Archive

Posts Tagged ‘love’

Tune in for Jack Robison and Kirsten Lindsmith on NPR

January 17, 2012 Leave a comment

On January 18, 2012 at 3pm EST Jack Robison and Kirsten Lindsmith will appear on NPR’s Talk of the Nation with guest host John Donvan.  They have been invited to talk about autism and growing up as well as other topic’s discussed in The New York Times article ‘Navigating Love and Autism,’ in which they were featured.

Autism’s “Fly-Over” Population

January 4, 2012 72 comments

This is a guest post from Mark L. Olson in response to the New York Times article, ‘Navigating Love and Autism.’ Mark lives in Henderson, Nevada where he is the only parent of a 16 year old daughter with autism; Chairperson, Community Living & Employment Subcommittee, Nevada Commission on Autism Spectrum Disorders; and, President & CEO, LTO Ventures, a 501(c)(3) nonprofit company developing live/work/play communities for adults with autism.

I read with mixed emotions the December 26th New York Times article “Navigating Love and Autism” about Jack and Kirsten, a young couple with Asperger’s Syndrome discovering how to have a relationship with each other.  The romantic in me found their story inspiring and hopeful.  But as the only parent of a teenage daughter with autism, another part of me felt frustration about the lack of attention to and help for autism’s “fly-over” population — the huge group of teens and adults who are often nonverbal, may never expect to live independently, yet deserve the chance to choose the kind of life they want to live.

“Fly-over” is a term I heard often growing up in the Midwest and attending University of Kansas.  It refers to the majority of the US between the East and West Coasts that airline passengers look down on when they fly over.  It also refers to a mindset in the media that the most valuable audiences are located in New York and Los Angeles, and to which their programming overtly caters.

Autism is a broad spectrum disorder just as the U.S. is an expansive land mass and melting pot.  A favorite expression in our community is that “if you’ve met one person with autism, then you’ve met one person with autism.”  Our community and efforts to help persons with autism benefit from all the awareness we can generate, but sometimes it feels like that attention falls largely onto two ends of the spectrum.

At one end, thanks to organizations like Autism Speaks and others, kids as young as 18 months benefit from more research dollars than ever directed toward finding the cause of and a cure for autism, while insurance mandates are in effect in the majority of states that emphasize funding for ABA therapy and early intervention, diagnosis, and treatment.

At the other end of the spectrum are the Aspies and HFA teens and adults like Jack and Kirsten who are the focus of media coverage, movies, federal programs such as Medicaid and the President’s Year of Community Living.  They are also the primary beneficiaries of the Protection and Advocacy (P&A) Network created by Congress and self-advocacy organizations bent on eliminating all barriers to living and working exactly the same lives as “typical” Americans.

But what about the fly-over population?  My daughter is one of them and we live this struggle every day.  (I also run my own 501(c)(3) nonprofit company developing live/work/play communities for adults with autism and chair a subcommittee for the Nevada Autism Commission on community living and employment.)  I see this issue from many perspectives and I’m increasingly disheartened by the chasm of resources and choice expanding between our community’s newest affected and our most capable.

My daughter is 16 and nonverbal, although she can hear and understand some of what is said to her.  She’s not high-functioning enough to enjoy true independent living, and diagnosed at age 12 she was too old to benefit from aggressive early intervention protocols.  I expect she will stay in her special needs school until her IDEA eligibility runs out and we are planning for guardianship now. But I’m also 39 years older than her and while I like to believe I’m immortal, I’m pretty sure I’m not.  So that means planning for where she is going to live, what kind of work she might do, and what chance at a social life she can expect.

Let’s start with housing options.  My daughter deserves the right to choose any residential setting in which she wants to live.  It is estimated that 85% of adults with autism live with parents or a family member until they can no longer be taken care of.  As with many kids with autism, there are daily living skills she does well, and others (bathing, feminine hygiene, house cleaning) that are a challenge. Some disability self-advocates argue her only option outside of my home should be in her own apartment or home no closer than 1000-1500 feet from any other disabled person.

