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Peyton didn’t want to move…

We’re moving into our new (to us. It’s 24 years old with all original everything…I’ll post pictures soon!) house today and as I’m unpacking the kitchen Peyton stomps in in a huff. Right after him Dave (our friend who OFFERED to help us move, so, I guess probably the best dude in the world?) and Lance came in with the washer and dryer. I hear Peyton start to sob so I leave the guys and go after him. He’s crying. I ask him what was wrong and he said he didn’t want to talk about it. I gave him a hug and pried, “Was it Casey again?” Those two have been at each other’s throats for days. “No.” “Was it Carter?” No. “Was it Abby? Did she get you? Did she tackle you to the ground and tell you that you don’t read good?” Not even a smile. Big tears rolled down his face as he said, “Can I just be alone right now?” Sure, Peyton. I ruffled his hair and went to find out what was going on.

Turns out, Peyton was pretty sad about moving. But not in the way you would think…

Before they had packed up the dryer, Peyton climbed in it. Lance found him and told him to get out. He came back in a minute later and as he pulled on the dryer, he thought it was caught on something. Seeing that it was free, he opened it up. There again was Peyton. “Do you want me to ground you?! Get out of the dryer!” Peyton replied, “You can ground me.” He didn’t want to move…from the dryer…

Abby’s got a lot of Peyton in her, which scares the hell out of me. Today, when we went upstairs she had locked herself in a closet. Carter went to open the closet to rescue her and just as soon as he had slid it open she SLAMMED it shut again. Then went on to play alone in the dark closet.

Guess their just working through some stuff?

day in the life · Uncategorized

Hey guys, I went to the gym!

It’s a big deal. I haven’t been to the gym in years. I hate the gym. It’s full of people. Fit people.  Fit people talking about fit-ness.  It was cheaper to get a family pass than to just get the kids a YMCA pass (for the pool. oh my gosh. for the pool. so much pool.) so I begrudgingly added my name.  It was the start of the year, so I knew what I was going to look like- the beginning of what would soon be a short lived Resolution.  Besides getting the membership, for me, just getting to the gym is feat.

The pass isn’t cheap, but I am. I’m so cheap. Basically, the pass is the cost of our would-be cable and DVR in our home when we move, but because I’m a great mom and a total martyr, I gave up on demand TV because Lance said I couldn’t give up running water. I couldn’t handle the thought of us not squeezing every last dime of our membership out of it, so I decided I would go. I resolved to go. I would go. Just not today. No. Not tomorrow either. I’ve got kind of a cold? Yes. Feels like a cold.

The day came. I could no longer fight the anxiety of the broken-down-to-the-day cost of our membership slipping away from me. I stomped to pack a bag to go. A gym bag. There was no gym bag. I trudged out to the garage to find one of Lance’s old bags. There were none. I finally found an old backpack under a box in our garage. Peeling it back with just my fingernails because of the threat of spiders, I opened to find that it was full of stupid odds and ends stuff grabbed just as we were moving from Rhode Island. Five months ago.  Anger rose. I channeled it, as I usually do, towards Lance and moved on. I ended up using Abby’s backpack. It smelled like old juicebox.

I went to pack said gym bag.  Pulling out an outfit out of the mountain of clothes that rises triumphantly above the dryer itself, I had a full on existential crisis over the fact that the outfit I was going to change into after I worked out and showered, looked just like the one I came in with. I toyed with the idea of actually wearing jeans. JEANS. For a second I had forgotten who I was.

I went upstairs to grab some of my vast collection of trial sized oddities (I love trial sized stuff, and after Abby’s hospital stays I have felt very justified in buying travel everything just about every time I go to Target. It’s for this reason alone I think she’s stayed out of the hospital.  I’m too prepared. Fun fact: the hospital where we live now is actually closer to our house than the Target.) to use while showering. The thought of showering without the threat of being dragged out by a screaming child put a spring in my step. I glanced in the mirror. Ugh. My face was blotchy from my body’s attempt to keep me young through no other means besides acne.  I realized that they were going to take my picture that day. I shuttered as I thought about my new driver’s license. No. Not again. I smeared some foundation on and then realized that I now just looked flat. I added some blush, but then I realized that it made my eyes look sunken in. I added some mascara. Eventually, I found myself in full makeup. To go to the gym. “I’m one of those girls!” I shrieked as I grabbed a towel and rubbed all of the makeup off.

