4 Tips for Concerned Parents of Kids With Disabilities

Having a twin brother with autism has inspired me to study Family and Child Sciences at Florida State University and pursue a career in Disability Services/Education. I am specifically interested in a focus on the individual’s life after high school and how he or she can experience successful and positive outcomes.

Over recent years, I have watched my parents discover new options for my brother that they wish they had known about in the past. Having a child with a disability doesn’t come with an instruction manual, so I am writing this letter to parents in hopes that they will be able to relate and understand that there are opportunities available for their children.

To the Concerned Parent of a Child with a Disability:

Having a child with a disability can provoke so many thoughts and questions. Having fear or worry about who your child’s therapist or pediatrician will be, all the way to what your child’s living arrangements will be years down the road, are definitely some of the common concerns among parents. There is never any way of knowing what the future holds for your child, but there are a few smart ways to be prepared.

1. Put away whatever cash you can for a “rainy day.”

Even if it’s only five or 10 dollars a week, that savings will go a long way. For example, your child may need a change in medication or a new wheelchair as he or she gets older. Your child might be interested in college after high school. Changes can be very costly, so it’s important to keep all of the possibilities in mind.

2. Join support groups and attend disability-related conferences and workshops.

Hearing the experiences of other families and discovering resources that you didn’t know were out there can change your child’s life. For example, there are unique classroom learning options in public and private schools that can benefit your child’s education (such as the McKay Scholarship Program and Individual Education Plans).

Being knowledgable about your child’s disability and learning how to manage it in the best way possible is not only in the best interest of your child, but of your entire family as well.

3. Physically map out the future (think diagrams and lists).

Even if your child is an infant, it’s never too early! Draw out a diagram or make a list if you have to. Think about the goals that you’d like to reach together and at what point you’d like to tackle them. If you have a daughter, for example, consider how you will help with her menstruation cycle when she becomes a pre-teen. Take note of the traits that you’d like your child’s future trustworthy respite care worker to have. Research employment options for after your son or daughter graduates.

4. Plan for future care.

Does your child have a sibling or other family member that can step up and take the responsibility of caring for him or her a long way down the road? Is the group home a viable option for your child’s future housing situation?

If all of these decisions seem overwhelming to you, always remember that you are not alone. Your child is beautiful in every way and appreciates your every move. Even if your child has a difficult way of showing it, he or she is so fortunate to have such a loving parent like yourself. I am currently the legal back-up guardian to my twin brother with autism and all of these factors are constantly on my mind.

My parents have gone above and beyond to make sure that my brother, Dan, has received the proper services and been given opportunities for success, equally to his typical peers. He is now a caricature artist at fundraiser events and conferences. Just remember that it’s never too early to get a head start for future plans.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability 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.

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12 Great Things to Say to Parents of Kids With Autism

If you have a child with autism, then you know that there are good days and bad days. You have days where autism takes a back seat and days where autism is not only sitting up front with you, it’s in the driver’s seat.

Last week was one of those autism-is-in-the-driver-seat kind of weeks, so I lashed out a bit. I gave you all a list of the sometimes insensitive, rude and ignorant comments said to me as a mother of an autistic child advising you on what not to say to mother of a child with autism. I won’t apologize for my words because, well, last week I needed to say them and it felt good… really good.

But now I realize that it wasn’t fair to tell everyone what not to say to a parent of a child with autism, if I don’t give some advice on what to say.

Just like every child is affected differently by an autism diagnosis, each parent is also affected differently. A comment that I believe is kind and encouraging, another parent may see as rude and condescending. Needless to say, I can’t give you an exhaustive list since every situation is different, however, I have come up with a few things people have said to me over the years that clearly left a mark and not a scar. So, this is a list of things to say to a parent loving a child with autism that made me smile and want to hug them rather than hit them or scratch their eyes out.

The one thing to remember, regardless of the child or the parent, is to always be accepting, be aware and be kind.

1. “Wow! I can’t believe how far he has come!”

Even if the distance from where he was to where he is seems miniscule to you, chances are it is a huge, expansive distance to my son and me. Commenting on progress is a beautiful thing to say, but only if you really see progress or change. We mothers are like dogs; we can smell your fear in an off-handed, don’t-know-what-else-to-say remark. So if you do believe it, then say it. And be prepared to be hugged.

