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Thick skinned.

I wish I could just walk away without saying anything. I wish I could say that I didn’t even care to read the posts or the comments. I wish I could say it didn’t matter to me that people called me the worst things anyone could call a mother. I wish.

I was honest. I wrote a post that resonated with a lot of special needs parents, and then chose that post to do for Listen to Your Mother. I chose it over anything funny or uplifting as I truly believed, and still believe, that it was one of the most honest things I’ve ever written. It wasn’t easy to write, and it definitely wasn’t easy to give. I’m not a natural public speaker. When the videos came out, I watched it and cringed and cringed and cringed. I was embarrassed to post it. I only saw fault in the video.

What came next was the most amazing bunch of comments, shares and emails from people who had seen the video. I sat and cried as I read. I felt uplifted, little did I know how much I would need that in the days ahead. While most parents said that they have felt what I felt, there were a few that took me to task. Some where thoughtful in their disagreements, which is fine. I’m open to that kind of conversation. Some, without knowing me, without ever reading my blog, took me to task. Among other things, they said they felt sorry for my kids because they ended up with a mother like me.

I want to tell you that it didn’t hurt. I want to come across as being this picture of perfect strength. But that’s just not me. I’ve been waging a war against depression as it’s slowly crept into my bones.  I’ve been taken off one medicine and put on another, and it’s screwing me up something fierce. Other circumstances in my life have taken whatever thickness I had accumulated to my skin and rubbed me raw.  So when these posts came through (I get ‘pinged’ on my blog any time someone adds my web address to their own) I had only the cushion of the wonderful comments I had received to soften the blow of such harsh words.  I wish one golden comment outweighed one horrible one. I wish that I remembered all of the good and shrugged off the bad. I’m working on that. One day I’ll be able to, right?

I wanted to go to these blogs and posts and write harsh rebukes about how they didn’t know me. I wanted to show them my blog and tell them how wrong they were. But they wouldn’t have come to see. They want to believe I’m terrible. They want to be “horrified” with me. They want to attack, and have done so repeatedly for the past year or so since I got on their radar. It’s sad to me. These are members of the disability community. Instead of fighting for rights, for educational changes, or for things that actually matter, they just attack each other then bitch about how nothing ever changes.  They repeatedly question my advocacy, my mothering and the kind of human I am without knowing me or how hard I work to affect change.

And it hurts. It makes me want to quit fighting. I can’t fight for rights along side them if I’m fighting WITH them.

In the end, this blog isn’t for them. It’s not for my kids either. It’s for me. It’s for the other parents who feel the way I do and have told me that I have helped them to not feel as alone. Your comments here and on my page have kept me going when I wanted to throw in the hat. You’ve kept me writing, and I’m supremely grateful.

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Creating Toddler Adventures

Today’s post is by my friend Deanna from Everything and Nothing from Essex. She has a daughter, Addison, and a boy, Carter and another boy on the way. Addison has Down syndrome and is the most expressive child I think I’ve ever seen.  Every time I get on Instagram, I scroll scroll scroll to see the what Deanna’s posted for the day.  Her blog is one of my favorites as she writes clearly, is down to earth and so honest.  I’ve asked her to tell you about this cool thing she’s been doing on Instagram- and I want you guys to join the fun.

About a month ago, I was sitting in my disaster of a house, overrun by toddlers, nauseous from unborn baby #3 trying to kill me, and feeling immensely sorry for myself. On Instagram everyone was going on exotic vacations. On Facebook, the world was checking in on incredible adventures. On Pinterest, people were redecorating, gourmet cooking, pithy saying, marathon running. My big accomplishment for the day was changing two poopy diapers without losing my last meal.

I was feeling less than fabulous. The four walls of my house were shrinking in closer and closer until suffocation surely wasn’t far away. My children were making messes I couldn’t clean up, and I wasn’t providing any sort of activities for them that gave me the “awesome mom buzz” after they were asleep contentedly in their beds.

The summer ahead of me looked bleak.

I posted (of course) an awkward, feel-so-sorry-for-me blog post and then sat back to wait for a better life…or death…whichever came first, really.

It then occurred to me- what if I could somehow get us out of the house at least once a day? What if I could plan something that would give them a good afternoon and force me to ignore morning sickness even for just an hour?

That’s when #creatingtoddleradventures was created.

Even though I wasn’t feeling my best- I wanted to take the small amount of energy I did have and spend it where it mattered- on the laundry. Totally kidding. I meant on my kids. You know, the ones wearing the dirty clothes.

I committed to 30 days, doing SOMETHING new and adventurous once a day (according to the toddler definition.) Some days this meant going to the local aquarium, some days it meant something as simple taking our dinner out onto the front deck and making it a picnic.

The truly awesome thing is, toddlers think that pretty much everything is an adventure. So I threw grocery shopping and Lowes exploring into the mix as well.

I have been documenting our adventures on Instagram under #creatingtoddleradventures, and I have loved seeing others jump on board with their own toddler adventures. #creatingtoddleradventures really could be just about anything. The purpose behind it- creating purposeful, new experience for our kids- that’s what’s really driving that hashtag.

The truth is- as corny and silly as this might sound- it’s just what I needed to stop sitting around feeling sorry for myself and creating our OWN adventure no matter how small it might appear compared to those exotic vacations on Instagram. It’s filled me with a new sense of daily purpose, and it’s given me the push to introduce my kids to new things that have been on my list forever for “someday.”

