I am a married mother of four kids, three boys and a girl. My first three boys were born in less than three years. During that time my middle son was diagnosed with autism. Our youngest and only daughter came five years later and was diagnosed with Down syndrome at birth, and autism at 3. My youngest son was just recently diagnosed with asperger's. I am a writer, passionate cat enthusiast and a curator of fine snark.
I write about all of this and so much more (in quantity, probably not in quality) here at Lexistential (formerly Mostly True Stuff).
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.
I wanted to say publicly the things I’ve said to so many parents I’ve encountered along the way: It’s okay.
It’s okay to be upset when your child is diagnosed with autism. It’s okay for it to take a while for you to adjust your entire world to a new normal. It’s okay to be sad. To be frustrated. To scream into pillows and cry yourself to sleep at night. It’s okay. It doesn’t mean you love your child any less. It doesn’t mean you don’t want them if you don’t want their autism. What good parent wants their child to have a disability? What good parent doesn’t feel pain at the sight of their child struggling? Having a tough time with the diagnosis shows how much you love them. It’s not because you don’t accept them. Don’t ever, ever, let anyone tell you differently.
You will go through the motions. You will seek desperately for a cure. You will despair when you realize that there is no cure. You will get through that. You will move on to a place of understanding. It’s okay to get your child carefully chosen therapy and programs that will benefit them. It doesn’t mean you are trying to change who they are or stamp out their autism. It means that you want to give your child every opportunity to manage their disability and to thrive in this world. What parent, of neuro-typical children or other, doesn’t want their child to be given every chance to succeed? Does my getting Abby, my daughter with Down syndrome, therapy and extra help at school mean that I don’t accept her Down syndrome? No, it just means that I want her to be the best Abby she can be. It’s the same for my two children without disabilities. I want them to grow and learn to the best they can. Doesn’t mean I don’t accept that their best might not be the same as others.
Acceptance doesn’t mean you don’t have the right to be tired. To be frustrated. To be sad. Acceptance doesn’t come all at once and you will find it’s more of a tight rope than a way of life. It’s been 8 years since Casey was diagnosed. It took me years to get to a place where I was okay with him having autism. I still hurt when he hurts, it still kills me when he’s sad that people don’t invite him to parties or exclude him from games because he doesn’t understand social norms, or because he freaks out when things get to be too much. It doesn’t mean that I don’t ache to take the pain away he feels when his world isn’t the way he wants it to be. I am his mom first. Having empathy for my pain is not the same as sorrow or not accepting him for who he is. It means I love my child fiercely and I hate when he suffers because of his autism.
Autism is a disability. It’s not wrong to say that. It’s not ableist to want your child to be the best that they can be. It’s parenting.
Stay away from people who tell you that it’s not okay to feel anything you are feeling as you work to get through the day. It’s okay to not be okay all of the time. Some pain demands to be felt in order to deal with it and move on. It’s not wrong to seek help when you find that you cannot manage the pain on your own. Find friends that understand. Go to parent meetings in the school district or seek them out through your Early Intervention program. They’re out there. Above all, be honest. With yourself and with others around you. Accept help when people offer. Take any break you can get.
You will find in quiet moments the good in autism. Even if they are fleeting. Even if it’s harder than you had ever thought it would be. You will one day stop seeing the autism as separate from your child but a piece of what makes them who they are. You won’t even realize that it’s been happening for a while. And you will see that you wouldn’t change who they are for anything. You will find joy in their joy, whatever looks like. It doesn’t mean it will be easy. It means it’s okay.
There’s a sting I feel when that word is said. A jump in the blood in my veins. Because, for me, that word carries a weight. It reminds me of my children. It shows that even still, this world is not considerate of them, and what’s more, can be downright cruel.
The word used as slang bothers me. What’s worse for me though, is that it seems to not bother the people who use it. They throw it out in every day language as if it carried the same meaning as words like “goofball” and “sillypants.” It’s not the same.
This is why. These are my kids. The word ‘retard’ in all of it’s forms is built upon a framework of the ugliest parts of disability. It shows how, again and again, the disabled are the last to be treated like equals. Other derogatory terms are publicly decried from within the community that the word is offensive to and from without. Words like “faggot” and “nigger” are bleeped out on TV, as is completely necessary, but you’ll still see your favorite TV host using “retard” or “****tard” or something of the like without batting an eye. And sure, they’ll hear it from the disability community, maybe even issue a one line apology on twitter, but that’s all.
The word “retarded” needs to go away. But I’m not crazy enough to say that it will. Like any word, no matter how ugly, people are still going to use it. What I want, at least for now, is for people who use it to understand the weight that it carries. If you’re going to throw out that word in casual conversation, I want you and everyone around you to know that using it makes you look ugly, small, and completely socially unaware. Just the way anyone would if someone threw out any of the recognized socially disgusting words, a few I’ve mentioned above. I want gasps to echo the same way as if you had used the n-word or others of the like, in place of ‘retard.’ Because THAT is the same.
The word retard, as I’ve said a million times before, uses my children and all that they endure, as a vehicle for your petty insult. Because when you say that you’re acting retarded, you’re comparing yourself to my child. You’re saying that you’re stooping down to their level. You can say you never saw it that way, that it’s just a word, but if you’re reading this, now you can’t. You now know better, so you can do better. You can be better. And the next time someone around you says something of the same, you can stand and gape at them in shock that they’d stoop so low as to devalue the lives of people who a great deal of the time cannot defend themselves in order to get a laugh. And it can spread this way. You can help me by just understanding that this word carries weight, born by the people with the disabilities themselves, and to let your friends know that it’s not okay to use around you. It’s the simplest things that can create the biggest change.
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.
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.
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.
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.
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 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)
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.
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.
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.