Easter Seals Doing a Better Job Then Autism Speaks?

There certainly is strong feelings about Autism Speaks (AS) as an organization, both good and bad. I'm glad for all the awareness they create. We're doing as much as that as we can ourselves. But what is AS doing for Mom and Dad Autism?

Many people get pretty heated when it is brought up that AS is putting their money towards research and nice salaries for company executives. Sure research is all well and good, BUT again, what about Mom and Dad? Learning about the causes of Autism are a bit of a moot point for parents financially strapped trying to help their children with Autism. Wouldn't it be nice if some organization was there for parents... NOW?

Easter Seals to the Rescue

Easter Seals has come out with a new study: Living with Autism Study. Here is some information about it:

Autism affects more than 1.5 million Americans and their families. Critical services and supports are needed to raise a child with autism, but they are few and far between.

In cooperation with the Autism Society of America, Easter Seals surveyed over 2,500 parents of children with autism and typically-developing children -- about daily life, relationships, independence, education, housing, employment, finances and health care.

The results gathered from our groundbreaking autism study paint a startling picture of the life-long fears and anxieties people with autism and their families face ... and the disparities among parents of children with autism as compared to parents of typically developing children:

• Nearly 80% are extremely or very concerned about their child’s independence as an adult.
• Only 14% feel that their child will be able to make life decisions.
• Only 17% think their child will make friends.
• They report that they’re “financially drowning,” with concerns for their child’s financial future.

Thanks to the generous support of MassMutual Financial Group, the findings are now available to you. As an Easter Seals national corporate partner and the study sponsor, MassMutual is committed to serving children and adults with autism through its exclusive SpecialCare program, a solution that gives families living with autism and other disabilities access to information, specialists, and financial strategies that can help improve their quality of life.

Millions of families are desperate for solutions and resources. Easter Seals and others in the autism community are doing their best, but current systems, structures and resources to help people with autism and their families do not adequately meet the growing need, especially for adults with autism.

Easter Seals will use these findings to raise awareness of and advocate for the life-long services families living with autism desperately need.

Story and how to get the study link

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Wow, isn't it about time? I think many were hoping that this is what AS should have been doing years ago. But, finally someone is, Easter Seals. Looking at their website I find that they are like AS and do ask for donations. I'm not sure about the rest of you, but I'm ready to go to an Easter Seals version of Walk for Autism. What do you think?

Dad

(Here is a cute Ammon and Mary pictures with Santa, for those who've asked for cute pictures)

Trying to Be More Like Jesus

On Sunday, November 9, 2008--yesterday--we did something we have rarely attempted over the last couple of years or so...we all went and stayed at church, ahh!!!!

It was a special occasion. The children's group at our church, called the Primary, put on their annual sacrament meeting presentation. Our "sacrament meetings" are when the entire congregation gathers together in the chapel for one hour church service, this is in addition to a couple of hours of classes. The children ranged in ages from 3 to 11, and even though our group of kids is kind of small--we have a lot of empty nesters and senior citizens in our congregation--it's always a BIG deal. After all, hearing kids sing and gave little talks during church service is absolutely precious. Those beautiful young faces looked like little angels up there.

Our youngest, Mary, 3, was wearing an all white ruffled dress that kind of bounced and flowed along with her as she moved. She has been able to join and stay with the Primary most of the time with the help of a bag of books the leadership put together to help encourage and calm her down. But, apparently there was just too much stimulation with the entire congregation and their visitors like grandparents and aunts and uncles and cousins to keep Mary with the program, literally and figuratively! First, she wanted to draw, then she wanted to sit on my lap, then she kind of wanted to join her class, but when she started climbing the steps to the stand, she turned around and smiled like a little showman. She then started jumping up and down on the stairs, beaming all the while as she made a louder and louder thumping sound. After whispering a few times to get down, she had to be fetched. She didn't last much longer and Bobby, 14, had to chase after her into the hallway.

Ammon, who just turned 5, always loves being in the chapel when we sing hymns, he loves music. But, when we're not singing, we lose him quickly. I think we almost got through to the passing of the sacrament--the bread and water in our religion, to help us remember the body and blood of Jesus Christ who sacrificed Himself for us so that we can receive a remission, or forgiveness, of our sins--when John had to take off into the hallway with Ammon and Sarah. Sarah lasted the longest, was pretty calm and quiet until she kept bouncing and making her sounds that got too loud and distracting.

