4 Things I’d Like My Future Step-Siblings to Know About My Autism

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In less than a week, you will become my step-sister and step-brothers. Over the last year, we’ve had many adventures together: the amusement park, the science museum, the water park, the movies, restaurants and so many others. It’s been fabulous, but I’d be lying if I said it was always easy. You see, I have autism, a developmental disability, which sometimes makes things harder for me. Here are four things I’d like you to understand about me before I become your step-sister:

Chloe Rothschild the mighty.2-001

1. Why I get to use my gadgets at restaurants.

You probably don’t think it’s fair that I get to use my iPad, phone and or headphones at restaurants. If you tried using them, you’d more than likely be told no. Why am I allowed to have fidget toys at the dinner table or you’re not? Let’s think about it like this: When I play my iPad, it allows me to cope better. My iPad serves as a tool. This tool allows me to focus and participate to the best of my ability. It keeps me calm.

Sometimes, the world of autism can just be too much and this helps. I don’t expect you to fully understand this yet, since you’re young. It will come with time. In the meantime, know that I love you, and I’m sorry if you feel like things aren’t always fair.

2. Why I get frustrated sometimes.

You’ve seen me get frustrated and upset occasionally. I’m sure you sometimes wonder why. I’m sure you probably have questions. Please know that you can always ask questions. You see, autism affects my ability to communicate and to get the right words out when I want to say them. Sometimes, this results in frustration. Please know that I’m trying hard each and every single day.

3. Why I’m by myself.

I’m sure you wonder why I spend so much time in my room. My sensory system and the way I take in and process things going on in the environment around is different than how you process things. Coping requires extra effort, extra tools and extra breaks.

4. Why I love you.

Above all else, please know this: I love you. I’m so grateful that you accept me, support me and love me. Please know I’m excited for the many more adventures that lie ahead in the future.

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To the Educators Who Don’t ‘Get’ My Child’s Epilepsy

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Dear Teacher/Principal/Counselor,

I’m writing to you today to express my thoughts about my child with uncontrolled epilepsy and hopefully give you some insight into her.

First, I would like to say a large majority of you do an amazing job. I don’t think I would cope with looking after 30 minions every day and taking work home like I know you all do. Having to deal with 30 parents makes me quake in my boots. It’s not just a job; it’s a way of life.

To the amazing teachers, you take on board my child’s needs and recognize the impact my daughter’s epilepsy has on her and us as a family, even when it may not be in your face on a daily basis. You go above and beyond in putting my child’s needs at the forefront. Thank you. Thank you. Thank you.

In regards to the small percentage of teachers/principals/counselors who just don’t get it, I would like to share with you the following:

Our child’s life is not a walk in the park, and I hope you never have to experience what she and thousands of other children go through. I thought it best to try and place you in her shoes for just a little while.

Imagine having two Valiums and then teaching a class. Just close your eyes and imagine. You feel slightly numb and slightly dazed. Would you find it easy to teach concepts, remember each child’s needs and process information coming at you thick and fast?

Our kids have this experience constantly from the epilepsy medications they take and from the seizures that can make them feel like they’ve taken a Valium… or five.

Also — it’s not just epilepsy!

Well, for some kids it is because they have no medication side effects and they’ve found a way to control their seizures. However, for my child and many others, it’s a whole lot more than seizures. The byproduct of uncontrolled epilepsy brings physical, psychological, sensory, learning and developmental issues we never knew could happen.

So, again, let’s put yourself in my child’s shoes.

You get up in the morning and as soon as you wake you’re inundated with the rush and noise of the house coming alive getting ready for school. All you want to do is sleep because after a seizure last night your brain and body are exhausted, but you’re tough so you get up and start your day.

You like things to be routine. You have so many things in your life you can’t control that what you can control something, you will. So you go and organize breakfast and break down because Mom has run out of your favorite breakfast food. You let everybody know how angry you are. You’re soothed, and a new breakfast is organized.

Now it’s time to pack your bag and get dressed, but these aren’t simple things because you find it hard to plan. You ask your mom to say one thing at a time so you can get each thing done.

 It’s time to put your clothes on. Remember, shoes have to be comfortable. No tongues, nothing moving and tight but not to tight. You’re lucky today that your mom found a pair of boots you like that don’t cause your feet to be on sensory high-alert. Now for undies — but only a certain type of undies because some cause you sensory overload and you’ll get upset again. Clothes have to be comfortable and not have any tags in them.

Now you’re in the car on the way to school. You make sure Mom doesn’t have the music up to loud; it beats through your head if it’s to loud. You have a set volume and your mom knows it. But you can’t always control the volume of your sister.

Let’s step back a minute. All this before getting to school. You’re exhausted because of a seizure the night before, but you know you have to push through.

