Autism and Falling in Love: Why I Dedicated My Book to the One That Got Away

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Kerry Selfie A few weeks ago, I wrote a letter on The Mighty about the one that got away. Growing up, I never thought I was going to have a girlfriend because of my sensory issues, delayed speech and eventual lack of ability to talk to others for long periods of time. After two decades of therapy, I overcame a lot of my obstacles. Today I’ve become a national speaker, appearing at more than 400 venues in the past four years. During this time, I’ve had four amazing girlfriends who taught me a lot about what it means to be in a good relationship.

I was 18 when I fell in love for the first time in my life. I told myself then that I wanted to write a book to help others on the autism spectrum understand and succeed in relationships. Seven years later, during my break up with my recent girlfriend, I was a complete mess. I did everything I could to seek out help to fix the things that went wrong in the relationship. I wanted a second chance so I sought out books, professionals, autism life coaches — basically everyone I could find to work on myself.

This all helped me finish my own book. And as much as it became a self-help guide for others, I wanted to do something special for the one that got away to help her feel special and loved if she read it, too. That’s why there’s a sunflower on the front cover. I gave her a sunflower the first time I told her I loved her. I’ve also decided to donate 50 percent of the proceeds to Autism Speaks and the other 50 percent to one of her favorite charities, Best Buddies. The last thing I did with this book was write her one last “I love you” letter.

And I wanted to share that letter with The One That Got Away and with any adult on the autism spectrum:

If you ever come across this article I hope you know I really do love you and I truly didn’t understand how things were bothering you. I hope if you ever read this you’ll watch the movie “Adam” because it depicts how an adult with autism can be blind to others’ perspectives in relationships.

Growing up, I had to be the guy who constantly worked on things so I could have a life where I could get to a point where I could have a relationship. I had to make my therapies my 24/7 job. I’ve seen so many relationships where people who are on the brink of breaking up say they can change. But they don’t mean it. For me though, changing is something I’ve had to do my entire life.

Hopefully, if we ever do get to communicate again, I can show you what I’ve been working on to be a better partner…

I’ve spent so much time trying to overcome my obstacles as a child. One thing I say is, “Autism can’t define me. I define autism.” Now as an adult, more than ever, I want to define how to be a better partner for the people I care for.

Kerry’s new book “Autism and Falling in Love,” tells the story of how he was nonverbal as a child and overcome the odds to become a national speaker and find a relationship as an adult. You can learn more about Kerry and his book here.

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A Message From a Special Needs Mom to All Other Moms

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There’s a disturbing trend happening among a handful of parents who are raising children with special needs, developmental delays, medical needs, trauma, etc. — the lashing out on those raising children without these extra labels.

I’ve read words from obviously hurting mothers that express hatred toward any mother of a typically developing child who dares to share the joys of parenting… or worse, who dares to complain about how hard being a mom can be.

I get it. I really do. It’s hard work being the mom of children with special needs. Some days go just fine, but other days I long for normal. It can be frustrating to hear a mom complain that she can’t get her picky son to eat his broccoli when I worked for months, literally, to get my son to eat anything other than oatmeal. It can sting for a moment when a friend shares a funny story her child told her or something sweet he may have come running to tell her, when I’m longing to hear what my son thinks and feels… longing for even just one small sentence.

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But, those are my issues to work out in my own heart. Just because things can be hard in my home doesn’t negate the struggles my friends go through. Special needs or not, parenting is hard work. Just because my hard is different from your hard doesn’t give me the right to silence you or belittle your experience. No, you may not know what I go through on a daily basis. It may be difficult to imagine some of our emotions and struggles… but that’s not your fault. It’s not a fault at all.

So please, please keep bragging about your children. If I can’t find joy in your joy, then I’m not being a true friend. To feel anger because something good happened to you that hasn’t happened to me is immature at best, but really it’s a complete lack of love.

We need to love and support one another, not just those who walk a similar path to our own. If you’re tired and frustrated because your little one has a cold and has been extra cranky, it’s OK to share that and ask for support. Don’t feel awkward about saying that to me, knowing that we’re in post-surgery recovery mode and having a rough go of it. I mean that. If I’m a friend, if I’m being a loving and supportive person, then it won’t make me roll my eyes and utter, “If she only knew how bad it could be…

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We can’t measure the level of celebrating or grieving that our peers experience, compare it to our own level and make a judgement call on whether or not the celebrating or grieving is acceptable and/or equal to our own. We simply need to enter into their world, grab every ounce of compassion and empathy that we can muster and be a friend.

