A Letter to My Daughter About Her Brother's Disability

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Below is a letter I’ve written to my daughter. She’s the younger of our two kids. But I already see that in some situations, she takes the big sister role. I so badly want her to understand her brother’s autism. I know she notices that he gets more attention than she does… and I don’t think it will stop. Anyways, here it is.

Dear Lucy,

I’ve been thinking about writing this letter to you for about a year now. In that time, I’ve been noticing you noticing me… and it hasn’t always been positive. For the most part I think I’ve been doing a pretty good job as a parent and daddy. But I know I’m letting you down in a crucial area of your life, and I’m not sure that I can stop.

In the last couple of weeks, I’ve made you cry, and it breaks my heart because I know it will not be the last time I do so. I’ve ignored you, favored your brother, and I know it hurts your heart. I just want to let you know — I’m aware of this, and it hurts my heart too.

You’re the baby of our family, and as much as I want you to always be Daddy’s baby, I also want you to grow up quickly so you can gain a certain amount of understanding. I guess I want this for you so I don’t feel like I’m damaging you as much. You see, your older brother has autism, and I fear that it takes from you at times.

I started a nonprofit organization because of your brother, in hopes that we could help other families. It takes up a ton of my time. When you ask me to play while I’m working, I tell you, “No” way more than I tell you, “Yes.” I see that it breaks your heart. It breaks mine too.

The local news did a interview with me, and your brother was in it. You watched it and didn’t understand why you weren’t included. I didn’t have a good answer. I didn’t think you would understand. We shot a brand new “About Us” video, and you asked me, with tears in your eyes, “Why am I not in that video?” Once again, I didn’t have a good answer for you. You left the room, and then the tears hit my eyes.

Your brother has behavior therapy twice a week for two and a half hours a session and a socialization class once a week. You don’t understand why you don’t get to do these things. I try to explain it. I clearly don’t do a good job.

You’re developing at a rapid pace, and I’m in constant amazement at how easy you learn. It also serves as a constant reminder that your brother doesn’t have it this easy. I need to stop and celebrate you more. You deserve it.

You and your brother are playing on the same soccer team for the first time, and you’re holding your own with these older kids. Daddy is so proud of you! But, if I’m being honest, I catch myself watching your brother more than I watch you. And it’s not fair to you. I think it’s because I expect you to keep getting better. When I watch him, I’m hoping he gets better.

I’ve tried a couple of times to explain autism to you. I’m pretty sure you don’t fully understand. I’m not sure why I expect you to, when most people 10 times your age don’t get it. Someday you will… I just wish it was today.

Please know that Daddy is doing his best and also know that he wants to do better.

I love you way more than you know,

Dad

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A version of this post appeared on Firefighters vs. Autism.

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Autism Can Make Him Feel Angry, So He Found Something to Make Him Feel Free

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Sometimes, Kaner Flex feels like he’s in prison.

The 19-year-old professional dancer from London has autism, making social situations difficult for him. But through his art, he’s found a way to break free of any anger and connect with the world. In the video below, Flex brings the judges to tears in his mind-bending performance on “Got to Dance,” a televised British dance competition.

It’s hard for me to give you eye contact. I don’t really give eye contact,” Flex said, according to UnrealityTV. “Dancing helps; it makes me feel free.”

Take a look at his performance:

Flex made it to the semi-finals of the competition before being voted off, according to News Shopper. But the exposure has already opened up new career opportunities for him. On his Facebook page, for example, he recently posted a video of him performing with British pop star Rita Ora.

You can keep up with Flex on Instagram and Facebook.

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Autism and High School: What to Do When the Honeymoon Period Is Over

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Remember my son TJ’s fantastic start to high school? Where he was so happy and excited, and my husband and I breathed a huge sigh of relief? Remember that?

Well, we shall now refer to that as “the honeymoon period.” And baby, it’s over.

How could I have forgotten about the honeymoon period? That amazing week or two when I actually think we’re in the clear?