You get to school just as the bell rings and all you can hear is children’s chatter. The same noise you can’t go near when at a supermarket or shopping center, but you have to deal with every day, so in to class you go.

Your planning and processing are slower, so thinking about organizing yourself can be tiring. Getting your bag packed away and ready for schoolwork is enough to put you over the top, but you just have to keep going.

Sitting at your desk, you’re still exhausted and in sensory overload. Now you have to read and write and listen. This seems easy enough, but learning is hard, reading is exhausting and difficult, listening takes up space in your head as you try to block out the noise around you and writing uses muscles you didn’t know you needed. You have low muscle tone so your core muscles don’t work as well. You fight to hold your posture while you write but usually end up huddled over the desk.

Sometimes the kids are quiet, other times they are loud. You have to let it wash over you and let the sensory input nestle in the back of your head because you’re a good kid who doesn’t want to lose it.

Now it’s recess. Yay, a break from work, but work doesn’t stop. Your body has to work hard to catch up to your friends. You can’t run as fast and play as much; you get tired quickly. You’re lucky you have a few friends who understand. Most of the children don’t though, so sometimes you get left out. You hate feeling left out and you sit there quietly on a bench saying, “Why me? It’s not fair”.

Recess ends and you go back to class. You have to remember what’s coming next and hope that your routine is the same, and if it isn’t, you hold it in a bit more because you’re a good kid who doesn’t want to get into trouble. Lunch is the same again, but this times it’s longer and more exhausting. Socially you’re struggling in keeping up with conversations between friends because you’re tired and about to lose it.

The day continues and you become a kettle slowly simmering away. You want to let steam off, but you hold it together.

The day is over and you get in the car. You scream at your mom and your sister and become whiny, yelling and yelling. Your mom gets you and so does your sister, but that doesn’t make it any easier for them. Your mom asks how your day was and like the steam exploding from the kettle, you let it all out.

Today, as with most days, you’ve had sensory overload, trouble processing and exhaustion. Now let’s add homework. Homework you hate. This is not because you don’t want to learn, but because you are just so very exhausted. What should take 20 minutes takes two hours. You melt down throughout it and keep on giving up. Schoolwork is always hard. You learn to count your wins and start to understand that you just have to try your best, but it’s so tiring. You have dinner and start to chill back with your family. Then a seizure starts and consumes your night and your family’s night. You fall asleep after the seizure finishes. It’s not just epilepsy; it’s your whole life consumed. Your body and mind are just getting by each day. The next morning you rise and you do it all over again.

To those who don’t get it, would you like to trade shoes with my child? I know I wouldn’t! I would if it would take it away from her, but I can’t. Therefore as a mother I’m fighting not just for you to try and understand, but I’m also fighting for her every day of her life – day in day out, and I’ve been doing it for years and years.

So please, be gentle with my girl and with me. My momma bear with big gnarly claws will come out when you don’t get it, and I can be relentless. This is because I live it each day with her and I must fight for people to understand her so she can get the best out of her education.

My beautiful girl, who from the outside looks like any other child, needs you to know that epilepsy is not all she fights against. If she has to fight against teachers or principals or counselors who don’t understand her, you’re adding to a little girl’s baggage that’s already weighed down by what most of us will never experience in a lifetime.

Thank you for reading my words about my girl, and I hope we never have to raise this issue again.

Yours sincerely,

A frustrated mom

P.S. It’s not just seizures.

Follow this journey on Ragdoll Mummas.

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.

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Watch These Athletes Describe Special Olympics in One Word

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Special Olympics” are two words that make a big impact in the lives of athletes with intellectual disabilities and spectators in the stands. More than 6,500 athletes from more than 200 countries gathered when the 2015 World Games were in Los Angeles from July 25 to August 2, 2015. The Mighty asked athletes from around the world to describe Special Olympics in just one word, here’s what they had to say.

1. Totally awesome! — Matthew Scates (US, Golf)

2. Joyful — Klaus Miller (Finland, Golf)

3. Awesome — Ranveer Singh Saini (India, Golf)

4.  Fantastic.

“A lot of people come together. They meet new people and they all participate in different sports” — Reagan Robinson (Zimbabwe, Golf)

5. Growing.

“It’s the movement of Special Olympics. Its growing by athletes, coaches, volunteers.” — Tess Trojan (Canada, Golf)

6. Awesome.

“You get to enjoy things that you like to do and just go out there and have fun.” — Jennifer Maddox (US, Equestrian)

7. Family.

“Because a very close family receives respect, receives a lot of affection, and a lot a lot a lot of love.” — Natanael Chaves (Guatemala, Golf)

8. Incredible.

“It changed me.” — Viren Mehata (Zimbabwe, Golf)

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Mental Health Recovery Isn’t Always Daisies, Puppies and Rainbows (and That’s OK)

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A lot of folks are surprised when I tell them that, despite having a great combination of meds and coping skills, bipolar recovery, for me, does not look like complete and total stability.