Our job, as parents of children with special needs, is not to make others feel guilty and constantly remind them how good they have it. Our job is to love our children (and yours!), support and advocate for them and to be a good friend. Your job, as parents of typically developing children, is not to hide your struggles and joys. Your job is to love your children (and ours!), support and advocate for them and to be a good friend.

We who may feel like we may have a steeper path to climb in this parenting journey shouldn’t just shut our mouths, grit our teeth and make the journey alone. No, it’s good to share the heartaches and struggles… but we must do simply that and not tear down or silence others in the process.

Can we all just agree that, at times, motherhood is hard for everyone? And truth be told, I don’t think for one second my friends of typically developing children have it better or easier than I do. Because I have the two most beautiful and amazing children on the planet. I have more than enough to celebrate!

This post originally appeared on LaurenCasper.com.

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When I Slowed Down and Actually Listened to My Brother With Autism

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So many people are in such a hurry.

It’s great once in a while. Rushing and effectively getting tons of stuff done in a day or two feels exhilarating and fantastic. But I think it’s unhealthy as a lifestyle choice, for most people.

I’m not a rushed kind of gal. I don’t put a lot on my plate and rarely take on projects with deadlines or excessive multitasking warning labels. But even I am often guilty of being in a hurry.

I like fast conversation. I like layers and quick wit and surprising revelations. I crave personal epiphanies and different ideas stumbling all over each other until they connect like some fabulous crazy integrated puzzle.

Often my brother will want desperately to chime in. He, too, finds fun in sharing perspectives, adding layers to thought and encouraging laughter with his cheeky satire. However, at 32 he’s a slow talker and extremely difficult to understand.

He’s also used to people assuming his sounds are just sounds and not slowing down to hear the word or even believe in it. For years and years it was only my mom who truly believed in his language. So he has a habit of giving up easily, and some of us have a habit of letting him.

Now that he’s getting slightly clearer there are many family members and friends — and of course his girlfriend — who believe, but still it’s only Mom (and maybe his girlfriend) who is always willing to slow down and listen — regardless of the to-do list, the ticking of the clock or the quickness of the conversation.

Every time I catch myself feeling impatient with my brother’s slowness, I have to laugh. What am I in such a hurry for? The next epiphany? I already know my brother has some of the most interesting and surprising insights of all. Why not slow down and wait for it? And his humor is brilliant! If it’s a laugh he’s offering, it’ll be worth the wait.

Hearing my brother’s words is always worth the wait. Letting him know we want to hear is always worth the wait. Taking time to allow him to hone his skill rather than make him feel inadequate is forever worth the wait. 

This is what I’m so passionate about sharing — the answers autism has offered me. In another home, a place where everything is easier, it’s also easier to ignore important truths and take the easy way. But later, the easy way has almost always given us bad habits like blaming, rushing to success, a willingness to give up easily. Challenges and difference highlight the important stuff. We don’t all choose to learn it or see it, but often we do. Because it offers itself to us and because not much is easy anyway, so we’re more willing to take the time.

I’m betting you have a loved one who you rush. Whether it’s yourself, your child, your sibling, your spouse… maybe you’re rushing language, skills, getting out the door on time. Don’t beat yourself up over it, but do go ahead and slow down.

It’s important to have goals and to go after them with intention and focus. But it’s also smart to take your time, to notice and connect with the world along the way. Otherwise you’ll reach your goal, but you’ll get there empty handed.

All the important stuff — all the people and lessons and beauty you need to enjoy and use your goal to its fullest — happens along the way.

So slow down. Our loved ones are talking.

Dar's Facebook

This post originally appeared on Autism Answers With Tsara Shelton.

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The Top 10 Best Gifts for Kids With Autism

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Holiday shopping is tricky, and if you’re new to the autism community, you may be wondering what gifts will both help your child and fill their heart with glee. So we asked our Mighty readers what toys their children with autism loved the most. Here’s what they had to say:

The Airwalker Therapy Swing:

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This therapeutic swing, made of heavy-duty spandex, is a great sensory toy for children who enjoy spinning and swinging. Go here to learn more or purchase it.

Learning Resources Pretend & Play Calculator Cash Register:

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This solar-powered toy cash register is a great combination of fun and learning. It comes with fake bills, plastic coins and credit cards and is recommended for ages 3 to 8. Visit here to learn more.

Sensory Sox:

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Therapeutic sensory body socks, like the one above, are great tools for kids who have tactile issues and those who need to develop body awareness. It’s also a great place to hide out and calm down for a moment. Visit here for more information.

