“Raise your hand if you know what autism is,” Jackson says in the video below. “It makes some parts of my brain work really well and some parts my brain work not very well. Doctors don’t know what makes some brains have autism and some brains not have it… Sometimes I need help learning things that other brains automatically know. The autism in my brain is something that I like, and something that I don’t like, but it’s part of me, just like your brain is part of you.”
Check out more of Jackson’s story in the video below:
I don’t mean that in some sort of grand, metaphorical sense. I mean I will sometimes forget what I care about or lose the thread of narrative in my life. I’ll wonder if I’m still the same person I was yesterday. Sometimes it feels like I’m not really me, as though my mind has shimmered out of my body and hovers just a few inches over my head.
I have borderline personality disorder, and one of the traits is having an unstable self-image. That means you have a hard time telling what your core traits are. It’s frustrating and confusing. I can never tell if I’m actually intelligent or just good at school (until people remind me over and over again). I have no idea if I’m a good friend or a good person, and I cannot for the life of me imagine how I might appear to other people. Not only is it disorienting and frustrating, it also means I’m constantly second-guessing my own abilities and traits. If my boyfriend doesn’t remind me he loves me on a regular basis, sometimes I just forget. It can be incredibly annoying.
In the movie “Memento,” the main character wakes up each day with no memory of his life. He doesn’t know who he is or what he wants. In order to remind himself, he tattoos himself with all the important information in his life. It sounds like a silly plot device, but without realizing it, it’s how I started to remind myself of who I am.
I got my first tattoo when I was 18. It’s a tiny music note behind my ear. I was in a bad place when I got it, falling into my first bout of serious depression. Changing my body was my way of feeling in control. And it wasn’t just a music note — I got a dotted sixteenth note. I played piano for 13 years and always loved syncopation the most. It’s what made the music interesting and quirky. That’s what I wanted to be. I always have. Now I don’t play music, but I love the way I feel when someone asks me about the note. I remember I love being offbeat.
My second tattoo came after I had fallen deep into an eating disorder and started to come out the other side. It’s the eating disorder recovery symbol, hidden on my hip where only I see it. During the early stages of treatment, I could barely hold on to simple facts about myself. It seemed as if minute to minute my priorities would change. One moment it would be so clear I needed to lose weight, and the next there would be a sudden realization I needed to be healthy. These facts flicked in and out of my mind so quickly I couldn’t tell what was real and what wasn’t. When the needles first bit into my skin, it was a certainty I couldn’t go back from. I still regularly look at it or touch it when I’m in the midst of a fight with myself. It helps remind me even if today I want to starve myself, tomorrow and the next day and the next day I do want to be alive and healthy.
My third tattoo is all thanks to my therapist. You see I’m a perfectionist, someone who wants all the answers. But I also tend to forget every good thing I’ve ever done, which means many of my days are spent striving to “earn my keep” in some metaphorical sense. I always want to reach the destination, the answer, the “right” thing or version of myself. So instead my therapist made me imagine myself as an explorer, someone whose job it is to simply go look, try out new things, see what it’s like but then come home. The image stuck with me. That’s why I have a compass on my arm. I look down and think, “I’m going to explore this idea today,” instead of “I’m going to figure this out today.”
I don’t know if I would forget all these things if I didn’t have tattoos, but I do know having them permanently marked on my body makes them easier for me to internalize. It helps me remember who I am. It helps me build up an identity instead of ripping myself apart every day to try to build a different, better, somehow perfect version of myself. I feel as if I’m writing my own self every time I get a new one. It’s physical, forever and real in a way my internal monologue will never be. My tattoos are part of my treatment and part of my recovery. It might seem unconventional, but many methods of self-care are, and this one works for me.
Parents of children with special needs, indeed anyone caring for people with chronic illness and disabilities, know that our life journey can be much less like a race to the finish and more like a marathon. That said, I couldn’t help my brain from seeing parallels as I jogged along the 5K race route through our hometown of Jamesport, New York, last week.
I was more prepared for my first 5K last year, having run three or four times a week for eight weeks before the race. This year, my own struggles with multiple sclerosis fatigue and the untimely death of my sister made training more difficult. However, those same factors and my daughter Johanna’s ongoing issues with cavernous angiomas and hydrocephalus compelled me to run the race to the finish.
