autism

Understanding.

Imagine your child has a pet. A pet they’ve had for years and are deeply attached to. Now imagine your child losing that pet. What would happen? Wailing? Gnashing of teeth? Would the loss of such a pet mean that the child couldn’t, understandably, even make it through a school day because of their insurmountable sadness?  

Now imagine that happening every day. Sometimes twice a day. This is what happens with Casey’s Angry Birds plush toys. He’s obsessed. He usually has one that is the focus of his entire being, but if he’s home, he’s you can find him surrounded by at least three or four of them. The minute one goes missing-and it happens all of the time-Casey’s black and white thinking won’t allow for calm. The bird is gone forever.  He can’t think clearly to retrace his steps to find where he carried it off to. In his rage, he usually blames Abby. Abby’s not always innocent. She enjoys trucking those birds around, too.  Lance and I spend a great deal of time searching for Angry Birds.

That’s what the last two days have been. Casey lost his Bomb Bird, pictured here in better times (he’s the black one):

angry  frustrating damn birds

He also lost the “Boomerang” bird, but that wasn’t the focus of his sorrow this time. The loss of the bird mirrored the sorry of losing a beloved family pet.  He wailed. Deep, heartbreaking sobs. We assured him that we’d find it, but it wasn’t enough to settle him down. I heard him up talking several times during the night, and he was up for the day at 4:45.

The morning went fine, but by noon, I got a call from the school saying that Casey was too sick to stay. We’ve had colds running through the house, so I imagined one was coming on when I went to get him. He seemed so out of it. As I was talking to his para, he slumped down on the floor and leaned his head against the window. I watched as he stared off into the distance. He was still. Casey’s never still.

The day moved on with me doing my best to distract him from the missing birds as I searched.  It was good in that it gave me a much needed reason to clean out closets, and under all of the couches and beds in our house. But still, no bird. Carter was home sick, too, so I couldn’t just take him to get a new one. I couldn’t have done that anyway, really, because when I mentioned buying him a new one, his fit escalated. “I want muhmuhmuh myyyyy Bomb Bird!” he sobbed.

I cleaned out everything. Lance went so far as to searching the neighborhood, even knocking on doors. We were just a shade of crazy away from putting up missing signs.  The wailing escalated to screaming and aggression.  With the sound of his cries echoing in my ears, I picked up my keys and went out buy a new angry bird to “find” in the yard.  My breath caught over the lump in my throat as I went to tell my husband I was leaving. There in our bedroom, with only a little light seeping in from the closet,  was Lance, holding my very-tall-for-his-age son against his chest, rocking him in an effort to help him find some peace. “Shhhhh….” he whispered as the sobs still reverberated through Casey’s body.

Five stores. I went to five stores. By the fifth, I was seriously fighting back tears. My ears were ringing and my body ached from the massive overhaul I had done on the house. I couldn’t imagine having Casey wake up in the morning without his bird. I don’t know if he could handle it. I wasn’t sure I could either. It wasn’t until then that I realized that Casey hadn’t come home because he was cold-sick. He was heartsick. The plush toy means as much to him as any attachment people have.  I stopped thinking about how we didn’t have an extra ten dollars to spend on it or that maybe I shouldn’t get him one to teach him to be better with his toys (it wouldn’t work, Autism always wins the Losing Stuff battles). I felt for a second his pain.  Rejected from all the regular stores that I hoped would carry it, I figured that maybe getting him his Halloween costume- again, a Bomb Bird- would be enough to cheer him up for a day so I could call around to find him a new one. They didn’t have the costume.  My insides sunk, tears betrayed me. I wiped them off with the back of my hand and kind of laughed at the craziness of it all.  I tried to reason with the Autism, “It’s just a silly bird!” my brain screamed.  But Autism and I both knew that wasn’t true. The bird was Casey’s friend. He doesn’t have many of those. As I trudged slowly out the door, something on a cash register caught my eye.

A lone Bomb Bird.

I picked it up and embraced it like any tearful crazy woman at 8:45 in a party supply would do. I and moved down two registers to a waiting employee. “Did you find everything okay?” She said with a smile. My voice caught as I said, “Yes, I did.” And then I just said to hell with it and let the tears flow freely. “You don’t understand,” I said trying to lessen the employee’s shock at my affection for a plush toy, “My son is autistic. We haven’t been able to find his bird…I’ve been everywhere…”

“I understand,” She said back. My eyes met hers, and she had tears in them as well. “My son has autism, too.”

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Pay Attention.

I spent most of last Thursday driving to and from the Autism Center in Seattle. The roads are narrow, and getting around is difficult. You rely very much on other people’s kindness to make it to your destination. I watched as person after person drove past me as I was trying to turn onto the main street. My frustration grew as each car went by. “JEEZ! How selfish can you be? It would take you all of five seconds to slow down enough to let me in!” I yelled at the cars as they rushed past. Then I realized what was happening. They didn’t see me. In their hurry to get to their destination, they didn’t see the frazzled woman in the beat-up SUV desperate to take her son to an appointment neither wanted to go to.  The other drivers weren’t paying attention.  When someone did catch my eye, they hit the breaks and motioned me in.

I’ve spent too much time this last week talking about politics and being angry at people who I think just don’t get it. I spoke of how selfish people are.  Driving around the crowded Seattle streets made me rethink that. Maybe they’re just not paying attention.  Maybe I’m not, either.

I wrote last week about my desperation in the situation with the government shutdown. I was scared and sad and, honestly, not in a very good place.  You were paying attention. You sent me emails with support and resources for finding work. You bought ad space and are working to help me find writing jobs within your own communities. Your kindness to me allowed me to move forward on my way to whatever destination will come. Thank you for paying attention.