Thing like:
Going for a walk along Lake Champlain,
 finding a new hiking spot,
 eating watermelon out on the deck,
 going to the pool,
exploring Lowes,
 finding new play places,
visiting the local aquarium,
and tramplining it up before dinner
(not to be confused with “tramping it up before dinner”)…

Being intentional about adventure- being intentional about spending time with my kids and throwing away all guilt about everything that is not getting done- this has saved our summer.

Because of some pregnancy stuff, I haven’t been able to do every single day of the 30 days, so we’re going to continue a bit longer. #creatingtoddleradventure is too much fun to stop now. Plus, there’s that whole motherhood sanity thing to consider…

Add your pictures to the fun on Instagram with the hashtag: #creatingtoddleradventures

To read more from Deanna (and you should be seeking out superior blogs to this one…), please visit: Everything and Nothing from Essex

To follow Deanna on Instgram, go here.

To follow ME on Instagram, go here.

As always, feel free to share!

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His lovely lymphy lump.

Peyton will do just about anything to stall his bedtime. That stalls mine and Lance’s together time (read: sit ‘together’ on the couch while we play on our phones ‘time’). So when he came in with something new, it really didn’t phase us any.  “My armpit hurts when I stretch like this,” he said as he STREEETCHED his arm way back. Without either of us looking up, I said, “Well then don’t stretch your arm like that, dummy.” (The ‘dummy’ part was implied, but not stated directly.) We then sent him off to bed with a threat of what would happen if he got out of bed again.

The next morning, as I was sitting with Abby at the breakfast table, Peyton came in and said, “My armpit hurts when I stretch like THISSSSS” and stretched his arm way back, but not as far back as the night before.  “Okay,” I grumbled as I pulled myself up, “it hurts HERE?” I said as I jabbed my finger into his armpit, hoping to tickle it. Peyton winced and then I did the same…

Big. Freaking. Lump.

Peyton's large lymphnode in his armpitThat’s right kids, my son had a lymph node that had swollen to nearly four inches in size.  I felt bad. A little. Not a lot though. Peyton comes up with some pretty crazy ailments. He once came in and said, “My head hurts when I bang it on the wall.” He’s also the kid that I have to promise that no gigantic men will come, stomp down our house and ‘enslave us forever’. He’s really got the most amazing imagination. It makes things so much more fun.

On our way out to the doctor, he asked me what was causing the lump. “I don’t want to scare you or nuthin’ but big armpit lumps are the first sign of zombism. Did you get bitten by a zombie? Are you sure? Sometimes you don’t feel it. Do you crave brains? Let me know if you have any SORT of crazy craving for human flesh.”  He acted like he was entertaining the notion, but then blew me off, “Zombies aren’t real, dummy.”

His reply only led to escalation. At the doctors office I saw my chance to make things worse when the doctor came in. Peyton hadn’t gotten back from the bathroom yet so I quickly whispered, “Tell him lumps are the first sign of zombism…I mean…you know…if it’s not something scary like cancer or herpes.” She totally did! She also asked him just randomly in her questions if he’d done ‘hard time in prison.’ That doctor GETS ME.

We got assured that it’s probably just an infection, a scary amount of antibiotics I’ll forget to give him and got on our way.  After we got home Peyton came running in to where I was sitting with his grandparents, who are here visiting for the week. “I know what it’s from!” he said. “I do A LOT of armpit farts on the way home from school. The bus driver HATES it.” And then he commenced doing a whole musical production of armpit farts with his one good armpit.  Not even THAT lesson was learned from this.

He got super sick that night, but is fine now. The lump is half the size now.  He’s still stalling before bedtime though. Tonight it was because he was afraid that a monarchy would take over.  A monarchy.

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Casey won’t pee in the ocean.

www.theoatmeal.com
http://www.theoatmeal.com

Maybe it’s an autism thing. Maybe he’s just super conscientious about fish. I don’t know. But whatever it is, Casey won’t freaking just pee in the ocean. Your pools are safe, too. In fact, he refuses to pee along side the road on roadtrips. Or in a bush while camping. Which is a TOTAL waste of equipment if you ask me.

If you follow me on Instagram, you know that I’m pretty obnoxious about the beach. We go there a lot. It’s the best place in the world. We go after the kids get home from school and stay until well after all of the facilities at the beach are closed. As we were getting ready to go Casey tells me he needs to pee. He HAS to pee. RIGHT NOW.  Casey with a full bladder is not someone to mess with. Hoping there was still a port-a-potty open,  Casey and I take off a half a mile down the beach. Nothing. No port-a-potties.  That’s when the crappy tired mom in me kicks in.

I beg. I plead. I pull the UTI card. “Casey, dammit, it’s time to learn to pee in the ocean.”

He was offended at such a notion.

I dragged him out into the ocean. The freezing water had the affect that I wanted it to. He HAD to pee. I pushed him out further because I’m a complete wuss and didn’t want to get in past my knees- plus, I already had put my top on over my suit. I instructed him to get waist deep and to just let it go, man. “I can’t pee in my pants!” I explain using full motions that the ocean will wash it out. (Imagine it: me standing knee deep in the ocean yelling at my son and waving my arms in an effort to describe that the water will go IN HIS PANTS then OUT OF HIS PANTS and CLEEEEANNNN it out).  “I will smell like urea!” he says and I repeat myself, motions included, as Casey grabs himself and cramps down in an effort to hold it in.

