The 3 Words I Wish I Said During My Son's Public Meltdown

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Weeks after my son’s epic meltdown in REI, I heard the words I should’ve said. I’ve been trying to use them more ever since.

When I look back on the meltdown — by far the worst, most public one he’s had — it seems like a movie.

He was about 10 and in a boot cast after badly spraining his ankle. We had to switch him to super-sturdy hiking boots so he could stop using the cast. We’d tried once before to buy them at REI, but something in the store set him off.

While many autistic people like my son experience sensory overloads in places like Target, my son is able to handle that store and even enjoy it, bright lights and all. But REI sets him off. I still don’t know why.

That day, with the help of his service dog, he’d made it through challenge of trying on boots and finding ones that fit. We’d navigated the gauntlet of busy shoppers, curious dog lovers and racks of stuff.

One thing stood between us and the freedom and fresh air outside: a long line.

He started getting agitated. I kept repeating, “PT Amy says we need to get these boots so we can take off your cast. Just a few more minutes.”

I honestly don’t know how long we were in line. It seemed like half an hour. Half a day, even. But my memory is skewed by the fervor of his meltdown.

Finally, he blew. Yelled. Kicked. Laid down on the floor. Threw his beads.

The way I remember it, the crowd in line collectively took 10 steps away from us and gasped. In my mind, there were about 50 people in line and hundreds of shoppers, who all froze at once on cue.

The guy in front of me with a complicated return kept staring at his phone, unwilling to give up his place in line.

I kept thinking, “Why don’t they help me? Can’t they see what’s happening? A boy in a cast. A service dog. It’s pretty obvious what’s happening here, people!” I felt so alone. And I felt we had to get those boots right then.

One mom did help. She retrieved the beads then went back to her kids. She gripped them tight, her expression clenched in fear and pity.

pair of shoes

Finally, they brought in another salesperson. We bought the (expletive deleted) boots. The meltdown was over.

A few weeks later, I described the incident and repeated my internal monologue to my therapist.

“You could have said, ‘I need help,’” she gently suggested.

Never has something so obvious but so elusive been revealed to me.

It honestly never occurred to me that I could ask for help for myself. I’d been so used to helping my son and being his advocate, his explainer and soother in chief, it just never occurred to me to say, “I need help.”

I learned a lot since that day, not the least of which is to respect my son’s sensory needs, to get help for myself because that means helping my son, and to stay out of REI.

My first inclination is still to soldier on my own, but I’ve learned to stop, breathe and ask for help.

Three simple words that can be so hard to say for those of us special needs parents caught in our own flight-or-fight moments.

Three simple words.

Sophy Chaffee and her son

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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10 Confessions of an Autism Sister

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I’m 25 years old, a law graduate and Cypriot-Sri Lankan. I grew up in Cyprus, but for the last eight years, I’ve been living in the U.K. I’m the daughter of strong, supportive parents and sister to the greatest guy, Christos.

Christos was diagnosed with autism when he was 2. It has been challenging at times, but it has also been my driving force. Watching Chris progress over the years has been my inspiration. Seeing him go from not being able to tell us he is thirsty, to now being able to tell us he is sad and why, has been a journey not many understand.

boy at disneyland

Autism made me protective of this community of families going through something similar. So I write to raise awareness. I want you to know, I want you to learn, I want you to tell people about autism. I need to know he’ll be cared for, he’ll be accepted, he’ll be given opportunities and the chance to grow, develop and be part of society.

From his rolling around on the floor screaming phase, to us having to watch “The Lion King” over and over again, to his violent phase, to the intelligent, caring boy he is now, I have been his sister. To say it has always been a pleasure would be a lie, but it has always been an adventure.

These are my confessions as an autism sister.

1. It felt like my childhood was more about him.

I couldn’t play with my little brother, can you imagine? My mom said I tried a lot, but I rarely ever got a response. We stopped going to restaurants and parties. My afternoons were about his speech exercises, his timetable, doing things that would be comfortable for him. All conversations were about autism. My childhood was about him, and now my life is about him.

2. I wear his clothes when I want to feel close to him.

Because I live abroad, I like having something of his. When he catches me wearing his clothes, he’ll point and make me apologize. Sometimes he even makes me take it off. He’ll point and show everyone the jumper I’m wearing is his; it’s Christos’ jumper. And then it’ll be over and he’ll go back to what he was doing and ignore me.