While I had planned to run the 5K pushing my daughter in an adult running stroller, that just didn’t happen (we used her wheelchair instead). The night before the race, I asked her if she still wanted to be in the race with me. Johanna gave me her proverbial thumbs-up. Our only practice was me jogging up the street as I pushed her in the wheelchair. It wasn’t easy, but that’s when I decided we would get through it together.
I learned a few things about life as a parent to a child with special needs — from our first push to the finish — and I’d like to share them with you.
1. Fear nothing.
As I lined up with the other runners at the start of the race, I purposely positioned myself off to the side so as to not run into someone with the wheelchair. I’ve been known to be an absent-minded driver on two wheels as well as four.
With those first strides and pushes, I was immediately struck with fear. My heart was racing, and I felt like I was going to faint. Negative thoughts raced through my mind faster than my feet could carry me. I was afraid that my legs would give out and I would overheat quickly. I was kicking myself for not preparing better by training with Johanna.
Then I glanced down at Johanna laughing and waving to people on the sidelines. I thought of how much courage is bound up in this 19-year-old young lady, who has had more brain surgeries than most people have years in their life. In that moment, as we rounded the first bend in the road, I made a decision to dismiss all fear and press on to the finish.
Dismissing fear is essential to pressing on to the finish.
2. Do what you can, not what you can’t.
This is my go-to decision and one of my secret formulas for any problem in life.
After dismissing fear, I assessed our abilities as a team. Johanna was fine and, in fact, she was truly enjoying this race. I drew my inspiration from her as I told her that we would do a light jog and a fast walk the whole way. And I told her that if at any time she was uncomfortable, I needed her to tell me.
Living with chronic disease has taught us that any plans can always be altered; we just need to lead with our strengths and find the best ways to do what we can do to complete the tasks ahead.
Those who have read my book or attended my workshops know that the first step to breathing while you feel like you’re drowning is to believe.
To accomplish anything, I think we need to believe in ourselves and that every struggle has a greater purpose beyond this life. I believe Johanna and I find our greater purpose in a living relationship with God.
Dismissing fear, deciding on a strategy that we could do and finding purpose in any difficulty has become a way of life for us. Since before Johanna was born, she has inspired me to believe. This day was no different.
I believe prayer is the key to our dialogue with God, and it inspires us to believe life holds a greater purpose.
As I jogged and pushed, Johanna remembered people by name as we prayed our rosary. I struggled to talk as we prayed, but the prayers and Johanna’s belief that we were running for a purpose kept me going.
4. Accept help and soak up the encouragement along the way.
Being a caregiver/parent to a someone with special needs can be exhausting. Anyone who has ever dealt with challenges beyond a day knows we all need help. I was reminded of this simple fact as people along the route were cheering us on. Volunteers and families were all so encouraging.
As we kept moving, there were water stations along the way. Rather than taking time to drink it, I poured it over my head, much to the giggles and laughter that consumed the princess in her chariot. We all need to accept help and encouragement along the way.
5. Persevere until the end and anticipate the bumps in the road.
This wheelchair wasn’t meant for running. I took one corner too quick and Jo almost went flying! So I refocused my pace and looked slightly ahead to avoid literal pitfalls in our journey. None of us can predict the future, but the more we persevere, the greater ability we have to plan for the obstacles ahead.
At the end of our jog, I asked Johanna if she wanted me to run the rest of the way towards the finish. She answered, “Yes!” with great excitement in her voice. As I ran and pushed her to the finish line, my little inspiration put both her thumbs up in the air.
My perseverance was rewarded, not so much in the sight of the finish line, but in the smiles on my daughter’s face.
When I was younger, homeschooling wasn’t even on my radar. I really didn’t even know it existed. When I became a mom, I knew homeschoolers were out there and were becoming more visible. I even had a friend who was planning on homeschooling her own children. “I could never be a homeschooler!” I balked. Little did I know that five years later, all of that would change.
I knew things would be different for us than for most. Our son had special needs. Right before kindergarten, our son was diagnosed with a form of autism called Asperger’s syndrome. He was also diagnosed with ADHD and anxiety. Our problems with public school began almost immediately. Our son began kindergarten at his designated school, however, they quickly decided they “could not accommodate such a child” because they didn’t have an autism program. We were quickly transferred to another elementary school in our district.
Things started off well. They had an ASD (autism spectrum disorder) program that would allow him to be in mainstream classes, but he would also benefit from special-education programs, such as social skills and adaptive physical education. After his testing was complete, we were approached by the head of the gifted and talented program. They had big plans for our twice exceptional son. Kindergarten went very well. He was happy, we were happy and everything was good.