So, after the passing of the sacrament, they started the Primary program. Mary was supposed to be one of the first speakers, she'd be repeating a couple of sentences with help from a leader. She made it back to the chapel by then, but kept going here, there and everywhere, and Bobby ended up having to follow her out again. So, Mary didn't make it to the pulpit--like she cared anyhow little stinky winky....

Nephi, 9, did an amazing job singing. He forgot his glasses, so he couldn't read the visuals for the lyrics, but he moved his mouth almost the whole time during the songs. He also did a good job reading.

Emma was asked to write a short little talk, and we realized that maybe we should have remembered to look at it before hand, some of it that is....She talked of her family. She said that she and all her brothers and sisters have autism, then she mentioned the severity of each kids autism. She said that we're a very close family, how sweet. She then said that mom and dad get mad and yell sometimes, but they still love us! She then said that Extreme Makeover Home Edition called us and wants us to apply, that we really need a new house because it's little and the babies destroy it, but we can't get on the show because we're renters. She then mentioned our documentary and that everyone should watch it when it reruns on Discovery Health and TLC. We're very proud of her, spoken from the depth of her heart, nothing genuine held back, and with the charisma of a true spokes person.

Near the end of the program, they did a little presentation of the special needs primary children. Unfortunately Sarah was in the hallway screaming her head off, so she didn't make it and Mary was AWOL with Bobby. A 10 year old boy started counting, this is huge for this child because he has classic autism and has been making huge strides in his language the past couple of years. This boy also said "Jesus!"

Then, one of the leaders talked a bit of how special these children are, and I think it may have included some talk of tolerance, patience, respect, and how much like Jesus these children are. We believe in our religion that kids and people with mental challenges are innocent, that they were already perfect in Heaven before they came to earth, but that they needed to come to earth to get a body more than anything, that and to be a learning experience and example to the rest of us, to help the rest of us become better and make it to Heaven too. The leaders tried to encourage and help Ammon hold up a picture of Jesus Christ in the garden of Gethsemanie. The children then sang "I'm Trying to Be Like Jesus". This song is my favorite of all the children's songs in our religion. It was so touching. I usually tear up when I hear this song, but there was just too much going on for me to soak it in--and before the song could end, Ammon dove head first from the dividing wall on the stand, then ran off, that boy!!!!

Here is a link to the song "I'm Trying to Be Like Jesus" by Janice Kapp Perry--I think it's sung by Felicia Sorenson though...

Sincerely,

Robin Kirton

A Story of Giving and Compassion

I received this story in an email to our autism_bites@yahoo.com account.

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The Folded Napkin

I try not to be biased, but I had my doubts about hiring Stevie. His placement counselor assured me that he would be a good, reliable busboy. But I had never had a mentally handicapped employee and wasn't sure I wanted one. I wasn't sure how my customers would react to Stevie. He was short, a little dumpy with the smooth facial features and thick-tongued speech of Down’s Syndrome. I wasn't worried about most of my trucker customers because truckers don't generally care who buses tables as long as the meatloaf platter is good and the pies are homemade. The four-wheeler drivers were the ones who concerned me; the mouthy college kids traveling to school; the yuppie snobs who secretly polish their silverware with their napkins for fear of catching some dreaded "truck stop germ", the pairs of white-shirted business men on expense accounts who think every truck stop waitress wants to be flirted with. I knew those people would be uncomfortable around Stevie so I closely watched him for the first few weeks.

I shouldn't have worried. After the first week, Stevie had my staff wrapped around his stubby little finger, and within a month my truck regulars had adopted him as their official truck stop mascot. After that, I really didn't care what the rest of the customers thought of him. He was like a 21-year-old in blue jeans and Nike's, eager to laugh and eager to please, but fierce in his attention to his duties. Every salt and pepper shaker was exactly in its place, not a bread crumb or coffee spill was visible when Stevie got done with the table.

Our only problem was persuading him to wait to clean a table until after the customers were finished. He would hover in the background, shifting his weight from one foot to the other, scanning the dining room until a table was empty. Then he would scurry to the empty table and carefully bus dishes and glasses onto the cart and meticulously wipe the table up with a practiced flourish of his rag. If he thought a customer was watching, his brow would pucker with added concentration. He took pride in doing his job exactly right, and you had to love how hard he tried to please each and every person he met.