2. “He is so good at… [insert anything here].”

Whether it’s a perfect Jim Carrey imitation, how long he can sit watching the same episode of “Thomas the Tank Engine” and recite every word perfectly, or his ability to memorize all the details of every earthquake in California’s history, point it out. Point out the positives. See the positives. We see it. We know it. We love when you do, too.

3. “My friend’s, sister’s, cousin’s, great aunt twice removed’s son has autism and he is in college now.”

Yeah, we know that your friend’s, sister’s, cousin’s, great aunt twice removed’s son is not our child, and we know that autism is a spectrum of strengths and struggles, but, hearing success, hearing good news and having you share that in a kind, accepting and compassionate way, makes us love you, even if we don’t know you. I hope you like hugging strangers, because this may get you an even bigger hug than #1.

Boy sitting on the grass next to big orange pumpkins
Kathy’s son sitting on the grass next to pumpkins

4. “Is there anything I can do to help?”

Asking this question in the middle of aisle six in the busy, loud grocery store where our child is currently having a huge sensory meltdown as we try to calm him down and discreetly scooch the glass shards from the spaghetti jar that just missed your head under our cart, rather than staring at what you believe may be an “undisciplined child” having a temper tantrum, may possibly make you the hero in a blog story that goes viral on social media three hours after you get home from the grocery store.

We know people are staring. We know people are judging. We know people don’t get it. That’s why those eight simple words from just one person are beautiful. Oh, and sorry about the spaghetti sauce on your new shoes.

5. “He feels so much, doesn’t he?”

This is a kind, compassionate and understanding way to say that when you see our child crying easily, melting down regularly, and being terribly inflexible, you are letting us know that you recognize that there may be more than meets the eye and that our child is not bad, and neither are we.

6. “He is fascinating.”

Not weird, not odd, not quirky. The way his mind works is fascinating and often has me in awe and wonder. I love knowing that you see his mind as extraordinary and not as something that is broken and needs to be “fixed.”

7. “He really loves you.”

Yes he does. There is such a misconception that children with autism don’t feel love, that their emotions are too bogged down to “feel,” but, believe me, they feel love, they know love, they give love. And on days when it’s hard, on days where we have lost our patience, raised our voice and dried countless tears, we don’t feel very lovable, so it’s great when others see and feel that love, too. We know that our child loves us like no other and although that love may look “different,” it is never to be trivialized or minimized.

Boy wearing Luigi costume on steps of house in front of a pumpkin pail
Kathy’s son wearing a Luigi costume

8. “I wonder what he is thinking?”

O.M.G. If you only know how many times a day I have wondered the very same thing. “If only I could get inside his head,” “If I only knew what he was feeling,” “If only he would let me in” has crossed every parent’s mind countless times. Knowing that you take the time to wonder, too, well, you have just gone up higher in rank on the Favorites list on my iPhone.

9. “What is autism and why do they call it a spectrum?”

Yes, maybe we are tired of talking about autism, maybe we want people to see past autism and just see our child, but, we will never turn down an opportunity to educate someone about our child and debunk the “He doesn’t act like ‘Rain Man’” myth. So please, ask away.

10. “He has taught me so much!”

These kids see the world differently and if you take the time to get to know them, really get to know them, you will open your mind and your heart to their world and you will be better for it.

11. “I brought wine.”

Even though you might not fully understand what loving a child with autism is like, the fact that you are here, on our doorstep, holding a bottle of wine and trying to understand, well, there are no words to express our gratitude. We love that you feel like we are in this together, so grab two glasses while I get the bottle opener.

12. “I have Velveeta Shells and Cheese (or whatever the one and only type of food is that child will eat).”

You win. Game over.

When trying to decide what you should say, keep in mind that these children and adults with autism may have severe language deficits and they may not be able to say a word, but that does not mean they aren’t communicating with you. Take their lead. Maybe no words are necessary. Maybe you don’t have to say anything. Maybe it’s just a kind smile, a door held, making eye contact with us or a kind “hello” to our child.

However, if we initiate the conversation, if we say the words, “My son has autism,” just give us a knowing look, a kind smile and ask, “How is he doing?” We may say “fine” or we may break into a 10-minute long discussion about how far he has come and how far we know he will go. Whichever it is, trust me when I say, we will always remember that you asked.

