To My Younger Self: Please Don't Fear Your Uniqueness

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Dear Me, so bright-eyed and bushy-tailed:

Wild child who can’t sit still, full of joy, bouncing off the walls. Yes, you are strange, but please don’t fear your uniqueness. Be you; don’t grow bitter. Stay strange and amazing.

You have so much potential. Yes, your mother is right — you are smart. Stop believing when people tell you otherwise.

It’s OK that you don’t need people. That makes you independent, not defective. You are not cold and robotic; you are calm and logical. Yes, you do things differently, but someday this will be your strength.

The people who picked on you — it was them, not you, who had the problem. Bullies are often insecure and in pain on the inside, lashing out to make themselves feel bigger. Don’t be like them. Stay kind.

Silly girl who talks to the animals and trees. Never stop. Don’t worry about what other people think of you. You are perfect just the way you are.

With deepest love,
Me

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3 Travel Tips for Families of Children With Special Needs

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Traveling can be one of the most stressful situations children on the autism spectrum can find themselves in, trapped on an airplane for however many hours with no place to escape if a meltdown ensues. For our family, if the destination doesn’t include a beach, it is frankly not worth leaving home. In the winter, this necessitates airplane travel. In the spirit of setting my son up for success, when we board an airplane, we try to make sure the destination we choose will be as relaxing and enjoyable as possible for our whole family (we have four kids!), even if the journey doesn’t prove to be so.

Here are a few travel tips we have learned along the way:

1. Whenever possible, we fly Jet Blue. Jet Blue teamed up with Autism Speaks to do multiple “Blue Horizons for Autism” trainings with their staff and children with autism at airports around the country, and they go out of their way to help families with children with special needs. They walked my family directly to the front of the mile-long security line the last time we traveled. Not to mention they have TVs in the back of each seat. I will happily watch four hours of “Peppa Pig” if it means quiet, happy children.

2. Bring a bag of your child’s favorite fidget toys/video games/snacks on the flight. And maybe include some new versions they haven’t seen before for novelty’s sake. And if you think your child will need it, consider sending a box from Amazon.com filled with toys/art supplies, like Wikki StixPlay-Doh, and markers, that are disposable and will keep them entertained while at your destination.

3. Rent a house or apartment. There are so many options on TripAdvisorAirbnbVRBO and Kid & Coe that can help you find child-friendly homes at all price points for your family in beautiful destinations around the world. Luxury resorts like the Four SeasonsAuberge Resorts, and Como Hotels and Resorts provide the option to have accommodations like a home but with access to all the amenities the hotel offers. And Smith & Family is a site dedicated to family travel that is completely kid-friendly.

We do this because…

You can bring or shop for your own food. This can be especially helpful for picky eaters and toddlers, and you don’t have to go through three expensive meals a day in a restaurant with kids who won’t/can’t sit still.

Make some noise! You don’t have to worry as much about noise control in a house. Who wants to act like a librarian in a hotel with kids, shushing them all day and night for fear the manager will show up at your door? In a rental home, your kids can make as much noise as they want!

Save some money. If you have a bunch of kids, a house or apartment can actually be more cost-effective than multiple hotel rooms; ditto if you are traveling with more than one family.

Have fun during downtime! After a day of swimming at a beach or pool, or playing in the snow depending on your holiday destination, often there are still hours of the day to fill — that time between dinner and bedtime, etc. Even the smallest house has more space for downtime than a hotel room. Keep in mind, of course, even during what you may feel is a “travel disaster” — meltdowns, kids are making too much noise, stealing french fries from a stranger’s plate or somehow ending up on a moving luggage conveyor belt (this all really happened to me!), etc. — can lead to “teachable moments.” Other parents and children can learn tolerance, so keep your cool if people stare and try to be the light to let your child shine as much as possible.

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When I Struggle With Cognitive Empathy as Someone on the Autism Spectrum

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This is a very hard article for me to write, but I think it might help others in the same situation as me. Until my diagnosis as autistic, I was so scared I would be seen as something evil if anyone ever found out I have this “deficit”; you see, I have a problem with cognitive empathy, what is also known as theory of mind. I have a problem putting myself in other people’s “shoes.”

Let me say unilaterally and profoundly — not only to help myself, but to help those reading this with the same problem I have — having a deficit in cognitive empathy is not something you should be angry at yourself over, scared of, hate yourself for, or that makes you a bad person.

My cousin unexpectedly passed away a few weeks ago. I was not close to her, but I was very close to her older sister. Her sister came over to tell me in person and started crying, and I wrapped my arms around her. This may sound bad, but for me, due to my deficit causing more problems than normal, my brain defaulted to the social script/rule. Now let me mention, this problem happens less frequently now than in the past, because for one, I have enough experience to be able to match up automatically what others are experiencing and what I have experienced in my life, and two, I generally don’t put myself in situations where much if any cognitive empathy is required. However, when my cousin came over, I ran into the problem again: I could not put myself in her “shoes,” and I needed to.

