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.

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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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A Concerned Dad Asked Me, ‘What Will Happen to My Son With Autism When I’m Gone.’ This Is My Answer.

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At an Autism Society autism conference I attended a few years back in Orlando, Florida, a father, probably in his sixties, approached me. He had a nonverbal son. We discussed his son’s need for an aide and several supports. Then he asked me one of the most difficult questions I’ve ever been asked as an autism advocate:

 “What do you think will happen to my son when I’m no longer here?”

It was a question that caught me off guard. I wasn’t sure how to answer. This parent expressed his deepest fear. 

My parents had no idea what my future had in store when 4-year-old me was diagnosed with autism. Now at 26, my future is secure as an adult with a good job, a place to live independently, friends and a great sense of how to navigate the world around me. My parents can breathe easy… but it’s not so simple for so many other parents of children on the spectrum.

I still regret not being able to help this man. I was speechless. Speechless because it was a question I could never imagine being asked. I don’t know if he will ever read this article, but for the small chance he does, I would like to share this letter with him.

I can’t even imagine how you’re feeling right now. When we last spoke, I didn’t have all the answers for you because I never had to approach the question before. Today though, I want to tell you this…

In our autism community, if you’ve met one individual with autism, you’ve met one individual with autism. Everyone is unique. I’ve met those who have been able to start speaking and live independently and others who have had to live in group homes. The spectrum is so wide. Unfortunately I still can’t fully answer your question.

What I’m telling you, though, is you have to be the answer to that question. As overwhelming as this may all be, one thing I want you to think about is hope. You need to be his your son’s advocate and secure his future through your actions in the present.

This issue is gaining national attention with both the ABLE Act in Congress setting up tax-free savings accounts, and the AGE-IN Act, which provides support for a person who turns 21. Research and follow the response to the growing demand for providing housing for our autistic community. Look at employment and training opportunities being developed.

Then make your plan. You know your child best.

When you think of hope for the future, you need to make plans. Start discussing with close friends and family who could take care of him. Most important, find out who can show him unconditional love each and every day. Find the support system for him that will make him happy. And while you’re here with him now, make sure you’re always playing up to his strengths. Talk about your son’s strengths and weaknesses to others so they have a better understanding of who he is.

I know what you’re probably thinking — easier said than done, right? What happens if I don’t have the family, friends or supports who are going to help with this transition?

Well, while you’re pushing and fighting to figure out these answers, I’m going to go out there and fight for your son, too. Your son is part of our community, and we’re all in this together. I’m going to fight for your son when I strive for adult services for those with autism. Whenever I push a grass root campaign for SSI payments and special needs housing for adults, I’ll be thinking of your son. 

That’s the thing about our community. Regardless if you can’t speak, you’ll always have a voice — mine. I will tell your  story. Our stories needs to be told. We will keep fighting. We have it in us. We have the passion. We have determination. And, most important, we have heart. 

I’m sorry it’s taken me this long to get back to you with an answer. I’m still learning every day more and more about how to be a better advocate for our community. I hope if you’re reading this now you can sleep a little easier knowing that, even if the question of what happens next can be a little scary at times, we’re searching for answers. Our kids are growing up, and so are we. I know that we can make a difference.

For those reading this, I hope you’ll share this letter in the hopes that it will reach this man, along with anyone you know who’s ever questioned what the future has in store for their loved ones. The bottom line is no one has a way of knowing how things are going to play out. The only thing we can do is control the present and our actions today to prepare for the future. Let’s pledge to become the advocates we desperately need to be to answer these questions. 

I encourage you to comment below to keep the conversation moving forward and use the resources of our Mighty community to good use. We’re all in this together. 

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My family.

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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Heartwarming Photos Capture Bond Between Boy and His Autism Service Dog

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We love this friendship.

Alex Merrigan, 3, of New South Wales, Australia, has autism. A few months ago, his parents brought home an autism assistance dog, a 1-year-old labradoodle named Ollie.

Although it’s only the beginning, the two have embarked on what Alex’s parents believe will be a lasting and meaningful friendship. And it’s also pretty adorable.

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“Ollie helps to make Alex’s world a little more safe and secure,” Cassandra Merrigan, Alex’s mom, told The Mighty in an email.

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Merrigan says that autism service dogs are still new therapy territory in Australia, according to HLN. She hopes that the photos she takes of Alex and Ollie can help spread awareness.

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For Alex to want to go and sit with Ollie and have a cuddle means the world to us,” she told the outlet. “Alex’s autism restricts his awareness of the world around him. The fact that Ollie is already becoming real to him is amazing.”

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Merrigan told The Mighty that the bond between Alex and Ollie is progressing slowly but surely, and the family has high hopes for the two of them.

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“On those days where Alex is with it and switched on there are some very lovely moments between the boys,” Merrigan told The Mighty, “Alex giving Ollie a casual pat or attempted cuddle in passing. We’re optimistic of a great friendship to come.

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To keep up with Alex and Ollie, visit their Facebook page.

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