I still have ups and downs, and sometimes those mood swings are more intense than you’d expect for someone who calls this phase of their disorder “remission.” I wallow, and I cry, and sometimes it takes a minute before I’m back on my feet.

I say this because I want people to understand something: There’s this idea that mental health recovery is supposed to be some kind of fantastic, magical place where we never experience a negative emotion ever again. But it’s a myth — and a lousy myth at that.

I will probably always feel more intensely than neurotypical folks do. I will have some inexplicable sadness from time to time. I might find myself anxious about a worst case scenario that I know isn’t going to happen. I may even have to take a day or two off work to get my shit together again.

My recovery has not been daisies and puppies and rainbows. And to my surprise, I’ve found that most recovering folks I’ve talked to have not experienced the puppies or rainbows, either. We’re all just doing our best to cope — we are, by no means “cured.”

One question I get asked often is, “How do I know when I’m on the right track?” We try out so many different coping skills and therapies and medications that we start to get a little lost; our baseline can change so drastically that it becomes difficult to understand at what point we should seek out help and at what point we can call ourselves “normal.”

What is normal for mental health recovery, and what isn’t? It’s a question I think about a lot.

My recovery goals have changed significantly over time. I used to crave a kind of recovery that meant I would never have to think about bipolar disorder or anxiety ever again. But I’m not the poster child for “normalcy” as I’d once hoped I would be, and having had years now to reflect on this, I’ve learned to be OK with that.

What does recovery look like for me? It’s a series of questions:

  1. Do I have enough stability and energy to meet my needs and pursue my desires (within reason)?
  2. Do I feel like I’m in the driver’s seat of my life? Do I feel like I am in charge?
  3. When my mental state shifts, am I riding the wave or do I feel like I’m drowning?
  4. Am I able to cope effectively when confronted with a stressor? What do I do when I’m stressed?
  5. Am I in survival mode, or do I feel like I’m truly living my life?

Ideally, I’d bring these questions to someone who is involved in my recovery to talk it out – whether it’s a partner, a best friend, a therapist, a doctor, a healer. I need to bounce my answers off someone who can help me think through them and let me know if they’ve seen red flags I haven’t.

What does my mental health recovery look like right now? Here are my answers:

Lately, I’ve had enough stability and energy to meet my basic needs. I’m able to perform at my job, make myself food if I need to, get myself to appointments, and I’ve been showering regularly (for those of y’all who have lived through it, you know how big of a deal that is).

I also have enough energy to pursue my desires – I’ve been applying for better-paying jobs, going out with friends, taking on new work responsibilities, seeking out new volunteer and travel experiences and finding a lot of satisfaction in the activism that I’m doing.

I feel, for the most part, that I’m in the driver’s seat; when a mood shift happens, I feel like I’m very much on top of that wave. When I’m stressed, I have plenty of ways that I can deal – Netflix, coloring books, talking through it with my partner, going for a walk, reading a book.

And now more than ever, it feels like I’m living a life I’m proud of, instead of surviving within a life I don’t want to be living.

So for me, my bad moods lately are more like bugs. I still have mood swings, but they are more like your common cold – annoying and sometimes messy, occasionally so much so that I need a few days off – but not-all-consuming, infrequent and nothing I’m worried about.

Do your episodes feel like an ongoing disease you’re battling or like a bug you pick up from time to time? There’s a big difference between a disease and a bug. Namely, the impact, the frequency and the severity.

Who knew that figuring out if we’re healthy could be so complicated? Physical health might be less complicated for most of us because we have a baseline we’re familiar with. But when it comes to navigating mental illness, sometimes we aren’t sure what an acceptable baseline is if we’ve never actually experienced one before.

I spent the longest time unsure of when I could call myself “recovered” because I couldn’t remember the last time I was mentally healthy, if I ever was. Not to mention, there weren’t many resources that could confirm what “recovery” feels like.

When you have no sense of an acceptable baseline, it results in creating unrealistic expectations – that we’ll never feel intensely about anything, that anxiety is a thing of the past, that we’ll be able to get out of bed every day with a spring in our step.

You’re not Mary fucking Poppins, OK?

Are you setting up some of those expectations? Because it’s time to let them go.

I can accept my sensitivity, my moods and my intensity, as long as it still feels manageable. This is subjective to some extent and scary, too, because mental illness often teaches us not to trust our instincts. But here’s the bottom line: If it isn’t disruptive, dysfunctional or distressing, it’s likely just part of the process.

It was a relief when I realized that mental health recovery does not always look like complete and total reformation. Sometimes there are bumps in the road, sometimes there are hiccups – it doesn’t mean you’re back at square one.

After all, a mental health crisis can be traumatic – and even after we’ve leveled out, there’s still trauma to unpack and deal with.

