I am an author, artist, public speaker and government official. I also have Asperger syndrome and atypical schizophrenia. While I’m currently working, this wasn’t always the case. Every day when I arrive at work, I stop briefly in the foyer of my office building to reflect on how fortunate I am to have a job after living on welfare benefits for 15 years. There is no such thing as a typical day for my mind — every day is a new adventure (or challenge). Succeeding at work when you have a mental illness and other challenges is mostly a matter of finding the right support and building your own strategies. Here are some things I do to help me succeed at work. If you face similar challenges, these strategies might help you, too.

1. I start my day off on the right foot.  

I usually arrive to work at around 7:45 a.m. — and typically I’m the first one in. I love having the building to myself for a bit because I get overwhelmed when there are so many people bustling around. Some space at the start of the day can mean the difference between being having a stressful day and a productive one.

2. I organize my work in a way that works for me. 

I check my emails regularly and organize my tasks using a series of spreadsheets. I have to be organized because I can’t hold information in my memory for long. I have an enormous, color-coded spreadsheet for everything I do. I think my colleagues find me a little amusing with my elaborate, multi-colored Excel documents, but I know it’s a fond sort of amusement, not a hostile one, so I don’t mind.

3. I connect with my co-workers, even if it means simply saying, “Good morning.”

After 8:30 a.m. my colleagues start arriving, one by one. I say good morning – small talk I’ve learned after nine years of professional employment. I find that being friendly, helpful and kind is a great strategy for someone like me who can come across as a little odd. I imagine it means my colleagues and managers find it easier to like me. A nice person with autism and a mental illness is more likely to be seen as endearingly eccentric rather than the more hostile label a grouchy or angry person with my issues might attract.

4. I take a breath and think before jumping to conclusions. 

One day, on my way to buy lunch, I passed my general manager’s office where she was sitting with my director, doors closed. They both looked at me as I walked by. Because I couldn’t read the expressions on their faces, I started to panic – surely I had done something terrible and they were discussing drastic action that needed to be taken. How much savings did I have if I got fired? I had to resist the urge to knock on the door and apologize for everything I might have done to cause offense. I was fairly certain I hadn’t done anything terrible, but the paranoia runs deep.

I stopped, took a deep breath and reminded myself this is a frequent occurrence; my poor behavior has never been a reason for closed-door discussions between my managers. It was just my brain making two plus two equal 467.

5. I take a minute each day to recognize my accomplishments. 

As I eat my lunch, I like to reflect on the time this sort of anxiety and paranoia meant I was unable to work at all. My journey to employment took seven years. I had setbacks, one resulting in hospitalization for psychosis brought on by extreme anxiety during a dishwashing job. I was determined, though, and never gave up on my dream of employment. In order to achieve the apparently impossible task of getting to where I am now, I built my confidence through gradual exposure to different employment situations. I got to the point where I could work full-time and grasped the first opportunity that presented itself to me. I have been in my current job since 2007, and I’m proud of my achievement.

6. At the end of the day, I relax. 

At the end of the day, I take the bus home. After unlocking my front door I’m greeted by my big, beautiful black cat. Mr. Kitty is truly the best thing in my world, and a great stress-relief mechanism. I’m always tired when I get home from work — physically and emotionally — and having a black furry friend to give me cuddles helps me to unwind from the challenges of the day. I love my work, but like many worthwhile things, it can be difficult.

Follow this journey on Jeanette’s website.

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A few months ago, a story did the rounds about a boy with cerebral palsy completing a triathlon. What a wonderful achievement for that boy to complete such an intensely physical feat seemingly against the odds.  But with the sharing of that video came the onslaught of beautiful, well-meaning friends. Tagging me in that photo. Posting the video on my Facebook wall. Sending it to me in a private message.   

There was probably a time when seeing such a video may have given me hope, that the possibilities for my own child with cerebral palsy were infinite. But now, a few years down the track, we’re comfortable with our child’s diagnosis, and we know he will be able to reach his full potential, whatever that may be.

Who gets to decide what their full potential is, though?   

Picture this. You’ve just bought your 5-year-old a new bike. Suddenly 10 friends tag you in videos of a 5-year-old doing amazing BMX stunts. If that 5-year-old can do it, then yours can too, right? After all, they’re both 5-year-olds with bikes.

