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Posts Tagged ‘In Their Own Words’

Communicating Through Cupcakes

July 7, 2011 23 comments

This is by Lena Rivkin, M.F.A., is an artist and graphologist living in Los Angeles.

Can you count the stars? Impossible! It’s just so comforting to look up and see that they are there, that you can count on them coming out every time. That pretty much describes the way I feel when I’m hanging out with Phillip at his house…when we’re baking cupcakes together. I look up at his face flushed with joy and watch as he adds the final touches – sprinkles, maybe – to the icing of his latest creation. In a fast-paced world, baking with Phillip is a quiet moment in time.

​For those of you who read my previous article about him, you’ll remember that my older brother Phillip, who is severely autistic and nonverbal, loves to stitch needlepoint. I create the designs and Phillip is the craftsman. Our collaboration provides a special connection between our worlds – without words. He has been living for 29 years in a group home administered by New Horizons (a non-profit organization dedicated to helping adults with developmental disabilities) in North Hills, California, and attends a day program at Tierra del Sol in Sunland.

​Since Phillip always exhibits a marked interest in repetitive behavior, for years we have engaged in needlepoint projects together at my house. And lately, we have been hanging out at the place where he lives to bake together.  We particularly enjoy baking cupcakes.  Historically, a recipe for a small cake first occurred in the U.S. in a cookbook appropriately titled American Cookery. It was written by Amelia Simms in 1796. However, the actual word cupcake (because it’s the size of a teacup) was first used in 1828 by Eliza Leslie inSeventy-five Receipts for Pastry, Cakes, and Sweetmeats. When Phillip and I bake cupcakes in 2011, we are entering into an innovative space where we can create an edible form of art.

​First we line each section of the muffin pan with crinkly, colorful paper cups, a simple, repetitive process that Phillip enjoys. Then we make a host of cupcakes, ranging from…oh, red velvet cupcakes with vanilla cream cheese frosting or pineapple-carrot, or dark chocolate with raspberry frosting. (Did you know that the height of the frosting should be about one-third the height of the cupcake? Sometimes, when we are feeling really daring, we make the frosting one half of the whole. It’s fun.) And we make strawberry and chocolate-almond, lemon-fudge, or orange-spice cupcakes too.

​The ingredients for cupcakes are all pretty much the same: butter, sugar, egg, and flour just like a standard layer cake. Yet what we end up with is a creation. For my birthday, we felt really expansive and made a full-size chocolate cake. We design our cupcakes differently every week, even though we start with a very ordinary cake mix. Sometimes we dip dried or fresh fruit into chocolate. The visual effects are very important, just as they are when Phillip is keeping busy translating my designs into his meticulously crafted needlepoint. In fact, while the cupcakes are baking, he works on his needlepoint.

​As with the needlepoint, there is a therapeutic process at work when we are baking. It involves eye and hand coordination as well as the joy of creation – and a sense of place. Although I still take Phillip to my house and other places (museums, parks, stores, and visits to friends), when we make cupcakes, we are enjoying being together in a consistent way in the place where he lives – his house. I feel that I am truly participating in his daily life with these home visits and learning about his activities, as well as the chores that are required of him. I particularly enjoy getting to know the outstanding staff – Samir Qureshi (the House Manager, who is also an excellent cook) and another member of the staff, Jamie Page, who are both an essential part of our weekly baking activity with their supportive and positive help with the baking.  I am also becoming closer to Phillip’s friends.  Everybody loves eating the cupcakes, so there is plenty of joy to pass around! Because the cupcakes bake quickly, while a tantalizing aroma fills the house, we don’t have to wait long to enjoy them.

​Cupcakes have attracted wide interest today. In fact, cupcake-making has become a competitive “sport.” There are actually “cupcake wars” sponsored by food companies where people vie on television to win big prizes for the “best” cupcake recipe. But Phillip and I, his friends and the supportive staff don’t want to enter our cupcake recipes into showcase competition. We simply love the warmth of making them and sharing them in friendship together.

“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.

Camping, uh… sorta

June 23, 2011 15 comments

Katie* is a ten-year old rising fifth grader who lives with her mom, dad, and eight year-old sister Brooke*, who has autism. Oh, and their awesome dog, Winston. When the spirit moves her, she writes at www.diaryofakatie.wordpress.com.

* Not their real names. (Except the dog.) 

Last night Brooke and I went camping. Sort of. We kinda set up the camping gear in my room, cause Mama didn’t want us outside. It was fun anyway. I put up my tent and Brooke slept in my teepee. Yes, we did bring a couple of pillows, stuffed animals and two sleeping bags and a TON of books. I think I might have emptied out Brooke’s whole book shelf! For me, I just brought a few long chapter books.