“Let it go, buddy. Just let it go.”   I yell. After several minutes of him willing his body to keep it in, he relents. Instead of just peeing his pants like any classy beach goer does, he pulls his pants down. “You’re not waist deep yet! You’re not waist deep yet!” I yell at him as I crash through the waves to cover him up.  Now, mind you, Casey is nine but is the height of a 12 year old. This isn’t a cute little toddler butt mooning the entire beach. He doesn’t care. In my effort to get to him, I tripped and soaked my only dry shirt. Freezing, wet and not close enough to him to do anything, I gave up. If having his pants down would help him get it done, I was gonna let it be… well… until a wave came. In an effort to brace himself against the crash of the wave, he turned around to have his back against it-

Flashed the entire beach.

It didn’t end there. At this point, he actually started to pee. And he was DELIGHTED. In one serene moment, Casey put both of his hands on his hips, closed his eyes and leeeeeeeaned back as he felt the relief of what looked like a full gallon of pee leaving his body.  Just stood there. For all to see.

When he was done, he pulled his pants back up, washed his hands in the waves, and walked out like the complete badass he is.

I followed behind. Shocked, wet, freezing and elated that Casey had done something he had never done before. He peed in the ocean.

He actually has flashed an entire beach before.

 

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Stay at home motherhood is balls, y’all.

I just posted this status on my Facebook page:

“I question the sanity of a woman who frequently talks about how great being a stay at home mom is.”

A lively conversation is still going on there. I’m pretty sure I’ve offended half of my demographic. Whatever. I mean, sorry.  I have never been quiet about this: I dislike being a stay at home mom. It’s just not my thing. I see mothers who make shnazzy lunches and REVEL in toddler games and whatnot and I think, “Is this a woman thing? Did I miss that gene? Why can’t I do any of that without feeling immense amounts of hatred?”  Actually, I almost took a picture of Abby’s lunch today because it included fruit.  Then I did, because she dipped  her banana in syrup from her waffles and I was completely astounded that I had never in my 31 years thought of dipping fruit into syrup. She gets it.

I get that I’m lucky to be able to stay at home with my kids. That we don’t need two incomes to survive. Sorry, those last two sentences were crap. We do without a lot because I HAVE to stay at home. My car is 10 years old and smells of feet (the last part isn’t a money thing, it’s a lazy thing). Lance drives a Hyundai that he barely fits in. Even with Abby starting school part time, I can’t work. In the eight days that she’s actually gone to school (she just spent four days home sick) I’ve been called three times to get her because they were worried about her breathing.  These are the same days that I have to run a library book over to Casey’s school because he’s freaking out about not being able to get a new Titanic book or pick him up because he’s too overstimulated to ride the bus  home.   I can’t work. I want to. I need something to occupy my brain and honestly? I’m sick to freaking death of living on the edge of financial ruin. We will have moved twice in the last two years (and will move across the country again in August) to take representative jobs to pay off Abby’s medical debts. We’re going home to find a place to rent near a school that will take all four of my kids. But even now, I don’t know if we can afford to live anywhere near a good school that will do it. HARG. I get that working would only ADD to my load, but it would be so nice to not have to worry as much about money all of the damn time.

I do understand that there are women who would love to stay at home but can’t. I still think you’re crazy though.  Okay not crazy. I guess it all has it’s ups and downs.  I suck at playing with toddlers. I hate that I’m expected to have food in the house. But it’s super great to have the time to do laundry. I don’t know how working moms do laundry. Or groceries. Or really, anything. I’m in awe of working moms. But I’m jealous of your being able to make friends at work. To talk to adults- to anyone. Abby is super cute, but the girl doesn’t say a damn word. I’m not going to lie, it’s awesome lonely being home by myself all day long.

I guess what I’m really upset about is that this whole thing about motherhood being the greatest thing in the world seems more and more like a bunch of dudes got together and figured out a great way to trick us into doing the laundry for the rest of our lives.  It’s for that reason that I spend most of my time trying to figure out new and interesting ways to toy with my husband.  I do other things to spice things up. Today Abby and I went outside and verbally abused some poor unsuspecting birds. Tomorrow we’re going to harass the teenagers at the beach. I’m always looking for a new fun way to make home life less boring.

So, stay at home moms, what have you done recently to spice things up at home? What do you do to break up the BEAUTIFUL MONOTONY that is being a stay at home mother? I swear though, if you say, “create works of art for my kids to not appreciate in their lunch boxes” I will throat punch you- with LOVE.

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Help me out.

I’m writing a book. I’ve got a bunch of stories done, and of course will use some of the stuff from this blog, but I’m having a tough time deciding on an overall “theme” for the book. I need your help.

If you were going to read a book by me, what would you want to read about? What interests you about me, my life or my views that you would WANT to read? I don’t just want to do a memoir, mostly because I’m too young for that. Right? I want it to be a brutally honest book about special needs, loss, family and blah blah blah, but I need an angle.  I also want it to be funny. In parts. So, like this blog, but in a book. But this blog is such a mess of different subjects, I’m having a tough time nailing it down into some sort of readable form.

Thoughts? Seriously. Help me. Please.

Don’t want to help me? Feel free to troll. Make me laugh. I don’t care.