After I had posted that blog, I was listening to the radio and heard a story of a woman who was worried about her food stamps running out. She and her husband had been laid off from their good jobs- they both had graduate degrees- but do to the economic climate, have not been able to find work in the last couple of months. They have three kids. She was worried about FEEDING her children.  In my own desperation, in my own need to get where I was going, I wasn’t paying attention. Up to that point, I had only thought about how the government shutdown affected me and my family.  I didn’t realize that it could be much worse for a great many people.  I searched for more information. The Women, Infants and Children program (WIC) – a government provided nutrition program- initially thought that their doors would close immediately, have only enough emergency funding now to keep their doors open for a couple more weeks. I am not ashamed to say that I once participated in that program while Lance and I were in college. I had to quit working during my pregnancy after I was put on bedrest, and after Carter was born too early with respiratory problems that took months to get over. We relied on WIC to feed our child.  I’m so grateful for that program and when I saw that it was being shut down, I dug deeper to see what was being done.

People are paying attention.

I found women rallying with other women to provide formula, food, and other necessary items to help people who could be hurt. A list of where to get help  can be found here: http://www.feministhulk.net/wic-and-shutdown-where-to-get-baby-food-and-formula.html. If you can help add to the list, or have resources that you want to use to help, please contact the blog owner or the people listed under your state.

There are a lot more people out there in need of help, some affected by the shutdown, others by their current circumstances. I resolved when I saw what those people were doing for people on WIC to do more. To pay attention.

It’s easy to find people you can serve if you’re looking for it. It didn’t take me long. I know a woman who has taken her five beautiful children and left an abusive marriage. Her husband refuses to support her and the kids, and she doesn’t have the money to pay for a divorce lawyer that can go toe-to-toe with her husband’s legal team. She’s been able to get into housing, but the state only offers classes on how to file for divorce yourself. She was able to find a lawyer who will help her divorce her husband and force him to support their children,  and who will do it for only $900. A wonderful man that I know has been working tirelessly to raise that money. They’re close. If you’re interested in contributing, the paypal address to contribute is ryan@ryanswallow.com.

I know that food pantries are going to be low and in extra need of support- especially if the government does open back up soon.The food program for schools only has enough money to run through the end of the month. Even if the government shutdown ends tomorrow, it looks like there will be drastic cuts to food stamps benefits.  This is a great way to help people who truly need it, too.

Whether it’s as simple as letting someone in while you’re driving, being extra kind to the frazzled mother at Target, or giving of your time or money to help someone on their way, a little bit of kindness goes a long way. I have been fortunate to time and time again be on the receiving end of people who are paying attention. People who care. You continue to teach me how to be better.

If you know of any other organizations or groups that are helping people during this shutdown and beyond, please post them in the comments. I even want to hear about companies who are going above and beyond because those are the companies I want to give my money to.

And because weird crap comes up when I post this to facebook if I don’t have a picture (and I’m entirely too lazy to figure out how to fix it) here’s a picture of Abby after I fished her from the toilet (again) the other day. She is as fast as she is disgusting.

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Compassion

My bishop in our new Rhode Island ward (congregation in Mormon-speak) accosted me in the foyer and asked if I had a minute to talk to him.  I nervously answered ‘yes’ and we walked back to his office. He sat on the edge of his desk and spoke kindly to me. “We have a calling for you…” I cut him off  “before you do…there’s something you should know.”

I waited for my anxiety level to rise, but it did not. I simply squared my shoulders and said, “I no longer believe.”  He leaned back, and crossed his arms over his chest. His eyes seemed to tear up a little as he gently asked me why.  I told him a little of my story. He asked questions and just listened. He didn’t judge. He just wanted to understand.  I told him that I wanted to attend because my husband still believes, but that I would not pretend to be something I am not.

I braced myself for what he’d say next. I had heard horror stories of bishop’s condemnation from people who will never set  foot back into the church.  Tears flowed as he said, “While I hope you will come back to a testimony of this church and of the Book of Mormon, I want you to know that we just want you here, no matter what. The church needs more people like you, people who think for themselves.”  Crying now too, I shook his hand and walked out.

What he did was invite me to stay in the church as I am. What he did was show compassion over condemnation. He could have given the apologetic responses I’ve heard for my issues, and we could have had a lively talk about church doctrine. We could have fought over feelings and history. He could have told me the things I had heard from others: “You’re under the influence of the devil.” “I feel so bad for you. Your family is going to pay for your choices. How could you do that to your family?” “You’d seriously give up the blessings of eternity over gay marriage?” and the like.  But that good bishop realized that those tactics do not work. Inflicting pain does not make a person want to stay in the place where the pain is felt.

This weekend was General Conference for the Church of Jesus Christ of Latter Day Saints. I still listen to all of the meetings. My husband believes, and I want him to feel that his beliefs are as welcome in our home as he has made my beliefs. Some of the talks given were beautiful and necessary. Some made me angry and sad to the point of tears. I wonder if the brethren know how much what they say does to the members who are on the edge or even members like me who are on the outside. Some talks were given with the same compassion as my bishop displayed that day. Some, while true to the doctrine the church believes, will push people away. It makes me sad.

Today, I’m most sad for the women who were turned away at the doors to the Priesthood Session of the conference. They are a group of faithful Mormon feminists who seek to have equal standing in the church as the men. Contrary to what was said in a certain talk, they do not seek to be just like men. They don’t seek sameness. They seek the ability to serve in positions equal to men. To have an equal voice. They want to do more in the church that they love. These women are better than me. I entertained the notion of agitating faithfully from within the church to change the things that I feel strongly about, but in the end, I could not do it. It was entirely too painful for me. These woman face that pain time and time again with great courage. They’re trying to stay in a gospel that they love and how they are treated in return will have an effect on their relationship with the gospel in the future.  I watched in real time as these women who had waiting in line for hours were pushed to the side so that the men in the line behind them could pass them and enter the meeting. Any man, whether a Priesthood holder or not, gained entrance to the meeting. And, unlike meetings specifically for women where men are allowed to attend, no woman was allowed in.  I watched as they each took their turn, one by one, and asked for entrance to the meeting. Each time being given a simple ‘no.’