The fun never ends, right?

Let go of the expectation that you should be aspiring to some kind of “normalcy.” Because, hey, there are plenty of repressed folks who would swear up and down they feel “normal” until you get them to start talking. There are lots of “normal” people who wait until the divorce to fall apart. Appearances aren’t everything.

I promise you, “normal” is really deceiving.

Give yourself permission to have ups and downs; give yourself permission to still have “issues.” Give yourself permission to be a flawed, confused, and feeling person. As long as you’re in a space where you can deal with it in a way that doesn’t consume or harm you, I’d say you’re doing just fine.

The reality is – pardon the cliché – that recovery is a journey and it’s not a destination.

It’s especially not a destination that resembles a tropical island or a luxurious resort.

It’s OK to be unsteady. You’re not doing a “bad job” at recovery and it’s not a “setback.” It’s all part of the process, and it’s totally, 100 percent fine. Every journey that’s worth being on is a little messy. Take it from somebody who knows.

Follow this journey on Let’s Queer Things Up.

The Mighty is asking the following: Tell us a story about a time you encountered a commonly held misconception about your mental illness. How did you react, and what do you want to tell people who hold his misconception? 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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You Need to Hear This Former NFL Player’s Speech About Mental Illness

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During his Pro Football Hall of Fame induction ceremony, former NFL player Charles Haley spoke up in a moving and humorous speech about a part of his career previously left in the shadows — his mental health.

“I walked into the league a 22-year-old man with a 16-year-old inside of me screaming for help, and I would not ask for it,” he says in the video below.

Haley, a former linebacker and defensive end for both the San Francisco 49ers and the Dallas Cowboys, had unaddressed bipolar disorder throughout his 13 seasons of professional football. Despite his success, which included a record five Super Bowl wins, he said his life was spiraling out of control.

“But today, guys, I take my medicine every day, and I try to inspire others to do the same. Because I finally listened,” he said.

Recently, more NFL players have been speaking up about the prevalence of depression among retired football players. In a 2010 study of 34 ex-football players, nearly a quarter were diagnosed with depression. Haley hopes to inspire younger players to address these issues as soon as they arise.

“The only way that you can grow is that you’ve got to ask for help,” Haley said.

Watch Haley’s full speech in the video below. He starts talking about mental health issues at 3:18.

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5 Reasons My Autism Makes Me an Awesome Dad

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My wife and I have three beautiful boys. When I was diagnosed with autism spectrum disorder (ASD), I was worried about whether or not I had been a good dad to my children. Recently, our oldest son told a friend how much fun he was having with me while his mom and brothers were out of town. I was totally shocked to hear this because, quite honestly, I’m not all that outgoing, social and, well, fun.

Then it dawned on me that there are at least five reasons why my autism actually makes me an awesome dad:

1. Routine

My autism causes me to stick to routines. I’m pretty predictable, but that’s what makes me an awesome dad. Our kids know what to expect from me, and they know what I expect from them. Our relationship is transparent and authentic because of that. Most of all, they know they can always count on me because their dad is consistent.

2. Repetition

This may sound like number one, but let me explain why it’s different. I often repeat myself — a lot. It’s a part of my autism, and I especially do it when I’m passionate about something I’m discussing. This works for my kids because I don’t mind saying the same things over and over. And if you have children, then you know that repeating yourself is a huge part of the job. Bottom line, our kids see me as patient because I repeat things to them until they learn it. With Dad, they don’t feel pressure to get it right the first time.

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3. Resilience

I have a tendency to get really focused on whatever I’m engaged in, and I’m compelled to complete whatever I start. This sends a great message to our kids because they’ve never seen Dad quit anything. I recently graduated with a doctorate degree in four years despite having major surgery, relocating, seeing my wife go through major surgery and having a major employment transition while working a full-time job and being a full-time dad. My boys see that Dad doesn’t quit, and they admire it so they don’t quit either.

4. Reflection.

I’m not overly social, so it’s fairly obvious to my kids that Dad needs some alone time every now and then. Rather than take it personally, they see my need to retreat as a need to reflect. They see Dad as a thinker, someone who takes time to process so they’re learning to become thinkers, too. Ultimately, they’re learning to make good choices because they’re learning to think and reflect first before acting and speaking.

5. Reading

I wasn’t a very social kid growing up, so I took up reading in order to substitute for my lack of a social life. To this day, I’m still an avid reader. My kids see Dad reading all the time, so they love to read, too. As the saying goes, “Leaders are readers.” Every day, we see them learning how to become young leaders.

Our kids don’t necessarily know that Dad is on the autism spectrum. They just know that Dad is a little different, but I’m glad the fact that I’m different is making a positive difference in their little lives. It makes me grateful for the opportunity to be their dad with autism, and I look forward to seeing them grow up.

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