Moon Sand:

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Moon sand is sand that doesn’t get messy — it sticks to itself instead of to your hands and body. It feels great and comes in colorful colors, perfect for tactile and visual sensations. To purchase it or read more about it, visit here.

Bazoongi Bouncer Trampoline with Handle Bar:

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Trampolines are good therapy tools because the repetitive bouncing motion helps children learn over time how to read impulses from their different sensory systems. It’s also a lot of fun. To purchase or for more info, visit here.

 Connectagons, Under The Sea:

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This set of 234 ocean-themed interlocking wooden pieces is great for children to work on spatial thinking and hand-eye coordination, not to mention creativity. For more information, visit here.

Color Changing Teddy Bear:

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This super soft stuffed animal’s tummy and cheeks light up when you squeeze the paw, and its soothing glow shifts colors. It’s perfect for visually oriented kids and also provides something soft to snuggle. For more information, visit here.

The Spin Disc:

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The Spin Disc is a balance-training device designed to help improve balance and coordination. Children can sit or lie down while spinning. For more information, visit here.

LeapFrog Scribble & Write:

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This tablet-like toy is great for helping a child hone his or her fine motor skills by allowing them to practice letters and numbers. To purchase, visit here.

Fun and Function’s Blue Weighted Compression Vest:

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This compression vest is great for children with sensory and attention issues, as the weight and pressure of it help calm its wearer. For more information, visit here.

What would you add to the list? Let us know in the comment section below. Happy shopping, everyone!




The Top 10 Best Gifts for Kids With Autism

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To the Therapist Who Gave Us the Best Gift of All Time

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img_4577 Last year around this time, our lives had been thrown into complete chaos. At Lila’s one-year check-up, the discussion inevitably turned to some of her red flag behaviors: she wasn’t pointing, uninterested in playing with her daddy or me, not responding to her name, not looking when we tried to point at something, giving little eye contact, not interacting with other children at daycare…

After her initial developmental assessment, Lila started therapy with SoonerStart when she was 15 months old. At that point, she’d barely even acknowledge my husband and me. She was often in her own little world. It was scary at times, when we couldn’t get to her. We were terrified that we’d lost her, beyond overwhelmed, and our heads were spinning. What did this mean? What would Lila’s future look like? Would she ever live on her own? How in the world were we going to give her all the help she so desperately needed?

In October 2013, a woman named Janet entered our lives – and she would change everything. She’s a speech language pathologist. Through SoonerStart, she’s contracted to come out and see us once a week for an hour. During our sessions, she taught my husband and me how to get into Lila’s world. But that’s not all she did.

Janet and I have been in constant contact since then. I just counted, and over the past year we’ve exchanged over 350 e-mails. She successfully helped us navigate through the initial shock of how far behind Lila was developmentally. She saw us through the official diagnosis of autism and acted as a sort of family therapist. She’s our go-to person for information and advice on all things Lila and autism. Receiving one of her lengthy e-mails jam-packed with links and all sorts of useful information is my version of Christmas.

The change we’ve seen in our daughter is unbelievable. She wants to play with us and actually seeks out those interactions. She’s mimicking sounds, some actions and has started to say “go,” “yeah,” and “yay” in the correct context. She uses PECS cards to tell us what she wants to eat or drink. Little by little, we’re breaking down the barriers and finally starting to communicate with her.

Janet swears that (not unlike Mary Poppins), she’s giving us the tools we need to help Lila thrive and succeed – and that one day, we’ll not need her anymore. But we just cannot imagine our lives without her. She’s beyond selfless – she’ll say that all of Lila’s progress is because of Bill and me, that we’re the ones who put in the time to actually follow through with her suggestions. She’s an angel (I’m fully convinced), and she came into our lives for this important purpose. We’re forever grateful; she’s family now and always will be.

What better way to thank her than to make sure everyone knows what a kind, generous and amazing human being she is?

I mean, she helped give us our daughter back… and I cannot think of a more profound gift.

Read more from Melinda Brown on Dancing With Autism.

 The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected].
Hint! Some gifts don’t come in packages.

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To the Pediatrician Who Asked the Question I Didn't Want to Hear

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I got mad when our new pediatrician said, “Your daughter’s not talking much.” Then she asked the question that changed everything: “Does she have a diagnosis?”