She got kind of upset last night cause I was sniffling and it makes her ears hurt. She said she was scared. I’m not sure if she was really scared. She might have been, but I think it was more that she was hurt and maybe a little angry. I wouldn’t say scared, but I guess it’s possible.

She doesn’t really understand the names of emotions.They get mixed up in her head and then she doesn’t know what to say so she just says scared. Like when I asked her how she felt when she was crying, she screamed “HAPPY!” And of course I don’t think that was the right answer. We practice with her and it helps a little, but sometimes it’s really frustrating when she screams that she’s happy with tears streaming down her face.

She finally calmed down and we went into our tents. We took all of the books out of the teepee and put them next to it. I think I kinda went overboard with the books. She might have been buried in there! I also put in, in case she finished the books – which was doubtful – a soccer ball, a toy car that I built, and three Barbie dolls. I left about two books in the tent in case she wanted to read before going to sleep. I did the same. I turned on my flashlight and opened my book.

I could hear next to me “MmmmMmmmmMMMmmmmmMMMmm” … the little stimmy noises that she makes. Soon I heard her softly singing, “Row your boat” I just smiled. Sometimes her noises and songs are pretty annoying, but this time I liked it. It made me feel calm. I curled up and fell asleep.

Someday I hope I get to go camping outside, cause the inside version was fun, but I’ll bet the outside version would be even more fun!

“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 – If You Knew

June 9, 2011 43 comments

This poem is by Lisa Madren, whose son has autism.

You do not know my child

But if you did, you’d regret the time spent that you did not know him

He is different

But that does not mean he is not a wonder to behold

Sometimes beauty lies behind what is considered “normal”

Sometimes the beauty of a special soul lies within an enigma

A pearl that lies imprisoned in a tough clam’s shell

A treasure that you must work hard to get at

To pry open

To find the jewel underneath

And once you saw that pearl, you would want to admire it

You would want to possess it

You would want to display it proudly

And you would wonder why you had not seen it underneath its shell before

And you might stop to observe the other previously unnoticed gems in the sea

You might discover that not all the coral must be red

Or all the fish must be golden

Or that all the seaweed must be green

To have value

To deserve friendship

To be capable of love

If you knew my child your vision would widen to see all the colors and possibilities

That lie within all of God’s creatures

If you knew my child

If you really knew my child.

“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.

The Icing on the Cake?

May 26, 2011 24 comments

Ajay Rochester is a best selling author of 5 books on health and wellness and was host of The Biggest Loser Australia for 4 years. She now lives in Beverly Hills California with her son Kai, has a TV show in development and is currently working on her latest book “247 toothpicks – Living, Loving and Laughing with Aspergers!” You can follow her journey at www.chasingoprah.com

Putting the finishing touches on my son’s birthday cake I realise I have made a huge mistake. No, not misspelling his name, not miscounting the number of candles but making the wrong number of penguins to sit atop theAntarcticasnow scene I have spent the last week making. It has to be seven penguins or it just won’t be the work of love I want it to be.

There won’t be a foot stamping “I want a pony daddy” scene like Veruca Salt in Willy Wonka’s Chocolate Factory but it can mean the difference between a peaceful week leading up to the birthday picnic we have arranged or constant obsessing and begging to make the penguins total seven, more than likely winding up with him making his own out of paper and plasticine, placing it on top, unintentionally bringing the whole cake down – a little like our life in general – beautiful one day, stormy the next!

But, if “fixed”, could go so far as avoiding or at least minimising the inevitable anxiousness and almost guaranteed teary meltdown we always experience moments before any social occasion out of the normal weekly routine not excluding birthdays. It’s like my son has permanent stage fright except that in the words of the late great Shakespeare, “…all the world’s a stage…”

And before the high and mighty perfect parents with perfect children (aka the deluded ones among us) tut tut and say it is all about having discipline and being well behaved I must explain that my son has Asperger’s Syndrome – a high functioning form of autism .

Every kid is different, every day is different, every age changes the way in which it manifests, diet and nutrition can make all the difference one day and do nothing another. There is no “cure”, no antidote, not enough experts, differing opinions, too many sceptics, too much politics, not enough support, way too much ignorance and far too much discrimination from those who don’t get it. And yet if I was given the opportunity to “send him back” and make him “better” I wouldn’t. He is my blessing, my joy, my challenge, more meaningful than any troubles I might ever have, much more important than anything that rises up in my own ego, more precious than any metal I own and exactly as he is meant to be – perfect in his imperfections.

He’s not retarded or slow or dumb, despite having been called all that and more from kids and stupid parents alike (lucky they haven’t seen me reply with my fists!! GRR). He just sees the world differently a little like having blinkers that enable him to only see the world his way.

He loves penguins (thus the penguin cake) because they flap their wings like he flaps his hands uncontrollably when he gets stressed – the official term is stimming but we call it “Pengy hands” in an attempt to embrace all that he is with a healthy dose of humor. If you can’t beat it then have a bloody good laugh about it as often as you can cause when the tough times come there can be some very dark days. We like to BE the light at the end of the tunnel rather than wait for it.