A woman being denied entrance to the Priesthood meeting graciously smiles through her tears.  Photo used with permission by photographer and subject. The rest of the photos can be seen at http://www.flickr.com/photos/104456736@N08/with/10112225866/
A woman being denied entrance to the Priesthood meeting graciously smiles through her tears.
Photo used with permission by photographer and subject. The rest of the photos can be seen at http://www.flickr.com/photos/104456736@N08/with/10112225866/

What harm would it have done? Would letting these women in mean concession? No, it would have meant compassion. It would have been akin to my Rhode Island Bishop offering me a seat in the church just as I am and being grateful only that I was there. As these women walked away from a church building they were just one-by-one denied entry to,  a talk was being given inside…

 “So my brothers, it is your duty to reach out anyone who appears at the doors of your church buildings. Welcome them with gratitude and without prejudice.”

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I’ve got your Down syndrome Awareness RIGHT HERE.

So…it’s October. It’s Down syndrome awareness month. Yeah, I know you think that happened in March, but that was just Down syndrome awareness DAY. I know people counted down to it the whole month, but still, October is our month. It’s also breast cancer awareness month, (I’m not capitalizing anything tonight, folks, because shifting sucks), it’s also bully awareness, cyber security awareness, and domestic violence awareness.

Which is interesting because it’s also Octoberfest.

I used to get in on the whole Down syndrome awareness shebang. It’s good stuff. There are great blogs to be read and much to learn. I just don’t have it in me right now. Maybe I will in a week or two, we’ll see. But for now, I’m not all that in love with Down syndrome.

{GASP! Did I just say that?! Yup.}

I feel like in the Down syndrome communities and elsewhere, that we constrain ourselves to only project a beauty, a joy, a love of all things Down syndrome. In our fight for acceptance, I feel like we’ve pushed the pendulum too far the other way. We’ve only spoken about how great Down syndrome is, and how great our kids are, and then get mad when people imply that our kids are all angels. We’ve perpetuated that myth and many others. The truth is, it’s not all fun and games. In fact, it’s really REALLY hard. I have a hard time feeling like I can only speak of Down syndrome in the brightest of lights. I have a hard time when people think I don’t love my daughter as much as my other kids, or as much as they love their child with Down syndrome, because I say it’s hard from time to time. Sugarcoating disability doesn’t help Abby get the services she needs. It doesn’t help people understand that she’s an individual with her own likes, loves, hates and rage.  And it certainly doesn’t help me come to terms with the reality that we’re faced with.

Down syndrome beauty

 

My reality with Abby’s Down syndrome is very different than the realities of other families with the same diagnosis.

I’m in no way saying that people who write positively about Down syndrome are lying or sugarcoating.  I’m saying that if I only wrote glowing reviews of that third chromosome, I would be leaving out the substance of our day to day lives.  I would be whitewashing the truth.

The truth is, having a child (or two) with a disability is hard. I can say that and know that it doesn’t negate for a second how much I love my children. I’d do it all again. In a heartbeat (that still has the most adorable murmur). Abby has taught me a new form of happiness. She’s brought a richness to my life- both in the good and the hard times. I hope to one day be like my friend, Holly. Her status today was this: “I haven’t said anything for Down Syndrome Awareness Month, because I have nothing to say. Brooke is just another member of our family who happens to need extra help on her life journey…we wouldn’t change her for the world.” That to me, is acceptance.

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So it’s not just me then?

I’m super sensitive these days. Pretty damn depressed, too. It’s a shitty combination. It makes me yelly. And offendy.  This whole government shut down thing only makes me hate. There are too many people who can’t see past the noses on their own faces. Who think that because this government shutdown doesn’t hurt them (right now) it’s not that big of a deal. That it’s good that they don’t have to put up with Obamacare (a bill most have just decided they hated without even knowing what is really in it) and whatever means it takes to get rid of it are necessary.

That it’s totally okay for families like mine to take the brunt of this political charade.

That makes me hate.

But from what I’ve been reading on the internets today, I’m not the only one. Seems like we’re all going through something right now. Not just these shutdowns, or autism, or Down syndrome (oh my gosh you guys, it’s Down syndrome awareness month! YAY! grumble grumble grumble) but that there’s a major FUNK settling over us. And unfunking ourselves is not easily done.  So why not embrace it? I found this yesterday:

(www.loadingartist.com click on image to see more great art!)
(www.loadingartist.com click on image to see more great art!)

That’s all I got. Love you guys.

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Desperate times.

I took a long walk after dropping the kids off at school today. I looked at houses in my neighborhood and coveted. I thought about how great it would be if I could get a job and make enough money for us to afford a mortgage that would allow us to stay in the same school boundaries, hell, in the same school district. I thought about how nice it would be to have a house that wasn’t so crowded. Maybe one with a garage big enough to hold my car and a laundry room that I could walk into.

I got home and turned on my computer and checked the news. The government is shut down. My husband is a Department of Defense Employee. His project has funds to last a little while, but not long. A week or so at the most. The furloughs over the summer along with the expenses of the move, our medical expenses at the children’s hospital in Rhode Island I had worked so hard to get help with, and some just shitty issues we’re having now have chewed away our savings.  I’m not longer thinking about a bigger house with a normal sized garage. I’m thinking about survival.

