I’m deviating from my usual topic of mental illness today. I’ve done it before, I’ll do it again. Today I’m going to talk about autism and extending mercy.
Awhile back I saw a Facebook vent from a person annoyed about parents not keeping their kids away or from touching other people when in line at an amusement park. My heart hurt as I read this post—because my kid has been one of those kids this person was so annoyed at and venting about.
Yeah, I’ve gotten those looks before—at the grocery store, restaurants, a waterpark, and amusement park, as my son gets too close to or touches the person or people in front of him. The look that shows their annoyance. The look that shows what an ill-behaved kid they think my son is. The look that shows what a bad mom they’re judging me to be by not teaching my kid better.
What these people don’t know is that my kid has a sensory seeking form of autism. His natural instinct is to be close—very physically close—to whoever is by him. As hard as I have tried to teach him about personal space, that people have “bubbles”, it just doesn’t click in his mind. His “normal” is touching people. He needs to touch people.
The people who give me those looks just see a bad kid and a bad mom. What they don’t see are the hours and hours of testing we went through to get a diagnosis. What they don’t see is the heartache of being told that my son, who I love more than the world itself, has Autism Spectrum Disorder. They don’t see all the tears that have been shed thinking of what this means. They don’t see the agony of trying to help, trying to teach, him to go against his instinct because of all the people who will judge and not understand. What they don’t see is all the time, energy, love, frustration, determination, hope, hopelessness, difficulty, uncertainty, failure and success my son and I have been through with ASD. They just see a bad kid and a bad mom. But you don’t have to.
The next time you get annoyed or are about to pass judgement, extend mercy, instead. Realize that you probably don’t know the whole story—the way I don’t know your whole story. I get that it can be annoying to have some strange kid standing so close to you that he touches you. But before giving that look, please, please extend mercy—the way you would hope to have it extended to you.
I have been lacking motivation. Recently. For a long time. In just about every aspect of my life. I always think about writing, but don’t do it. Now I have a little time, and guess I mustered a little motivation.
My kids started school last week. I have to admit, it was really hard seeing all these people posting their first-day-of-school photos on Facebook. I was never one to take it very seriously. Usually I’d remember last minute and snap a quick photo before walking to the school with them. But I’d still take one—just to have, for remembrance sake. But I didn’t get to take a picture or drop them off because I had to be at work. I didn’t even get to see my seven-year-old before I had leave for work. It was just another reminder that my life isn’t where I ever thought or wanted it to be. I don’t want to miss out on saying goodbye to my seventh grader her first day of Jr. High. I don’t want to miss out on dropping my son off and taking his picture as he starts second grade. I envy those moms who get to do that.
It’s also been hard seeing so many people posting about vacations to Europe when I can’t even afford to take my kids to Moab for two days over Fall Break. Then, I think about my friend who recently spent two weeks in Africa. She met people who had nothing, yet they were happy and grateful, and I think to myself, “That’s who I should be comparing myself to. I may not live in a big, fancy house or have the money to spend weeks in Europe with my family, but at least I have a house, I live in a good place, my kids and I are healthy, I have a job, even if it means I don’t get to take picture of my kids on their first day back to school. I should be nothing but grateful and happy.” Then those thoughts get me feeling like I’m the worst person in the world—for comparing myself to my neighbors instead of people who have nothing. I should be grateful. I should be happy. I shouldn’t be down or envious. And the thoughts circle. And sometimes it’s so hard to get out of. How do you stop the negative thought process?
To build a brick wall, a foundation is needed. The foundation laid out, the wall built brick by brick. Emotional walls are similar. Mine was founded and built because of her.
“Can I help you with the dishes?” my best friend asks. ‘Do I have to do the dishes now?’ I complain. “Why can’t you be more like Safaa?”