At various times he has sucked his fingers, sucked his hair, sucked his clothes, sucked pens, hated washing his hands, washed his hands obsessively, been water phobic, food phobic and is currently germ-a-phobic. He can’t stand loud noise or bright light, could not touch paper for about a year (that was a tough year at school) and for a year and a half could not touch clothing for two hours after bathing and as such I had to lie him on the floor like a baby needing a new diaper as I slid pants onto my eight year old son, crying inside for the pain, desperation and humiliation I saw on his face. But with a tickle of the tummy and a joke about him always being my baby we turned it into an intimate moment, a few seconds to tell him I love him taking the focus away from what was really going on.

These phases come and go but the list goes on. We had the lumpy sock syndrome for a few years, with Kai frozen in his inability to get his shoes on his feet and get out the door to school crawling under the bed, smashing his head with his foot calling himself stupid and retarded and wishing he could die because in the midst of his disorder he knows it is not “normal” to feel these things.

Knowing him as well as I do, I know (but can’t ever really KNOW!!) the tsunami of fear rising up inside of him every time we do something out of the ordinary including having a birthday party – something every kid talks about year round! Not knowing what the next part of his day will smell or sound like, not knowing how the people will be, what it will look like, what will happen, whether or not he knows their names, how long it will go for, what he is expected to do and what might happen if something goes wrong if he can get there at all…it’s like putting a French speaking professor of science in a room full of Japanese history students and expecting him to teach the class and have the students tested at the end. Most kids would be peeing their pants with excitement whereas my boy wets the bed with fear, still at the age of eleven.

And so, with that old adage of “you have to pick your battles” as a parent of a kid with Aspergers you take that to a whole new level. You give them as much security as you can, as much familiarity as is humanly possible, including making seven penguins on his birthday cake because inside he will be happy all day knowing that that one thing is perfect perfect perfect perfect perfect perfect perfect and therefore gives him the solid foundation he needs to deal with all the other unknown frightening overwhelming factors of that day.

That way when we blow the candles out on the cake we can say, “Happy Birthday!” and mean it!

“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 – Be Still

April 14, 2011 30 comments

This blog post is by Cheairs Graves, the mother of Dawson and Mae. Her son Dawson has autism and she shares her story on her blog ‘Redefining Typical.’


“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.


 

Why Autism is Important to Me

March 31, 2011 19 comments

This is a guest post by Darrin Steele, the Chief Executive Officer of the USA Bobsled Team and father of a son with autism.

I have spent the better part of my life figuring out how to out-compete other people. I did it as an athlete and now I do it on their behalf as we represent the nation in bobsled and skeleton. I have taken those same skills and applied them to my career, my education and now to my children as I help them succeed. Seems like a pretty basic concept, right? You compete, you try to win, end of story. Not quite. When you drill down a level and ask a few questions, things get a little messy. What do you win? How do you know if you won? How do you define success? Is there only one winner? What does 2nd place get you? What if the competition is weak? What if it is great?

I was taught a valuable lesson on this very topic from a freshman girl on the high school track team I coached while training for the 1998 Olympics. I was competing against the best in the world; so some of these high school athletes provided quite a contrast.  One such athlete was Sara. Sara was a sweet girl and near as I could tell, had no detectable athletic ability whatsoever. Throughout the season, Sara had tried and failed at almost every event she attempted, but she never seemed to get discouraged. In the final meet of the season she told me she wanted to run the 2-mile. When I asked her if she was sure and gently reminded her that she had gotten lapped in the 1-mile race the week prior, she just smiled and said, “Yep, I want to do it.”  So, I reluctantly entered her in the race.

It was painful to watch. My heart was breaking as she ran the final lap by herself. As I waited for her at the finish line, I tried to think of a way to console her after failing in yet another event. I was clapping as she finished when something happened that I’ll never forget. The moment she crossed the finish line, her arms shot up in the air and she looked at me with a beaming smile and shouted, “I did it!” As she hugged me, I finally understood. She had no delusions of beating anyone in that race. She had never run that far before and her goal was simply to finish. We are inundated with medal counts and win/loss records from all around us, but what truly drives us and what truly matters is the challenge we put on ourselves. For some, this internal challenge will result in Olympic medals. For most it will not, but that challenge is no less important. Society loves to help us define success, but the truth is that it is individual and personal. I was feeling sorry for Sara all season, but I was wrong. She may have finished last in every race, but she didn’t lose once. She just might have had a most successful season on that team.