3. I stayed up most nights repeating his sounds with him until he went to sleep.

Repetition is big in our house. I don’t remember how old he was, but one night we were saying “Goodnight” and he starting making an “Ow” sound. We used to go to bed and “Ow”-ed for what seemed like the entire night until he went to sleep.

4. I loved dancing with him when we were younger.

We used to switch off all the lights, grab flashlights and dance to this song he loved over and over again in our pajamas. He won’t let me dance with him anymore; he’ll make me stop and sit down. I’ll usually dance anyway and get a few seconds with him before he gets annoyed.

brother and sister selfie

5. I pick fights with him over silly things.

When I was little, it used to be for interaction, but as he grew up, it kind of became our thing. I’ll start singing in the car (which he hates) and he’ll get annoyed; if I’m in a good mood, I’ll keep doing it. He’ll be upset with me if my tone changes, or if I yell, but then he’ll cuddle and laugh to make me smile. I pick fights with him because it’s something we can do together as siblings. We can’t talk about our days, we can’t go out to dinner, we can’t text or Skype or share funny stories about our family. No, I’m not abusing my autistic brother. I pick silly little fights with him because he’s my brother and that’s what you do to younger brothers.

6. He’s the reason I went to University.

There’s this weight on my shoulders and it will not lift until I know I can give him everything he wants. Christos doesn’t ask for much: he wants his music, his food and the pool. It doesn’t matter because if he wakes up one morning and asks for a hovercraft, I want to be able to give it to him. No one expects this from me, and no one has ever spoken to me about the day I will be his carer, but it’s something I have been preparing for since I was 17. That’s the end game, that’s the dream.

7. He makes me strong.

There’s this feeling that takes over when I think of my brother. Maybe it’s from reading, maybe it’s from witnessing how strong my parents are, maybe it’s from seeing how someone so small can be so fierce, how someone who cannot speak can progress right in front of my eyes. I’m not sure what it is, or where it comes from. He taught me that life isn’t about coping, it’s about taking every day and making it worthwhile. It’s about excellence, possibility and greatness. I had to learn from a very young age that nothing is impossible because every day of a life with autism can be about making the impossible possible.

8. I start my days away from him with my favorite photos of him.

He has this picture from when he was a few weeks old in which he is mid-cry and his face is hilarious. It’s on my bedside table, and it makes me smile every day. I have another one with his mouth full mid-eating a huge plate of pasta and another one mid-sneeze. I try to capture all his silly faces.

9. I wish people did this instead of stare.

I’d rather people just asked me about him rather than stare and sometimes grab their kids and run as if my Christos would hurt them. I’ve yelled at people before. Sometimes I just stare back and see how long they keep it up.

10. My biggest confession: I wouldn’t be half the person I am today if it weren’t for him.

He has given me so much. He has been the driving force behind everything I’ve done. Everything I want to do is because of him. He is the light that guides my life and without him, I would be lost. There is nothing I can’t face, there’s nothing I wouldn’t do for him. He made me better, he gave me purpose.

I wouldn’t change him for the world, but he gave me the strength and will to try and change the world for him.

brother and sister smiling

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Don't Forget About 'Our' Autism

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There’s a child at this event as cute as a Baby Gap model, with thick tufts of brown hair sticking out from under his baseball hat.

“I’m Charlie,” he says, sticking out his hand. “I’m 4.”

I smile at him, reaching out my hand to meet his. But before we can shake, he runs off to chase the other children.

“I’m sorry,” his mother says. “He has autism and gets easily distracted.”

She shrugs sort of helplessly, as if to say, “Hey, what can you do?” 

I nod my head. Autism. I do understand, I think about telling her then. Because, of course, at this event for children with autism, my child, too, has autism. It doesn’t take her long to realize this, because as we speak my son is making his way through the room, flapping his hands over his head and rocking his whole body in our direction. His mouth is bulging on one side, filled with some raisins he found in the car on the way over. He keeps them buried in his cheek like a chipmunk.

“Dominic!” I call out to him and he bobs his head, bouncing in my direction. “Dominic,” I say quietly, steering him toward the other mother. “Say hello.”

“Hello,” he says, his eyes unmoved.

“Tell her your name. What is your name?”

“Dominic,” he answers. This is a big chunk of his verbal ability, answering these questions. He is working hard. And because the light and the noise and the newness of this room are colliding in a wild cacophonous swirl in his frontal lobe, he wrenches his mouth up in distress. He cries a little, puts his hand over his ears. He will stand and wait; he knows what is expected of him. But it hurts him, the colors and noise of this place. He is deep within himself.