Right after the honeymoon period comes reality. And it comes crashing in. And every time it comes crashing in, I wonder to myself, How could I have been so foolish to think we were all set?

After the honeymoon period is where the real work begins.

Last week I met with TJ’s new school team – his teachers, his instructional assistants and his special educator, who I think we should now refer to as our saving grace.

Talk about a rude awakening. TJ’s behavior in class had regressed to that of his former sixth-grade self.

That’s when the light bulb went off – he’s stressed. I had no idea how stressful this new school beginning was for him. TJ doesn’t communicate these feelings with words as much as he does with his behavior. He would never admit his stress level to anyone, as he’s so eager to please everyone. But after gathering all the input from the school staff, the problem was clear.

I was sad. But only for a second. Then I was relieved…thank God we have the problem targeted. Now we can start to solve it!

And solve it we are, as a team. Clear communication and lots of it. New folder systems so homework assignments are not missed. Bi-monthly meetings with his special educator so we can touch base on our home and school progress. Emails, emails, emails.

That time after the honeymoon period used to make me feel so sad, as if I had somehow failed as a parent. Now I am empowered by it, fueled with information to give my boy the greatest chance at success.

I guess you can say we both have grown a lot, my TJ and I. And we’re both still learning. Every day.

This post originally appeared on I Don’t Have a Job.

Read more from Lauren Jordan on The Mighty:
When I Had to Follow the Same Advice I Give My Son With Autism
What This Popular Story About Disability Doesn’t Tell You About Disability

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I Have Always Loved My Son, but I Have Not Always Known Him

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“Daddy, I want a baseball bat shirt,” Owen tells Scott, as he is getting ready for bed.

“You have a Yankee shirt, buddy. You wore it today,” Scott replies, helping Owen tug on the pants to his Batman pajamas.

“No, a bat shirt,” Owen persists.

I hear them from the other room and call in to Scott that I think he means a jersey, like the ones worn by the players he saw at the game today. On our walk back to the car from the stadium, Owen had declared, “When I am a big, big boy I play baseball on ‘dis team, here.”

Scott pulls Owen’s pajama shirt on, careful to ensure that the black cape affixed with velcro remains on Batman’s back, and asks “Do you mean a jersey? Like the players wore?”

“Yessss!” Owen exclaims, holding out the “s” with his enthusiasm, though is sounds more like “Yethhhhsss”, clearly thrilled that his message has gotten through.

And more messages are getting through every day. From both sides. We understand more from him, he understands more from us. And it is wonderful and enlightening. And every single day I find myself eyes-widened, repeating some phrase he has just uttered to the person who has served as witness to it right there beside me. At times it is Scott, or our beloved babysitter or one of Owen’s therapists. It is a familiar expression for me now, eyebrows raised in happy shock, the kind of thing that I hope does bring me wrinkles as a result of skin-stretching overuse.

I have always loved my boy. I have always wanted to take care of him – to protect him and do whatever it was that I could to help him, to make sure he was getting what he needed – at first to survive and then to thrive. I have always felt connected to him. Whether it’s due purely to maternal instinct, or how affectionate and cuddly he is or how much we are alike, I don’t know. It was agreed upon long ago that our careful, introverted, thoughtful Parker is very much her father, and that Owen – extroverted, impetuous, impish to the core – is so much like me. But it doesn’t really matter why, does it? We don’t question why we feel connected to our children – only the ways that we don’t.

I have always loved my boy.  But I have not always known him.

And that is hard to admit. And likely hard for others to comprehend, to relate to.

But it is my sad, honest, raw truth.

I have always known Parker. Every cell in her petite little body is familiar to me. I can tell you how she will react in any given situation, how to calm her down and how to rile her up. I can tell you which shirt she would choose to wear in a fashion lineup. I can tell you when she needs to be left alone and when she needs to be cuddled. I know her real hurt cry from her fake attention-seeking cry. I know the things that fill her with pride and those that deflate her confidence like the proverbial helium-filled balloon whose end has been released. I know the point to which I can push her to try something new in order to show her she is more capable than she allows herself to believe and when not to push, to allow her to hold back, to wait it out until she is more comfortable.