After my ADHD could find no more sweet diversions, I packed up Abby and headed off. The YMCA by us has a really great kids care. It’s always full of kids Abby’s age, so it gives her some time to be with her peers, which is necessary. She loves it.  After getting my information and taking a picture that looked strikingly like Nick Nolte’s mugshot, I dropped Abby off and went on my way to find a machine.  The only elliptical open was next to a very fit girl I thought would want to tell me about fitness. I put my earbuds in- a global sign of “nope”- and started my workout.   Fearing that the kids care would be up at any point to get me, I jumped into a workout, desperate to burn “gross amounts of cheeseball” calories off.

Jim Gaffigan
I stole this from Meta Picture show stole it from someone else so now it’s right.

 

I can only imagine what the girl next to me was thinking:

“Wow, that chick tackled the machine like a gazelle, but not a gazelle. Like a chubby chick should attack a workout.”

“Her shirt has a wolf, a Native American woman, a moon and some weird dude on it. I don’t know what to do with that.”

“I’ve never, ever, seen someone sweat so much in so little time. I should ask her if she’s set some sort of record. This might be her talent.”

“Is…is she crying?”

The workout was glorious. I was surprised that all the walking back and forth to school holding Abby had made it so I wasn’t as out of shape as I thought. What’s more? I felt like I sweat out the stress of the week. I might have cried. It was a release. So I went back. In fact, I’ve been going a couple of times a week until I got planter fasciitis. Which fills me with hulk like rage.  I’m still the chubby ADHD girl in the weird shirts who cries, but I’m there.

Funny gym meme

I’ll post five million selfies later.

 

 

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Sirens

Sirens. The sound that once made all the muscles in between my shoulder blades tighten  had, over the last year, worked their way to just small twitches and spasms, barely noticeable under normal circumstances. These weren’t normal. I heard the sirens from far away. All of the muscles in my back had seized and the weight of Abby in my arms seemed to double. I shifted her to one arm as I waved down the fire trucks.  My shoulders screamed, but the sound of that ache dulled under the blare of the sirens.

Just minutes before I had been running through my house trying to figure out where the smell of smoke was coming from. Pushing away chairs, couches, checking every light and every outlet. Nothing. The smell was the worst upstairs, and as  I heard the wheeze that Abby’s been fighting for the last week turn to a raspy cough I knew there was no more I could do. I grabbed a blanket and wrapped her up, called 911 and took her out into the freezing cold of the day.

Two gigantic fire trucks. Two ambulances. I felt the sirens, as I had before, jitter beneath my skin. A feeling as much as sound.

I have never called 911 before. The six ambulance rides (six? I can’t remember) Abby has had have been calls from pediatricians and urgent care doctors who couldn’t treat the level of care she needed, and one from my sister when we were in Utah when Abby’s fingers and feet had turned dark.  But the sound of the sirens is one that I have had more than enough experience with. From the inside, just two weeks after having Abby when I hemorrhaged. From the outside waiting with Abby as the rescue team clomped past scared moms in the waiting room of the pediatrician’s office. From the inside those many trips from doctors offices to hospitals.

I hate the sound of sirens.

I'm not going to lie. I wish I had gotten a picture of the firemen. They looked like they had just walked off a firefigher role on a movie set.
I’m not going to lie. I wish I had gotten a picture of the firemen. They looked like they had just walked off a firefigher role on a movie set.

The firefighters jumped out, prepared with axes and dressed in their gear, eager, almost as if they had been very bored, to fight a fire with no flames. My hands shook as I pulled out the phone answer Lance’s call- his airplane was taxiing the Reagan International Airport runway in D.C.-to tell him that the firefighters were there, and begging him to call the school again because I was so worried about the kids.  He couldn’t, the airline was breaking rules as it was and he had to get off the phone.  “My son, my son is autistic and is going to be worried and I need to get him at the school.” The firefighter’s eyes widened as he looked at me holding my beautiful daughter with Down syndrome, her head nuzzled into my neck, putting together what I was saying. “Just one son? Which school?” “No, I have three boys at that school. They’re fine. They’re with their teachers, but I need to get them.” I’m not sure if my anxiety to get there was more for me than it was for them. I wanted my boys. I wanted to tell them it was fine if for no other reason than to hear the words myself.