This is my son. He has autism, too.

author's son at a restaurant eating fries and macaroni She looks at us strangely, not unkindly. She isn’t sure what to do. In fact, everyone — all the other parents, the volunteers — they do not know what to do with my son with autism. He is the “strange” one here, even though in his small classroom at school he is at times the “highest functioning” one. Even this mother, who has also battled with the diagnosis process, with stigma, with “normal,” does not understand “our” autism. Because this is not the autism that is here, at this event for children with autism, nor most places these days. Here, the children speak in sentences and follow commands. Begrudgingly, yes. With difficulty, some. But none of them are on the island of disconnect.

“Our” autism is not the autism everyone knows.

My boy, with his “classic autism,” the kind that used to be the only face of autism half a century ago, is the one who does not belong now. We do not have a home in the “real” world, where children easily smile and make friends and answer questions. And we do not often have a home in the community of autism, where the children are almost always higher functioning. Where the children can speak or kiss or hug. Where the children are not quite “normal,” but not recognized as wholly “abnormal.”

Now, autism is the quirky kid in the classroom who interrupts a lesson with his incessant talk about world capitals. Autism is the girl who can’t understand the gum-snapping sarcasm of her peers. Autism is Rain Man, with his barely-but-functional speech and misunderstanding of nuances, his bright and amazing understanding of facts, dates and places.

Autism is them. We are all the same, and not the same. And they are no way less “disabled” because they are “higher functioning.”

But it is more than them.

It is the adults with severe disabilities who watch “Wheel of Fortune” religiously in their living rooms at night. The ones who have never had a job and who live with aging parents who wring their hands with worry, wondering, who will help him dress when I am dead and gone?

It is the 14-year-old boy, who in anger, fear and unspoken loneliness, wanders at night, slips out the door — his parents, sick and unsleeping, phoning police, searching for his shadow in their car headlights. Come home, come back to us. 

And it is my own boy, unable to answer basic questions. How was your day, Dominic? How old are you? Do you feel sick? My own boy who has the route to his school memorized, down to every stop light and lane change. My boy who can use his mind’s eye to photograph the make and model of the elevator at the museum from just one trip, just one floor, going down and then come home and type it into his iPad with perfect spelling. Schindler Elevator. Floor Eight. Seven. Six. Five.  

YouTube videos for days, I watch him watching on his iPad with pure excitement in his eyes, his arms flapping in anticipation of the doors on the elevator opening. He is joy right now. This is autism, too.

My own boy, who has never said “mom” with authenticity, who might not date girls or drive cars and who struggles with tying his shoes at 11 years old. His mother, who wrings her own hands in worry. Who will help him when I am dead and gone?

That is autism, too. 

We are autism, too.

Embrace awareness. Figure out the Why, the How and lead us back to the I Don’t Know. We are not sorry for ourselves, we accept what we can not change and work hard for what we can.

But please, do not forget us. The adults, the ones with severe disabilities. The non-quirky kids, the wholly impaired. Do not push us out or make us redundant.

Our face of autism might not seem as perfect to some. But we are community too, and we want to be there with you.

Maybe our voices aren’t as loud, because maybe we can’t speak at all. Maybe we are hard to see. Maybe we are not in the classroom, maybe we are in a different school altogether, maybe we are not on television. Maybe we are outside, flapping our arms like wings, looking up in the dark with seeing eyes, at the lights of planes in the nighttime sky.

But we are still here. We are autism, too.

Don’t forget to remember us.

son sitting in car with hand out the window

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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The Decision I Made to Help Stop My Son With Autism From Being Bullied

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I’ve always been open with friends and family about my son’s autism diagnosis. But surprisingly, I had yet to go public about his diagnosis at his grade school. All the teachers and staff knew, of course, but not the other students and parents.

He’s medically labeled as “high-functioning” and is fully integrated into a regular classroom. He does well academically with the right support. But most students and parents didn’t know he was on the autism spectrum. And I was flat out scared to tell them.

I wanted people to get to know my son for himself and not to be intimidated by a label attached to him. What if just knowing he has autism was enough to keep parents from inviting him to birthday parties or play dates because they were scared to host a child on the spectrum?

I wanted so desperately for them to give him the chance he deserves. My son is a voracious reader. He has an awesome vocabulary and can be a charming conversationalist when he’s comfortable and not distracted. He is happy and social when not battling his anxiety or sensory issues. He’s a wonderful big brother. He’s incredibly gentle with animals. Our family dog is devoted to him. He loves cars, drawing, science, superheroes, Star Wars, Legos, Minecraft and music. And he always dances like no one is watching. But would they see any of that if they knew he had autism?