A longer version of this post originally appeared on The AWEnesty of Autism.

3 Things I Wish the World Understood About My Autism

I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully.

I can explain, bemoan and wish away a lot of things about me and my autism: my troubles finding the right words to say what I really mean, my social processing lag and limits, my rubbery facial expressions, my anxiety, my sensory system’s dysfunctions, my brain’s tendency to get stuck in physical self-destruct mode and land me in the ER. I can complain about the suckiness of being socialized and educated as an autistic and as an outsider, about lack of supports and understanding and always needing to educate.

One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.

But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy. And then you get to flap. You get to perseverate. You get to have just about the coolest obsessions. (Mine are sudoku and “Glee.” I am not ashamed.)

Now, maybe you do not understand. Because “obsession” and even “perseveration” have specific dictionary and colloquial meanings which everyone uses and understands and which do not even come CLOSE to describing my relationship with whatever I’m obsessing on now.

It’s not just that I am sitting in my room and my heart is racing and all I can think about is “Glee” and all I want to do is read about it and talk about it and never go to sleep because that would take time away from this and that has been my life for the past few days. It’s not just that I am doing sudokus in my head or that I find ways to talk about either numbers or “Glee” in any conversation, including ones about needing to give a student a sensory break so he’ll stop screaming and throwing things.

(It’s not just the association and pressure of shame, because whenever an autistic person gets autistically excited about something, there will be people there to shame and bully them, and some of us will internalize that shame and lock away our obsessions and believe the bullies and let them take away this unique, untranslatable joy and turn it into something dirty and battered.)

It’s not any of that. Those are all things neurotypicals can understand and process. This goes beyond that. It’s not anything recognized on the continuum of “normal.”

It’s that the experience is so rich. It’s textured, vibrant and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear.

It is beautiful. It is perfect.

I flap a lot when I think about “Glee” or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

This is the part about autism I can never explain. This is the part I never want to lose. Without this part, autism is not worth having.

Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands just so amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered “acceptable happiness” that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day.

It takes a million different forms. A boy pacing by himself, flapping and humming and laughing. An “interest” or obsessions that is “age appropriate”—or maybe one that is not. A shake of the fingers in front of the eyes, a monologue, an echolaliated phrase. All of these things autistic people are supposed to be ashamed of and stop doing? They are how we communicate our joy.

If I could change three things about how the world sees autism, they would be these:

1. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel.

2. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate,” stop shaming and gas-lighting us into believing that we are never, and can never be, happy.

3. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.

This is about the obsessive joy of autism. So I guess, if I’m trying to explain what an obsession (and, by necessity, obsessive joy) means to me as an autistic person, I can bring it back to the tired old image of a little professor cornering an unsuspecting passerby and lecturing them for half an hour. All too often this encounter is viewed through the terrified eyes of the unwillingly captive audience.

I’d like to invite you to see through the eyes of the lecturer, who is not so much determined to force their knowledge into you as they are opened to a flood of joy which they cannot contain.

And why would you want to contain something like that?

This post originally appeared on Just Stimming.

parent holding young daughter

I Felt Depleted After Her Diagnosis. One Little Moment Supercharged Me.

I’m an associate researcher specializing in autism spectrum disorders. I’m also the father of a little girl who was diagnosed with childhood autism back in 2009. Shortly after her diagnosis, I decided to dedicate my career to understanding her illness. Since then, I’ve learned that some things are just impossible to fully understand.

When my daughter was born, I remember thinking — like most new parents — that she was the most beautiful and perfect baby that I had ever seen. But within a few months of taking her home from the hospital, her mother started to express concerns. Our daughter was happy as a clam, but something felt off.

black and white photo of young child smiling at camera

At 10 months, she was late sitting-up and she preferred to taste her toys rather than play with them in an age-appropriate way. Doctors said that we needed to relax — she was a little behind in her development but still within the normal range.

They say that parents know their kids best. By the time our little girl turned 2, our gut feeling intensified and we knew that something was wrong. So I did what most people would do in that situation — I turned to the Internet for answers. I wasn’t exactly a child expert, to say the least. She was my first and I had barely even held another baby! So I was oblivious to the telltale signs that were all over the Internet: dislikes cuddling, refuses to be held close, uninterested in others… That was not my darling girl.

