s hard to have your work suffer, it’s hard to feel like you’re burning bridges or letting people down, it’s hard to admit your limitations. Everyone was nice and understanding, but there was one company that went so far above and beyond that I have to brag about them at the same time I brag about their product.

Months ago, like maybe around Mother’s Day, the folks at JORD watches approached me about reviewing their product and hosting a giveaway. I went through my usual screening process, checking what the corporate values were, if the product was sustainable, and of course, whether I would actually spend my own money on the product. JORD is committed to using sustainable resources in the sourcing of their products, and when I first started learning about them they had just released a special watch design with proceedes going to the Pujols Family Foundation, a charity dedicated to those living with Down Syndrome and those in poverty in the Dominican Republic. The watches passed all my tests so I asked them to send me one that I could try out.

For real – it is indescribably gorgeous.

I love it. I truly love it. Wood is such a beautiful material that I love having something so fine to celebrate it. It’s not cold and it doesn’t trap my arm hairs like a metal band, but it also doesn’t sweat like a leather band. I wore this throughout a sweaty summer and felt just fine. It’s surprisingly light, and it’s so unique I get comments every time I wear it. It’s the best thing I’ve gotten in ages.


So even if all that happened was that I got a beautiful new watch I was totally besotted with and recommended it to you guys, it would be a successful partnership. But how the marketing manager I worked with treated me was what bumped this up from a post about showing off something pretty to an unqualified rave.

Like I said, everyone was nice. All the corporations wished me a speedy recovery, they all held doors open for me to come back, everyone was understanding and supportive. But they also have a job to do, so most of them went for the quickest resolution to our relationships. One company emailed me several times a week to make sure that we settled on square terms – not really easy for me to deal with when my health was such a concern, but never rude or unwarranted. JORD, however, just sent me support and well wishes and told me to take my time, they’d check back in around the holidays. They never suggested that I send the watch back – which would have broken my heart but they would have been well within their rights to do it. I never got an email that didn’t first address their support and concern for me, and by the way, could I just give them a timeline, and also, if they could do anything to help me they would.

I’ve worked corporate marketing jobs, so I know that one individual nice person can only go so far. That nice person has bosses with their own timelines and agendas. They want to know how their marketing budget is working out, where to put their future marketing dollars, and see some return on their investment. The fact that they set all that to the side, along with the concern that I’d never fulfill my agreement to them and just keep the watch with no marketing at all, meant that they prioritized respect for people over their business agenda.

How rarely does that happen?! As major chains make their employees come in on Thanksgiving, it’s getting harder and harder to find companies that make you feel like you’re putting your money in a good place. I’m so happy to recommend a company that makes a beautiful product made by good people.

wooden watch
And you can have one too! JORD has earmarked another of these beauties to give to one of my readers. Just leave a comment and I’ll pick a random winner on Black Friday. Good luck!

**Disclaimer** JORD gave me a watch to try but all thoughts and pictures and opinions are my own.

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Developments for Atticus

AtticusCan

In keeping with this crappy year, I am not the only member of our family facing medical problems. For Atti’s whole life we’ve been watching his hips to see if they would be damaged by the tight spasticity of his muscles, and that time has come. His hamstrings are so tight that they’ve pulled one of his hips out of its socket. It’s so far out you can actually tell by looking at him when he’s crawling around pantsless. It’s like his own muscles are drawing and quartering him. Sorry. Gruesome, but you get the idea.

Eventually Atti will need a total hip reconstruction. But before that can happen they need to get the spasticity under control. It wouldn’t do to reconstruct his hip only to have the muscles pull it right back out of socket again. We did a test last month for a muscle relaxant for him and it went really well, so later this week we’ll have a final consult about what the plan will be before having a surgery to implant a pump into his abdomen.

The Baclofen pump works in the same way as an insulin pump. It’s implanted in the abdomen, just under the skin, with the medicine going into the spinal cord to avoid the side effects you’d get if the medicine went to the brain in large doses. The dosage is fine-tuned to get the best results for each patient, and more medicine is filled by injecting through the skin into portals in the device. I’ve heard all the miracle stories, and during the trial it was obvious that Atti was relieved from discomfort and pain he lives with as part of his normal. It’s all going to be a good thing.