Clink — The first brick
Violin at school, I can’t practice. “This is why no one in our house has musical talent”
Clink — Another brick
‘My photography teacher wants two of my pieces in the art show!’ Proud of myself, a rarity. Maybe I’m good at photography? The monotonous response: “How many does everyone else get?” ‘Two’
Clink Clink — A few bricks
Hiding in my room. Facing away from the door. Hide my shame. Blood trickles from self-inflicted wounds. She barges in. Seeing and crying. Apologizing. Promises to treat me better flow. She doesn’t.
Clink Clink — Two bricks
Heavy dresser blocks the door. Fingers against scalp, pulling at roots. Pain a distraction. She forces her way in, ignores my state. “Spoiled. Bad example. Problem child. Bully. Weak.”
Clink — Another brick
I buy my own kitten – Damian. My pride and joy, my child and my pet. Tiny body curled next to me, all warmth and purr. ‘I’ll come by and take care of him’ Banned from going. “He keeps peeing in my plants.” Kitten sold, no goodbye, no explanation.
Clink Clink — Multiple bricks
I try to leave the heartless manipulation of a mother. Silent screams, anguished mind. Tears mix with rain. Legs move involuntarily without drive, without destination. Obedient and mindless like she wants me to be. Sobs cut through the night. Fickle love I wished was true crumbles.
Clink Clink Clink — Many bricks
‘Why can’t we hang out with Tacy on Sunday?’ “Check email.” Demeaning intro. Father is the victim. She is the bully. I’m siding with him? “Good for you, Kelsey”. People should earn what they want? “Don’t care or hate your own mother, I still love you and hope that you choose the right things.”
Clink Clink Clink Clink — Countless bricks
She lets a lie slide. I pry for truth. A text to dad follows confession. She finds out. “Let me decide to communicate when can get to it, at your dad house I never hear anything, at my house your dad know everything.” ‘You do ask. You never answer emails’ “Things are between Mark and I, you need to stay out of it, understand?”
Clink — Another brick
Stressed and depressed. She notices that I am not myself and asks. Her fault. Tell her? I’m afraid of how she’ll react. Will she scream insults? Deny? Or will she listen and understand? Scream or deny, she will be angry. Listen, she won’t change. I tell her. She listens, promises to not do it anymore. She does.
Clink — Another brick
I root out another lie. She turns on me. A blizzard of accusatory words. Every possible flaw exploited. I can’t do this anymore. Unbuckled seat belt. Car door opens. She stops. Door alarm goes off. Sitting in stunned silence. Adrenaline of near death surges. We stop. My chance for peace gone.
Clink Clink Clink — Thousands of bricks
It scared her that I tried to jump? You care about me? Hope inflates like a balloon. Pop! Needle of insults deflates my balloon. “Spoiled. Bad example. Siblings will treat people horribly. Respect me. ‘A normal family listens’ I don’t have to listen. I’m the mother, you’re the child.”
Clink Clink Clink Clink — An endless waterfall
‘Clean up your mess, Khai’ He angers, mumbling. Throws a napkin. She chastises me for ‘provoking’ him. ‘He hits or throws something at me every day’ “Is it true?” A quiet yes. He asks if he can go to a friend’s house. Why would she let you? “Just clean your room first.” I can’t say anything. She’s the mother and I am not the favorite.
Clink Clink Clink — More bricks
For almost 18 years, I accepted the things she told me. Now, I am unable to feel emotion like a normal person. Extremely low self-esteem. Uncomfortable with affection. I worry about my future family. Who would want to marry me? Will I be like my mom? Will I have kids who trust me like a best friend? Will I be unconsciously abusive? For almost 18 years, I grew up with a mostly absent father who wasn’t there enough to give me the comfort that I needed. To give me the affection that every child needs. “I love you” my friends tell me. Well that makes one of us. My sister hugs me, I tickle her to get out. My friends hold my hand, I slip it out. “I really care for you” my friends tell me. Can’t say I feel the same.
For almost 18 years, I went through her abuse, the divorce, and my mental health issues without comfort. Without a hand to hold when I was afraid. Without a soothing voice to tell me that I am worth something. Without arms that wrap me in a warm hug while I shake with sobs that never come. Without someone to lower the gun that I’ve raised to my temple on multiple occasions.
