This guest post is by Dana Morris, the Events Director of the Chicagoland Chapter at Autism Speaks.
E Street’s owners Tom and Kathy George don’t have kids of their own. But you wouldn’t know it by meeting them and seeing their genuinely warm spirits and caring personalities. Tom and Kathy have been dressing the North Shore of Chicago in top premium denim since 1990 and have made their place in the community. On Friday, November 12th they hosted their second annual Care Concert, which benefitted Autism Speaks and Syd Rocks, another local charity. It was a cold and rainy night but you wouldn’t know it by entering the festively tent complete with holiday lights. Over 200 guests enjoyed fantastic food and beverages while rocking out to the sounds of Danny Chaimson and the Gold Coast All Stars, who kept the dance floor filled all night. A fantastic silent auction featuring local businesses rounded out the evening with offerings from E Street, a signed guitar and a photo portrait sitting.
We came to know Tom and Kathy through Spencer Savitz and the Savitz family, whose walk team, Team Tyler, over the years has raised over $500,000 for the Chicago walk. Spencer’s friends sold raffle tickets as well as custom Autism Speaks bracelets all night and pretty much didn’t take no for an answer. The E Street family has been a wonderful partner to the Chicagoland Chapter and continues to help raise from for Autism Speaks year round –complete with our logo on the doors of their locations in Chicago and Wisconsin. We cannot thank E Street Denim and the Savitz Family for their outstanding commitment to Autism Speaks.
This “In Their Own Words” is by Alysia Butler. She is the mother of three, and her middle son Howie was diagnosed with an autism spectrum disorder at age 3 and a half. You can read more from Alysia at Try Defying Gravity.
It started with paper snowflakes.
We were over at our friend’s house for a pizza party, and my oldest Gerry and his friend were creating paper snowflakes. They made them in all shapes and colors and pretended to sell them to us from their “artificial snowflake store.”
On our way home, Gerry was working on one of his money making schemes, trying to figure out how to make $400 – enough to buy the Lego Death Star.
“If I sold one paper snowflake for a penny, how many would I need to sell?”
We started to do the math with him in the car when he interrupted us.
“Could I sell them for charity?”
Of course, we answered, knowing that there would be very few people who would buy an eight-year-old’s artwork, but we were going with it. I started to explain what a charity was to give him some ideas. People donated to charities for causes that they believed in. There were charities to help people who didn’t have enough money to eat, charities to help the environment, and charities to help find cures for diseases.
“Is there a charity to find a cure for autism?”
I exchanged sideways glances with my husband. “Of course,” I said.
“Then I want to do that one…”
(my eyes are getting teary at this point)
“…because I want them to find a cure since Howie’s been getting a little wild lately.”
We quickly ended the conversation in the car and I told him we’d talk about it more when we were home.
A few hours later we were getting the boys ready for their showers. Gerry was sitting with me in the baby’s room while Howie was with my husband. I told Gerry why we needed to end the conversation in the car.
“Howie doesn’t know he has autism, so I didn’t want him to get confused or upset by what we were saying in the car. At four, he’s too young to understand.”
“Well, when will he know?”
“I’m not sure,” I told him, “Maybe when he’s older like you he’ll know. But right now we don’t want him thinking that he’s any different than anyone else.”
As soon as it came out, I knew those words were a mistake.
“What’s wrong with being different?” Gerry asked.
I started to backpedal. All the “there’s nothing wrong with being different” phrases started stumbling out of my mouth.
“I feel different because I’m Jewish. Everyone else in this town celebrates Christmas. And you tell me there’s nothing wrong with that.”
“I chose the wrong word when I said I didn’t want Howie to think he was different. You’re right, it’s good to be different and we should celebrate those differences.”
He looked at me thoughtfully. “Yeah, being different is good. You wouldn’t want to dress the same and act the same way as your best friend, because then no one would want to be your friend because they would all think you were just copying him.”
He continued with, “There’s good different and bad different. Good different would be if someone had a hard time paying attention in class and they needed something like a pencil to fidget with to help them, that would be ok. But if someone wasn’t paying attention just to be annoying, that wouldn’t be ok.”
“Right,” I said. “People learn in different ways and sometimes need things to help them. But if someone was disturbing the class just to be funny, that wouldn’t be good.”
Gerry paused for a minute to think about this.
“Is Howie in a special class for kids with autism? Is there a group for kids like him to get together like I do for SibShop?”
I explained that Howie was in an inclusion class at his preschool with kids of all different abilities and he meets with his teachers and other kids to learn special skills to help him pay attention in class and at home. Different from SibShop, I said, but still learning important coping skills, just like Gerry was in his group.
“Are they helping Howie to stop making all his noises?”
Big sigh. “Yes,” I said. “He makes those noises when his body doesn’t feel right and they are helping him understand what to do with his body when he feels that way. We’re working on that at home too. So when we see his body moving really fast or he’s making a lot of noises, we let him run laps in the house, or get his weighted blanket. Or have a pillow fight with him. Those things make his body feel better.”
Gerry looked at me quizzically. “Pillow fights help him feel better?”
“They do. So if you see him moving really fast in his chair or making a lot of noises, you can always ask him if he wants to have a pillow fight. Not a really rough one, but a gentle one. It might help him.”
He was quiet for a few minutes.
“What if I invented a machine that was a big circle loop and pillows hung from it? It would go around in a circle and Howie could stand in it and get hit by the pillows. That would help him, right? I would make sure it was 2 feet off the ground so if he fell he wouldn’t keep getting hit by the pillows.”