I could go on and on about how mad I am at the Senate. How completely jacked up it is that they would let the whole country go to hell over Obamacare, but it doesn’t change anything. They weren’t thinking about people like me. People who cannot contribute to their campaigns because all of our money goes to pay for our kids’ care. They were doing what would make their donors and their party pat them on the backs. I want to change things. But I don’t have the time or the energy to.

I am depressed and I’m scared. We already live very frugally. I buy all of our clothes at Goodwill. We furnished our house from Craigslist. My car is 11 years old, and Lance’s car is worth less than Abby’s hearing aids. We’ve moved three times in the last two and a half  years to pay off our debts and to build savings. Just like that, all of the frugality, all of the moves, all of our savings. They see it as politics. I see it as shooting the hostages.

I’ve been wracking my brain for ways to earn an income.  I can’t work outside of the home because of Abby’s health issues and because I have to be able to drop everything at a moment’s notice for Casey. But I can work from home. I can write. You guys can see that, right? I can edit.  If you know of anyone that needs writers or content editors, please let me know. Shoot, if you know anyone that can use anything where I can work from home, please PLEASE let me know.

I’m also selling ad space. If you’re looking for a cheap way to have thousands of people see your ad for your etsy shop, your blog, whatever, let me know. The tab above that says “PR Welcome” has details, too.

In the coming days I will open an etsy shop. I make jewelry that is pretty damn cute. I’d wear it myself, but I’m not that kind of girl. Which is hilarious because of how much I love to make it. When I can get the right part for my vinyl machine, I’ll sell that crap too.

That’s all I got. Hug a government employee today. Or their wives.

autism

Approach.

I went on a field trip with Casey’s entire fourth grade today. To save money, the school has parents drive the kids. I had three extra kids with me who engaged with me and each other the entire drive. The fourth, my son, scripted in the back seat and refused to engage with anyone else in the car but me. The kids tried. They really did. He was somewhere else. I explained to the kids what he was doing and how cool it is that Casey can memorize things verbatim so quickly.  They thought it was cool, too.  My heart ached a little as we continued to talk about everything else, with Casey’s quiet scripting filled the spaces in between.

We got to the farm and went about doing scavenger hunts, talking about animals and nature, and playing games. Casey clung to me the entire time. When kids tried to engage him, he didn’t respond, even though he’s fully able. When no one picked him to be their partner time and time again, my heart broke.  My frustration boiled up as teachers repeatedly tried to get him to make eye contact, and he would  not.  All of this time, I watched as the other adults chaperoning the trip talked and laughed with each other. My opportunity to make friends was being lost to having to be no more than five feet away from my son. My soul felt as though it was taking a beating over and over and over again.

With all of this building inside of me we went to do an egg relay. The rules were simple: carry an egg on a spoon to the other half of your team and hand it off. If your team broke two eggs, you would lose. The first one to get through all of the people on their team won. The teacher counted off numbers and one kid quickly turned a little red in the face as he said, “I don’t want to be on Casey’s team! There’s no way we’ll win. He’ll get all crazy and drop the eggs even before we get a turn. We’re going to lose.”  I had to swallow a couple of times so I didn’t yell. Firm but calmly, I said, “That’s not very nice to say. How do you know that he’ll drop it? Give him a chance.”  I was thinking, “You’re a jerk, kid. The minute I get a chance, I’m going to trip you.”  We assembled the kids in their lines where I could see that the jerk kid was on the verge of tears. It only made me more mad. I dug what is left of my fingernails into my palms. A kid who had missed the instructions asked us what we were supposed to do. A couple of the kids piped up, and a thought came to me. I asked the jerk, “So, what’s the secret to this game? How do you win?” The kid’s eyes lit up as he explained to all of us how if you go slow rather than trying to run, you’ll win because you won’t drop the egg and have to go back. He said, “Casey, did you hear that? It’s easy. Let me show you.”

The kid really wanted to win and was justifiably worried that Casey was going to get all crazy. Casey does get all crazy. While what the kid had said wasn’t nice, it also wasn’t wrong.   My anger towards him didn’t help Casey at all.  In fact, had I unleashed on the kid, it would have only harmed any hope of a relationship with Casey. I would have been yelling at the kid for me. Not for Casey. Casey didn’t care. The key was to help the kid see that there was a better approach.  In it, I saw that there was a better approach to what had held me on the verge of tears most of the day.

On our way home from school, Casey leaned back and sighed, “This was the best day ever! I love you, Mom!” …Wait, what?  It was? The entire time I thought Casey had just been trying to make it through. Trying to deal with the absolute sensory assault a farm full of fourth graders can be. Clinging to me because he was feeling the rejection of the other kids who had tired of trying to engage him.  He didn’t look like he was enjoying it the way I had looked when I was feigning happiness throughout the day. He just was happy.  The things that had chipped away at my insides were about me. My pain. He didn’t care to be with the kids. He was excited to just be with me. The entire time while I was worrying about how not socially-appropriate it was for him to want to hold my hand and hug me the entire time, he was just showing me how his insides were feeling. He was just being himself.

Casey doesn’t act like other kids. It makes me sad that he has such a hard time making friends. Most of the time though, it doesn’t bother Casey at all. He doesn’t need friends like I think he should. His self esteem and happiness isn’t wrapped up in what others think. His best day was one that was really hard for me. I was projecting on him what I was feeling, and failed to truly understand that he doesn’t think the way I do. I was approaching Casey’s autism through my own lens, and not seeing the world as he does. He’s made up from different stuff.  Not better. Not worse. Just different. I complicate things that don’t need complication. My approach has been off.