But now, my brick wall has been built. It has curled around me and swaddled me like a newborn baby on cold nights. It has protected me from her, it has protected me from the storms that rage. My brick wall is the comfort I have lacked all of my life.
night I went to bed depressed and in tears. We’re working on
getting my son an official diagnosis of Autism Spectrum Disorder.
He’s been through a bunch of testing, my ex and I filled out a
questionnaire together and yesterday the Occupational Therapist sent
an email with a summary of everything so far. It was a lot to take
in. I felt so overwhelmed. And so inadequate.
I lay there in bed I was hit with this realization. It’s so
obvious, but thus far I haven’t been thinking much about the
future, just about now. The realization was that my son will always
be autistic. It’s not something that can be taken away. It’s not
something that can be changed. With that thought came all these
questions about how it’s going to affect his life, not just now,
but years and years into the future. And of course, it made me wonder
how, or if, I’ll be able to help him.
my ex and I are pretty good co-parents. At least I think we are. But
I still feel so overwhelmed, so inadequate and alone to be doing this
as a single mom. As a single mom who deals with anxiety and
depression daily. I don’t mean to complain. I am grateful for my
blessings—they are many. I’m just scared. For my son, and for me.
One thing I always hoped was that if/when I had kids they would never have to suffer from mental illness the way I did/have. So when my daughter started exhibiting signs of anxiety when she was only eight my heart hurt so much. I knew what was possibly in store for her. People said she was lucky because she had me, and I could help, but I don’t know what it’s like to have anxiety as an eight-year-old. I don’t know what it’s like to help an eight-year-old who has anxiety. Luckily, it hasn’t been too debilitating for her. She has a lot of fear and I’ve seen her have full-blown panic attacks, but it doesn’t interfere with her every-day life as much as it could. At least not that I’ve seen. Of course, who knows what will happen in the future?
As a parent it’s always hard—probably the hardest thing in the world—to watch your child struggle. Almost a year ago, after a bunch of testing, I was told that my son (six at the time, now seven) was borderline on the autism spectrum. I had wondered, but there were certain traits he had that seemed to conflict with autism, so I simply hoped for the best. However, there are a lot of stereotypes out there about Autism Spectrum Disorder, just like there are about mental illness, and I’ve since learned that those traits of his do fall within the envelope of ASD. My son is incredibly smart, so I don’t worry about him academically, but socially he has so many problems. Whenever I ask him about who he plays with at recess he usually tells me that he plays alone. He doesn’t seem to notice or care—he’s used to going into his own world. But it breaks my heart. I’m sure kids look at him and see that he’s not “normal.” They make assumptions, not really knowing or understanding why he is the way he is. They make assumptions about who is and what he’ll do, not knowing that he really isn’t that way. Truth be told, he’s smart, energetic (maybe a little too much!) and so extremely loving. The other night, he slipped this note he wrote me under my bathroom door as I was getting ready for bed.
I know some people don’t want to bring children into this crazy world of ours, but children are amazing and strong and resilient. And my children are the greatest blessing God has ever bestowed on me. All I can do is pray that I’ll be able to help them and love them in the way they need. All I can do is hope that they learn and grow and become more from their struggles the way I have with mine.
This is going to be a selfish post. A rant. Because I have to get it out or I might explode.
Every year I tell myself I’m going to help my daughter make a creative Valentine’s Day box for school. And every year I put it off and put it off until it’s too late and end up buying some generic one from Target. It’s her last year in elementary so I actually got with the picture this year. I hadn’t heard anything about Valentine’s parties yet, but every year my daughter has been in elementary she’s made her own box and had a party so I assumed it would be that way again for her and my son who is in first grade. I thought about what they liked then looked up ideas. My daughter loves dragons and my son is really into Sonic. So I found pictures online of Valentine’s boxes of Toothless and Sonic then asked my artistic ex-husband if he’d be willing to make them with the kids if I provided the supplies. He said yes, so over the weekend he made them with the kids.
So cute, right? And I was so proud of myself for actually doing it this time and in such a timely manner!