But in first grade, things were not so good. Our son had learned how to manipulate the system, and they were letting him get away with a lot of things because “he has autism.” We found this unacceptable and had many, many meetings about it.
Over the course of the year, our son became a real-life Jekyll and Hyde. Our sweet, intelligent, quirky and loving boy had become an unintelligible brute, hell-bent on violence and destruction. The school told me he couldn’t read, he refused to write and when they tested his IQ again, it had dropped drastically. At this point, I started research on whether to pull him out of school.
I still wasn’t sure if I could homeschool him, so for second grade, we began a K12 online charter school program. This just didn’t work for us. It was too rigid for our boy, and it wasn’t as adaptable as we thought it would be. We continued K12 while I researched other options.
A lot of special needs parents know that after public school — unless you have a lot of money — there aren’t many options. I began to realize my son’s academic problems were not because of his intelligence or cognitive abilities, but they were completely driven by his level of interest. If he has no interest in something, he doesn’t do it, he doesn’t retain it, he doesn’t care. However, if you can pique his interests, you can teach him anything, and he can tell you more facts than you would ever care to know.
After this revelation, we pulled him out of the online charter school and began interest-led eclectic homeschooling with him. Ever since that day, the Mr. Hyde to his Dr. Jekyll no longer rears his ugly head, and my son is happily learning at home.
We may be the unexpected homeschoolers, but it was the best decision we could’ve made for our son to benefit his health and happiness.
I have learned from this experience that I truly am my son’s biggest advocate, and no one knows my child like I do. Never give up or give in. We all want what is best for our children with special needs, and we have to stand up for them.
I know that homeschooling is not an option for all parents, so just try to find the best fit for your child. It may be as simple as another teacher, a stronger IEP or adapting their day more to them. It could also be best to switch schools if necessary. Research your options and talk to the special needs coordinator in your local district.
I wish I would’ve known more about ASD programs, specials needs in schools and IEPs when we first started this journey. I suggest reading up on these things so you know about your options. I wish I would’ve known how much power we, as parents, have to advocate for our children.
It all comes down to doing what is best for our children so they can be happy, healthy and in an environment where they can thrive.
Dorming as a college freshman was a disaster, so I opted to live in an on-campus apartment for my sophomore year. As soon as I received contact information for my five housemates, I shamelessly Facebook stalked them, eager to make guesses about which one might wind up being my closest friend.
Lizzie’s favorite color was red, she loved to read and write and she had mild cerebral palsy. Instantly, I was intrigued. There were few things I loved more than writing stories and delving into books, and I hoped someone with mild cerebral palsy wouldn’t be alarmed by a roommate who was totally blind.
My initial email was almost certainly full of screaming all-caps and thrilled exclamation points. I asked Lizzie about her favorite books, her stories in progress, her plans for the upcoming year. Lizzie’s reply, I’m sure, was calm and collected, meticulously addressing each of my questions and comments. Neither of us mentioned our disabilities; Facebook made them obvious, and we each must have assumed that the other already knew.
When we met in person, Lizzie and I quickly realized that our first set of emails would mirror our friendship to a tee. I was the loud, over-the-top half of our duo, forever insisting that we go downtown on the weekends, host Uno marathons, ditch our homework in favor of reading young adult novels aloud together and gab endlessly over mochas and chocolate chip cookies at the coffee shop. Lizzie, on the other hand, was practical, responsible and levelheaded. At the start of each quarter, she’d check our progress toward graduation and sign us both up for the appropriate classes. She dispensed medicine when I got sick, reminded me to occasionally eat a square meal (which she would cook) and prodded me to give my homework more than passing attempts. While I dragged Lizzie to the mall or to the dining hall with our friends, she taught me how to do laundry, clean toilets and add honey to my peanut butter sandwiches.
Our personalities couldn’t have been more different. Lizzie would affectionately tease me about my always-sunny disposition, my optimistic, giddy enthusiasm, my tendencies to giggle and hug and gleefully jump up and down whenever anything remotely exciting happened. I, for my part, loved Lizzie’s snarky sarcasm, her wry sense of humor and her candid honesty, which bordered on bluntness around the people she knew well. We never failed to amuse one another, perhaps because our outlooks on life were so unique.