But was I doing the right thing by not telling them? Even the kids who counted my son as a friend could tell he was different. I read a wonderful essay talking about this issue, and the mother and author said, “They could not be fooled. They could learn to accept, but they could not be fooled.” It struck a chord with me because I knew it was true. They knew he was different. They just didn’t know why. Some of the kids he came into contact with saw that difference as just weirdness and exploited it and bullied him. Quite badly. But on occasion, I witnessed some of those same “bullies” actually help another student whose disability is more visible. They accepted him because they could see it, whereas my son was an odd mystery to them.

So halfway through the year, I decided to take the mystery out of it. At his teacher’s invitation, I gave a little presentation on autism. I was shaking in my shoes, but I explained what autism is and what it can feel like for people who have it. I told the class why my son may look away when they’re talking to him. He’s still interested, but the many things going on around him are too distracting, too bright or too loud. I let them know that it helps to be patient. It helps to repeat what you’ve said. It helps to remember that people who are different can still be smart, talented, fun and funny. And most importantly, that people who are different often want the same things we all want: to learn, to have friends, to play, to feel safe and to be happy.

All of this was done with my son’s permission, of course, and he was, at times, an active participant in the conversation, interjecting little examples of things that bother him like bright sunlight, flushing toilets and hand dryers. His classmates were interested and involved and had so many questions and comments that I think he was actually felt a little proud by the end.

Did it help? I think it did in a lot of little ways. There haven’t been any more bullying incidents, and many of his classmates have tried to be helpful. It isn’t perfect. There are kids who still roll their eyes when he talks to them. There are always going to be people who avoid him rather than exercise patience or consider accommodations. But his classmates who have always been friendly to him remain so. They didn’t retreat or recoil. I bless those little heads and hearts every day.

Whatever the outcome, it’s done. The genie is out of the bottle now. More than 20 kids went home that night and told their parents about it. I know because their parents asked me questions in the months that followed. And I have answered them just as I did for their kids in class that day.

I’d worried about this for so long and ripping off the Band-Aid felt good. Liberating. But I didn’t do it for me. I did it for my son. I didn’t really trust all those people with the truth about him. I didn’t trust their preconceived notions, their misconceptions and their prejudices. But the truth is, I was denying them the chance to get to know the real him and to learn from him. The chance to change their minds about interacting with people on the spectrum and with people who are different. The chance to let in a little more light. And, in the end, the more people who come to understand about my son, and all the kids who will come after him, the better.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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To My Son's Autism Therapists

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Hi Therapists,

I feel like I know you all pretty well now. You’ve been in my home with my son for almost a year. Four, five, six days a week you’re here. You’ve seen me in my pajamas, watched me do laundry and cook dinner. I spend more time with you than I do with my friends or family. We chat, I sit and listen to the sessions, I ask questions.

But mostly, I watch. I watch you and my son, try to soak up what you’re doing, gauge what works and what doesn’t. This is your job, but this is extremely personal to me.

I know you went through a lot of training for this job. Some of you have advanced degrees and letters after your names. You speak in acronyms, take data and analyze my son’s behaviors. You are competent and knowledgeable and educated. You are able to develop lesson plans, implement them in effective ways and move my son from skill to skill. You are great at your job.

But I wonder if you know what it’s like to be me. I wonder if you have given any thought to what it’s like to parent these children you work with every day.

I’ll tell you that as a parent, it’s tough to get your head around that fact you have a child you can’t help. We special needs parents are forced to rely on others to provide the tools our kids need to reach their potential. Here. I am handing you over my heart and my soul, my absolute everything. I don’t even understand exactly what it is you do, but please make it your best. Please help my child. It’s debilitating, really. You can help my son and I can’t. I wonder if you understand the importance, the weight of this.

I wonder if you know how much of a toll this takes. Did they mention the tremendous strain parents are under during all that training? We’re fragile. We’re scared. We’re struggling. We’re hopeful. We’re grateful. We’re tired.

unnamed-27

Do you know how much we have to fight for our kids? The biggest surprise to me in this special needs parenting world was how much I have to advocate for my son to people who should be on his team. Schools, therapists, doctors, insurance – you name it, it was probably a battle. Do you think I don’t know that you roll your eyes when I call? I do. Trust me. I would rather be the fun mom, the awesome mom, the mom everybody likes. But my son can’t afford that mom, so I am the mom who gets him what he needs. It takes an awful lot out of me, and some days, I don’t greet you at the door with a lot of energy. What you might think is crabby is really just empty.