And yet, this is grieving me like nothing else. The thought of him having this hockey puck sized protrusion from his sweet little tummy… the thought that it might hurt him if we play Bongo Belly like we have his whole life…his sweet smooth little belly scarred up…I’m just so deeply sad.

It’s kind of arbitrary the stuff that really gets to us. He’s had so so many surgeries. He has scars, he uses devices other kids don’t, he’s already “different”, but braces and scars never bothered me before. I don’t know why this one makes me so sad. I have scars on my face, on my feet, and a giant one on my own belly courtesy of Atticus himself, and I never even think of them. It’s part of being a human and they don’t trouble me in the slightest. But I guess this is the straw on the camels back. I’ve been brave and pragmatic about everything else. This one I’m just going to face weeping.

Compounding my grief about the implant is the knowledge that we are running out of time. His entourage always used to talk about his future with the worst case scenario being “IF” he doesn’t leave the chair. It was expected he would walk, anticipated, planned for. Now I’ve seen them all subtly shift to “IF” he walks. It’s still something we’re hoping for, working towards, but it’s become the long-shot. I tell the doctors and nurses and therapists that he’ll be seven in February and universally their faces fall as they cast worried glances at each other, wondering if they’re going to have to break me the news. They don’t. I understand. 8 years old is the benchmark. After that the pre-pubescent changes begin and there’s no keeping up with them. His growth plates are closing, and so is our window.

Living a whole life in a wheelchair is hardly the worst thing that could happen. With more wounded veterans in wheelchairs, maybe by the time Atti is grown there will be more accessibility, or even new devices. My Father-in-law is always talking about how one day they’ll implant microchips in our brains and disability will be a thing of the past. It cracks me up, but he’s not crazy. If Atti had been born ten years earlier he and I would both be dead, so who knows what developments will occur in between now and his independent adulthood.

But still. It’s hard to let go of dreams. It’s hard to let go of that vision in your head of your child in a jersey or on the track. To accept the fact that life will be harder for him. There will be places that will be inaccessible. That he will know pain and have his body scarred. But all those things have been true for me and I wouldn’t trade my life with anyone. In the future maybe he’ll have a microchip in his brain, maybe he’ll have one of those walking exoskeletons, maybe he’ll be part cyborg. I really don’t care as long as he gets to have the fulfilling, independent life that is my heart’s true dream for him. This surgery is the next step there.

Both to independence, and to being part cyborg.

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Here comes the sun

SunThroughClouds

Hiya friends. So, it’s been a little while.

I have gotten so many wonderful loving emails and FB messages and blog and youtube and instagram comments, you guys mean the world to me. Truly. Thank you for thinking of me and reaching out and caring.

This has been a really really really rough year. Which means it was the best possible time to go on massive fertility drugs. I’ve been on Lupron three times before without incident, but this time, hoo boy. Was quite different. For the last five months I’ve been spending all my energy on trying not to kill myself. I know that sounds so dramatic and shocking, but it was. And I feel the need to speak it plain like that because when I would ask for help people would often blink at me, terrified. No one knows what to say or how to help other than, “Please don’t do it.” But I didn’t *want* to do it, my brain was trying to kill me.

After five months of white knuckling, relying too much on stressed out terrified friends and family, and finally finding a psychiatrist in my area, I ended up starting an outpatient psychiatric program. For six weeks, five days a week, six hours a day I would sit in classes and group therapy while my meds were tweaked and reactions monitored. It really did save my life, because you know when you watch those pharmaceutical commercials and they talk about the huge list of problems it causes including thoughts of suicide and you think, woh, the cure sounds worse than the disease. That was true.

For some reason, this time on the Lupron I went into the deepest, darkest depression I’ve ever known. I was tortured with thoughts of needing – not wanting, I did not want it – to die. I would hold Atticus as long as he would let me and cry and cry and promise that I was going to be brave like him. I would move from the bed to the couch to the bed and count it as a good day because I made it through. My psychiatrist put me on some new medications, and day by day as I got further away from the drug that so affected me, I clawed my way out of that depression with a teaspoon. Slowly, slowly, slowly, I got better as the last Lupron shot ran its course. And as I got better we lowered the medications again until now I’m back where I started from.

Med changes are always hard. For a person with Bipolar Disorder the reactions can be unpredictable. Obviously, since three previous times on Lupron were a cakewalk and this time things all went kerflooey. It was really invaluable to have structure, support, professionals, and peers to rely on while the medications did their thing and we figured out what my brain needed to stop trying to end me. Turns out, it needed to not be on Lupron.

