A local elementary student wants to help children understand autism. Ashley McNeal has several siblings with the disorder, so she decided to write a book with the hope of raising awareness.
Ashley is a third grader at Reynolds Elementary School. On Monday she read a book she wrote called The Wacky World of Autism.
Please click this link to view the video about Ashley’s book: http://www.13abc.com/global/category.asp?c=210531&autoStart=true&topVideoCatNo=default&clipId=8899346
“She came to me and said, ‘I think we should write a book about autism,’ says mom April Sepulveda. “She said ‘There are a lot of kids who do not understand about autism, and I think they need to know.'”
Ashley has a wealth of knowledge on the subject. Four of her five siblings have autism.
“My mom and dad told me autism is something that happens to Ike which makes him act different. At first, I was scared,” says Ashley.
Her brother Isaiah, also known as Ike, is the main character of the book
“My favorite part of the book is when I try to give my brother a hug before I leave for school,” she says.
Although Ike doesn’t like to be hugged, Ashley now understands why.
“He seemed to live in his own world,” she says. “Now I know the reason is autism.”
She wrote the book so that other children could understand as well.
Her mother couldn’t be more proud.
“God gave her to me in the perfect order, because she is patient, and she is the oldest. Very patient and very understanding, and she is the type of person that can see the good in everything,” says April.
Ashley says you have to learn how to treat children with autism.
“Be respectful, and don’t stare at them, because it might make them nervous,” she says.
She hopes her book will help.
- Family life with autism (hannahraphy.wordpress.com)
by Allison Ziering Walmark, via SheKnows.com
It can’t be easy being the sibling of a child with autism. But this little 6-year-old girl not only copes with the situation, she’s also a tremendous source of support. She’s the light of her brother’s life and for that, he’s so very thankful.
My Sister, My Hero
My children are 16 months apart. With Ethan, our firstborn, we tried — and had fun trying, darn it — for five months before we hit the jackpot. (You might want to steer clear of room 901 at the CuisinArt Resort in Anguilla.)
When Ethan was 6 months old, our daughter Eliza was conceived, literally on my 40th birthday. (Tacky and trite, yet entirely true.) Still nursing Ethan and with just one newly returned monthly cycle under my belt (figuratively, not literally), I was convinced — and, more importantly, convinced my husband — that there was no way “we” could get pregnant so quickly. Famous last words.
The perfect present
My pregnancy was confirmed on Mother’s Day of all times. Who knew a pregnancy test would be the perfect present? At that time of my second pregnancy, Ethan’s development was right on target, and yet, I cried, feeling guilty, that somehow a new baby would short-change the unspoken “Mommy and Ethan alone-time” contract I had with my son.
The birthday girl
Eliza turned 6 on January 23 (1-2-3). Ethan, as always, was by her side and sang and played “Somewhere Over the Rainbow” in her honor. While Ethan has full speech — and a plethora of four-letter words thanks to Eminem and Prince — he has one more gift he wants to give his sister, which as his mother, I have taken the liberty to elucidate, as he’s too busy composing his next big symphony. (As it happens, he’s entitled it “Penis Poop.” Sigh.)
A letter from Ethan
For my darling sister, on the occasion of her 6th birthday,
You saved me. Literally, you saved me. The day Mommy and Daddy brought you home from the hospital is the day I completely shut down. In essence, your arrival forced them to realize my development wasn’t where it should be, and they called Early Intervention services. Without you, who knows if they would have stopped listening to everyone who said I was “just being a boy, and boys develop at a slower pace.” (More famous last words.)
You might not know it, but from day one, you have been my advocate, my protector, my teacher, my rescuer, my hero. My baby sister by birth order… a giant presence in my world.
We have two different sets of strengths: I am more musical, you are more athletic. I like computers, you like books. I like pirates and soldiers, you like princesses and Barbie. We don’t have a conventional relationship. Yet together, we are one very powerful force. We very much complete each other. Yin and yang. We are forever a team. We are The E-Team.
Sometimes I know you resent the attention that my music and autism engender, and I want you to know that I understand. I hear you tell Mommy and Daddy that you want to be on television… that you want to be interviewed for the newspaper… that you want to be on YouTube. Eliza, you don’t need to be on TV for everyone to see how talented, special and unique you are. You are already a star. You are my star. You are Mommy and Daddy’s star, too.
You are beautiful, Eliza, and not just because you have blonde curly Shirley Temple hair and blue eyes that make people stop in their tracks. That’s just your outside. Your true beauty is what’s inside, for it’s your heart and mind that make everyone you meet fall in love with you.
“You are one of those rare people lit from within.”
You are kind, thoughtful and wise well beyond your years. You are one of those rare people lit from within. You are the first to help a friend who is hurt; with a friendly smile and a kind word, you soothe their physical or emotional pain. You are quick to forgive a slight. Rather than receive material birthday gifts from your friends, you asked that they bring in one grocery bag of non-perishable food items so that you might donate them to the local pantry to help the less fortunate. (Come to think of it, are you sure we share the same DNA?)
When your friends ask why I am “different,” you try to educate them and sweetly say, “My brother has autism and sometimes his brain gets confused.” It is you, Eliza, more than any other person in this world, who has helped make me more typical. Who has helped make me more present in this world. Who has made me want to engage with others. Who has given me a sense of self, a sense of place and a sense of humor. You make the real world look so fun and inviting, that you help lead me out of my mind’s darkness and into the light. I see that your world is a wonderful place, simply because you are in it, and that’s where I want to be, too.
Your patience knows no bounds. When I get angry, you take your hands and wrap them around my face and say, “It’s OK Ethan, you’ll be OK.” When I do something good, you wrap your hands around my face and say, “Great job, Ethan! I am so proud of you!” When I mispronounce a word or say something inappropriate, you wrap your hands around my face and say, “No, Ethan. Say it like this.” And, I love it all, because I know you want the best for me and your support comes from the heart. Hopefully you know how proud you make me, as evidenced by my front-row claps and cheers at your ballet and gymnastics recitals. When you dance to my piano music, you make my heart sing!
Your teachers are amazed at your depth of empathy and they tell Mommy and Daddy all the time. One day, your teacher asked your class, “What are you thankful for?” Many kids mentioned a television show or pet. You answered, “My brother.” On more than one occasion, you have left certain extra-curricular classes in tears, because while you got a sticker, the teacher didn’t have an extra sticker that you could give to me at home.
Sometimes, I do feel guilty that I’m not the average, run-of-the-mill “typical” brother. But, it comforts me to know that you will always have friends like Lulu and Raya and CiCi and Marin, sisters-in-spirit, with whom you share “brothers with differences.” Rest assured that all us “brothers with differences” love our sisters just as much as you love us. We just have different ways of expressing our love.
While I know a birthday is traditionally a time to receive gifts, you should know that Mommy and Daddy also gave me a gift. That gift arrived six years ago — and every day since — and that gift is you. Having you as my sister is truly the greatest gift — and the greatest therapy — of all. I love you, Eliza!
Your loving brother,
P.S. My room is still off limits to girls (except Mommy), so keep out.
Sometimes it’s a good idea to look at our children through the eyes of their brothers and sisters. This is a wonderful video and I wanted to share it with you all.-Ed
- Siblings of Children with Autism (fox8.com)
With Lemonade, Siblings Earn Bike For Disabled Brother
PRESTON, Idaho — The ability to ride a bike is something many take for granted, but not the Smith siblings.
Dominic, 8, and Paisley, 6, have not been able to ride bikes with their older brother, Seth, for two years. Seth has Fragile X syndrome and autism, which prevents him from enjoying some of the activities that are rights of passage for most children.
Saddened by their brother’s inability to participate in one of their favorite pastimes, Dominic and Paisley sprung into action. They first asked their mother, Laci Smith, if they could sell their toys to raise money for a bike for Seth that would allow him to ride again. Most of the bikes that Seth would have been able to use cost more than $1,000, and the two were excited to get started.
“I told them they didn’t need to sell their toys, but they wanted to do something,” Laci said. “The lemonade stand was Paisley’s idea.”
A lemonade stand, to earn a bike for their brother. Fifty cents a cup meant it would take a lot of lemonade to buy a bike, and Laci only expected friends and family to show up to the event. But the Preston, Idaho, community, and even some Utahns, were ready to unite behind the children’s cause.
I told them they didn’t need to sell their toys, but they wanted to do something.
“The response was just overwhelming,” Laci said. “People came from Cache Valley, and we had people come from as far as Brigham City.They would tell the kids how what they were doing touched them: that they would put their brothers needs above their wants.”
In all, the kids sold thirteen gallons of lemonade on June 2, enough to deliver some good news to their older brother, who was overwhelmed by what his siblings had done for him.
“He said, ‘Wow, for me?'” Laci said. “You could tell he was kind of getting teary eyed, and I was shocked he understood it that much, but he did. And that’s what made me really emotional too: that he understood that his brother and sister cared about him that much.
The more than 1600 cups of lemonade the siblings sold earned enough to pay for something even better than a bike: a $400 conversion axle kit that converts any bike to a tricycle.
“Seth wanted a regular bike,” Laci said. “He said the other bikes were funny looking. He wanted to look like a normal child riding a bike with his brother — he wants to be as normal as possible.”
“The only thing was, he said it has to be green.”
Laci ordered the conversion kit immediately, and soon, Seth will be riding his green bike with his brother and sister. And for Dominic, it’s just one more way to show the world that his brother is really just like him.
Dominic is the only Smith child who was born without Fragile X syndrome, which he said puts him in some difficult situations. Leading up to the lemonade stand, he made a YouTube video to share his story with the world.
“Sometimes I feel alone because my friends don’t understand what it’s like,” he said, explaining his siblings’ limitations. “People stare at him. Sometimes they whisper. I get frustrated … one kid called my brother the ‘R’ word in front of me.”
But his siblings are no different than anyone else, he said. They just can’t help what their bodies do, sometimes. And he will be there for them, whether to stand up to the bullies or to serve lemonade for hours to earn a bike for his brother.
“They are normal to me,” he said. “I (love) them very much … My parents said I’m special, too. I was sent to my family to protect my siblings. Even if you think they are different from me, I don’t.”
“I’m living in the here and now day to day with Jacey and Jacey is my Autism” says Amy Brooks, mother of five including four year old Jacey with Autism.
Jacey was a different baby from day one. When her development was behind schedule, her parents thought she was a late bloomer. However, by the age of two they knew something wasn’t right. Amy says, “its definitely heart wrenching because you think oh maybe it’s something else she’ll grow out of. And then they say Autism and its like huh, that’s life long”.
It took some time for denial to wash away and a new reality to settle in. Amy says, “alright well, I’ve had my pity party, now what do we do for Jacey”.
A diagnosis of Autism means life as they knew it changes forever and it’s time to adapt. Amy says, “I thought I had parenting down when I had my first two kids and then I had Jacey”.
Seemingly simple communication is one of the biggest challenges. Amy uses the analogy, “can you imagine going and living in France or some other country where nobody understands a word you’re saying and you don’t understand them”.
The usual logical thinking approach to parenting just doesn’t work with a child like Jacey. Amy says, “she sees the here and now and she doesn’t necessarily understand what she did was wrong”.
“I just try to make sure that I have eyes on Jacey” says Amy. Caring for a child with Autism is difficult on parents and it’s not easy for siblings either. When I asked Jacey’s eight year old sister, Bailey, is she loves Jacey, Bailey hesitated and said she can, but sometimes it’s hard to. Bailey explains, “I tell her no, but she doesn’t stop”.
Their six year old brother, Carsten, agrees, “she (Jacey) makes me frustrated”. He adds, “when she gets into my room and I don’t want her in, I close the door and lock it”. So Jacey’s siblings learned to adjust. For instance Bailey has a toolbox she keeps all the things she doesn’t want Jacey to get into under lock and key.
Bailey and Carsten learned early on that they can’t come first all the time. Bailey says, “sometimes she gets most attention”. Carsten says, “I don’t need all the attention. She only gets 1 adult’s attention, so I can talk to the other adult”. Amy explains to make sure no one ever feel left out they “take kids on individual little dates with mom or dad”.
Even with the added stress, such as having to keep all doors locked. They are still a family. Amy says, “Bailey’s like a big mom to her. She’s very sweet and loving”. Carsten says, “I do love my sister”. Bailey explains, “I have to tell her no because she doesn’t understand that much. She’s not that old and she has Autism, so she doesn’t understand as much”. Amy says, “when they’re sleeping and you go and see them, it completely washes away anything that happened that day”.
Jacey is doing better than they ever thought possible. She has about 200 words now and will be starting kindergarten in a regular education classroom in the fall. The goal is that Jacey will be able to one day be an independent contributing member of society and with the path she’s on at just four years old, she’s on her way.