A minute later a paramedic came  and said that he’d drive me in the ambulance to pick up my kids. I almost laughed. There was no way I was getting in an ambulance I didn’t have to, and there was absolutely no way I was picking up my boys, my anxious Peyton and my autistic Casey, in an ambulance. I explained that the school was close and there was a cut through just one street over. The paramedic decided to escort me there and back to get the kids. He was nice, and for once, I didn’t feel the usual anxiety I get over spending time with people I had just met.

The boys were waiting in the resource room. Casey, who I imagined pacing the room biting his fingernails, barely registered my presence as he played on an ipad.  I introduced the paramedic and told them that even though everything was okay, we were going home and there were going to be firetrucks. My anxiety was lost on them. “Cool!” Peyton said as he hopped out of his chair.  Mrs. Duncan, Casey’s superhero of a special education teacher, walked with us.

Once home, I handed over Abby and met the head fireman in my yard. They had found the source- our furnace. It turns out, it hasn’t been serviced in years, maybe, and was clogged with dust. The reason I couldn’t find the source of the smoke was because it was was coming out of all the vents. The firemen let me inside to find the name and phone number of the property management company. Once I had got it, the head guy made the call for me. The company scrambled in a way I have never seen a business before. I think I’ll have him do all my calling for me.

The furnace had to be shut off, and I could already feel the chill of these past couple of days seeping into the house. The guys told me that it probably wasn’t a good idea to stay in the house until the smoke cleared, but by that time, if the furnace hadn’t been fixed, it would be too cold. I gathered up Abby’s inhalers, the Ipad, some snacks. They told me they’d keep in touch to make sure the property management company complied and gave me their numbers if they hadn’t.

I walked to the ambulance where the firemen told me they were keeping my kids warm. I pulled the back door open and my breath caught as I saw Abby sitting on the stretcher in front of me. She was fine. They all were. Mrs. Duncan had kept them calm and entertained while I was inside. She. Is. A. Saint.

My kids and I spent the rest of the evening looking for things to do. First, to fill the car up with gas, next to meet the furnace guy back at the house, to the overcrowded and much, much much hated McDonalds , then onto the YMCA where in an hour or so Carter had basketball practice. I  had forgotten Casey’s goggles in my rush back in when I had met the furnace guy, and upon his hearing this, any sort of resolve he had crumbled. He had been so good, that I didn’t even mind his breaking. He climbed to the top of the two-story play place and laid right in front of the slide, letting kids scramble right over him to go down. When they were at the bottom, I heard them calling him the “Zombie Boy” and for once, it didn’t bother me. It didn’t bother him, either. I think we both felt more undead then truly alive. He emerged for a minute to grab the Ipad then slunk back up to his perch. Minutes later, a sweet boy from Peyton’s class showed up and asked where the boys were. Peyton was swimming, Carter at practice, and Casey, at the top of the playground. The boy climbed to the top where he spent the next half hour sitting with Casey. The boy is my hero.

Abby, who’s shoes I had left at home and who was still too wheezy to go into the kids care, and I played basketball, sung songs and danced in the space below Casey’s tower. My shoulders eased as I giggled with my beautiful girl. Casey crept down and joined us and as we played mini-basketball.  He giggled as he joined in with two other boys throwing the balls so hard against the little hoops that they knocked them over. Once, the ball bounced back and caught  Casey right in the jewels. It was a half-deflated ball, and the image of it was funnier than the feeling. He fell back on the floor and laughed until his voice broke into a cackle. I laughed too, and then I realized how grateful I was that in the end, the day had brought me there. Don’t get me wrong, heads are going to roll in the rental office tomorrow, but for that moment, I didn’t feel like it had been the worst day ever.