This is a type of empathy that some of us on the spectrum can have problems with. Many of us can empathize with your emotions; in fact, some of us can do it too well, feel your emotions too much. I have a strong empathetic reaction to people displaying a strong emotion, or characters in movies. However, the type of empathy I am talking about, cognitive empathy, where we can see something from others’ perspectives is where a few of us can have a problem. There is a difference between the two, although many people might not realize that, and this may be why some people say those on the spectrum have no empathy.

I don’t do that well at understanding nonverbal communications anyways; throw in the issue with cognitive empathy, and all I can understand is she is crying and the emotions that typically go along with it, which gives me 20 percent of the information I needed to understand what was going on. Normally, this would not have caused an issue; normally, I don’t have reasons to put myself in someone’s “shoes.” But here, I felt I must to be able to best help her. I have lost both my parents, but that is different; I have lost grandparents, but that is different. I had no scripts, social rules or experiences that would allow me to be able to see this from her perspective, which made me very distressed and confused.

In situations like this, not only is the other person having problems, but for those of us with deficits in cognitive empathy, it can also be a scary and extremely confusing situation. Oftentimes, we may know we should be able to see it from their perspective, but we can’t. I know she must have a perspective, and if I could see it I might be able to better understand what to do to help her and how to react. Instead, all I had was a confusing blank inside of her, a flashing cursor. After my cousin left, it took me a little while to stop hating myself, to stop deriding myself as a horrible person for not having a “normal” ability, to stop being angry at myself for not being able to understand her. In situations of deficits, I’ve found many people direct large amounts of self-hate at themselves where a deficit is seen as interfering, especially with something important. But I am starting to realize and accept that having problems with cognitive empathy is OK. I am not perfect; neither is anyone on this planet. If we have a problem putting ourselves in someone’s “shoes” we do, and we should not beat ourselves up over it. We all have strengths that may give us unique abilities and insights, but we also have deficits, and those deficits are not the whole of our definition. We can work to lessen their impact on our lives by developing good coping skills and accepting the deficits.

A benefit to getting older is I have built up a library of scripts. It is how I survive, pass, function. I also have coping skills I have developed over years, like avoiding situations where something I have a deficit in is required or likely to happen. However, no matter how hard we may try, how many scripts we may have, how many rules may be in place, and how many experiences we can reference, there can still be times when we will have to say or do something despite our deficits that we are not ready for.

I was lucky; I think I did OK, just holding, listening and supporting her, basically, just being there for her.

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The Day I Found Out Nothing Was ‘Wrong’ With Me

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For most of my life, I’ve thought something must be “wrong” with me. I was fortunate enough to be formally diagnosed with autism spectrum disorder about a year ago. It’s something that was talked about when I was a child, and that I’d considered as an adult, but a formal diagnosis seemed to snap everything in to place. The puzzle was solved. I even celebrated.

Nothing was or is “wrong” with me. I’m simply a less common neurotype. Awesome. I started to make new autistic friends, relate to others more easily, make my own sensory toys, and more. I couldn’t thank my therapy team enough for finally solving this mystery. I can only laugh now, thinking about all the things I thought might have been wrong with me. Not that any of them were truly funny.

Some people may consider an autism diagnosis a bad thing. If that is you or a loved one, I encourage you to seek the positives about being autistic and try to make new friends, even if only online. It has had a huge impact on my self-esteem. My therapist reminds me of how much it’s increasing. Speaking of therapists, I also recommend you find a brilliant one. I’ve seen many and finally found the one for me. And I don’t have to pay top dollar to see him — he’s at my local mental health clinic. I see autism as something to learn to accept if you don’t, and hopefully learn to be proud about! Good luck to you!

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A Promise to My Son on the Autism Spectrum

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To my beautiful son,

I need to explain to you why there might be times you think, feel, see and hear differently than others. You see, son, you have something called autism. Sometimes this might affect your experience of certain places, textures, foods, lights, sounds and clothing. At times these things may be very overwhelming for you. Your senses are stronger than most, so lights are brighter, sounds are louder, and you feel things stronger.

Because you think and see things differently, it gives you amazing qualities. You are advanced in math and music, and you have been able to read since early preschool. You can understand how mechanical equipment works, and you understand computers better than I do.

Autism might bring challenges at times, but know that if there are difficult times, Mama is right here — I’ll help you. And during good times, I will be right here cheering you on. Together we’ll celebrate all of your successes. Together we’ll find coping techniques for you when you need them.

Son, I want you to know that autism doesn’t define you as a person to me. You have autism and it may only be a small part of you, but it’s a part of you I want you to learn, understand, accept and embrace. I will do everything in my power to help you succeed. I promise never to underestimate your abilities and never to stop fighting to ensure you have everything you need to succeed. I promise to be there for you every time you need me to be, and I promise to stand by on the sidelines cheering you on when you need to do it all on your own.

I promise, above all else, to always love you unconditionally. Please know that you are loved, you are wonderful, you are beautiful, you are smart, you are special, you are talented, you are brilliant, you shine, and you are my world. I cannot possibly list all the amazing qualities you possess because the list is never-ending. You are doing amazing, you are amazing, and you will always be amazing. I just love you.