Over time, we learned that he lived with his mother, a widow who was disabled after repeated surgeries for cancer. They lived on their Social Security benefits in public housing two miles from the truck stop. Their social worker, who stopped to check on him every so often, admitted they had fallen between the cracks. Money was tight, and what I paid him was probably the difference between them being able to live together and Stevie being sent to a group home. That's why the restaurant was a gloomy place that morning last August, the first morning in three years that Stevie missed work.

He was at the Mayo Clinic in Rochester getting a new valve or something, put in his heart. His social worker said that people with Down’s Syndrome often have heart problems at an early age so this wasn't unexpected, and there was a good chance he would come through the surgery in good shape and be back at work in a few months.

A ripple of excitement ran through the staff later that morning when word came that he was out of surgery, in recovery, and doing fine. Frannie, the head waitress, let out a war hoop and did a little dance in the aisle when she heard the good news. Belle Ringer, one of our regular trucker customers, stared at the sight of this 50-year-old grandmother of four doing a victory shimmy beside his table. Frannie blushed, smoothed her apron and shot Belle Ringer a withering look.

He grinned. "OK, Frannie, what was that all about?" he asked.

"We just got word that Stevie is out of surgery and going to be okay."

"I was wondering where he was. I had a new joke to tell him. What was the surgery about?"

Frannie quickly told Belle Ringer and the other two drivers sitting at his booth about Stevie's surgery, then sighed: "Yeah, I'm glad he is going to be OK," she said. "But I don't know how he and his Mom are going to handle all the bills. From what I hear, they're barely getting by as it is." Belle Ringer nodded thoughtfully, and Frannie hurried off to wait on the rest of her tables.

Since I hadn't had time to round up a busboy to replace Stevie and really didn't want to replace him, the girls were busing their own tables that day until we decided what to do. After the morning rush, Frannie walked into my office. She had a couple of paper napkins in her hand and a funny look on her face.

"What's up?" I asked.

"I didn't get that table where Belle Ringer and his friends were sitting cleared off after they left, and Pony Pete and Tony Tipper were sitting there when I got back to clean it off," she said. "This was folded and tucked under a coffee cup." She handed the napkin to me, and three $20 bills fell onto my desk when I opened it. On the outside, in big, bold letters, was printed "Something For Stevie". Pony Pete asked me what that was all about," she said, "so I told him about Stevie and his Mom and everything, and Pete looked at Tony and Tony looked at Pete, and they ended up giving me this" She handed me another paper napkin that had "Something For Stevie" scrawled on its outside. Two $50 bills were tucked within its folds. Frannie looked at me with wet, shiny eyes, shook her head and said simply: "truckers."

That was three months ago. Today is Thanksgiving, the first day Stevie is supposed to be back to work. His placement worker said he's been counting the days until the doctor said he could work, and it didn't matter at all that it was a holiday. He called 10 times in the past week, making sure we knew he was coming, fearful that we had forgotten him or that his job was in jeopardy. I arranged to have his mother bring him to work. I then met them in the parking lot and invited them both to celebrate his day back. Stevie was thinner and paler, but couldn't stop grinning as he pushed through the doors and headed for the back room where his apron and busing cart were waiting.

"Hold up there, Stevie, not so fast," I said. I took him and his mother by their arms. "Work can wait for a minute. To celebrate you coming back, breakfast for you and your mother is on me!"

I led them toward a large corner booth at the rear of the room. I could feel and hear the rest of the staff following behind as we marched through the dining room. Glancing over my shoulder, I saw booth after booth of grinning truckers empty and join the procession. We stopped in front of the big table. Its surface was covered with coffee cups, saucers and dinner plates, all sitting slightly crooked on dozens of folded paper napkins.

"First thing you have to do, Stevie, is clean up this mess," I said. I tried to sound stern. Stevie looked at me, and then at his mother, then pulled out one of the napkins. It had "Something for Stevie" printed on the outside. As he picked it up, two $10 bills fell onto the table.

Stevie stared at the money, then at all the napkins peeking from beneath the tableware, each with his name printed or scrawled on it. I turned to his mother. "There's more than $10,000 in cash and checks on the table, all from truckers and trucking companies that heard about your problems. "Happy Thanksgiving."