It doesn’t mean that I’m not allowed to feel emotions of all kinds in relation to his autism. That is my reality.  I do need to learn not to complicate things that don’t need to be complicated in his world. There are social skills that matter and that he needs to learn to the best of his ability. Being able to engage with other kids is one of those things, maintaining eye contact is not. But all of it needs to be approached in a way that benefits him, and doesn’t just make me feel better. My feelings, my reality, is mine only.  His reality is his. He’s happy most of the time, and I don’t need to complicate that with things that will only frustrate him in the end.

I’m really pontificating here, aren’t I? I have these resolutions and no real way of getting there. I don’t know how to not feel sad when I see him rejected by his peers. I don’t know how to not be angry when kids are assholes to him, even if he doesn’t understand it. And I don’t know how to approach this in a way that works for him, because it seems like just when I have a handle on his autism, I’m opening the wrong damn door.  I need to stop trying to rewrite the script for our lives that I should have just thrown the hell away when he was diagnosed.  I don’t know how.

I need to let Casey lead a little. I need to observe instead of worry. Go with him to where he wants to go and just let him be who he wants to be. While we were counting the different types of dahlias, Casey popped out of the bushes like this (recreated) and said, “Look! I’m a flower!”

Approach to autismYou want to be a flower Casey? You can be a flower.

 

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People of Target for the Win.

I wrote about this on my facebook page the other day, but I thought I’d write out the whole story.

Things have been, eh, busy for us lately. Friday I spent the entire morning working on Abby’s medical crap so she could start school on Monday.  I went back and forth to the school, to her doctor’s, the pharmacy, etc. The Special Ed office in Rhode Island has yet to send Abby’s records (good thing I brought a copy of her IEP), and so all of the medical releases and the medical plan I had done there had to be redone here. That included getting her new prescriptions for her breathing meds because I couldn’t just send an inhaler, it has to actually be in the box with her name and prescription information on it.

Abby goes everywhere with me. It wreaks HAVOC on my body. She’s between being able to ride in a cart in stores that have them and being able to walk on her own without running away at every turn. Almost everywhere we go, I end up carrying her a lot of the time. We’re trying to encourage her to walk more, but her body tires out pretty quickly into it, too.  So after just a couple of hours running errands, I really start to feel it in my back and hips.  By the time we’d gotten to Target on Friday, I was in quite a bit of pain.  I forced Abby into the cart as she screamed in protest. I was tired and on the verge of tears. As I worked through the isles, I picked up a large container of cheese balls, which are Peyton’s absolute favorite treat. I never get them as I really really like not having a house covered in orange fingerprints.  But Peyton has been super good in spite of getting any attention for the last month, so I figured I’d surprise him with it. As soon as the can of orange death went into the cart, Abby FREAKED out.  She turned her body as far as she could go and grabbed the container.  She tried everything she could to get into it, eventually straight up gnawing at the corner of it. The yelling persisted.  Fully beaten down, I opened the container and shoved a handful into her tiny hands, and then threw the container back into the cart. Abby quickly started turning orange, and then figured that she could reach back into the cart, untwist the cap, and grab herself more. I didn’t stop her. I just wanted to get out of there and this was keeping her in the cart and calm.

In my fatigue, I almost willed someone to say something to me. I was so far at the end of the rope, that I knew I’d freak the hell out the minute someone said something like, “Well, I’d never feed that kind of poison to my child!”   I waited and worried as I worked to finish off my list. It didn’t happen. In fact, people were SO awesome about it. One employee came by and smiled and played with Abby and said, “You do what you gotta.” when they saw the open container of unpaid for cheese balls. Two women smiled as they walked by, the younger said, “She’s too cute, I couldn’t say ‘no’ to her either!”  Another lady asked me how old she was and said, “I just love that age…except at the store…the cheese balls are a good idea.”  When we got through the checkout, the lid to the cheese balls came off as the lady went to scan them. A bunch of cheese balls flew out. I apologized as I tried to clean up the mess and wrestle with Abby at the same time. The checkout lady helped me, all the while telling me how she understood the need to just get through the store, and that she was happy to help.

Abby at Target

The tears that I had held back in my exhaustion earlier came as I trudged out of the store. This time though they came because people were nice. People didn’t judge me. They weren’t condescending. They were kind. They didn’t have to go too far out of their way, all they had to do was smile and nod. A quick sentence of understanding.  They had no idea how tired I was, or how hard these last couple of months have been. They didn’t know how much I needed their kindness, or how their simple actions would leave me crying in the parking lot, filled with gratitude for the goodness of people.

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In her silence, she is golden.

“Is there anything else the preschool teacher needs to be aware of?” I was on the phone with the Special Education director for preschools in our district. We’d been over Abby’s hearing and health, and are planning on her starting at the school this week. Hopefully. “Uhm, yes. I’m actually sitting in the parking lot of her pediatrician’s office. We just had another appointment. We think Abby might have autism too.”

Nailed it.

I congratulated myself for making it through that sentence without so much as my voice catching.  I did not cry. I stated it as it is: we don’t know, but probably.

“Are you okay?” Damn you. This question caught me off guard. My voice trembled as I began to watch my clinical matter-of-factness crumble. “Do I need to be? I mean…yes… I mean…no. No I’m not. I’m not okay with this. But I will be. Give me six or seven years…”   I think I took her back by being honest. By not spouting out the first platitude that came to me. I took myself back, too.