She can’t live alone in a scattered site apartment because she doesn’t know how to cross a street safely, or how to avoid neighbors who might bully, exploit, or abuse her.  It’s a ludicrous notion to expect her neighbors to be her “it takes a village” safety net.  She can feed herself, but she cannot use a stove or microwave to prepare a hot meal.  A setting where she could go to eat or pickup meals of her choosing would be ideal.

A planned residential community optimized to accommodate her autism such as a disability-based campus or farmstead would be a great solution.  Unfortunately, Medicaid, certain self-advocacy groups and the P&A Network are doing everything they can to deny her freedom of choice and impede development of innovative settings. (Read more at “Choice v. Olmstead“)

Now let’s talk about work.  My daughter is blessed with exceptional physical strength and decent gross motor skills.  With supervision she can do fine motor projects and follow multi-step instructions…for a while.  But she cannot speak, read or write.  She will never be able to pursue competitive employment on the open market, but that doesn’t mean she can’t earn a minimum or higher wage.  A work environment created to accommodate and develop her abilities would be ideal.  But again the same forces are at work to eliminate these optimized settings as discriminatory.

Would she like a social life?  A relationship like Jack and Kirsten?  I don’t know.  I do know she is highly sociable and enjoys the company of affected and typical kids and adults.  A setting where she could freely walk around, meet up and hang out with persons like her and enlightened members of her surrounding community would be ideal.  But transportation, availability of programs, and lack of funding marginalize anything except a public park or shopping mall.

Jack and Kirsten’s story is informative and heartwarming.  But as we enter 2012, I implore the autism community, media, government and especially those self-advocates who resist progressive thinking and innovation, to not forget the impact they have on our “fly-over” population.  Their story deserves to be told too.  They deserve the right to choose how they want to live.

———————————–

For more information:

LTO Ventures

Community Living & Employment Subcommittee, Nevada Commission on Autism Spectrum Disorders 

In Their Own Words – Be Still

July 29, 2010 27 comments

Photo by Susan Frank Lowe

This “In Their Own Words” is written by Cheairs Frank Graves, a Charlottesville, Va. mother of two. Her son has autism.

“Be still and know that I am with you.”

These are words that I have heard in church and at Vespers during my days at summer camp, but it is my son with autism who is teaching me the meaning of these nine words.

“With you” is not exactly how I would describe my ongoing relationship with my son. There are days when he is present, laughing and smiling, and there are days when rolling on the floor and dropping marbles in front of his eyes are his activities of choice.  Words cannot describe the sadness I have felt when my son turns his back to me when I try to play with him or when he does not respond to his name. It is an empty feeling – a feeling of failure – and feelings of why.

But along this journey my son is teaching me. If I listen hard enough, he is screaming, “Enter my world!” when he turns his back to me.  If I sit next to him while he drops the marbles in front of his eyes, he might just look at me and smile.

“Be still and know that I am with you.”

If I lie on the carpet when he is rolling on the floor, he moves next to me.

“Be still and know that I am with you.”

If I sit next to him in the front yard, listening and repeating words back to  him – words that he is saying, then I can see his beautiful, blue eyes light up and his crooked smile appear.

“Be still and know that I am with you.”

If I am very still as he comes down the stairs in the morning, I can begin to smile at his ritual of closing off the bedroom and bathroom doors that lead into our room.

“Be still and know that I am with you.”

If I am present when he crawls into the bed and folds himself into the warm comforter, I can celebrate the little life that is lying next to me.

“Be still and know that I am with you.”

If I wrap my arms around him as he puts his head on my chest, I can hear him breathe. My sweet little boy.  My precious little boy.

Mommy, “Be still and know that I am with you.”

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


Share

In Their Own Words – A Little Secret

June 24, 2010 15 comments

Ethan, I still love you …

Today was a pretty rough day for you, Ethan. It was for me, too.