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10 Things I Wish I Knew Right After My Child's Autism Diagnosis

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Receiving an autism diagnosis for your child can be life-changing. Even if you already think your child might be on the autism spectrum, actually hearing a qualified medical professional say those words might make everything move in slow motion for a second or two. In my experience, the words reverberated around inside my head. Autism. Autistic. My child is autistic.

And then the questions begin. Only by then, there’s no one to ask. We were given a few leaflets and websites and sent on our merry way, blinking into the rising sun of the dawn of our new lives. We had questions about how this would affect her schooling, how it might hinder her speech development (already delayed, but offered no extra help with it), and who could we speak to if we had any more questions. We never really got the answers to these.

But, the answers I really wanted to know were more personal. How will it affect her future? Will it change us as a family? How will we cope? We’re only around 20 months into our post-diagnosis journey, but if I’d have known then what I know now, it might have just seemed a little less daunting. Here is a list of things I wish I’d known right back at the start…

1. It will be OK! I would have loved someone to tell me this in those first few minutes. I probably wouldn’t have believed them at that moment, but to know that it had been said and to be able to pluck it from my memory when needed would have been useful. It can take time to come to terms with a new diagnosis, but, for all the ups and downs that might happen, it will be OK. It’s nothing to be scared of. When you stop to think about it, it’s words on a piece of paper. Use those words to make you stronger. Use those words to get the things your child needs. Be empowered.

2. Making decisions might get harder. I’ve always been useless at making decisions; I’m a real fence-sitter. I am always trying to second-guess myself and others, and I’m not good at trusting my gut instinct. Now I have a child with additional needs, I find making important decisions even harder. Choosing the right school? It’s not just about inspection reports and a “nice atmosphere” like when we were looking for our son. Now we have to consider facilities, therapies, suitability to meet her needs, what support they can offer… the list is extensive. Decisions made for a child with special needs are often big ones and can be hard to change if it doesn’t feel right. Lists of pros and cons have become my friends!

3. The diagnosis is not a magic key. People often say that having a diagnosis is the key to getting support and services for your child. Yes, having those words written on official-looking documentation means that there are more options open to you, but you might still have to fight to get these at times. Diagnoses are increasing, but funding isn’t necessarily increasing. Service providers are limited in exactly what they can give, and several families will be fighting for attention. Waiting times are long, appointments scarce, therapies lacking. You will need to shout, and shout loud.

4. I’ve learned more about me. I used to think parents of kids with special needs were superheroes. And they are. But, guess what? They’re just parents, doing what parents are meant to do. They take care of their kids. They do everything parents of “typical” kids do, albeit in a different way, more often than not. Feeding might be through a tube rather than on a plate; potty training might come a few years later than the “norm”; the sleepless nights may well continue well past the baby stage (and may never end!); schooling may be at home; socializing might be in special group settings… Some children need constant care, 24/7 and their parents just get on with it, because, well, what else can they do? And I have learned that I can do this. Even in the times when it feels as though I can’t, I can! I have amazed myself with my resilience at times. I am growing a thicker skin and a louder voice, because we have to make ourselves heard.

5. How fiercely protective I am. I always have been and always will be protective of my kids. But now I am a Mama Bear. Mess with my kids, you mess with me. ‘Nuff said.

6. My daughter will still grow and change. Yes, some things might be delayed, or maybe not happen at all, but she will carry on growing and developing, just as other children will. Her personality will develop, and I believe she will continue developing a great sense of humor and continue being loving, affectionate, and at times demanding. Because guess what? She’s a kid!

7. I wish I had known just how loved she would be, not just by our own family, but by others — teachers, friends, other children. One of my first thoughts was that she might never make friends and, while it seems to me like she might not understand the concept of friendship yet, I just know that eventually, she’ll be just fine.

8. I’ll find new friends. Before diagnosis, you might know one or two other people who have a child on the spectrum. But once you start looking, there’s a whole other world of people in the same boat out there. I find being sociable quite tricky, but I’ve forced myself to get out and go to some support groups. I’ve found new friends online — and, even though I might never meet them in “real life,” I do consider them friends. I can talk to them about things I can’t with my “real life” friends, because they just get it. I’ve even grown some sort of community of my own through my blog and Facebook page. Other parents ask me for advice! You might need to look for them, but they’re out there — your tribe.

9. She will always amaze me. I often find myself sitting and watching her, playing, singing, sleeping, and I wonder to myself how we created this amazing little being. Yes, her brain is wired a bit differently, but how cool is that? The world needs people who think differently, who are different. No matter what, she will always be amazing to me.

10. It’s what makes her, her. I get that some people wish there was a “cure” for autism. I get that life can be tough, and that as parents, we don’t want our children to experience difficulties. But, for me, to take away the autism would be to take away my child. For me, autism isn’t something she has, it’s something she is. It’s a part of her. She’s living in a world that isn’t geared towards her; it’s not her that’s wrong! If she was “cured” of her autism, she wouldn’t be her. I love her just as she is.

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10 Things I Wish I Knew Right After My Child's Autism Diagnosis
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