Our remarkably reciprocal friendship would have been noteworthy in and of itself, but our disability-related interdependence deepened our closeness even more. In my experience, a singular bond often exists between two friends who are disabled in different ways. Asking for help — and needing that help in the first place — feels exponentially more comfortable when your friend is in the same boat, and you are able to help them in turn. So it was with Lizzie and me. She read aloud assignments which weren’t Brailled, navigated inaccessible web sites and oriented me to different locations on campus. I learned about her leg braces, about how Botox injections eased the spasticity of her leg muscles, about how she did things differently when one hand worked significantly better than the other. If she fell, I helped her up; thankfully, we were around the same size, so standing behind her and hoisting her to her feet was easy.
Our matching dark hair, dark eyes and 5-foot-nothing heights, combined with our constant togetherness, caused more than one person to mistake us for sisters. We were regulars at the on-campus grocery store, where Lizzie would expertly steer me through the tight mazes of shelves as I shouldered our giant tote bags. Whenever we walked anywhere, it was hand-in-hand, Lizzie leading the way while I braced her on the rickety staircases.
When I first met Lizzie, I naively assumed that we would connect over being two of the very few physically disabled students on our university campus. But while my blindness was immediately visible in the shape of my Braille and cane, Lizzie could hide her cerebral palsy, if she chose to do so. My blindness — and my ongoing quest to form an alliance with it — was something I openly addressed with others out of necessity. Lizzie, in many ways, had already accepted her disability and achieved independence; yet, sharing that facet of her identity, and finding and expressing pride in it, was still new to her.
Our friendship was rooted as much in my blindness and her cerebral palsy as in her family’s spaghetti recipe and my constant requests to walk to the nearby, on-campus café to buy tubs of Ben and Jerry’s ice cream. We shared as much about our disabilities as we did about homework and crushes and the stories in our heads. Disability may have jump-started our friendship, but it was everything else — our similarities as much as our differences — that continued it.
Don’t feel bad — even I grew up believing I could swallow my own tongue and that was why you were suppose to gently smack me on the side of my face. Wrong. People with epilepsy can bite our lips and tongues while having a seizure, but no we can’t swallow them.
2. Don’t be afraid.
There is nothing to be afraid of. Having epilepsy is a challenge, but it only makes me stronger as an individual. Instead of avoiding me, learn what to do if I happen to have a seizure when we’re together. Catch me, time the seizure, put me on my side, to name a few. And most important, comfort me and talk me through it. In my case, if the seizure happens to last more than a minute or two, call 911.
3. I’m just like you.
Having epilepsy doesn’t make me any different from a person sitting next to you who doesn’t have it. If you think about it, we all have something — just because mine is epilepsy doesn’t make me any more or less different, unique, strong, etc., from the kid next to me fighting cancer. Or the girl across the street who has cystic fibrosis. We’re all strong, unique and beautiful in our own ways — just fighting a different battle. Epilepsy is a brain disease; some people know the cause of theirs and some don’t. I’m 22, and doctors still haven’t found a cause for my epilepsy. But in my case, it doesn’t keep me from living a normal, everyday life. I’m just like you.
4. Learn my warning signs.
Some people who live with epilepsy say they can sense when they’re getting ready to have a seizure. Their arm will start to shake or they get a headache, become dizzy, etc. I can never sense when I feel one coming on. Sometimes, heat is a big trigger for my epilepsy, and I let people know this. The best thing to do when you’re brand new in the life of someone with epilepsy is pay attention. If you see them acting strange, getting dizzy, etc., stay close by and be prepared.
5. Just be my friend and love me through it.
Living with epilepsy is hard enough. Having to fight for what we want is hard enough. Having to worry about medication, insurance and for some people more than that… is hard enough. You may not see it, but we feel pain. The main thing people living with epilepsy want from anyone in their lives — not just new people coming in it — is to just be our friend and love us through it. Support us and tell us it’s gonna be OK. We just want to know you’re going to be there through the good seizure-free days and the bad days too.
Bonus: If the new person in your life is an employer, here’s my advice:
Starting a new job can overwhelming, exciting, scary all at the same time — for anyone. But living with epilepsy and getting a job can be frightening because we wonder, “What happens if they find out I have epilepsy? Will they hire me? Will they fire me if I don’t tell them? Will they know what to do if I have a seizure? Will they still keep me if I have a seizure?” I suggest letting your employer know you have epilepsy. Ask questions and make sure you get answers.
Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.