Don’t want to help me or troll? Why are you even here? FINE. Here’s a picture of me as a narwhal. By Paul. You can find his ART at https://www.facebook.com/dailynarwhal.

Stolen from: https://www.facebook.com/dailynarwhal
Stolen from: https://www.facebook.com/dailynarwhal
autism · Uncategorized

Alex Spourdalakis didn’t die because of his autism.

Alex Spourdalakis did not die because of his autism. He wasn’t “mercy killed” to relieve his suffering. He didn’t die because there aren’t enough services for people with autism. He didn’t die because people didn’t donate to Andrew Wakefield to “cure” him. He died because his mother and godmother chose to fill him full of sleeping pills. When that didn’t work, they stabbed him repeatedly and slit his wrists while he laid defenseless in his bed.

Alex’s mother didn’t murder her son because she couldn’t get him help. She didn’t murder her son to put him out of his misery.  She’s not a martyr.  She’s mentally ill, any parent who can murder their child has got to be. Her mental break wasn’t Alex’s fault.

It sickens me to see the media playing this story in a way that almost makes what those two women did excusable on any level. That blames everyone else besides the people who actually had the knife in their hands. They chose this. THEY CHOSE THIS. They chose to not seek further help. They chose to believe that his autism was a curse. They chose to not keep fighting. They chose to murder that boy.

I get that there aren’t enough services for people with disabilities. I understand this better than I can detail in a short blog post. But that doesn’t for a second lessen what these people did here.  I get being at the end of your rope. I’ve been there. But there are OTHER options. ANY OTHER OPTION would have sufficed.

My rage in this story only grew when I saw that the video the media is putting out with Alex strapped to a hospital bed has Andrew Wakefield asking for donations. This to me SCREAMS that the mother was being fed the lie that she could cure her son if only she could pay Wakefield enough. Wakefield is a horrible excuse for a human being. He’s not a doctor, that got stripped from him. He’s not a scientist, nor has he ever been. He’s been selling myths, lies and downright dangerous practices because it’s made him RICH. He treats autism as a disease rather than a neurology. He’s perpetuated the myth that autism is caused by vaccines and what’s more, can be cured by such horrific “treatments” as bleach enemas and chelation.  In his effort to be the Prophet of The Cure, he’s made autism something that needs to be cured instead of something that should be accepted. He’s made it so having autism or a child with autism is something to be feared, be sad about, and a situation where it’s okay to kill the child to alleviate suffering.  If you’re a Wakefield supporter, I’m asking you kindly to do your research about him, his methods, both past and present.  If you want to argue about him, this is not the place. There is no defense for him and what his supporters do to their children. None. In a video you can find here, Wakefield says,

“When I first became involved in this fifteen years ago I got a call from a parent in Northern England who said, ‘Dr. Wakefield please do not judge me harshly, but when I die, I’m taking my child with me, because I’m the only one who loves him.’ I did not judge that mother at all, in fact I was moved by the love the mother had, must have, for her child to take her his life rather than rather than have him fall upon a society that really didn’t give a damn.”

I don’t know if there’s a crime worse in this world than a parent killing their child, especially a child with a disability. We need to stop making excuses for people who murder their children. Murder is murder. If the child has a disability, it should be MORE shameful, more heinous because that child is more vulnerable.  We do need better services for families, but this should never be used as an excuse to pardon someone who had other options.

Alex didn’t die because he was autistic. He died because the people who should have cared for him the most gave up. They do not deserve our sympathy.

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18 years ago.

The Phoenix sun shined brightly through the window. I wasn’t sure why I woke up, it was far too early for a girl, newly into her teens, to be awake on a Saturday. I turned over to see the big brown eyes of my little brother looking at me. He was quiet and still. We didn’t say anything, almost as if we were afraid to break the quiet peacefulness of the house. I sat up and looked across the upstairs into my parents bedroom. From where I was, I could only see the foot of my parents bed. At the foot of the bed were my mother and my oldest sister. Kneeling. Praying.

The foot of the bed of my father.

My dad. The man I loved the most in the world had just died. I didn’t cry. I exhaled. For weeks it felt as though I had been holding my breath.  Waiting to finally breathe. Everyone and everything seemed to be holding their breaths, too. That feeling of relief, of letting all the air up that you’d been holding in for way too long permeated through the house. It was like even our home, down to the studs, deflated a little bit.

That day wasn’t as hard to live through as it is to look back on. 18 years later, the day isn’t what it was then.  It isn’t a day of relief, of gratefulness that my father is no longer suffering from a cancer that took him too soon. It’s a reminder of the hole in my life that could never be filled. A life that was irreplaceable.  It’s a reminder of the very fragility of life, the impermanence of this existence.  I went from being hopeful to a little jaded, a little sad, a little more withdrawn.

I struggled mightily with losing my dad. The first year I only spoke about it a handful of times. I followed my mother’s lead and stayed busy enough to be a step ahead of the grief.  We lived in the same home that I had woke to that bright June morning. The memories still there, as if floating in the pool, hanging in the closets, and tucked away in the hand prints in the cement in the driveway.  We moved a year after his passing to a new home a state away. Walls he’d never touched, tiles he did not lay.  He wasn’t there in the big house on Mountain Road.