What if you posted a video of your toddler pointing out pictures in a book, and then a bunch of friends sent you videos of children doing baby reading programs and reading actual words at 18 months old? Your baby could do that, too!   

Or what about a video of a child with red hair who’s an amazing singer. Your child has red hair too, so they could be just like this kid!

How would you feel? What if your 5-year-old has no interest in BMX and just wants to ride carefully along the footpath outside your house? What if your toddler is more interested in banging on pots and pans, and that’s completely OK with you? What if your redhead hates music?

Imagine if friends started tagging you in posts like “30-year-old mother runs marathon.” Well, you’re a 30-year-old mother, aren’t you? You could totally go and run a marathon if she did! Or what if you’re Asian, and all your friends tagged you in a post every time an Asian person was mentioned? Because all Asian people are the same, right? No, they aren’t. And neither are people with disabilities.

All children are individuals. Not every 5-year-old will want to do BMX, and not every red-haired child will like singing. This includes children with cerebral palsy. They may have something in common with others by sharing a diagnosis, but they are still individuals with unique interests, and unique strengths and weaknesses like any other child. I know you’re trying to be encouraging when you share those stories with me. But before the boy who did the triathlon, there was the boy who ran a race at school, and his entire class went and ran beside him. Or you saw a child on a current affairs program with cerebral palsy. These children are not my child, and may in fact have little in common with my child.

There is a huge range when it comes to how cerebral palsy can affect a person. Just because one child with cerebral palsy can do something, it doesn’t automatically mean another child can. Nor does it mean they will have any interest in doing so, because just like not all able-bodied people are interested in doing triathlons, neither are all people with cerebral palsy.

It just doesn’t really make sense. And it doesn’t just happen to parents of children with cerebral palsy. I believe other parents of children with disabilities experience this, too. We parents may choose to share videos or photos of children who share our child’s diagnosis from time to time to help raise awareness or because they have touched us in some way. But we don’t always need all our friends sharing them back. We are aware of our child’s condition, and we love our child very much, and we will encourage them to reach for the stars (or whatever else they want to reach for!) because we believe in them.

We know you mean well, but I promise you — if something amazing has happened in the world of cerebral palsy, I’ll know about it before you will. So for now, please look past my child’s diagnosis. See who he really is and what he’s interested in. Don’t lump him in a box with others just because he shares a similar characteristic. And I won’t do it to you or your children either.

The Mighty is asking the following: What’s one thing you wish you could tell your loved ones about your experience with disability and/or disease? 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.


When you look at the photo below, what do you see? A happy family photo, Mom and Dad with their newborn and her stuffed bear. That is not the whole story. There is so much more to it than it first appears. It’s a happy family, yes, but not a complete family. That bear our daughter is holding is not just a bear; it is a touchstone, a physical representation of what is missing — our firstborn.

In July 2012, my husband and I were thrilled to find out we were expecting. I found out while I was away at school. I called him on my laptop from my bunk in the hostel I was staying at to share the good news. I called my parents immediately after. My mom just found out that her younger sister was going to be a first-time grandma, so I was extra excited to tell her she would be a grandma, too. She was so happy, she dropped her computer on the floor. I left Jeff to call his parents to tell them they were going to be first-time grandparents as well.

About eight weeks in, we started to have some problems, but our doctor kept telling us everything was fine. By the time we saw a specialist, we were told there was a high risk of preterm labor, but she would watch us closely. Less than a week later, I experienced a hemorrhage, and two weeks after, that our daughter Megan was born at 21 and a half weeks. We had her for three hours before she passed. She spent her life surrounded by almost all of the people who loved her most in the world.

While I was in the hospital before she was born, my husband bought me a stuffed polar bear. It was the only toy we had to give Megan when she was born. We buried her with it and then bought more to give one to everyone in our families, so when we miss her we have something to hug. It is not the same, but it is something.

In August of this year we had our “rainbow” — another little girl, Aeryn. When she was 5 weeks old, we had a photo session and this family photo is one of the photos from it. I chose a photographer who works with Now I Lay Me Down To Sleep, a group of volunteer photographers who do remembrance photos for bereaved parents, so she would understand my desire to include Megan’s bear and would be comfortable with whatever emotions I had to deal with during the shoot. The photos she took are stunning and capture our family well. But what they don’t show is all of the emotions that accompany trying to move forward after the devastating loss of a child.