I’m just kidding. Today sucked.  The kids are still getting up, creeping down the stairs and worriedly asking me if the house is going to burn down.

This is a long post and I commend any of you who made it through the whole thing. I probably would have skimmed it at best. Really, I wrote it for me as a way to process the trauma of a pretty untraumatic event. If sirens didn’t take me back to a place of wretched fear, it wouldn’t have been much more than it was.  Also as a ploy for Lance- who is always out of town for the fun- to buy me a cat.

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Gather ’round, kids. Mom is mentally ill.

That title seems trite. I mean, it’s true. But it should say, “Gather around my wonderful children, we have some news for you. Your mother, whom we just adore, is mentally ill.”

Yeah, that doesn’t sound much better, does it?

I went to the doctor the beginning of December and talked to her about my medication. My friend Bec has told me for ages that I have bipolar disorder. I laughed at her, “I’m not mentally ill. I’m just insane some days. Jeez.” (And then for emphasis, I laughed and laughed) Because in my head, there is a dividing line between having depression and having bipolar. The line? Mental illness. I had depression. I was open about it. But I fought the bipolar because I didn’t think I had mania. I didn’t compulsively shop, I didn’t have periods where I was excessively social, I wasn’t flamboyant, I’m barely buoyant at all. I also didn’t want to think I had crossed that line into mental illness, when I knew that my depression on its own qualified. But after getting back on depression meds, I had a couple of fantastic weeks where I cleaned all of the things, did all of the things, was all of the things! … until, well, I wasn’t. I crashed and I crashed hard.  In speaking to my Aussie love, she gently reminded me of what we’d both known for a while…

I’m bipolar.

I have bipolar 2. It’s funny, the doctor after administering the test, said, “You are just below the threshold for bipolar 2, so we’ll just call it that. You’re more cyclothymic, but the meds are the same either way. You’re not close to being bipolar 1. If you were, I’d expect to see you wearing strange clothing and things.” My jacket had been zipped up over my favorite shirt, it has a picture of a cat head on a t-rex body. A catosaurus rex.  Seen here (I’m the unicorn. You can see Alcatraz in the back)

catasaurus shirt, unicorn, clown, alcatraz
You can kind of see the shirt. This picture doesn’t do much to offset the crazy part of the diagnosis.

I walked out of that appointment strangely shocked. I mean, I knew this, but actually hearing it kind of messed with me a little. There wasn’t much time to process it, because in an insane act to one up me, my sister went ahead and got diagnosed with kidney cancer the next day.

I kid because I have very limited ability to deal with the fact that we now have had three members of my immediate family be diagnosed with three different kinds of cancer. Both of my sisters and my father.  My sister had cancer. She had it in December and now she doesn’t have it anymore. She had a really awful surgery to remove the cancer from her kidney. But it’s gone now and we are all very, very glad.  She’s pretty dang tough and I’m so glad it wasn’t worse than it is, but still pretty rotten.

I digress. But now everything I write seems pretty petty in comparison. That kind of sucks, no?

Back to my crazy. I got on a new medication. A real life anti-psychotic, friends, and I feel great! Here’s the thing- like with Casey’s diagnosis- it doesn’t change me. I was bipolar before and knowing it now only gives me a map to being well. To not deal with the ups and downs of all of it. I’m not embarrassed to tell you my diagnosis anymore than I would be embarrassed to tell you I had cancer (or will be, when it’s my turn, I guess).  Because my fault in it is about the same. I didn’t do this to myself through bad choices and a lack of platitudes and cat posters (I do have cat pants, they’re amazing.). This is the way my body was made. It’s an imbalance that is responding readily to the medications I’m throwing at it, the therapy and all in all the choices I’m making.

I choose sanity.

And I hope you do, too. I hope that outing myself will help others to see that seeking treatment is not wrong. That mental illness is not someone’s fault. That there is hope for better days. Because there is.

And now, and inspirational poster:

I hate being bipolar it's awesome

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My letter to Kelli Stapleton, my friend.