It took years for me to unfold myself from the crumpled up girl I became in my teenage years. I was a mixture of hormones, anger and sadness. I looked for him in the physical, and stopped finding him in the spiritual.  I had to learn to find my dad in the joys of life instead of the home in which he lived. I’m still learning.

I find him when I’m on the beach. He loved the ocean like I do.

I find him in the compassion of my oldest son, the mind of my middle, and the creativity of my youngest. I find him when I hold Abby.

I find him when I write. He was a writer, too.  Here in Rhode Island, in this big, noisy house, I find my dad as I plunk away at the keys on this laptop. I’m a lot less sad than I was when I began this. And he’d want that. He’d want me to write.

He wouldn’t want this day to be a day where I’m only reminded of what I lost, but to be a way to remember to continue to look for him in everything good that my life has become. He’s there in the details, the quiet giggles, the whispers in tide, the tinkering of the keys.

 

Down syndrome · Uncategorized

How to Survive A Sleep Study.

How to survive a sleep study with your toddler

We just survived our second sleep study. When we got back into the room, I kicked myself for not remember all of the things I SWORE I would remember at the last sleep study. So, in an effort to save myself some aggravation for sleep study number 3,  and to share my wealth of knowledge for all of you,  I’ve written a useful guide for making it through.

1. Wear proper attire.

Your child will have electrodes placed on their legs, abdomen and head. Make sure they’re wearing something that makes these electrodes easily accessible. For girls, a nightgown is probably your best bed. Boys, shorts and a t-shirt. Footed sleepers are a mistake. One that I’ve now made twice.

Parents should wear something they can sleep in comfortably that won’t creep the tech out. Bring a couple of pairs of socks. Believe me. I’ve spent much time in a hospital. Having a few extras around are a necessity. Also wear a sweater. You never know if your crappy chair/bed is going to be situated right under the ac that no one can seem to figure out how to turn down.

2.   Be healthySurvive Sleep Study

If you think your child is the least bit sick, cancel the sleep study. Cancel it fast. There’s nothing worse than having a sick kid that wont sleep AT a sleep study.  Abby got a fever at her first one and would sweat the electrodes off.

3. Bring your own bedding

This is pretty much a good idea for any hospital stay. Hospital bedding is the worst. THE WORST. It’s like they specifically design it to tangle. The sheets aren’t so much as sheets as large skin exfoliators. I brought my own blanket for me and by 11pm, I had to give it to Abby because she refused to keep the hospital covers on herself. The pillows aren’t pillows, either. They’re sadness in a pillowcase.  And I know you’re thinking, “I’ll look like a huge idiot carrying all of my bedding through a hospital.” You’re right. You totally will. But you’ll thank me.

4. Bring your child’s favorite ANYTHING

This time I brought the Ipad, bubbles, her bear, her doll, crayons, paper, etc. Along with that her sippy had milk in it (we usually give her water before bed) and I had brought a bunch of her favorite treats with me. Turns out all I needed was “Finding Nemo” on the hospital TV.  But you never know. Sleep Study with Electrodes On

5.  Have the tech wait until your child is GOOD AND ASLEEP before they start putting the electrodes on.

We’ve done it both ways. Waiting until Abby had been asleep for 20 minutes and then putting them on was the best idea. She slept through almost all of it.

6.  Try to sleep yourself. Or don’t. I don’t really care.

I brought all sorts of books and games and stuff to do on my “night off” at the hospital. I ended up playing on my phone. Then I went to sleep. You won’t sleep well and you won’t sleep for long, even if your kid is on their best behavior. Make sure you schedule your night away when you’ll be able to sleep the next day.

For those of you who have done sleep studies with your kids before, do you have any helpful tips to add?

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For when the world stops turning

I found out that Abby’s twin had died when I was 15 weeks along- in a mall. A mall. My mother, sisters and I had gone to an ultrasound place that only determines gender and would tell me a full month sooner what the sexes of the babies I was carrying were. The poor Ukrainian obstetrician didn’t have to deliver the news, it was plain to see. I wandered out of the mall, holding in the tears until I could collapse in the backseat of my mother’s car to scream and cry.

After a while I calmed down some and with my chest still hiccuping from overexertion, I watched as my sisters came out to the car, laughing as they carried their purchases.  I could not imagine how such happiness could exist in the same proximity of the pain I was feeling. How could they be happy? How could their world still be turning the right way on its axis? Soul fully rung out, I put on a brave face for when they joined me in the car.

….

Last night my world kept turning even through the news in the background showed people whose pain I cannot imagine. In an effort to keep my mind off of the tragedies that continue to unfold, I did silly things on Facebook and preoccupied myself with the mundane.  I became the person on the outside. The person whose world should not be turning, who should not be laughing and talking about anything else than the horrors of the tornado in Oklahoma.

……

My sisters jumped in the car and carefully asked how I was doing and each hugged me. Then they handed me the bags they were carrying, each containing the cutest little girl gifts you’ve ever seen. Our surviving twin. Our only girl.  In the space of time that I needed to be by myself, my sisters were handling things the way we all do- by doing what we can to lift up the people in their pain. They knew they couldn’t take the pain I was feeling from me, but they could empathize and try to cheer.
The same goes for us today, though the pain is on a level I think few can understand. I know I surly don’t. I spent the morning curled up watching the latest reports, before it became too much. Adding my grief to theirs doesn’t necessarily help them, especially if I didn’t do anything besides cry.  It wasn’t until I remembered that feeling- of seeing a world that continued to spin when I felt in my heart that it should just stop-that I realized that the world will still go on. We’ll remember this tragedy by the city name, the date, or maybe even just ‘the tornado.’ But I could do something now. I could provide some bit of help and support and even cheer in this time of pain.