I feel like I shouldn’t be talking about this, that I shouldn’t be sad about this, that I shouldn’t even so much as be processing this until the diagnosis is written on the paper. I feel like I should suspend all of that ache until we have some concrete answers. It makes sense, right? I mean, there’s still the possibility that all of her ‘red flags’ can be explained away with something else.  I hope so. But I don’t think so.  Even if they are, we’re still dealing with the reality that my three year old is pretty much silent. She makes very little sounds.  My husband and I remarked once how we were jealous of our friend’s five month old baby. She babbled. She responded to talking with coos. Abby is like a portrait. As beautiful as anything I’ve ever seen, but silent. A world of wonder hidden under seemingly perfect brush strokes. We hear her voice the most when she cries. It’s the cutest little voice. It has the same tonal quality of her father’s, but expressed through the vocal chords of a little girl.  I long to hear that voice say “Mom” or even yell at me in protest. I ache to hear her say anything at all.

Maybe she will one day. Maybe she won’t. Either way, the process of understanding has started, and my grief is there no matter how I try to talk myself out of it. It’s preparatory.  We found out my father was going to pass away 8 weeks before he finally did. Those eight weeks felt as though we were suspended in our grief, that we couldn’t mourn the living. I did though. I cried myself to sleep a lot and tried to take in everything that I was seeing so my thirteen year old brain wouldn’t forget. When he did pass, it was hard. It was very hard. But nowhere near as hard as it would have been had we all not spent the prior two months processing. It didn’t have to come all at once.  It’s kind of like I’m doing now. Maybe she won’t be diagnosed with autism, maybe we’re dealing with something else entirely. Maybe it’s just the Down syndrome. Or maybe she’ll just give up the mime-act and start talking out of nowhere. At the very least, when I get to the point of knowing, I will be okay. I will have done the work beforehand to manage the weight of the day.

Her Silence Is Golden

Or maybe I won’t be okay. That’s fine, too. It’s like I’ve said to countless other people but refuse to allow for myself: whatever you’re feeling is okay. It’s right. There is no right or wrong way to get through this. Allow yourself to feel it.

So I am. Is it dark and heavy all of the time? Of course not. I mean, have you seen Abby? She doesn’t give you a lot of space to be super sad. In her silence, she is golden. Her smile and a tap on her chin that means I will spend the next half hour singing songs while she mimes the actions. Her giggle that reminds me that her voice is in there. And the feelings that come when she’s in my arms- that even as a writer I am at a loss for words to describe. Sometimes, words just are inadequate.

Most of the time, really.

confessions

Can I be your apostate friend?

I’ve danced around it in posts published, and addressed it directly in posts I was entirely too afraid to publish.  I’ve wanted desperately to talk about the other thing going on, but was too afraid to for a lot of reasons.  Reasons that might probably still be realized when I publish this post, but I hope not.

I no longer believe in the Church of Jesus Christ of Latter Day Saints. I can’t say I’ve ‘left’ the church completely as my husband still believes and we still take our children.  It’s been a full year now since I came to this decision, and it wasn’t one I took lightly at all. When I was a member, I believed that people left for three reasons: 1. They never had a testimony to begin with. 2. They were offended by someone or 3. They wanted to sin.  This was just not true for me, along with most people who leave.

I’ve written no less than a dozen posts that go over why I no longer believe. They defend the amount of time I’ve spent studying and the sources I’ve used. They went over in detail the reasons I have; both historical and current doctrines and practices, and went into detail into how much pain this has caused me. At the end of the posts though, I could never hit publish. They might have made me feel better, but they would have been hurtful to those I love. I’ve made a lot of mistakes in “coming out” to friends and family. I’ve caused pain that was not necessary in an effort to defend myself. I reacted in anger to misunderstanding.  There is no manual for having your entire world view shift from beneath you. There is no guide for having the very thing you have built your life around not be what you thought it was. If I’ve hurt you in this process, please know that I did not mean to, and that I am very sorry. I was working from a place of deep pain and anger.

When I saw people leave, I misguidedly thought that they didn’t go through a great deal of pain. I thought that they excitedly embraced a life without church commitments, tithing and guilt.  I was wrong. This transition for me is up there with some of the hardest things I’ve ever been through.  I carried an ache of grief and pain that still lingers today. I worried so much before I told Lance that he’d leave me. When I told him I no longer believed, I also told him that if it meant saving our marriage and keeping our family intact, I would fake it.  He then gave me the greatest gift when he said, “I don’t want you to fake it. I just want you to be happy. I just want you to be yourself.”  We still love each other as much as we ever and are working through being a “mixed-faith” family.

The biggest reason I haven’t said anything here though, is because I was afraid.  I was afraid of what people would say. I was afraid of readers up and leaving- even though religion plays only the tiniest of parts on this blog. I was afraid of the same kind of pain I went through and the horrible things said to me and of me after I posted dissent to ONE thing in the church- gay marriage.  And I’m still afraid, really. But this blog is about me, and what I’ve gone through and am still going through is a huge part of that. Writing is my outlet, and I want to be free to use it for EVERYTHING I’m thinking or feeling. Not just the stuff that everyone can nod their heads in agreement to.

So, for whatever LDS members are left here I have a question for you. Can I be your apostate friend? Can we still be friends even though we no longer believe in the same things? I will never try to convert you to my way of thinking. I would never knowingly put someone through what I’ve been through in the last year or so. I’m willing to talk, and I think it’s important that members understand apostates better. It’s why I’ve addressed this directly: I want people to understand me- and people who are going through the same things I am- better. I want you to see that though I’ve changed in a lot of ways, I’m still me. I don’t hate the church and still fully believe that the members of the LDS church are some of the very best people in the world. I’m Mormon by heritage-my ancestors go back to Nauvoo. I can’t and don’t want to escape that legacy. The church is why I have my husband, and for that I will be forever grateful. If he can live with me as his apostate wife, surely I can be your apostate friend…

 

Uncategorized

Age Appropriate Social Skills, Nope. Ducks.