It was hard for me to pick you up and carry you to the van with the other kids. I know it’s not what you wanted, but I didn’t want you to hurt yourself or someone else during the behavior you started to have.

I know there are times you don’t understand why things happen as they do. You don’t understand yet, because you’re only six! I hope that one day you’ll realize that the choices I have to make are to help you as you grow up.

When I see you scrunch your nose and raise your small fist, I can see you want to communicate with me, but simply aren’t sure how to do it. I try hard to keep you calm and ask what’s upsetting you, but sometimes that doesn’t work either. I hope you know I’m trying my best to be the mom you need. I’m pretty sure you see it, too. Your hugs and kisses tell me so. When I mess up, you even tell me it’s okay, and I can try again! I love when you tell me its okay to mess up, because I’m not perfect either. Sometimes I get frustrated, too, and say or do things I shouldn’t. That’s why I always come back and tell you I’m sorry when I mess up. I know you’re a very forgiving boy and that you’ll still love me too. When you tell me it’s okay, it makes my heart smile, because I see what a great and wonderful boy you’re growing up to be!

In the van, you screamed so many terrible things that you think about yourself. It made me sad to hear it. I wanted to cry when I heard you screaming such horrible things about yourself. It really hurt to hear how upset you were in school, and that you scratched your face so much. I wish I could have been there to talk with you, and make everything okay again.

I guess this is a part of life where you have to try finding new ways to handle a situation you don’t like. I don’t like hearing that you were hurting yourself again. I think you’re so special, Ethan!

You’re so smart, loving, caring, and everyone tells me how much they love you, too. You’re such an amazing little boy, even if you don’t see it yet. I see it, and I believe in you!

You said you hate yourself, even called yourself stupid and dumb. Ethan, I wish you could see yourself through my eyes. I love you during the good times, and even more during not so good times. I love you even when you call me names, and I still love you when you’re hitting me. I love you when you’re punching and kicking me, and I still love you when you try to bite me. I even love you when you scream that you hate me and then spit all over my face. I love you because God gave you to me. He knew that you were perfect for me before you were ever born. You have taught me to be patient, to listen closely, stay calm, and pray for direction when I can’t do it on my own. You taught me that I am a strong woman who can love more and more each day. You also taught me how to laugh and laugh, even on days I feel sad or grumpy. Your little laugh is contagious, and your eyes glimmer like the sunshine on a calm lake. You taught me not to take things for granted, like a hug, or kiss on the cheek, or our good night routine full of giggles. I want to thank you for teaching me so much Ethan. Without you in my life, I wouldn’t be the mom that Cheyanne, you and Isaac need. You don’t know it yet, but you’re teaching me more than I’m teaching you!

I think you’re one of the most amazing little boys a mother could ever have! I know there are times when you get frustrated and upset. I would too, if I had to deal with the same challenges you face every day. Life is hard enough without all the extra obstacles put in your way. It’s hard for grown ups, and we don’t have as many challenges as you do. You have been doing so great handling all the changes in your life. I know they’re not easy to deal with either. This is another reason you’re such an amazing young boy!

I want you to know a little secret, Ethan – there is nothing in this world that you can do or say to me, that will ever make me love you less. Nothing!

When you’re upset or feel less than great about yourself, I’m still here to hold you in my arms, and tell you just how special you really are. That’s one of the best parts of being a mom! You can tell me all your secrets, and they’ll be safe with me. I won’t ever love you less, but I can PROMISE that I will ALWAYS LOVE YOU MORE!

Ethan, having Asperger Syndrome doesn’t define who you are as a person in this world; no, not at all. It is you that defines who you are as a person. It is you who defines how amazing a person with Asperger Syndrome can be!

You are my son, and I love you more than life!

When others try to make you feel bad about yourself, and there will be some who try, you remind them that you’re a child of God! Remind them that in His eyes and mom’s, you are wonderful! You need to remind yourself of this, too, when you feel upset. The more you remember these things I tell you, the less people will be able to hurt you with mean words.