They don’t show the crushing sadness that came after we lost Megan. They don’t show the months of anxiety waiting for Aeryn to be born, counting down each day until 25 weeks, and then 26, 27, 28… The panic I felt before each monthly appointment. What if there was something wrong? How could we deal with losing another baby? These beautiful photos don’t show the guilt I feel for not thinking about Megan as often as I used to. I still think about her every day — it’s impossible not to — but I don’t find myself dwelling on her as much because Aeryn needs my attention. They don’t show the bittersweet celebration of every new exciting thing Aeryn does, or the mixed feelings of seeing my cousin’s son, born a few short weeks after we lost Megan. A great little boy, but also a constant reminder of how old Megan would be, that she would be getting ready to go to school next year, that she would be walking, talking, maybe going to a preschool program.

A photo of a smiling, happy family; parents with their newborn. A moment frozen in time, a piece of a story, but not the whole story.

The Mighty is asking the following: Share a photo with us and the bigger story behind it. What don’t we see in that photo? 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.


Last Monday, my daughter Esmé, her caregiver Mayah and I went out for ice cream. We sat in a shady spot with our cones. Ez sat in a tired and slightly wilted, but happy, side reclining pose in her wheelchair. We gave her tiny tastes of ice cream off our fingertips, and we gave her a tube-meal while trying to down our ice cream before it melted down our hands.

After a while, I noticed a little girl sneaking closer and closer to us in a shy effort at making friends. Eventually she started talking with us. She was sweet, articulate and curious, telling us about her big sister and baby brother between darting back to her grandmother now and then to steal bites of her ice cream.

At one point, I asked her how old she was. Four, she said. I responded with a smile. “Esmé is 4 too. When is your birthday?” Turns out, she was born the day after Esmé.

I found myself troubled by what Esmé must think or feel when she sees another child her age able to do these things so easily — when she sees another child engage her mother in a way she cannot. This worries me more that it has in the past, because in the past she seemed not to notice or care much what others did if it didn’t impact her. But we’re seeing this emerging social awareness — primarily born, I believe, from her time with her wonderful school friends.

For example, this week at school for the first time she recognized that her classmates were transitioning from the reading rug over to the tables for snack. Her classmates all stood up and moved in that direction. She followed them, purposefully army crawling to the table to meet them. And then she sat at the table until all of the children were finished. This is a feat for her.

Later on in the week, she tried to crawl out of her occupational therapy session with her caregiver and her therapist. She then aimed herself toward the door I had disappeared behind, answering their questions as to where she was going with a Maman, Maman, Maman.

All of this is wonderful. It means she’s increasingly attuned to her surroundings and what people are doing around her. It also means she’s going to be increasingly aware of the difference between her and others.

Recently we watched an unfamiliar episode of “Yo Gabba Gabba!” And in it the characters talked about all the things “babies” cannot do — walk and talk and eat on their own. Ez loves “Yo Gabba Gabba!” and had been watching in her intent way — chin up in a way that always makes me think she’s about to take notes. But as soon as this discussion started, she began to whine in protest. She got increasingly anxious until I turned off the show.

It may have been a coincidence. But I can’t help but think she understood and was upset she might be seen as a baby because she doesn’t walk or walk or eat on her own… just like I can’t help but think she understands when kids younger than her point at her and say, “Look Mommy, a baby!”

I tell her all the time what a good girl she is, what a big girl she is and how proud we are of everything she can do. And I try very hard not to place pressure on her about future successes. I never want her to form her self-worth or identity around what she might do or not do someday. Nor do I want others to perceive her as incomplete because she’s not doing something yet.

You can’t explain to the kid who calls her a baby in passing that she’s older than him. But we have been able to educate her classmates about something I believe is so much more important than anything they might learn in preschool: thoughtfulness and sensitivity to someone who is different from them. I truly believe they will carry this gift with them for life in some way.

And, at the end of the day, I have hope that the little girl we met last week who was one day younger than Ez is learning that, too. There is evidence she is in the way she seemed unfazed that Ez was her age, in the calm model her grandmother presented as she kindly remarked about Esmé’s beautiful name. They weren’t overly curious, or eager to categorize her. They just accepted her as she is: this is Esmé, and she is 4 years old.