The day after her third birthday, we took our daughter to the hospital. There was something about the milestone of her birthday that intensified our suspicions. She refused to do the Baley Scales of Infant Development assessment and was diagnosed with an autistic disorder (at that time called childhood autism) later that week.

I remember standing in the clinic, trying to breath, thinking “OK. Here we go.” We knew all along that something was off — and in a strange way (I find this difficult to acknowledge) the diagnosis came somewhat as a relief. At least now we could start moving forward.

It wasn’t easy.

Even though I initially accepted the situation, I felt that my life was falling apart. What did it mean? How would we cope? What next?

A few days after the diagnosis, I was standing in the kitchen preparing a snack for my daughter. It was a day like every other day before the diagnosis, only I felt depleted, like an empty shell. Then it happened: I looked down at her sitting on the floor and she smiled at me. That was it. My eyes began to well up. My heart melted with joy like it always had when I would see my baby smile.  I realized that she hadn’t changed. I had.

At that moment, I decided to fight for our daughter — to make sure that she received the best possible interventions available. We’re still championing her…  And life is good!

parent holding young daughter

About a year after her diagnosis, I felt supercharged. Wanting to help not only my daughter but other children with autism, I started and finished a Masters Degree in Autism Spectrum Disorders. Within a few years, I began to work as an Assistant Professor at UiT – The Arctic University of Tromsø and later still, as a Visiting Associate Research Scientist at Yale University.

Over the years, I tried desperately to figure out why my little girl has autism. We ran genetic tests and brain scans with no result. This was, in fact, a good thing because then you know there are no restrictions on learning processes except for the diagnosis itself. I may not be able to understand the why — but that’s OK. In some ways, I think it’s made me a better researcher. My focus now is on improving the lives of children with autism spectrum disorders. Specifically, I look at how technology can help build relationships between children with autism and the people around them.

About a year and a half ago, I started talking with Kim Arthur, a founding team member at PlayFish, a mobile gaming company bought by EA Sports. He then introduced me to Katrine Gulstad Pedersen, a special needs educator who was already manipulating apps to use with her students, and Stian Hansen, a software engineer who can build anything. When Kim, Katrine, Stian and I decided to found Superplus, it felt like a natural extension of my research.

Our collaboration means that the science can actually be put into practice — Superplus can be used by parents and special needs providers to help children with special needs cope with everyday life. That’s why I love my job. It makes a difference in the lives of regular families — just like mine.

father and daughter sitting on couch and looking at ipad

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When a Stranger at the Airport Reminded Me I'm Not on My Journey Alone

Autism, sometimes you make things a little more difficult. Sometimes you make things downright hard.

An airplane trip isn’t simple, for example. It requires planning, as do vacations, etc.

I’m a true believer that autism is just a part of who I am. It’s what helps make me, well, me! But I must admit, during the hard moments, it’s hard. It’s hard to not be frustrated with you, autism, and the challenges that come with you.

Like when I don’t feel well and can’t explain what hurts or how it hurts. When I sit at the doctors’ office, looking helplessly, and saying, “It hurts, it hurts.” I don’t expect you to magically know the answer, but sometimes I wish you could read my mind. When I walk through airport security and am scared by the security machine and a pat-down can cause me to flinch and scream loudly. When I reach my limit and scream. When the whole airport turns in our direction… I wish it was easier sometimes.

But you know what? I’m reminded of how far I’ve come. I’m making progress each and every single day.  Not every day can be easy, but the good moments out-number the bad. I have a family and friends who love me, and believe in me, and therapists who believe in me and are there to tell me they are proud of me.

A moment not too long ago, after a long traveling day, aircraft trouble and missing our connecting flight home, even my best attempt at holding it together only lasted so long. I screamed and started to cry. Within a few moments, I was calm again. A mom, her son and her husband had been traveling with us all day, and were standing near us in line to rebook our flight when I screamed. LOUDLY.

My mom asked their son if I scared him, to which I said I was sorry and didn’t mean to scare him. His mom looked at my mom and me and said it was okay, not to worry, her friend’s daughter had autism. Then — and this moment will stay with me forever — she told me she thought I was doing a great job, and I could tell she meant it.