I can’t wait to see what an amazing man you will become. It makes my heart fill with joy, and my tummy feel like there are butterflies in it! I’m so proud to call you my son, Ethan. I’m so thankful God chose me to be your mom, because no one else could love you as much as me!

“I’ll love you always and forever!” has taken on a whole new meaning in my heart because of you. I am blessed to say, “God gave you to me!” I love you!

This “In Their Own Words” essay was written by Jolene, the mother of a son who has autism.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Silent Language of Love

On Monday afternoons, Ethan, our ten-year-old with autism, attends a gymnastics class with eight other children who have a range of different special needs. Today has been a hard day for Ethan—there’s a note from school referring vaguely to “an incident at the computers” and later, a refusal to do any math at all. I’m poised in the lobby by the window that offers a little view of the class, ready for the worst—a blow-up, a melt-down, something—and instead I watch Ethan blink with surprise at a new girl walking into class. Taller than him by at least five inches, she has striking red hair, glasses, and Down’s syndrome. Right away, I can see that, for whatever reason, she has captured his interest. He flutters closer and examines her from different angles, a technique he usually reserves for particularly interesting machines. As they move through their warm-up routine, he positions himself as close to her as possible. A few minutes later, they are partnered to run through some somersaults and cartwheels together.

If I were in the room with them, I’d be barking directions and prompting conversations because I’m his mother and can’t help myself: “Ask her what her name is!” “Tell her yours!” “Find out what school she goes to!” In my heart of hearts, I know he’d probably do as he was told and, I suspect, the interest would die because pushing him into the realm of ordinary conversation has never interested him.

Instead, as she cartwheels, Ethan squeals with laughter, bounces up and down, and then turns serious: “Nice cartwheel,” he says, staring at her feet.

For Ethan, language is a perpetual stumbling block. Asking a question is a dangerous invitation to getting a question asked back, to launching in on the exhausting business of talking back and forth. Recently, though, he’s learned that compliments serve nicely as predictable and brief conversation starters.

“Thank you,” the girl says, nodding and readjusting her glasses.

Usually an exchange like this would do the trick for Ethan and be enough bonding for one day. He’d go off and find a heating vent or a light switch to examine close-up. But today, he stays with the girl, and—I can hardly believe it—never takes his eyes off her.

For the rest of the class they say nothing, but stay in each other’s vicinity. There’s a thumbs up at some point and even, when they get to the trampoline, a smile from her. At the end of class, they are meant to shake hands with their teachers, which Ethan usually does, but today he skips past his teachers to poke his hand out in the direction of his new crush. For a horribly long moment, it hangs there, hovering in the air between them. I send up a silent prayer: let her shake his hand, let her do something. Though he’d probably make a speedy recovery, I fear my heart will break if she doesn’t.

Then she surprises everyone: she looks down at both her hands, chooses the wrong one and gives it to him. As the room empties around them, suddenly they are standing side by side, holding hands, looking—more than anything else—stuck.

Is this terribly awkward? Are they dying of embarrassment? The woman who must be her mother and I exchange glances. Should we sail in and fill this silent tableau with our chatter and the exchange of names? Because she holds back, I do too and eventually they manage to end the moment themselves. Ethan notices a light switch he hasn’t flicked today; she spots her shoes, two ruby-red slippers to match her hair.

After it’s all over, Ethan says only this: “I liked that girl.”

Why, I wonder. Why did my son, who is afraid of new people, who needs to be prompted to notice other kids, take such a shine to her? I can only think he must recognize something in her face about what they share—that he knows, instinctively, the world is hard for her, too.

I’m still thinking about this scene the next morning at the bus stop. In our struggle to help Ethan gain speech, we have tried virtually everything that books have offered us. He’s got some sign language, enough that any time we yell, his hand fly up to his chest and beat out I LOVE YOU over and over. We make him ask questions, two of us at every dinner, two of his brothers; we prompt him through stories, start his words for him. We have forced Ethan to talk every single day and though I’m sure this was right, I also wonder if we haven’t learned something ourselves from his reticence.