Please help
Please tweet, pin and share.

I donated to the Red Cross. If you think they don’t provide cheer along with the necessities, you’re wrong. I had the opportunity to serve alongside the Red Cross after Sandy hit. They are an amazing organization that provides food, shelter, clothes, cleaning implements with their disaster relief, along with provide warm smiles and a shoulder to cry on. I watched as a Red Cross worker hugged an elderly resident who had lost everything she owned in a storm surge. She hugged this lady for a long time, then took her to get a warm dinner. I watched as she sat and talked to the lady, holding her hand some, as they ate.

It’s an amazing organization. We can’t all be everywhere when disaster hits. Our worlds to move on. But we can help those that are there to do more. To be more places. Please consider donating to the Red Cross. It’s super easy. All you have to do is text REDCROSS to 90999. This will add $10 to your phone bill, and extra relief for people who are going through more than we can understand.

Thank you in advance.

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Last Summer.

Last summer was life changing for my family. We had the most amazing girl come live with us. Her name is Heidi and she had been our babysitter from the time she was 15. She had gone to college, and, when we had heard that Abby would be receiving respite and companion care through Virginia State, I had asked her if she wanted to come live with us for the summer.  She agreed. Then I worried.

You see, I’m a creature who needs her own space. I have never been a “girls girl” and have a very low threshold for drama. When we had other people come in before Heidi came, I found myself counting down the minutes until they would leave.  I also was afraid that Heidi would spend a couple of days with us and realize she’d gotten herself into a very LOUD mess, and run screaming for the door.  The only way it would work is if Heidi was perfect.

heidi the magnificentAnd she was. The summer was so great. Heidi marked a HUGE change in things with Casey. She got him to try food outside the rigid handful of dishes he’d eat. He’s been eating the same meals with us ever since. That was HUGE. She expected more of him, of Abby and really, pushed me to be more. She knows sign language and taught Abby the signs she still uses today. She cooked, she cleaned, she played with the boys, and she loved my kids as if they were her very own. The thing I can’t get over was how much she made me laugh and how easy it was to be with her. She came out to be my nanny, and whether she liked it or not, she became one of my very best friends.

She watched all four of my kids for four days while Lance and I went on a cruise. We didn’t have phone service, but it didn’t matter. I didn’t worry about the kids for a minute. In fact, there’s a really good chance that they were in better hands than my own.  The day after we got back was the day Heidi left to go back for her last year at Utah State.

My heart catches in my chest  even as I write this.

Every time I think about how much I adore Heidi, my mind wonders back to that moment.  It was time for Heidi to go to the airport.  I did not want her to go. My whole body felt heavy with sadness. I came downstairs to find Heidi crouched down in the hall holding Abby and sobbing. Abby held her so tight, and didn’t for a minute try to wiggle away. She loved Heidi as much as we all did.  Abby had even learned to say EEEEYEEE DEEEE! EEEEYEEEE DEEE!  Neither one of them wanted to say goodbye. None of us did. The sadness I felt in that moment was more than just a goodbye. It was a feeling that something this amazing would never be the same again. We had caught lightening in a bottle (and for reals, we had actually caught lightening bugs in a bottle with Heidi) and it would never be the same again.  I couldn’t compose myself enough to drive Heidi to the airport, and we didn’t have time for all of us to go because we were supposed to be out of the house that same day. Lance drove her as I sat in a crumpled ball on my kitchen floor, ugly crying in a way that I have only done a handful of times in my life.

We moved to Rhode Island and Heidi moved back to Utah. At Thanksgiving, we all spoke of the things we were most grateful for over the year. I watched Casey as he ate his first Thanksgiving meal with us. Tried turkey for the first time. I watched as Abby signed “more” and then asked to watch a show with her hands.  Heidi had left her mark on so many areas of our lives. We all mentioned how grateful we were for the short time she lived with us.  How much she’d changed our family. How much we all missed her.

Heidi had become a member of our family. We still spoke often on the phone, through texts, tweets and facebook posts.  I loved thinking about the joy she brought, but that would inevitably lead me to seeing her, cradling my daughter in her arms as she cried in a dark hall in my basement.  That image pained me too much.

But, after 5 tomorrow, that pain will be a distant memory. Why? Heidi’s coming back!

By her own free will, even! There aren’t the same programs for the kids out here (well, there are SOME, but the waiting list is very, very long) so we didn’t think we’d be able to make it worth her while to come out here. With Lance’s impeding furlough, we couldn’t pay her anywhere near what she’s worth.  So when she called, asking if she could just move in with us because she loves us, I cried. I’m crying right now.  It’s too much goodness. It’s like my birthday and Christmas and every wish I’ve made in the last year all rolled into one.

That being said, if any of you know of Public Relations work done, have I got the girl for you! She’s got her degree in it, is well versed in all things social media, and is the hardest worker you’ll ever find. She’s also crazy smart, articulate and easy to work with. As much as I hate the thought of having her live her and not be able to just hang out with me all of the time, she does need to start getting experience in her field. Also, I hear that getting paid is pretty nice as well. The kids like it.  PLEASE, if you know of anything (ESPECIALLY VIRTUAL…please, keep her with me…oh my, I’m getting creepy…) please email me. I’ll love you forever for it. And that’s a big deal, because I don’t like people.

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I want to pay to advertise for you!

I SnugVest PR responsegot an email from the public relations guy SnugVest, a company that makes “weighted” vests for kids with autism. He wanted me to advertise for him and in return, he’d give me a cool 10% off their vests! Which doesn’t seem like much, really, but when I realized that it would save me $40 because the vests are $400.

I could not NOT respond. I mean, that’s almost enough to cover the tax on the vest! I had a lot of questions about this amazing opportunity, so I wrote him back

 

Hi there!

I’m very interested in your weighted vests, and this amazing opportunity to work with you.I have a bunch of questions.  I see from your site that they are $400. Is that an introductory price? Are timeshare fees separate?  Is the 10% discount you’re offering me good for only one vest?

I have some other questions with the product itself that I could not find on your website:

Is it weighted with gold or other precious metals?

Is it machine washable?

Can I plug my Ipod into it?

Does it have enough pockets for the entire Thomas the Train collection?

Does it come with it’s own papers or do I have to register it myself?

Is it fully housebroken?

How many cup holders does it have?

Is it heavy enough to keep a 200 pound “object” at the bottom of the ocean?

Is it made in America? I actually prefer the skilled hands of children.

Will they match my autistic child’s Louis Vuittons?

Are they pesticide free?

Would you consider them free range vests?

Can it be equipped with a gun holster?

Do you make these for cats? My cats love deep pressure.

Can you make it special so it snaps in the crotch like a onsie? I really hate it when my weighted apparel comes untucked.

Are they flame “r-word”-ant?

Will it stop bullets and help me fight crime?

Is it lined with unobtanium? Were any Na’vi hurt in order to get the unobtanium?

Will it eventually cure autism?

Does it come with a reverse osmosis filter for my urine?

Are they certified kosher?

Have any rappers endorsed them? You should get a rapper to endorse them. I buy stuff that rappers buy.

Are you a Republican? What do you think of the Tea Party?

If I inflated it with helium, could it be used as transportation? If so, would I need to register it with the Department of Transportation? If so, would you be willing to go with me to the DMV? Last time I went, I may or may not have sat in the corner and sobbed quietly for a couple of hours.

Have you ever worried that Garrison Keillor was your father? Do you have any idea what that’s like for me?

The vests seem a lot like the Pump Up Reebok’s of my youth. Do you think if I were able to find a pair of those my feet would feel less autistic?

Are the vests waterproof? Could I substitute the vest (fully inflated of course) for a life jacket on my child the next time we’re cruising on our yacht in the Hamptons?

Are they diamond studded?

I’m very excited about this amazing opportunity to spend $360 (well, $400, when you add tax, and then more after shipping) to advertise for you. Seems like a great use of my time and limited talents.

Sincerely,

Broomhilda

PR Director and Executive Chef,

http://www.mostlytruestuff.com

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Sponsored: Transformers PRIME Beast Hunters!

Transformers Prime Beast Hunters

I gTransformers Prime Beast Hunters Deluxrew up with three brothers. I now have three sons. I know ALL about Transformers. My brothers loved them almost as much as my kids do, which is why I was so excited for my boys to try out the new Transformers Prime Beast Hunters Delux, made by Hasbro.  We got our Transformer in the mail and, after a brief but awesome wrestling match, Casey came out the victor, and the badass toy was now his.

Fortunately for the other boys, the Transformers Website has some pretty awesome stuff for them to do while they waited for their turn.

…Their turn to cry. Transformers are uniquely frustrating in that once you get them to “transform” one can never get them back to whatever else they were supposed to be. My son cried. I growled…HARD…my husband eventually threw it against a brick wall in frustration. And you know what happened? Nothing. Those are some strong mothereffers. It didn’t break! So we tried it again. Nope. No breaking. So, while we couldn’t get the piece of shit back into the form of whatever it was supposed to be in the first place, we now have a “frustration toy” that we can throw against brick walls without having to worry about having to pick up the pieces. And that, my friends, is worth the $14.99 to $19.99 you would actually have to pay for these if you weren’t just sent them like me.

Want to know more? You can buy these awesome toys at the retail website here. You can check out the @HasbroNews Twitter account, or the Transformers Facebook page.

Disclaimer: I am a part of the Mom It Forward blogger network. Mom It Forward and Hasbro partnered in support of this campaign. Hasbro will still hopefully be compensating me for this campaign. We’ll see. Due to FTC regulations, while this post is sponsored, the opinions are in fact mine.

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A state away.

There was a weariness that permeated into the very depths of my bones as I drove. As if my very marrow ached. Everything ached. I had spent the day cuddled up in bed with my daughter in intensive care. As we flipped through the channels trying to find something to occupy her mind as because was tethered to her hospital bed by a series of chords, oxygen tubes, and an IV. The images confused me. A shooting. Children. Connecticut.

The news had gotten worse and worse as the day went on. I held my daughter and listened to the whirl of the oxygen as it forced it’s way into her lungs. Each breath was labored, but it was there. She was alive. She was breathing.  When she had finally fallen asleep, I moved away from her so as to not wake her as my body began to shake with sobs.