Dear Kelli,

I miss you. I miss seeing you pop up in my Facebook feed. I miss how much you love my Abby, I miss your encouragement in my writing, but most of all, I miss seeing you. I miss that smile as bright as your long blond hair. I miss your hope and enthusiasm for life. I miss your strength. I miss seeing how hard you fought and how much you cared. I miss you.

Kelli Stapleton

You. The real you. The you I knew before that September day, and, the you I know exists beyond that day. I don’t know what caused you get to that point, but, I’m so sorry. I’m so so sorry that I didn’t know things had gotten so rough. I’m so sorry that I hadn’t checked in and had lost myself in my own cares and my own world. I’m sorry that so many people forced you into a place where silence was better than speaking your truth. Where the hurtful words lobbed at you as you sought care for your daughter were not met with more push back for me. I’m sorry I didn’t fight for you like you fought for Issy, even in the face of so many people being so unbelievably hurtful.

When the news came to me- it was an article gently sent by a caring friend- my first thought as I read the headline that a mom had tried to kill herself and her autistic daughter I saw the picture of you and Issy and thought, “Well, this news agency has the wrong picture here. There’s no way…” The room got really loud in its silence. I crumbled to the floor and put my hands over my ears and screamed, “GOD!” It was a prayer and a threat and swear word all in one. “No, no no no no no!” I wailed at the walls that seemed as if they were closing in on me. I felt Lance’s arms wrap around me as he lifted and carried me to my bed. I screamed and screamed. “If she can fall, what hope is there for the rest of us? If she could break who is safe? We’re not safe. No one is safe!”  I tell you this, not because I want to inflict any more pain than you are already dealing with, but because that moment was transformative for me.   In those awful hours as I tried to make sense of nonsense, I realized one tiny thing that has changed me in huge ways. You fought so hard for your daughter that there was seemingly little time or energy left to fight for yourself and your own needs.

I cannot condone what happened and there is nothing that will ever make it okay. I do not understand what happened at all. I was not there. I was not in your brain nor could I feel what you were feeling. Too many people think they can. They are wrong. But I want you to know that even in this awful tragedy, there has been some good. Kelli, last week I almost broke.  I lower than I have ever been.  The constant toll life takes wore through me.  I remembered the promise I made in the wake of September 3.  That I would take care of myself first so I can be able to take care of my children. I promised that I would ask for help and be completely honest no matter how much it hurt.  I promised that I would drop everything else the minute I felt myself tiring out. Again I found myself in the arms of my husband sobbing until I could hardly breathe.  I told him I needed help and that I needed him to stay with me until I felt better. I got help and he was with me until then.

I’ve thought about you a lot since then. I’ve wondered what would have happened if I weren’t so constantly vigilant of myself and of those around me. I wondered what would have happened if I hadn’t promised myself and my husband that cold September day that I would not allow anyone to silence me.  I’m sorry that this had to happen to wake me up to the reality that parenting a special needs child is harder than any of us say out loud.  In writing about the reality since then, many have criticized me for being not as cheery as I used to be. That’s just not true. I’m just more honest. In that, others have found a voice in their own pain. So many people have told me that they’ve needed a safe place to say that it is hard and to reach out for help. People have sought help.

There are so many people who love and care for you. I can’t say that my feelings haven’t been terribly conflicted during these last months. I went from being lost in your pain to being angry at you to being at something that resembles some peace. I still ache for you and so much for your family. As I’ve come to realize that empathy doesn’t mean I condone what you did, I see that in the search for answers, I found some in myself.  I need to fight for my kids, but I need to fight for myself, too. I need to fight for parents who are told that they are wrong in their pain. Who are sold the lie that if they say it’s hard, they are saying that they don’t love their child for who they are.  I speak for myself and I speak for those parents who long to come to terms with a beautiful life that just isn’t as they had planned.

And I will speak for you, too. I will speak to the reality of how taxing it is to be a parent of special needs to anyone within the court system who will hear me. I want them to know that if it could break you, a giant among us, that it could break anyone. That the only way we are safe is if we are free to speak our truth to people willing to listen and to empathize.  We need support, we need understanding, and we need relief. I will work to find that for myself and others, and I will remember you as I do. I will remember your fighting spirit. I will remember how much you love Issy and how hard you fought for her.  I will fight.