When you don’t talk much, there are many things you also don’t do: you don’t make up stories, you don’t lie, you don’t exaggerate the truth to make everyone laugh and/or feel sorry for you. You also don’t manipulate, or bore people without realizing it. I’ve spent years being jealous of parents with chatty children until I got one myself and realized: Ah yes, some children do go on and on, in a way that isn’t always dreamy.

At the bus stop, Ethan’s two younger brothers are infinitely smoother than he. One chats up another mother with a story of closet monster, the other chucks sticks on a roof with his friend from up the street. Ethan as always, stands alone, humming, with a nervous eye on the horizon for the bus. Though he never talks at the bus stop—there’s too much to do, watching for the bus—he’s recently started a new practice of hugging the other mother and me as the bus pulls up. Usually he whispers what we should say before we can: “Have a good day, Ethan.”

It’s inappropriate, no doubt, and something we should probably discourage before he gets to middle school, but for now, the other mom loves it and smiles afterward. And there’s also this; our blissfully typical six-year-old says goodbye by chucking me his stick form the bus steps and calling, “Hold onto that until I get home.”

We have learned that silence is a cloud with its own silver lining. What Ethan manages to communicate in his odd ways—in his gestures, in holding hands with that girl, in his morning hugs—can seem, at times, truer than a half-hour of his brother’s nightly laments about playground popularity. Is Ethan bonded to others? Does he communicate his feelings? Sometimes I think that in the absence of easy access to words, there’s a way he says the real things better than the rest of us.

This “In Their Own Words” essay is written by Cammie McGovern and was originally published on AutismSpeaks.org.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – All You Need is Love

February 18, 2010 1 comment

I guess she is just depressed because her overbearing sister steals all of the attention. That’s why she doesn’t smile, run, play and laugh like a normal toddler. If I plan to home-school this child I have got to figure out why she hates to practice her ABCs and manuscript. She doesn’t care if she gets a sticker or not. I know she knows how to do it; she is just refusing. Her head is down in her arms on the table. Is it really possible for a 3-year-old to be this stubborn? She won’t even come out for a cookie!

My mom used to get motion sickness; maybe that’s why my daughter gets sick every time we get in the car. But why does she spin herself in circles in the backyard for what seems to be hours at a time without even getting dizzy? That just doesn’t make sense. It is strangely funny and weird that she likes to throw herself backwards on the floor over and over and over again as her father and I sit and watch completely bewildered and entertained at the same time. What two-year-old does that?

“I did. I asked the doctor again. She said it’s just her personality,” I tell her father.

Why won’t she get dressed? There is no reason for her to be so difficult about getting dressed. Just put on the jeans and shirt with the cute little design and let’s go already! I am going to be late to work again! She’s four years old. Her sister has been dressing herself and changing numerous times a day, much to my dismay, on her own since she was at least two. What is the problem? This child doesn’t seem to want to wear anything except pajamas or sweat suits. She can’t wear sweat suits everyday.

How did she get that math problem? She’s not even in school yet. Was she even listening to us? She was in the other room. She just blurted out the answer like it was nothing to her.

Why is she overreacting? I am just brushing her hair. I am being so gentle. It would look so cute if she would just let me put this pony tail in.

I read an article on autism. Eva doesn’t have autism. It is an interesting subject though. I’ll read it and think that thankfully my child does not have autism!

Okay, she’s five. It’s time to learn to ride a bike. Oh my goodness, she’s going to hurt herself if I let go. Why can’t she get this?

Look both ways when crossing the street. Hold my hand when we walk in the parking lot. You have to watch where you are going. Stay close to me. Be aware of your surroundings. Don’t wander in the store. Now I understand why parents have leashes for their kids. I have to physically have a hold on my child or she will disappear. Don’t talk to strangers. Yes, the store clerk is still a stranger. Please don’t tell everyone we meet such personal family information. It is a good thing I don’t get embarrassed easily. Just smile, take her hand so you don’t lose her and walk away.