When Owen announced his larger-than-life intention to play baseball for the Yankees when he grew up, I asked Parker what she wanted to be.

“I want to work at the stadium. In an office.” Practical, sensible. Scott’s daughter to the core.  Scott and I smiled at each other over our children’s bobbing heads.

She has always been an open book to me, while he has been something more akin to those faux leather-bound tomes found in fancy libraries in historical homes  we have visited from time to time. If you pull one off the shelf – these books with titles like “The Call of the Wild” or “Anna Karenina” or “Great Expectations” — and you attempt to thumb through them, you will find your thumbs useless, unable to budge the sealed pages. What should be familiar – you know these books, they look familiar to you, you should be able to read what’s between the covers of these classics you hold in your hand – you are somehow no longer privy to.

Owen has been a closed book – though he has a cover I recognize and can maintain and keep clean and take for careful restoration when needed. I can admire what is before me, what I hold in my hands. I can marvel at what I am sure is something wonderful inside, even if I have not yet been granted access. But I do not know for sure what is at its core. At his core.

Until now.

Until this summer when something inside him cracked open. Until something clicked, and opened and began to blossom before us all.

And I have no idea why or how or when exactly this happened. And I’m honestly not even sure if I care.

Because some things should not be analyzed – only enjoyed. Sometimes you read “The Age of Innocence” to discover themes, to analyze the imagery within – and sometimes it’s purely to allow yourself to get lost in the gorgeous and well-told story as it unfolds, to soak in all of the wonderful language, the beauty of the words kept between the protective covers of its now-cracked binding.

I am putting aside my typical over-analyzing, questioning self for now. I am enjoying the open book my boy is becoming, even if he is just sharing this new narrative of his on a page-by-page basis. It is a cliffhanger, and I am hooked on every word.

Great Expectations indeed.

This post originally appeared on Jamie Krug’s personal website.

More from Jamie Krug on The Mighty: I Thought We Had More Time

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This Is My Definition of Autism

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Kerry SF Picture

My name is Kerry, and I have Pervasive Developmental Disorder – Not Otherwise Specified (PPD-NOS).

This means I have autism.

This does not mean I am autism.

This means I see the world sometimes in a different light.

This does not mean I’m in the dark.

This means from time to time I may have a difficulty expressing my emotions.

This does not mean I don’t feel.

This means when I communicate, I do it with a style that is my own.

This does not mean I don’t have a voice.

This means I may have sensitivity when it comes to a certain feel or touch.

This means sounds can sometimes make me feel uneasy.

This does not mean I’m deaf or hard of hearing.

This means I can often focus on certain interests for a long period of time.

This does not mean those are my only interests.

This means I’m the only person in my family to have this.

This does not mean I’m alone.

This means I may have 500 other symptoms/capabilities that are different than yours.

This does not mean I’m any less of a person than you are.

My name is Kerry, and regardless of what PPD-NOS means or doesn’t mean, autism can’t define me; I define autism. I can only hope those individuals, regardless of being autistic or not, can define their lives and their journeys in the way they see it.

This post originally appeared on the SF Gate Blog
and later on Autism Speaks.

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This Man's Love for Cats Led to a Wildly Amazing Creation

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Greg Krueger has built something truly incredible for his furry friends to enjoy. Were I a cat, this is certainly where I would want to live.

His endearing fondness for the frisky pets inspired him to spend more than 15 years turning his house in Minnesota into a feline fantasy playground, complete with ladders, ceiling catwalks and secret hideaways, according to KHON 2 News.

The 49-year-old, who was only recently diagnosed with Asperger syndrome, relates to his cats easily and loves them unconditionally. With a home like that, those kitties must love him right back.

Check out his awesome creation in the video below.

 

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