I got the greatest email the other day. In it, a lady told me of being at a park and seeing a teenager with Down syndrome run up to an especially obnoxious badelynge of ducks (I just found that word, it’s the correct word for a group of ducks on the ground. If you get nothing from my blog today, you have at the very least, learned a really cool new word) screamed “QUACK!!!” and then gave the ducks the bird.  Yes, folks, he flipped them off.

I laughed and laughed. That’s kind of what teenagers do, right?

So I was going to go on here about how sometimes the very things we don’t want our kids to be doing are the very things that they’re typical peers are doing but uh…. I found a ducks giving advice and well…

badelynge of advice ducks

 

downloadI didn’t say it was going to be good advice. Actually, this meme’s name is Malicious Mallard. You can google it. There’s a good advice duck, too. But that seems a bit shady as well.

2620132107128

I have so much more I want to say to you all, but I have now found a whole set of pictures of famous people and even Disney Princesses that have Nicolas Cage’s face on them. I MEAN I HAVE TO GO BE A PRODUCTIVE MEMBER OF SOCIETY.

 

Uncategorized

Resolve.

The movie “Up” by Disney-Pixar tells the sweetest love story in just a couple of minutes. You watch this couple fall in love, get married, build a house, and then contemplate having children. You see them build a nursery and then in a doctor’s office, where Ellie is sobbing. It’s unclear whether or not she miscarried or if she was just told that they can’t have babies, but that is besides the point. The feeling is very clear. Her plan for her life has taken a sharp detour.  Then, in just mere seconds, a scene rolls by that has stuck with me since I first saw the movie.  In the next scene, you see Carl looking from a window down on his wife.

Ellie in the sun from Disney-Pixar's Up

I’ve come back to this image in my mind a lot over the years. Right now, it’s the wallpaper on my phone. I love it so much because, to me, it’s a embodies one word: Resolve. Ellie, as she’s processing this life changing news, has stopped crying and started to cope. It doesn’t mean that  the tears won’t surface in time, and probably in the most random of places, but it does mean that she’s working on being okay. She’s building a resolve from within her. It doesn’t come all at once, but it comes. It doesn’t stay all of the time, but it’s there. The resolve.

The resolve to just make it through the day. To be okay with yourself and to work on being okay with your situation.

The resolve to find happiness and laughter even on the darkest of days.

The resolve to understand that sometimes the hardest of circumstances are what make us who we are, and can work to make us better. They encourage growth in a way that a life without soul-crushing pain will never build on it’s own.

The resolve to be a little better than you were yesterday, but to understand that life is a dance, and sometimes it’s more one step forward and three steps back.

The resolve to use hardships to better understand other people and the trials they face. Then use that understanding to serve.

The resolve that when life gets too hard to take, to go back there, to your place in the sun, and be quiet and wait.

The resolve to live life to the fullest- and that doesn’t mean only happy fluffy moments. It means feeling the depth of all emotions, both wonderful and hard. It’s a life less ordinary, but completely filled to the brim with experience.

Ellie and Carl

Next in the film comes a moment I am too quick to forget. Carl comes down and kneels in front of his wife, and comforts her. I think about my husband. Last week he spent much time just holding me as I sobbed about Abby’s possible autism and then as I wailed after hearing the news about Kelli and Issy. He is strength to me.  Carl then places their adventure book on her lap and they begin a new adventure.  Lance did the same. For now, it’s a buying a home that is in need of some serious repair. It’s his encouragement for me to continue with my book. It’s his helping me to look for the adventure in every single day.

Life gets in the way of their plans to travel to Paradise Falls, but in the end, it was a better life than they could have planned.  And so far, the same is true of my own life. I did not plan it at all this way, and I’m glad. It’s better. It’s so much harder and it continues to force me out into the sun- to a place where I close my eyes and just breathe. Where I learn to build a little more resolve then I did the day before. I’m grateful for that.

 

autism

Kelli and Issy Stapleton, the media, and the story that needs to be told.

Today I woke up, and in the haze that has followed me since Wednesday, I numbly got my kids ready and walked them to school. By the time I got home, I was soaked from the pouring rain. I didn’t realize that I had an unused umbrella in my hand until I put it down after walking inside. Freezing, I made my way to my bed where I now sit.

I looked for an update on Issy Stapleton. I wanted to know if she’s okay. If she’s regained consciousness that was stolen from her just days ago.  The Team Issy page on Facebook hadn’t posted anything new, but I noticed something- it had at least a thousand more “likes” to it.  Before this, every follower on that page had been fought for. Kelli had worked tirelessly to get Issy’s story out. To raise money for her care. I know this, because I worked with her and a friend of mine to get her story on CNN.  That didn’t happen.  Kelli had petitioned news outlets, television shows and even Dr. Phil. She begged and pleaded for some attention.

Today, she got it. As I moved from the Team Issy page to Google to look for any update, I noticed that her story has been picked up by most of the major news outlets. Not the story of a mother who had been fighting the system for years and years trying to get better care for her autistic daughter. Not the story of a beautiful blonde fourteen year old autistic girl who had been denied services time and time again, from the state, from insurance and lastly, again, from the schools. No, the story now being told is of a mother that did the unthinkable. The unconscionable.

I could grapple for months with the knowledge only that my beautiful, vibrant, strong, sunburst of a friend tried to kill herself. I could seethe in rage at her for just that. How dare she take the only mother her children have? How dare she stop fighting? How dare she not tell anyone it had gotten that bad? How dare she leave us? But all of that emotion gets grossly conflated when you add in the horror of the other choice she made that day. She tried to take her daughter with her.

There are no words for the emotions we all feel for that.

The news outlets I read are missing the point. Sure, it’s sensational to see this all-American woman sent to jail for the absolute worst crime a mother can commit, but that story will soon fade away. It will be moved from the front page to the back, maybe with a blurb about what a victory it is that she was found guilty and sent to prison for the rest of her life, but that is all.  We will be left worse off than we were before, inside the autism community and out.