I will love you until forever, nothing changes that.

Lexi

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I hope you’re wrong.

I was scrolling through my brain of what has brought me to where I am in my life now. I tried to find a way to string together the commonality between the biggest bouts of growth I’ve had as person.  I find myself today a different person than I was just a couple of years ago. There have been great changes that were of my causing and some were of not. The biggest change in me came from one thing:

Being wrong.

No one likes the feeling of being wrong, but I doubt there’s something that has such a power for change if we but embrace our wrongness. Just sit there for a while, being wrong.  Being right rarely challenges our worldview, it rarely requires us to think outside the box- or the compartments- we’ve built for ourselves. While there are many experiences that challenge us to grow and to be more, there are few things that require introspection like finding out we were wrong about something we were sure- we KNEW- we were right about.

After Casey was diagnosed with autism, I wanted answers. I wanted to know why he regressed, why he lost his words, imitation and love of all foods. I searched and found and answer that felt right: the vaccines. His regression was RIGHT after he was vaccinated, right? I mean, it was around that time. But it had to have caused it. Right? I stopped vaccinating him and delayed vaccinating Peyton until I was sure he didn’t show some of the early pre-regression signs Casey had.  Even then, against the science-based arguments of a doctor I now have a lot more respect for-I delayed his vaccines as long as I could stomach. I did not want to be wrong. I didn’t want to give Peyton autism, too.  I was wrong. But not about Peyton’s autism.  I was wrong about vaccines.

I had done what so many had done before me. I had wanted answers where there were none. When I came  across data that proved otherwise, I found myself doing what is well documented in controlled psychological experiments: I dug in. My belief only got stronger in the face of conflicting data. I built up walls inside my brain to continue to be right about something because ANY answer was better than none. It gave me control in an area I felt completely powerless. Eventually, I embraced my wrongness. I dragged all of my kids down to the doctor and go them all caught up on their vaccines and have vaccinated them on schedule ever since (minus the times the doctor’s couldn’t allow Abby to be vaccinated because of her health issues).

Since realizing I was wrong I’ve felt a need to steer people away from the very real dangers of not vaccinating their kids. I’ve fought hard against the prophetess of the movement- Jenny McCarthy. I seek to prove her in her wrongness so that other people aren’t led down that path.  Being SO wrong about something like this changed how I felt about vaccines, but not how I felt about being right. It didn’t shake me of my belief that my gut, my feelings about The Unanswerable Questions. I went on being right. I went on not challenging my preconceived notions about family, faith and who I am and what my place on this earth was to be. Until I was wrong again.

Into my adult life I believed that being gay was a choice. I remember when I read the science behind orientation and my beliefs were challenged. People are born gay. Instead of rethinking the whole issue, I went with what I was told: Sure, sure, they can be born gay, but they don’t have to be gay. They can be celibate.  They don’t need LOVE, companionship or even to be recognized as equal to heterosexuals. They still had a choice.  Ugh. It wasn’t until I had children who were born different that I saw the parallels. Though there is no disability in being gay beyond what society has imposed on it, my rightness was challenged in fighting for equal rights for my children. For fighting for inclusion.  I didn’t want people to leave my kids out because of the way they were born.  In that moment I knew I had a choice: Be a hypocrite, or be wrong.

I chose to speak out for equal rights. In so doing, my rightness was again challenged in regards to my faith. My testimony was challenged not by people outside the faith- but from people on the inside.  I was told that it was 100% true or 100% false. There was no grey area.  So I studied. I spent a year studying it all. I came out on the other side ripped from the whole framework of which I had built my life.  I had been wrong. It wasn’t what I had thought it to be. There is no pain-none- like that feeling. It was a death, a defeat, a divorce all wrapped in one.  Being wrong about something that so many times I had stood before a congregation and said that I knew, not even that I believed, but that I knew, felt like it split atoms within my soul. I broke into a million pieces and have put myself back together completely rearranged.