Well, it got real noisy about that time, with everybody hollering and shouting, and there were a few tears, as well. But you know what's funny? While everybody else was busy shaking hands and hugging each other, Stevie, with a big, big smile on his face, was busy clearing all the cups and dishes from the table. Best worker I ever hired.

If you shed a tear, hug yourself, because you are a compassionate person.

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We’re not in as dire straits as this young man was, however, we continuously receive emails from ‘Parents of Autism’ that tell of stories similar to this one. Sure we’ve had a bit of struggles with our six and because of that we understand the need for the ‘AutismBites Foundation’ we have been attempting to create.

Please visit our website again, http://www.autismbites.com/. Read about what our hopes are for the Foundation on its page. Then if YOU are able, click the donate PayPal button. If you are not able, send the information to someone who may be able to help with a donation.


P.S. We've just started a family business where you will learn how to be rewarded for every online purchase you make:
https://www.marketamerica.com/6asdkids/index.cfm?action=main.wLogin

Thanks,
Dad

Givers and Receivers

My step-mom, Marie, and I were having a discussion a few weeks ago. I was lamenting that we have been getting or receiving a lot these past few months and that we haven't been able to give as much as we would like to. She pointed out that we do have a lot to take care of and that our time and especially resources are very limited. True, true I said but it bothers me to be what I call a 'sponge'. Then she said something was very profound:

If there were no receivers... there could be no givers.

Yep, she's right. We give what we can and we want to do more, but there must be both. In fact, a bit over a month ago we were contacted by the Arc of Utah. They had a volunteer group, University Health Care, that wanted to be 'givers'. They wanted to know if we would be the 'receivers' of a yard makeover and a living room painting party. We accepted. The Arc also wanted to know if we would be their speakers for an annual fund raising breakfast that is coming up at the end of this month. Now we could be 'givers' as well.

Yesterday we were part of Utah's first 'Walk Now for Autism'. As we were leaving to go to that, the volunteers from University Health Care were arriving to give our yard a makeover. After we were done with the Autism walk we were told to go to a local indoor play park for children. The ARC had made arrangements for us to play while they fixed up the yard and painted the living room and hallway. They also installed a swing set in the backyard and gave us two brand new bicycles for the children. What GREAT givers!!

Here are pictures of our day:





















Thank you to everyone from The Arc, University Health Care and Lowe's.

Dad

A Thanks to Our Many Sub Santa's

This was the best Christmas our children have ever had (and Mom and Dad did pretty good too) as you can see from this picture around our 'tree'. To explain the tree, we haven't been able to have a regular tree for at least 3 years now because Ammon (4) and Sarah (6) lose the ornaments, strip off the lights and knock over the tree. A nice friend from church painted the 'tree' you see.

Our Santa subs were our state, Division of Service for People with Disabilities. Another was a Credit Union, a car dealership and an individual family. The family's help, spearheaded by a Mom and daughter team (Rhonda and Lacey) just went crazy doing and giving for us. It didn't all start at once, but it just snowballed and hit us right at Christmas.

We have been blessed and we pray for God's blessings to be upon all those who brought us so much joy and the spirit of receiving at the end of this very heart wrenching and tiring year.

Dad and Mom

Ninjas, Zombies and Princesses ...Oh MY!!

Left to right is Emma as the Princess, Nephi the Ninja and Bobby the Zombie.

Emma wouldn't wear socks with the 'princess' shoes so after an hour or so she was grumping and fussing that her feet hurt and were cold.

We also were not able to find her favorite house that served homemade root beer the last two years. Of course this was the cause of additional fussing and, "But, I wanted to have the root beer drink".

I tried to explain, "We don't know what happened, honey, maybe they moved or the mom or daddy is sick. Or maybe they died." "But, I still want some". "You'll be OK". (but I'll be losing my mind!)

Nephi was whipping out his swords and attacking someone or something every few minutes. He also jumped and bounced around so much that his candy kept falling out of his bag.

Bobby's mask scared the living bejevees out a bunch of little kids and parents were covering their kids eyes when he walked by. He started to really get into the scaring thing by walking toward people and jumping out at cars going by.

Here is our traditional 'Barfing' pumpkin that we put on the front steps -