The story that needs to be told is one of an amazing fourteen year old girl who struggled to live in a body that raged beyond her control. A girl who wanted to fit in, be loved, and be herself, but couldn’t quiet the storm within her. People need to know how hard her parents fought for her. No stone was left unturned in her care. Time and time again they were denied access to treatment, to care, to school programs and to hope. They lived life on the highwire of special needs and had no safety net for when they fell. While we can have no sympathy for the last choice Kelli made on Tuesday, we do need to understand what led up to that. We need to get the message out that parents need a safety net. People with autism need easier access to the services they need. They need to be treated as equals, because they are equals.  Parents need advocates. We need to feel that we can be open and honest about autism without being vilified as horrible parents who do not accept their child for who they are. We need to know that people care. And we need a break. A minute to take off the responsibilities of care-taking, parenting, therapist, advocate, and punching bag.

This will keep happening so long as we focus on the crime and not on the criminal and the victim. We need to focus on what we can learn from this to prevent it from ever happening again.   If we do not understand what caused Kelli to break and work like hell to fix it in our own communities and in the system, we are all at risk for it.

All of us.

Uncategorized

They are going to vilify her.

I would have vilified her.

In the same way I vilified the mother of Alex Spourdalakis just a couple of months ago.

They are going to vilify my friend.

My friend who is now in the hospital after doing something so unthinkable that I feel like the whole world just crumbled beneath me.  She tried to kill her autistic daughter and herself.

There was a space between me and the mother of Alex. A space where I could believe that she was crazy. That she was evil. That she was a monster.

There is no space between me and Kelli. After speaking to her on the phone for hours one night several months ago I told my husband that the only difference between her daughter (who she had been fighting to stay in an autism residential treatment program) and my son was that the meds worked for my son’s aggression. That is all.

How does it get to this? Kelli is a fighter. She stopped at nothing to do what was right for her daughter. She fought. She fought. She fought. When did she stop fighting? How did it get to this point? Kelli is not an evil person. She’s not. How did it get so far? What do we do now to make sure that this never happens again for any of us? How do any of us know that we’re safe from that road? Something needs to happen. Parents need a safety net. WE NEED HELP.

The space between the good parents and the monsters is gone. This is too close.

What fragile strands of resolve I had left after spending the day coming to terms with Abby’s autism are frayed beyond words now.

My friend. My friend did this.

autism · Down syndrome

Falling apart.

“The only other time I’ve ever had anxiety like this was before we got Casey diagnosed.  We knew he hadn’t met his milestones, but I wrote it off to too many other things. My insides knew what my brain refused to deal with. It wasn’t until I went to therapy that I figured out the anxiety was my soul screaming at me to see what I wasn’t seeing. That Casey had autism. I just wish I could figure out what THIS anxiety was over…”

I said this to my therapist in DC, to Lance, to my mother and pretty much anyone else I had talked to about my anxiety with. I said those words and didn’t get it. I didn’t get it. I didn’t get it.

I missed something that was so plain to see. My anxiety was the same as it was before. Same feeling, different child..

We think Abby has autism.

When I wrote yesterday about not wanting to write before I knew I was right, this is what it’s been about. With Casey, we told people that we thought he had autism, and in a misguided attempt to give us hope, they told us that we were wrong. That he was fine. “Look! He’s looking at me in the eyes! He’s too affectionate. He’s not autistic.” I wanted to be wrong.  But it hurt to not be able to just say how I felt, wrong or right. Those attempts at hope shut down the conversation about how I was feeling.  I wish so much now that I had written what was going on through the evaluations and on diagnosis day. Instead, I put on a happy face and went along with it as if everything was okay. That I was okay. And I wasn’t.

And I’m not now. I’m not okay with her having autism. I’m pissed off about it, and at the same time there’s a sadness that seems to have seeped into my bones. I know well that the autistic adult advocates will say how terrible it is that I’m mad about autism, but dammit, tell me what good autism brings a child with Down syndrome? Tell me how to just accept it and be happy that she’s got yet another hurdle to deal with along with Down syndrome, hearing loss, immune system problems and shitty lungs? It doesn’t change who she is and the light she is in our life. It doesn’t change how I feel about her from the day I was still in clear denial to the next day where it hit me like a ton of bricks…

We were standing in the kitchen and I was trying to get Abby to say ‘hi’ to Heidi. “HIIII-DEEE” I said over and over again. A year earlier she had been saying it. And “ball” and “book” and “uP” and once, just once, she even said “mama.” That’s when I saw what my body had been trying to point out in the same way it had 8 years ago. Words that she had been saying she no longer says. She no longer imitates sounds. She’s regressed.

If it were just the regression, we could say it has something to do with her hearing (which doesn’t, in the end, make sense because she actually hears better now than she did a year ago because of the tubes). We have been saying that her sensory issues were because of the Down syndrome. And her social issues? She’s just shy. You know what? This all might well be the case. But added together it paints a pretty clear picture of autism.

As I say this, as I type the words out, I find myself wanting to just get in bed and stay there for a long time. I want to pull the covers over me, as if they are a shield against the reality that I am too damn tired to take right now.

I’m not allowing comments on this post. I’m not exactly sure why. I don’t want to even feel the need to put on a brave face right now and say that it’s going to be all right and I don’t want to have to agree with anyone when they tell me that this isn’t the end of the world. Because right now, in this moment, I’m really really sad. Being sad is not wrong. I’m not going to be sad forever, but for right now, I’m going to let myself fall apart a little.  I’ve gotten pretty good at putting myself back together, I know where the pieces go.