Big girls take showers, not baths. What is the problem? Why is she crying? Outright refusal. It has been twenty minutes and she still hasn’t turned the shower on. I don’t even take that long of a shower. It has been an hour since she got in. Okay, she’s finally done. Did you wash your hair? It’s not even wet. What were you doing in there for an hour? Okay, you have to get back in. More crying. I will come in with you and wash your hair for you.

I justify my actions. “I do not spoil her! How outrageous! No, I don’t make excuses for her!” I know, although I can’t understand it, she cannot do it by herself. So I do it for her.

Back to the doctors. It’s a different doctor and this time, I insist. “There is something wrong. She is seven. She cannot ride a bike. She would trip over a blade of grass. She’s awkward.” She has my compliant daughter do a few minor gross motor activities and tells me she is not where she thinks she should be and sends us to a physical therapist that does some more in-depth testing with her and finalizes that she has Sensory Processing Disorder. Phew! That explains it! That’s why she won’t wear jeans. That’s why she hates showers. That’s why she begs for back rubs. That’s why she falls so much. Eva spends a year in physical and occupational therapy. I notice most of the other children in therapy definitely have autism, yet I brush off the thought once again.

Two years later we are doing homework. I’m sitting right next to her, keeping her on track the whole way and trying to be patient. I am explaining everything in a way she can understand.

“Wow! Did she just re-write that entire paragraph word for word after only reading it once? I can’t do that. I’m going to Google that.” And so I do because I am so intrigued. Every site it takes me to mentions autism.

At the age of nine, I take her to see a neurologist. I am convinced there is more to my child’s strange and intermittent brilliance, odd ways and sensory issues. How can I understand her? How can I help her, and how can I have a relationship with my child if I don’t know what is going on inside that mind of hers? After a few checklists and hour-long sessions of questions regarding Eva’s social interaction and behavior and we have a diagnosis! Asperger’s Syndrome. Tears form, but they are tears of relief. The relief of finally knowing.

For nine years, her father has insisted that something was just not right. When he suggested autism to me a few years back I told him I was on top of it. She had sensory issues, but I knew. My gut and my instincts told me daily that she just was not “normal.” I wanted to believe her doctor. It is just her carefree personality. So she’s different? She’s just innocent and naïve. That can be a good thing, right?

When I called her father to tell him about the diagnosis, he responded, “I told you. No one ever listens to me. She is to stay in a normal classroom. She is not stupid. I think she’s a genius. Do you hear me? Don’t let them dump her off.” I promise him that I won’t. I read every piece of information I can find on Asperger’s Syndrome and high functioning autism and I am convinced he knew because he had it, too.

My daughter is now going to be 11 years old. She is possibly the coolest person I know. She attends a regular school, is in a regular classroom and is on the honor roll. Her teachers, therapists and IEP team are extremely cooperative and proactive. She is in several social skills groups and she takes showers now. She has friends, attends sleepovers and although not gracefully, she rides a bike, dances and roller skates. She makes us laugh and makes us wonder. She thinks life is a bowl of cherries. She doesn’t sweat the small stuff. She is patient, faithful and so forgiving. She is forgiving of the world for not always understanding and not always being so kind. Forgiving of my ignorance at what she is talking about sometimes. Forgiving of the ever-confusing way us atypicals go about things. Eva continues to be kind though, to everyone she meets. She is incapable of being mean or malicious or untrue.  

“All you need is love, mom” were the words of my three-year-old-Beatles-fan daughter who has Asperger’s Syndrome.

 This “In Their Own Words” essay is written by Launa M. Taylor of Willoughby, Ohio.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Follow

Get every new post delivered to your Inbox.

Join 1,058 other followers

%d bloggers like this: