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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.


In Their Own Words – That Day

February 26, 2011 44 comments

This ‘In Their Own Words’ post is by Tracy Miranda.

I will never forget that day – December 7, 2010. After months of speculation, questions and wonder, it was official. My son was being placed on the Autism Spectrum. There were tears of course; immediately. Not that I have ever experienced it myself, but it reminded me of when people talk about a near-death experience. In an instant, my son’s whole life passed through my head and there were so many unanswered questions. Will he be okay? Will he be bullied? Will he get married? Will people think he’s stupid?  I don’t know. I won’t know until he gets there. I allowed myself to cry for a couple of days and that was it. Tears weren’t going to change anything. I wasn’t crying because of the diagnosis. I was crying because as a mother you want to do everything to ensure that life will be great for your child, and I just couldn’t guarantee that. I couldn’t fix it.

My next priority was to learn.  Boy was that a bit overwhelming. Like others, I was “aware” of autism, but didn’t totally understand it. In his evaluation, the psychologist report had mentioned that he had the potential to be extremely smart, but may be socially awkward. We are huge fans of “The Big Bang Theory” and after reading that my first thought was “oh my gosh we’re raising Sheldon!”

It was nice to be able to laugh at the situation, but research was obviously necessary. After doing an internet search for autism, I felt lost. There were so many websites, books, and blogs I didn’t know where to start. Who was I supposed to believe when the websites contradict each other? I remembered that teachers at my son’s school had done the Autism Speaks Walk that we had donated to, so that’s where I started. I came across a blog submission that brought me to tears. It was a letter entitled “Dear Future,” by Stuart Duncan. It was amazing; exactly what I was feeling. I didn’t know what the future would hold, but I wanted to be in it for my son.

I went to his website and immediately emailed him. I had to tell him how much that letter affected me and what I was going through. I needed someone to hear me that could relate to my situation. It was only the first week and I already found a friend. He answered my questions, put my mind at ease and introduced me to the amazing community of autism parents on Twitter. Just like a lot of people, I thought that Twitter was for useless facts about your favorite celebrities. I could not have been more wrong. I found parents just like me who were there to support each other and stick together. When you think that nobody else is going to understand you, someone will. Every time I sent a tweet with a question, I got answers from people who had been there. If I sent an update on something cool that my son did, I received cheers from people who had lived it. They got me. They were me.

My husband and I were taking the news a little different. He kept a lot of his feelings inside to process them while I wanted to share with everyone and start building my support network immediately. Mind you, some of them weren’t sure what to say, but I’m not sure I knew what I needed to hear either.  I did get a lot of people telling me that they knew “so and so” who had a child/grandchild/cousin etc who had autism and they were doing great, so I shouldn’t worry at all. Um, no offense, but that’s just not true. One of the biggest misconceptions about autism is remembering that it is a spectrum and everyone is different. Right now we have no idea what the future will bring.  At that time, I was still trying to process that it was my son; I didn’t care who else was dealing with it. I’m not that insensitive now, mind you, but in the beginning all that mattered was him.

After a couple of weeks when things were starting to get settled it was time for Christmas. I was learning a lot about what to do and what to expect for my son. However, I wanted to know how I could help others. It was shortly after Christmas when I found the answer. My son had received more presents than he actually needed and his birthday was only a few weeks away. Already family and friends were asking “what does he need?” Ummm, nothing. Am I a bad mother for saying that? Am I going to deprive him of presents from loved ones? No, but I wanted to do something better.

We decided to make his birthday have purpose, help others, and allow those that cared about him to do something meaningful. Give a gift that helps lots of kids. Bottom line, my son didn’t need any more “stuff.” I went back to the Autism Speaks website and found the Puzzle Builder fundraiser. I thought it would be perfect! I uploaded pictures of my son and we were ready to go. When I sent out the invitations for his birthday party, I sent a letter to everyone explaining what we were doing and why we were doing it. I got some very positive feedback about our choice. Of course I had to brag about how great our family and friends are and what we did, so I went back to my support system on Twitter.

Imagine my surprise when Autism Speaks answered me back and asked if I wanted to share my story. What??? Me??? Absolutely! So here I am. Our amazing family and friends raised approximately $800 with his puzzles!! That is a LOT of money for my little man’s birthday.  That was far beyond what I would have expected and fills my heart with joy and pride. We made a difference. My son still had a fun party and of course still got some gifts.

I know that the road ahead is still a journey of unanswered questions. However, my son is making great progress. He is very high functioning and doing great in school. I know how lucky I am that he loves affection because many parents of children with autism don’t get to experience that. My heart breaks for them. No matter what lies ahead, my son is the biggest blessing in my life and he makes me laugh everyday.  When people want to feel sorry for me, I remind them how blessed we are. Things could certainly be a lot worse. Autism is what my son has, not who he is.

We will be just fine.

To check out Tracy’s puzzle click here!

For more information about Puzzlebuilder visit here!

“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 – Experience Breeds Ability

February 17, 2011 22 comments

This ‘In Their Own Words’ post is by Susan Senator, a writer, activist, and the mother of three boys. Susan is the author of “Making Peace With Autism,” and “The Autism Mom’s Survival Guide.” Please visit Susan’s website for more of her blog and other resources.

I was looking for a place to toss a shovelful of snow that I’d just dug up next to the car when I thought about Nat.  Nat was still at the group home, but we had told him that as soon as the snow stopped and we were dug out, we’d come get him.  I threw the snow right or maybe left — we are really running out of space and the drifts bordering the driveway are about five feet high by now — and I imagined Nat and his brothers shoveling.

We are all really good at shoveling these days.  I pictured handing the shovel to Nat and seeing him push it down and push the snow aside.  No problem. But it used to be.  Such tantrums!  He couldn’t be outside with us.  And if we left him inside, he’d freak out in there, watching us working outside.  The horrible feelings I had, knowing I couldn’t be inside or outside.  There was no place to go, no place to be on this earth because my child was so unhappy and he could not understand what was going on.

Now he shovels snow willingly and competently.  Yet another skill, another feather in Nat’s cap.  How did this come to be?

We made him do it anyway.  We lived through tantrums.  We had shoveling (shopping days, movie outings, parties, holidays, vacations, meals, sleepless nights) days that ended badly.  Nat has been exposed to a lot of activities.  It’s as simple — and difficult — as that.  The more Nat experiences, the more he is able to do.  As soon as we realized that we needed to familiarize Nat with as many things as possible, we started to take him out, make him be around people and go to new places.  It was almost always really, really hard.  We tried a Cape Cod vacation:  terrible.  Each year, not as much.  Stayed with my parents:  it got better.  Switched to the ocean, rather than the bay side and brought boogie boards:  success.  Still difficult, because he walks in circuits and ends up too close to others’ blankets. But still, we enjoy ourselves for a lot of it.  Not all of it, but enough.

Challenger T-ball; failed.  A year later we tried Special Olympics gymnastics: success.  But bumpy success.  Nat sometimes slapped people or had tantrums or spaced out.  We stuck with it.  Or rather, Ned did.  I’m the coward of the two of us.  I find out about stuff and dream things up, but Ned very often ends up following them through. You gotta have at least one parent who doesn’t mind people staring, or an occasional pinch.  I think that even if you are a single parent, you should find a way to have a second person around sometimes.

Vacuuming.  Food shopping.  Parties.  Shoveling.  We took Nat places.  Even for abbreviated visits and outings.  Because even if he had tantrums during the event or activity, it was becoming a part of his repetoire.  Stored data.  Information he could draw on for the next time.  If there was a tiny seed of it already there in his mind, no matter how sharp and horrible that experience had been, it was now lodged there, resting in his gray matter.  And that is the most fertile ground there is.

“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 – It’s For Me

February 3, 2011 21 comments

This ‘In Their Own Words’ author is Jess, who can be found at Diary of a Mom. There she writes about life with her husband Luau* and their beautiful daughters – nine and-a-half year-old Katie*, an utterly fabulous typically a-typical fourth grader, and seven and-a-half year-old, Brooke*, a loving, talented, hilarious second grader who has autism.

It had been a long, full, long day. Yeah, I know I said long twice.

We had walked (or in Mama’s case, more accurately hobbled) around the track at the Autism Walk. We – or at least the smaller half of the we - had jumped in the bouncy house until Mama finally had to send Miss N in on a retrieval mission. We’d played in the ball pit. We’d eaten pizza at ten a.m. We’d visited with Grammy and Grandpa DD. We’d gone out to lunch. We’d had a grand old time with Miss N and Yo, B! Hell, we’d even lost a tooth for good measure.

We – or the bigger of us at least - were ready for sleep.

We were lying on Brooke’s bed, snuggling together in the dark.

After a day spent immersed in capital ‘A’ Autism – as opposed to a day immersed in little ‘a’ autism which would simply be, well, ya know .. a day - I wondered what she’d taken in.

Did she hear the speaker at the Walk that called autism a ‘disease’? Though it causes much dis-ease in our world, it is actually a disorder.

Did she hear the young adult standing in front of us repeating over and over – and over – again, “Were at the Autism Walk. That’s for me. We’re at the Autism Walk. That’s for me.”?

Did she hear the mom explaining to her grumbling son that he needed to suck it up ‘because we are walking to help the sick kids’?

Did she see the bracelet that her big sister insisted on buying that said, “I love someone with autism”?

Does she remember me talking to her about it before? On other nights, snuggled in the dark, just like this.

Did the word sink in?

Did she connect it to herself? To us? To our family? To who we are?

Does it have any meaning for her at all?

Did she notice it that day? Over and over and over again?

“Hey, Brooke,” I asked into the darkness, trying to sound casual.

“Yes, Mom?” God, how I love that clipped little version of ‘Mom’ – somewhere between Mum and Mom – the word so wonderfully hers.

“Do you know that we go to the Autism Walk because you have autism?”

I was trying hard to sound cheerful – to keep the words light.

It is so desperately important to me that she not grow up internalizing our demonization of autism. Someday she will understand these words. She will know that it is a part of her. Then what? I can’t let her hate such a huge part of her life.

She didn’t answer. She was too busy fiddling with my hair.

I know better than to think that because she isn’t ‘paying attention’ she doesn’t hear me. She may process it three days, three months or three years from now, but I’ll be damned if she’s not taking it all in.

“Baby, do you know that you have autism?”

I’ve asked this question before. I’ll ask it again.

It’s so important to me that she hears it from us and doesn’t take her understanding of autism from a man at a podium shouting for its eradication. It’s far too easy for the lines to get muddled, for the leap to take her where I dread that she might go. Where does my autism end and I begin? If I have autism does that mean that I AM autism? If autism is evil then I must be too.

Add that internal monologue to the list of my greatest fears.

“Do you know what that means, Brooke – when Mama says that you have autism?”

“Nope.”

She answered. On some level, I was getting through.

I measured my words carefully. I knew I didn’t have the luxury of paragraphs. Our world demands that a sentence – maybe two – suffice.

“Well, autism is what makes some things hard for you, baby. But it’s also part of what makes you special and wonderful and well, Brooke.”

“Yup.”

“A lot of kids at the Walk today had autism too. There are LOTS of other children just like you who have it too.”

She has the right to a community. If I can help it, my girl will know she is not alone.

“So when I wake up, the tooth fairy will bring me Blue from Blue’s Clues just like my Periwinkle. And then I will have Blue. Blue will be just like my Periwinkle.”

I smiled at her, though she couldn’t see me.

“Right baby girl, I’m sure she will.”

She’ll be ready someday. In the meantime, we lay the foundation. We demystify the words. We own them. It’s a place to start.

I stole a kiss before her head disappeared under the covers. She popped back out with a giggle and threw her little arms around my neck as we went through the charade of choosing a number for the nightly countdown. In Prairie Dawn voice, we counted to thirteen. By odds. As always.

We’ve got a long time to wade through this stuff together. One sentence, one bedtime, one Walk at a time. We’ll get through it.

And wouldn’t you know it? In the morning, under her pillow, there was Blue.


“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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