Back in the car, my son piped up from the backseat of the car. “Mom, what happened today?” He had seen a blurb on TV when Lance was getting them packed up to switch me places at the hospital. Now all three boys ears perked up. I didn’t know how to tell them. I didn’t want them to know they lived in such a world. I did not want them to be afraid. I also wanted them to hear it from me.

“Something happened. A very bad man hurt a lot of people” “Where?” “In Connecticut.” “Like, by US Connecticut?!”  “Yes. Just a state away.” We all cried together.  Then, amidst the sorrow, this quote came up over and over on Facebook:

Mr. Rogers, look for the helpers

I read the quote to my kids and told them about all of the “helpers.” The principal who ran out to protect her students, the aide to the little boy who had autism, who shielded him with her body. The police officers. The city of Newtown. I showed them the candlelight vigils across the country and we joined the millions of others who prayed for that little town.  I showed them pictures of the Hells Angel’s who made a human wall so that the vile group of well-known protestors could not get through to picket at the funerals. There were helpers.

Yesterday my children came in from playing outside on the first day of their spring break. I had been pacing in front of the TV with my phone in my hand. I had heard back from my Boston friends,  and I was waiting to hear news of the rest of the people from my church who had gone up.  I tried to shoo them out again, but didn’t get them out in time. They saw the image of the explosions..  “Mom! What happened?”  I found the same words I had just said in December.  “Something happened today. A very bad man hurt a lot of people.” “Where?” “Boston.” “Like, by US Boston?!” “Yes. Just a state away.”

Again, the quote above started to filter through my feed. I read it again to my children. I told them about how people ran toward the explosions rather than away from them.  How police officers, paramedics, and other people ran to help save the lives of others, even when they didn’t know if it was the end of the explosions.  How people who had been in the race had ended up running to the hospitals to give blood.  I told them about how I had tried to add our home to a list of places for people to stay who were displaced by the bombings, and when I did, the list already had hundreds of people willing to do the same.  There were helpers.

Our little Rhode Island is sandwiched between Connecticut and Massachusetts. There is something about having these events happen right in my back yard. It’s not a world away like it felt with 9-11 (we were living in Utah at the time). Not that proximity lessens or increases the amount of sorrow or horror anyone feels because of these events, it’s just a little surreal that they’ve happened so close.  Sandy Hook Elementary School is just like my kids’ school. Same size. Same kind of community.   Boston is one of my most favorite places. Boston is one of those cities that when you mention it to people they have an intense, visceral emotion. Everyone who has ever been there LOVES Boston.  It’s a city that seems to hug you as you walk in. It’s filled with terrible drivers and wonderful people.

I wish I could say that talking about all of the wonderful people, all of the helpers, helped to lesson the pain we feel for the families who are hurting now. I wish that it made what happened the least bit okay. It does not. I wish there were never a need for people to have to prove how good they are through extraordinary acts in unfathomable situations.  I wish the world didn’t feel like it has slipped of its axis again. But it does give hope to silence the fear my children are feeling. The fear I’m feeling.  I’m grateful for the helpers who give my children hope that this world is still good. That people are still kind. I’m grateful for the acts of heroism we’ve been watching over and over again. First in Connecticut, now in Boston.  Both, just a state away.

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I love Autism Awareness Month!

Oh my gosh you guys, happy Autism Awareness Month! Have you been counting down? I made a paper chain on May 1 of last year. I get giddy. I buy all of the Autism Speaks paraphernalia and bright blue clothing and then LIGHT IT ON FIRE! I take Casey everywhere I go and say, “THIS IS AUTISM! BE AWARE!”  But then people think I’m saying “beware” and the message is lost in my poor pronunciation.

Anyways, Autism Awareness Month is just the best. It’s the magical time of year where the whole entire autism community comes together with one clear message of hope and acceptance. The squabbles of vaccines vs you’re-poisoning-your-child-to-death,  ABA vs ABA is abuse, Parents vs Autistics, etc  ALL go away. Because during this month, all we care about is people being aware of autism. Because they’re not. No one has even heard of it.

Except, it’s none of those things.It’s a month that usually just ends up frustrating all involved. The divides grow, the anger mounts, the attacks are made on all sides. Some of the autistic adults will be mad that we’re still calling it “Autism Awareness” month instead of “Autism Acceptance Month” but miss the irony when they refuse to accept the parents of autistic children as a valid voice in the community. The parents, like me, will miss the message of the adults because we have a hard time getting past what we feel is their anger towards us. The anti-vaccine groups will lobby hard for more money to be thrown down the Research Pit and get mad when we beg that those dollars be better used to help pay for programs to help people with autism.  See? I just did it right there! I can’t even get through an effing post without preaching MY views on how this month should go.

I suck.

But so does everyone else. So happy Autism Awareness and Acceptance Month!

I think I might give up even before it starts.

Want to read REAL posts about Autism Awareness Month? Visit:

http://yeahgoodtimes.blogspot.com/2013/04/why-blue-is-not-for-me.html

https://theconnorchronicles.wordpress.com/2013/04/01/autism-awareness-so-what/

http://www.disabilityandrepresentation.com/2013/04/01/autism-awareness-month/

http://four-sea-stars.blogspot.com/2013/04/why-yes-i-am-autism-aware.html

 

 

Autism Awareness Month is AWESOME!
Because whatever I put will offend someone anyways