Follow this journey on The Cute Syndrome.


October is Down Syndrome Awareness Month. One of things the Down syndrome community strives for in our goal for awareness is using person-first language. In short, it means the person comes before the disability in a description.

I’ve had people refer to my daughter, Tessa, as a “Downs child” or that “Down syndrome girl,” instead of referring to her as a child with Down syndrome. When people say “Downs child,” we feel that automatically defines her. When in reality, her extra chromosome is a small part of the bigger picture. 

By encouraging others to use people-first language, it’s my sincere hope we can look past a diagnosis and recognize people for who they are — people with names, hobbies, talents and feelings like my daughter.

My name is Tessa.

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I was born with Down syndrome. I am not Down syndrome. I am not identified by my extra chromosome.

My name is Tessa. I am not a “Downs kid” or “that Down syndrome girl.” I am a person…with one big beating heart.

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My name is Tessa. I have feelings and emotions just like you. I am expressive. I have good days and I have bad days. Sound familiar?

My name is Tessa. I am complex and beautiful. I am simple and sweet. I am way more than you think you know.

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My name is Tessa. I am not special because of my chromosomes. I am not a mistake. I was perfectly created to be me.

My name is Tessa. I am smart. I am funny. I am capable. I am not suffering. I am strong.

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My name is Tessa. I have family who loves me. I am accepted, not judged, by my friends.

My name is Tessa. I am not a punching bag for the narrow-minded. I am a positive influence in this world. I have a lot to offer.

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My name is Tessa. And that is what I like to be called.

Follow this journey on Dear Tessa.


Dear parents of children with special needs,

I am a mother of three boys, two of whom have special needs. One has a terminal genetic rare syndrome, while the other has ADHD — and I don’t know how to talk to you.

Your child has a disability? Has Autism? Has Down syndrome? Your world is full of hope, challenges, overcoming challenges, seeing results, seeing your hard work pay off and fighting for your children to be accepting into society just like any other child (rightly so). Your world is full of love, courage, strength and heartbreak, too. It’s almost like mine but not quite.

When you tell me how well your nonverbal child can communicate using different methods and supports, I am envious. You encourage me to try the latest “app” or use a “pic board.” I’ve done all that when my son, Ethan, could retain information. And you’re right, it did work, just not anymore.

I just nod and smile. I’m really not trying to be rude.

When you talk to me about my son while we both wait to see the speech and language therapist, you tell me about the pace your child is progressing with the help of the therapist. I hope you don’t ask me; if you do, I lie.

I just nod and smile. I’m really not trying to be rude.

When you tell me about what works for your child with autism and how I could apply some of your ideas to Ethan’s schedule or how I could use your ideas to help with behavior and  sensory issue to make Ethan’s and our lives a little easier, I appreciate it, I do. I want to tell you Ethan has forgotten his name; he can’t “remember” anymore, but I don’t.

I just nod and smile. I’m really not trying to be rude.

When you tell me how you fought the “system” to get your child included with extra supports into mainstream school, you ask if I’m sure my son is in the right school. I want to tell you Ethan has changed school three times due to his decline, but I don’t.

I just nod and smile. I’m really not trying to be rude.

The truth is, I’m an outsider to your children’s needs and your struggles. Yes, I’m a parent of two children with special needs, but I don’t “fit.” I don’t know what the “right” thing is to say. If I tell you about my son, I’m afraid I will sound like “that” mommy. You know, “that” mommy who always has to have it worse… the one who can trump any experience you may have had by 100 times? Yeah, her. I’m afraid that’s exactly who I’ll sound like if I open my mouth.

If I talk about my middle son and his struggles, I feel like a fraud because having Ethan diagnosed first gave me insight and perspective. ADHD, I can handle. I’m afraid you’ll think I have no insight into your struggles.

I just nod and smile. I’m really not trying to be rude.

I can’t fight the fights you do. I simply have to choose which ones are vital and which don’t really matter as time goes on. Ethan has a progressive syndrome. As he ages, his needs grow, and he needs change. Supports that were vital a year ago may very well be pointless in the here and now.

How do I speak to you without sounding like “that” mommy?

Because I need to speak with you. We have so much in common… yet we don’t.

Follow this journey on It’s Me Ethan!

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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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