The pain of being wrong about this thing, and the ongoing pain of other’s believing that I am now wrong, has it’s fingers in every area of my life. But it’s opened me up to something remarkable:  though wrong hurts,  it opens our brains up to endless possibilities. It forces us out of the boxes we create for ourselves and allows us to become whatever we want to be. It gives us compassion and empathy but mostly, it gives us a reason to listen to the other side of the debate. Being wrong before has opened me up to the possibility that I am now wrong and will be wrong in the future.  Being wrong has freed me.  I see the universe in a brand new light. I see science as art and the Unknown Answers as having endless possibilities. My brain is free to roam into any idea, and then it is challenged to decide if it is right or if it is wrong.  I’m cautiously optimistic about being wrong in the future.

Many of you now are feeling that I am wrong in the views I have said. That’s fine.  I could be.

My hope for you this new year is that you will find yourself in your wrongness. That you will be challenged and that you will grow. That you will be set free.

I am free.

Graphic1

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The autism is hard.

The autism is hard.

His words. Not mine.

There, laying at the foot of the stairs, his head on his arm, his legs squirming as if trying to pull free from his body he again moaned, “The autism. The autism is hard. Why am I so much afraid all of the time?”

I have always been careful about what I say about autism when Casey is around. I knew he’d internalize they way we spoke of it, and I never wanted him to feel like his autism made him any less than his siblings or friends.  I wanted him to be proud of what it gives him, but, somewhere along the lines, I stopped the dialog with him about the hard parts. I stopped letting him feel how he needed to feel. I kept willing rose colored glasses on my beautiful boy who sometimes needs to see in black and white. And he needed me to see his world there with him.

I knelt beside him and watched as silent tears crawled down his face. “I know it’s hard. I’m so sorry, Casey. I’m so sorry it’s hard today.”  I scooped  him up the best I could and brought him over to the couch. He was not content to sit by me, but rather, crawl onto my lap.

autism is hard

 

It’s been a rough time for Casey. We can’t quite put our finger on why. The weather change? Hormones? Me? Is it me? I’m so worried that he’s picking up on my own moods, my own stress, my own sadness. Waves of guilt rush through me and seep into my tired bones. Even when I try my best, I can’t help but blame myself.  Casey doesn’t blame me though, not yet. I look at some of the adults with autism I know that hate their parents. That hate all parents. Will he become like them? Will he hate me one day for messing up time and time again even though I was desperately trying to  help him?

We decided to try to adjust the world to Casey. To find safe places for him to just be him. We started out simply- a “sensory-friendly movie” at our local theater. They turn down the sound and keep the house lights on. When we got there, I delighted in having Casey in a place where people weren’t going to look at him funny for his autistic behaviors. An environment set up for him to be himself, and to enjoy something ‘normal’ like going to a movie.  He was VERY excited. Check out his rocking:

And I sat back and enjoyed it, too. He could rock the hell away and it didn’t matter. The people who surrounded us were there for the same reason. We had won this round with autism, I felt. We had set ourselves up for a win.

Autism is an elusive beast. Just when I think I have a hold of Casey’s autism, I’m grasping at air as it has once again changed shape. It can be large and loud and terrifying. It can be repetitive and obsessive and completely, soul-draining obnoxious. It can be beautiful and responsive and a borderline super-power.  It can be crushingly sad. The danger lies in never knowing which form it’s going to show up in, how long it’s going to take hold, and how tightly it will affix itself around Casey.

I was prepared for autism at that sensory-friendly movie. We had all of the provisions. And then, again, autism showed us it could outmaneuver us, even as seasoned experts.  Fear made it impossible for Casey to stay in the theater. Not knowing what was going to happen next. Sadness blanketed us both as we sat under that exit sign, defeated by this strange beast we have worked so hard to try to love.

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To discount the realities of any disability is to rob it of its beautiful complexity; it lessens the triumphs and it denies all involved of the authenticity found in expressing every emotion.  It’s the lesson I’m terrible at learning- to let Casey lead. If he wants to be pissed at the shitty hand he’s been dealt, well, I’ll be pissed with him. If he wants to rock with joy, I’ll rock with him. If he wants to cry, I’ll share in those tears.

Because the autism is hard.