Before I go on, I don’t want to scare anyone. Lupron has been a miracle drug for me. If you need it I’d drive you to the doctor myself. It’s just that due to changes in my brain chemistry, I had an adverse reaction. It happens, it would happen for me again, but I’ll get to that. It probably won’t happen to you. This drug rescued me from disability on four separate occasions. It’s a good thing.

Four weeks into my treatment I started having shortness of breath. I thought it was anxiety, so I took more anti-anxiety medications. I developed a persistent cough, I thought it was seasonal allergies, so I took that stuff. I felt this ball in my throat like I was choking so I thought it was GERD and took antacids. Nope. That globus feeling – the feeling like something is stuck in your throat – became so intense I was gagging and dry-heaving. Turns out I was allergic to the new medicine too. A fraction of a percent of people develop swollen glands and shortness of breath, and guess who was lucky enough to be in that percentage. This gal! I’m a medical marvel! If there was an olympic sport in medical oddities, I would be Michael Phelps.

Luckily by the time the symptoms got so intense I couldn’t take the medicine anymore, I was doing really well on my own. I was far enough away from my last dose of Lupron that my moods were stable enough for me to stop the medicine causing the allergic reaction, and after a few more weeks taking things easy, regulating my sleep, and slowly resuming my activities, I’m feeling pretty much back to my typical self. I did it.

I’m so grateful for the people who support me, for having access to mental health care, for a family who could make sacrifices and pick up slack to help get me through, and I believe that the best way I can repay all of that is by first, taking care of myself, and second, being honest about my challenges to help remove the shame and stigma so many of us feel about our mental health struggles.

I’m an accomplished, successful person, and I also live with mental illness. The truth is that most of us do of one kind or another, and if we don’t then we are definitely touched by a loved one who lives with a mental health condition. It is a fact of our modern time. Our brains have not evolved to be able to deal with all the stimulus of our day. We have to stop being ashamed, stop hiding, and recognize that these are physical conditions.

I made it through, and if you are struggling, you can too. If you need help, there are people trained to help you. Please reach out.

1-800-273-8255
National Suicide Prevention Lifeline

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Sprout

Sprout

This was my Mother’s Day present from Atti, and it’s a pretty fitting metaphor for what I’m up to right now.

Remember when I talked about Therapeutic Boredom? And how being forced to slow down because of all the crazy hormones was forcing me to learn stuff? I had no idea.

I work really really hard at being emotionally healthy, I think that’s clear. And most days I feel like I’m pretty on top of things in that department. I know when to rest and when to push and what cues to listen to, and I make it a real priority. That’s how somebody can come from my kind of background and wind up as the person I am. A lot of really hard scary emotional work.

And other than what it takes to live with my mental illnesses, I feel like I’m pretty sorted. The stuff of my childhood doesn’t grieve me like it used to. Entire weeks will go by without me thinking about what used to cause me tremendous pain. I didn’t see a breakthrough coming because I didn’t think I needed a breakthrough.

But apparently I did. And forgive me for vague blogging again, but for once it’s too personal to blog about. I didn’t think I would have a limit, but what do you know? I do!

It’s actually all great news. Once upon a time I would have come up against something that brought the grief back and I would have taken to my bed for a week. This time, I actually feel better. I feel like a literal weight is off of me. I feel proud of myself for being strong and brave enough to face hard things, and proud that I can use the tools I’ve acquired to take care of myself. I’ve been meditating, and taking long baths, and seeking quiet and candlelight, and making myself as physically relaxed and comfortable as I can be so that I can do the hard interior work of facing the worst, darkest, most terrifying corners and scrubbing them clean.

This might sound twisted, but I’m actually enjoying it. My body is not healthy enough to let me use it to feel powerful. No marathons or unassisted births for me. But this? This feels powerful. I am healing myself with the power of my own mind. I am sorting through old scripts, beliefs that don’t serve me, things that other people believe about me that I don’t, casting them all away, and watching as it’s so effective I feel it physically.

I don’t know why it is I seem to need hard horrible times to learn lessons, but I do. At least I can be grateful I’m learning the lessons. Maybe then I’ll never need to go through this again.

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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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