That concept has special meaning during the month of April. April is Autism Awareness month and for thousands of autistic kids, personal challenges are simply part of their lives. In a world where we are wired to win and strive for success, where does an autistic child fit in? The answer is simple. Like with Sara, success is defined by the individual and has less to do with the finish line than the journey it takes to get there. Or, in the words of the Olympic Creed,

[“…the most important thing in life is not the triumph but the struggle. The essential thing is not to have conquered but to have fought well.”]

Very often, understanding something as complex as autism requires a face and a name. For this, I will introduce my son, Darrin Khan.

He is in kindergarten now and we have essentially thrown out the playbook. Autism has put him more than 2 years behind his classmates. He likes to arrange his toys by color and lines them up in patterns that make perfect sense to him. He can become fixated on certain things and has his share of meltdowns. His speaking ability is improving, but he has a long way to go before he will be having conversations. Most people are satisfied with the idea that this is who he is. Those are all traits that we can attribute to autism and while they are a part of who he is, they are not how we define him. If all you hear are the words he can’t say then you haven’t heard him. If all you see are his limitations, then you haven’t seen him. If all you know is that he is different from other five year olds, then you don’t know him. And that’s too bad, because like most autistic kids, he is amazing.

Those who do know him also know that he loves to laugh and make other people laugh. They know that when he kisses you he might slip you the tongue, and then laugh hysterically at your reaction. They know that he sprints from place to place because he can’t wait for his next adventure; that he says “cookie” all the time because he knows he will get tickled for saying it and that he gets sad when he sees someone else sad. They know that at the age of three he could complete puzzles faster than his older sisters and could memorize entire TV shows and movies. They know he is sweet, his heart is big and he is full of personality.

As we struggle to learn his language and he struggles to learn ours in a world that he doesn’t fully understand, my son continues to teach as much as he learns. He doesn’t have the same hang-ups about his future as we do and he doesn’t really care about competing with other people. He is all about right now. He is about having fun, laughing, getting chased, going for airplane rides, riding his bike faster than we can run, dancing without shame to whatever Wiggles song is playing and living in the moment with no thought of tomorrow.

With autism, the future is unknown. There are plenty of autistic children who are able to overcome enough of their challenges that they can live on their own and thrive in society. There are also plenty who are not able to live independently and need assistance for the rest of their lives. Those are very different futures.

The future will come and we’ll do our best to help make it a great one. He has a long road with no finish line in sight and we don’t know how far he will go or how fast. Our job is to support him along the way and enjoy the ride. After all, that is what being a kid is all about; regardless of the hand life has dealt you.

One in 110 children born today will be autistic. This is a cause that I have a personal connection to and USA Bobsled & Skeleton is proud to be partnered with Autism Speaks. On April 1st and 2nd, the nation will be “Lighting it up Blue” as part of the autism awareness program. Home Depot is featuring blue light bulbs as part of this program and millions of Americans will be lighting up their homes, neighborhoods and businesses in support.

Autism is not the only challenge in the world but for the month of April and for these two days, I am supporting this program and asking others to join me in this effort to Light it up Blue. The idea is not to pity these kids or these families. The idea is to educate society about this disorder and

these strange, unique, misunderstood and wonderful kids who have a few more challenges than the rest of us. Give them some understanding, some patience and every once in a while a little help. At the end of the day, they are still just kids who want to be kids. Let’s help give them that.

For more information about the Light it up Blue, please visit website.

In Their Own Words – Autism: A Blessing

March 17, 2011 61 comments

This “In Their Own Words” is by Joy Smith. She is a mother of four, and her son Adrian was diagnosed with autism in April of 2006. To read more, check out Joy’s Autism Blog.

Have you ever wished you could turn back time? Not say that stupid thing? Not accidentally cut your finger while cutting things while cooking? Not slipped on the ice? Not hurt someone’s feelings? Not yelled at your kids? Not got in that fender bender? Oh how I’ve wished I could turn back time!

I was talking about this to my mom one night. She fell of a ladder at work last November and broke her leg pretty bad. She had to have surgery on Thanksgiving last year to repair the damage. She told me how she wished she could turn back the clock and been more careful on that ladder.

In so many instances it seems like that would be so awesome. And while we’re at it not only would a “rewind” button for life but a “volume,” “fast forward,” and “mute” button would be nice , don’t even get me started on that!

But all this strange combination of events that add up our lives shape who we are. All these little or not so little things shape us, mold us into hopefully better people then we once were.

On Facebook my friend had posted a challenge to write one thing we were thankful for from now until Thanksgiving. I thought it was a great idea and took part. The very first thing that I thought of to be thankful for was autism. It has shaped me into a better mother, a better woman.

Autism teaches compassion.

Autism teaches acceptance.

Autism teaches patience.

I am a work in progress and the gift of autism that God gave me is shaping me, molding me everyday. And I am so thankful for that! People may pity other people for having a child with any sort of special needs but honestly, at times, I pity people that don’t get to experience this!

“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.


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