Your training should have included how much this therapy costs. I’m sure it didn’t, but I’d like you to understand the sacrifices we’re making to pay for all of this. You are worth it, I have seen it with my own two eyes, but it means we cut and save. Instead of a vacation, we pay for medical bills and insurance premiums. I work from bedtime to 2 a.m. so I can stay involved with what you do when you’re here, in my home. So I can be a part of my son’s progress.

I wonder if you know that placing this responsibility in someone else’s hands is terrifying. You are tasked with seeing my child’s potential, reaching through thorns and brambles, through cuts and scratches and bringing all that potential to the surface. You are tasked with nothing less than changing my son’s life. This might be the most important thing you ever do.

I want you – no, I need you to understand this. I need you to understand that every morning I wake up and hope for a breakthrough, and that every night I go to bed worrying about my son’s future. This is a lot of weight to carry. I have handed you a small portion of that weight. I need to know your shoulders are strong enough to carry it.

Sincerely,
Becca

This post was originally featured on Sincerely, Becca

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10 Ways I Parent Differently Because My Child Has Autism

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A few days ago, I was talking with a couple of colleagues at school.  One of them teaches a class with a little girl who has autism, and she was thrilled because the girl actually came up to her and tattled on another child.  She was just so happy to see her engaging in conversation and speaking up for herself.  This led us into a conversation about how we approach children with autism differently from neurotypical children.  By the way, when I use the word neurotypical, this simply means people who are not on the autism spectrum.

This led my colleague to ask a question I think many are wondering but are afraid to ask: “What’s it like to raise a child who has autism?” I thought I might try to answer her question here. Please know I can only speak for my own autism parenting experience, because each family has its own unique set of circumstances. There’s a saying in the autism community that if you’ve met one autistic person, you’ve met one autistic person. I know many children on the spectrum can display much more severe behaviors than what we deal with on a daily basis.

So, with that disclaimer, I give you…

10 Ways I Parent Differently Because My Child Has Autism

1. I let my kid jump on the bed.

… Or at least I did before we bought him a trampoline. I learned when Ben was very young that he needs to move — all the time. In this same vein, I never take away his physical outlets as a consequence. Ben has sensory needs that need to be met. If left unchecked (as in, if he sits too long without a motion break), he can become overstimulated or anxious, which can lead to intense emotions.

Jumping helps. So does crashing into a mat. So does swinging. And yes, we have an indoor swing in the playroom for this very purpose. Many neurotypical children enjoy swinging, jumping and crashing. For Ben, it’s as necessary as eating, breathing and sleeping.

2. I pack him the same lunch every day.

Yes, I want my child to have variety in his diet as much as the next parent, and we do encourage him to try new foods as much as possible. However, there are only a limited number of foods Ben will eat. Part of this is because he’s bothered by foods with texture. Part of this is because he likes routine and consistency. This is why he requests the same cereal every morning when he gets his breakfast at school. God bless the cafeteria ladies who save his favorite flavor of juice for him when they’re running low. This is also why I pack him essentially the same lunch every day. We’re working on the food thing as best we can, but it’s not easy, so yes, we pick our battles.

3. I discipline differently than some other parents.

Early on, I learned the difference between a tantrum and a meltdown. A tantrum happens when a child decides to throw a fit to get his way. You can spot a tantrum because a child is watching for your reaction and is in control of the tantrum. The child can stop a tantrum at any time. A meltdown occurs when a child becomes overwhelmed by sensory input or emotionally dysregulated. A meltdown is much more emotionally intense than a tantrum, and once a child reaches a full-fledged meltdown, they’re no longer in control.

The meltdown is just as scary or more for the child than it is for those watching it happen. So, yes, my husband and I have rules and consequences for my son, and we try to be very clear about our expectations. Our son’s behavior is almost never a result of defiance but rather presents itself as an emotional outburst (often tears) as a result of frustration sensory overload or an unexpected change in routine. Therefore, while we give consequences, we are very gentle with him and try to give him tools to handle his big emotions. When his emotions ramp up, then I have to make myself very calm.  Which leads me to…

4. I spend most of my money on squishy balls and Play-Doh.

Many kids like these things too, but for my kid, they are a really big deal. One of the strategies we’ve taught Ben for dealing with his emotions is to squeeze a squishy ball. He has a huge collection of them for this very purpose, and heaven forbid one pops, rips or breaks. We have social stories ready for this very purpose (“Sometimes our toys break…”).