We’d changed doctors after the birth of our son, and we were going in for his 2-week check up and Lily’s 2-year wellness visit. I had our newborn son strapped into the car carrier and held my daughter’s hand. We were practically dancing, walking from the car to meet my husband in the lobby. Lily was singing “Today is Monday.” She knew all the words, the foods for each day of the week. She sang the song beautifully.

My heart was full. I clearly remember thinking, “I can’t wait for the new pediatrician to see how beautiful and smart and strong she is.”

Lily had been reading phonetically since she was 18 months old. She knew at least a hundred words and at least 50 songs. She was obviously the happiest, most beautiful, affectionate and brilliant child any pediatrician could meet.

When we got called to the examination room, my husband and I laughed because Lily saw the doctor’s pink polished toenails and knelt down and tried to lick them, as if they were candy. I pulled her into my lap, and we got down to business. We answered all her questions with, “Yes.” Lily had met every milestone. Until that fateful question: “Does she have a diagnosis?”

Shocked, I paused, then said, “But she talks all the time. She has an incredible vocabulary. She knows entire, complicated songs. She loves learning and has been reading since she was 18 months old.”

“Yes,” the pediatrician said. “But she doesn’t seem to be talking with us much.”

At the time, Lily was walking around the room, naming things, full of curiosity, trying to push buttons on the doctor’s old computer.

The pediatrician noticed my obvious shock, and said, “It’s probably nothing to worry about. We’ll wait until her next visit and see how she’s doing then.”

I don’t remember another thing the doctor said about Lily or our newborn. My husband didn’t seem fazed by the interaction. I could think of little else.

I mulled it over on the drive home, talked about it with my husband that night. “What do you think she meant, ‘Does she have a diagnosis?’ Do you think she’s saying Lily has a learning disability or autism?”

unnamed (53) I was angered at the suggestion and kept remembering a talk I’d had with my husband’s uncle, who worked most of his life with people with disabilities. We’d had a long conversation, but what stuck with me was him saying that multiple mothers of children with autism had said to him, “I don’t think my child loves me.” I remember thinking, “If that’s what autism is like, we never have to worry about Lily being autistic.” She’d always been happy and affectionate. She loved to sit in my lap, cuddle and play our made up games. She would laugh at the simplest things. With me.

As I talked it through, I realized she didn’t always make eye contact with my husband, my mom or her babysitter. I started piecing together a picture I hadn’t seen. Lily wouldn’t ask for things. She would reach for what she wanted, give signals that she wanted to be picked up. She would point to words on books as she sounded out words. She could read simple books she’d never seen before. But she wouldn’t point to or ask for things she wanted. I’d once found her sucking on a wet rag, rather than asking for water. She repeated phrases from shows or songs, but she didn’t talk with us.

I called a friend who works with 3- and 4-year-olds with special needs and asked what she thought of the pediatrician’s question. I expected her to be incredulous, too. But she gently told me, “Your pediatrician sees a lot of children every day, and if she thinks there may be issues, it might be worth looking into, worth getting her tested.”

I cried and said, “But she’s so smart and happy and affectionate.” And my friend delicately replied, “Yes, she is. And still will be, even if she happens to have autism or a learning disability. And if she does, there’s so much that can be done to help her, especially when you catch it early.”

I couldn’t sleep that night. I cried and cried and cried. I was afraid that the daughter I knew and loved was gone, and I might view her differently if she had a diagnosis. I realized I was crying for myself and my expectations.

I woke up determined. I started reading about autism. I Facebook messaged a friend who posted a lot about autism. She guided me to Easter Seals. I called them that day, set up an appointment to have Lily evaluated in our home. I was upset that it would be a month before they could come. I called another friend who has a child with disabilities and got a recommendation for a behavior specialist doctor. The doctor was booked up, and the appointment, made in July, was for March of the following year. I got the ball rolling.

Here I am, a year and a half later, still with the same beautiful, affectionate child. She gets occupational therapy and speech therapy weekly and is in her second year of special education pre-school with teachers she adores. She is happy and loving, and I’m her biggest advocate.

Not a week goes by that I don’t think of that pediatrician. She retired last year, and she’ll never know the impact she’s had on our lives. I give thanks for her. I appreciate that what she asked wasn’t easy. She took away the Lily I envisioned and gave me reality.

Reality is that my daughter’s brain doesn’t work the same as most people’s. It’s extraordinary. She’s eccentric and silly and fun. She’s still the happiest, most beautiful, affectionate and brilliant child. I’m the one who’s changed. I’ve gained more tools, more understanding.

As a registered nurse and now a mother of three, I appreciate a doctor who was willing to ask the hard question, the one that changed lives.

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