So yesterday, when I picked my kids up from school, my seven-year-old was in tears as he told me he’s not allowed to bring his box to school, that his teacher said if anyone brings a box they will have to keep it in their backpack because they are decorating sacks—sacks!—at school. I understand doing this for preschool, but everyone knows that once you get into elementary school you decorate your own box to bring to school—at least around here! I told my son I would email his teacher to see if there was any way he could bring it.
I sent the email this morning telling her how every year my daughter had been at that school (since kindergarten) she had brought her own decorated Valentine’s box to school, how my son had made the box with his dad, how excited he was about it, how disappointed he was when he found out he couldn’t bring it, then asked if he actually could bring it. The response I got back was that as a first grade (meaning the teachers) they decided on bags so it wouldn’t become a competition with the boxes. Cry me a freaking river! What first-grader even thinks of making it a competition?! I bet you all the money in the world that the majority of kids that age are only thinking of the excitement of dropping Valentine’s and goodies into their classmate’s boxes and then thinking of all the yummy treats they’ll be getting!
The whole situation frustrates me not just because my son is sad and disappointed that he can’t bring the special box he made (he’ll get over it, and hopefully it will teach him some resilience, which I’m all about) but because it’s the whole mindset of the world these days that everyone has to be the same or “equal.” What frustrates me beyond that is the hypocrisy of it at my kid’s school. It is an immersion school. The whole concept of immersion schools is inequality and the “uneven playing field” because not everyone who wants their kid in an immersion class gets it. Priority is given to those who already have kids in it and then it’s just luck of the draw—and if you’re unlucky, too bad! And students who aren’t in immersion aren’t given any other opportunity to “level the playing field.” It drives me crazy that they preach one thing, but don’t follow it.
Now, if it’s actually a matter of low income, that I understand. As someone who has lived at times wondering if I was going to have enough money to buy groceries that week and was only able to afford that generic box for my daughter because of the generosity of kind people who randomly brought us dinner one night or left a box of groceries on our doorstep, I get it! If that’s the case, why not send an email out to parents asking if they’d be willing to donate materials that those kids can take home? I’d be the first to jump in line to help with that!
It’s also ironic that in a couple of weeks the school is having a “kindness” week. Well, give people the opportunity to be kind! Let the students prove that they are kind rather than assuming they’re all going to be mean and make fun of each other’s Valentine’s boxes. I even asked my sixth grader if anyone ever made fun of her boxes and she said no. I asked her if she ever heard anyone making fun of anyone else’s box. She said no, that she only ever heard people compliment and say how cool someone’s box was.
And yet, they’ll stick to their guns. They’ll force the kids to use as little brain power as possible and force them to all be like each other rather than allowing them to use their own creativity and be proud of something they have made.
Okay, there’s my rant. Maybe I’ll feel a tiny bit better now. Maybe.
A few days ago I was looking through an old journal and came across an entry from about a month after my daughter was born.
“Who I am lies dormant in words that are packed away beneath stacks of notebooks. I am forgotten, unknown poems, unable to bring them back to life inside of me. If anyone should ask where I am, this is where I’d tell them to look.”
I had forgotten just how much postpartum depression steals your identity from you. It is the truest form of real, actual identity theft. Some women get it back after a month, a few months, a year. I didn’t begin to start feeling like myself again for three years. And even then, there were parts of my self that never came back. I lost so much.
After reading this journal entry, remembering, pondering, I realized what a good place I’m in right now. I know who I am again. I have a sense of self, and I can be that self. And I like who I am. I feel strong, confident, independent, though able to admit when I need help and ask for it, and I’m happy. Life isn’t without its struggles, and sometimes I get down, feel disappointed, am sad. But I am still me, and that is one of the biggest reasons I’m able to get through those hard times without letting them consume me.
Walking through that door makes the blue a little lighter. She holds space as I gently spill. We sit, we talk - we water, dig and bury. Nurturing a shoot. Aiding it in light - to find its path through thorns - Malan Wilkinson