Play-Doh is another necessary tool. It builds his hand strength, which helps him with fine motor tasks like writing. One of his favorite things to do is open a brand new container of Play-Doh and inhale its unique smell. Recently we learned to make Play-Doh using Kool-Aid, and he’s been in heaven experimenting with different scent combinations.

5. My life feels like one big movie script.

Many children on the spectrum who are verbal like Ben engage in something called echoalia. This means that they parrot back phrases that they hear others say. Sometimes they may repeat a word or phrase right after the speaker says it, but in Ben’s case, it’s often stored away in his memory for later. Often called scripting, Ben can memorize lines from his favorite books and movies and uses them during conversations and playtime. I know his teachers think he has a vivid imagination (which he does), but they probably don’t realize just how often he’s channeling one of his scripts.

For example, when he says, “We regret to inform you that chapter three was a dream,” I know he’s quoting “Bad Kitty Gets a Bath,” or when he pretends to hack up a hairball in class (sorry Mrs. B), he’s acting out a scene from a chapter in “Bad Kitty School Days.” Often he will use lines from these scripts in conversations, which he did tonight when he called Daddy back upstairs after bedtime and asked, “What about goodnight kisses?” in a perfect Agnes voice from the movie “Despicable Me.”

6. We live our life by rituals and routines.

Every parent knows the importance of having consistency and routine in their child’s life, but for Ben, this predictability is his rock in what can be a chaotic and confusing world. I’m reminded of this any time I deviate even slightly from our rituals. Bedtime is a great example. I’ve never taught him to do this, but I swear my kid can tell time. If I try to start the routine a few minutes before the regular time, he’ll point to the clock and protest, “It’s too early!” After brushing his teeth, books and a story of what’s happening tomorrow (our social story that prepares him for the events of the next day) and prayers, I say the same phrase: “Mommy will be on Mommy’s bed.  Ben will be on Ben’s bed. Have a good night sleep and I’ll see you in the morning.” There’s almost something sacred about our ritual. He needs it to feel centered and secure.

7. I celebrate the little things and find joy in ordinary moments.

Most parents take for granted that their child will walk, talk, wave “bye bye,” say “I love you,” ride a bike… For some parents, each of these milestones is a long time coming, if ever. So I try to never, ever take for granted the progress Ben makes. Like the first time he had a real conversation with another person. Or the time he started a game of hide-and-seek with some kids at the playground. Or the moment when he snuggled up to me in the chair and leaned over to kiss me on the cheek. These moments take my breath away.

8. I let my kid have an iPad.

Yes, I said it. My kid has had an iPad since he could barely walk. I know some view this as indulgent, but I’ve seen Ben benefit from the programs it offers. We limit the amount of time he uses it, and lately he hasn’t even asked for it at home in the evenings because he’s busy with art projects or checking on his trains. However, I do rely on it when we have to wait for extended periods of time at the doctor’s office or if we take a long car ride to a therapy session. And, on the days when he has to stay a long time in the after-school program, it gives him something to share with the other kids.  The coolness factor certainly doesn’t hurt.

9. I honor my child’s requests whenever possible.

When Ben communicates to me that something is too much for him, I listen because I’ve seen what can happen when I fail to heed his warning. Like the time I kept him in a dark theater when he was petrified of the huge dragon puppet and then wouldn’t go into another dark place for months. So if Ben doesn’t want to go on a ride at Disney, I listen and honor that request. This doesn’t mean he always gets his way. If his safety is at risk or if there are existing plans that cannot be altered, he does have to learn to deal. But if I’m able to give him choices, I always do. And if his request is a reasonable one that I can honor, I always will because I want him to know he can always communicate his needs to me and they’ll be heard and respected.

10. I compare my kid to my kid.

Another thing I stopped doing very early is worrying about what my friend’s kid on Facebook is able to do that my kid can’t. I’ve learned it’s much more productive to measure Ben’s progress against himself. And while this doesn’t mean I don’t have goals and expectations for him, I’m not going to stress if he’s not making the most soccer goals or if he doesn’t make captain of the debate team. If he gets those things, it’s definitely a bonus, but I’m cheering for the progress he’s making because he always gets there in his own time.

young child on bicycle outdoors

A longer version of this post originally appeared on Changed For Good Autism.

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