So often we are judged, and people stare or comment, but this other mom didn’t do that. I had just screamed so loudly that a large section of the airport could hear me, and she told me I was doing a good job. Sometimes a good job is simply trying your hardest and giving it all you’ve got. I’m always reminded that I’m not on this journey alone. Thank you, autism, for continuing to teach me so much about life.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

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I Told My Partner I’m a Package Deal. He Responded With 3 Perfect Words.

To the man who loves me (and my brother with autism):

I fell in love with you when I was 14. No, our lives haven’t been the typical fairytale romance story of many high school sweethearts. We’ve fallen out of touch, many times, and reconnected many times, only to fall out of touch again. But when I found you again at 19, this time, I knew you were here to stay.

At 19, we weren’t thinking about what our future would hold. We stayed up late, went to concerts, went out for ice cream in the summer and cheered for the Dawgs at Georgia football games. I was in love with you, you were in love with me, and I loved being young and in love. In the back of my mind, I always knew my brother with autism would become my responsibility someday, but it was a far-off concern, one that wasn’t tangible, one that wouldn’t happen for many years, and it certainly was not a concern that 19-year-old me needed to talk about with 19-year-old you.

author with boyfriend

Then 23 happened, and because of life’s ever-changing and unexpected circumstances, the responsibility started to became real. My parents started talking to me about finances, about Josh living with me in adulthood, about possibly buying property and hiring staff. I had to sit in on the “tough conversations.” I learned more about what was going to happen when my parents died than any 23-year-old should ever have to know. I was constantly thinking about my future, and where and how Joshua could (and would have to) fit in. My parents began the emotional conversations with me about how to make this “burden” just a little bit easier. I was terrified.

I told you all these things: my fears, my guilt, my hopes and my dreams. I told you that I loved my brother, but sometimes I felt trapped into a lifetime of caring for him. Some days, I felt incredible guilt for not wanting the responsibility. But most days, I felt incredible joy knowing that my brother and I shared such an incredible bond through intense, unconditional love; a bond that I knew was unbreakable. Many times, as I thought about all of these things, I cried in your arms.

“What if I can’t do it?” I asked you, “What if I can’t do all of these things I need to do? What if I fail him?”

You gently cupped my face in your hands. “It will all be okay,” you said, “I promise.”

You sat with me through that first planning meeting, and you listened to the future goals for what mine, and Joshua’s, life would look like. You learned about this part of my life, the “autism sibling” part of my life, quickly and unexpectedly, in a way that I felt was less than ideal. Sure, you had seen it before, but not like this. Not this logistical side of it, not this legal side of it, not this very, very, vulnerable side of it. I cried in your arms some more.

“Does this scare you?” I asked. “Does it make you not want to be with me anymore? What do you think about all of this?”

“I think it’s something that I need to learn,” you said, “I don’t know much about it. But you and I will, we will learn it together.” I cried in your arms again, this time, tears of relief.

A few weeks later it came up again. We talked about what life would look like, and again I told you.

“You know,” I said, “I’m a package deal. I come with Josh, and that’s never going to change,” I said. “You get me, you get Josh.”

Package deal,” you said. “Period.”

author with brother

You’ve taken this on with me, this life of unique challenges, heartaches, joys, and triumphs. You could have said no; some people would have. Instead, you spend time with Josh, you talk with him, you ask him to come with us to the grocery store and sometimes to the movies.

You come with me to take him bowling with his friends. You tease him about his love of diet Snapple and easy-cheese. You buy him movies for Christmas, without me saying a word, because you’ve noticed him watching them over, and over, and over again. Sometimes, you even surprise him with diet Snapple, just because you know how much he loves it.

It doesn’t scare you that when I think about houses. I always talk to you about which part Josh will live in. It doesn’t make you mad that he will live with us someday. It doesn’t make you mad that such a huge part of me is, and always will be, dedicated to him, forever. It doesn’t make you mad because you love all the parts of me, including the incredibly vulnerable parts, the parts that others might have walked away from.

You could have said no. You could have walked away. But you didn’t. You stepped into my “autism sibling” world, and you never looked back.

So, to the man who loves me (and Joshua), thank you.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about 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.

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