(getting teary again)
“I think that’s a great invention. I’m sure he’d love it.”
“Probably pretty expensive to make, though,” he said, pulling the covers up to his neck. “I’ll have to think about it more.”
The next morning, I came downstairs to find blue paper snowflakes all over the kitchen table. And as I sat in the chair, rocking Howie and giving him squeezy hugs with all my strength, Gerry worked furiously with the scissors making all different patterns of snowflakes.
“You know, Mom. No two snowflakes are alike. They are all different.”
That is something to celebrate.
“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 email@example.com. 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.
We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!
It gets better! Take one day at a time and remember that there can be a wonderful future for these kids. Love them and support them as much as possible. –Leann
The best advice I can give a newly diagnosed family is to have a plan, be consistent, and take it one day at a time. And always remember, everyday is progress! –Whitney
Although you need to plan for the future, don’t get unnecessarily “worked up” worrying about all the various “what ifs.” Narrow your worries to immediate concerns. The “what ifs” may never materialize. Trust in yourself that you will never accept the way someone tells you to do something as being the “only way”! I have found the best result in everyday life has come from “thinking outside the box”. You must put yourself in their shoes and feel, smell, see, hear what they do and then you can address the situation. – Kimery
Be ready to deal with what comes in the future. –Joy
We rode the train to our local zoo and when I corrected my son as to which side to get off the train he had a huge tantrum, lots of people staring it was horrible. I told his teacher about the incident and she said, “Lora, you can’t let what other people think EVER bother you, they have no idea what you are going through so just forget them!” The next time we went to the Zoo my girlfriends asked if I wanted to “avoid” the train and after a moment I said, “No. I want to go straight to the train”. I am not putting him in a bubble.” He never had a problem with the train since. Live your life and don’t let other’s stares or commentary get you down. Their judgment, their problem. –Lora
Be patient, go with the flow, seek the best therapy you can find, and love them through it all. –Sharon
Sometimes you just need treat them like they are normal… they act up discipline them, they do something great give them a kiss and show them all the time they are loved… –Marlene
I am not a parent but I do work with kids with autism. Just remember treat them with respect and treat them as you would any kid. –Debbie
Be your child’s own “job developer”! When it comes to your son/daughter, who knows them better than you do? Think expansively when considering an workplace area that may best suit their needs, and then network, network, network! Never give up! –Ian
It isn’t a sprint. It’s a marathon. Think about the big picture. -Robin
Autism parents battle on: backers aim to reintroduce bill to require insurance coverage (Genesee County, Mich.)
Nine-year-old Remi Bossardet wants to be a mayor when he grows up, or maybe an actor, or possibly a football player. Read more.
PS 205 breaks barriers with program (Oakland Gardens, N.Y.)
The special education students in the PS 205 building in Oakland Gardens used to be known as “those kids upstairs.” Read more.
Retiring deputy head is ‘part of school’s fabric’ (UK)
A deputy headteacher who has worked at a school for children with learning difficulties since it was founded is retiring to the seaside. Read more.
Company redesigns bedroom for autistic boy (Nashua, N.H.)
P.J. Davey is changing lives and paying it forward – one brush stroke at a time. In June 2009, Davey, of Nashua, launched Paint It Forward, a company dedicated to helping people who have served overseas, have suffered immense loss or have survived a devastating illness. Read more.
New Organisations Authorised To Certify Disability Assist Dogs (New Zealand)
Local Government Minister Rodney Hide today announced the addition of Perfect Partners Dogs Trust and Assistance Dogs New Zealand Trust to the list of organisations authorised to certify disability assist dogs. Read more.
Triplett Makes History (SCT Online)
Forest legend Donald “Don” Triplett said he grew up always knowing he was “different.” But what he might not have realized was that his being “different” would be recorded as a timestamp in medical history as the first child of autism. Read more.
Inspiration hope of singer Matt (UK)
A Castle Bromwich singer hopes that his success in a national singing competition will inspire other people with autism. Read more.
Music therapist helps improve patients’ lives (Des Moines, Iowa)
Shelly Peterson uses music to improve the lives of young children as well as help clients with brain injuries, autism, dementia and cerebral palsy. Read more.
Battle Monument Grad Honored for Helping Special-Needs Students (Dundalk Patch)
When Stacey Smallwood, a personal assistant at Battle Monument School, recently won the employee award given by the Baltimore County Commission on Disabilities, she joined a small circle of award recipients that included Dundalk Councilman John Olszewski, Sr. Read more.
Hadi Temple provides rides to Shriners Hospitals, make kids smile (Evansville, Ind.)
A trip to the hospital actually makes some Tri-State children smile because their drivers wear funny hats. Read more.
The Interagency Autism Coordinating Committee (IACC) met on Tuesday, December 14, at the Bethesda Marriott in Bethesda, Md. This is the fifth time the Full Committee has met in 2010. The IACC has made significant progress in the past year in the following areas: 1) releasing the 2010 Strategic Plan for Autism Research (February 3); 2) publishing the 2008 Portfolio Analysis Report (January 19); 3) releasing the 2009 Summary of Advances in ASD Research; 4) hosting first annual IACC Services Workshop, Building a Seamless System of Quality Services & Supports Across the Lifespan (November 8); and 5) updating the 2011 Strategic Plan for Autism Research.
IACC Chair and NIMH Director Thomas Insel, M.D. opened the meeting with a presentation on research developments since the last IACC meeting. Dr. Insel reported that autism was a “hot topic” at the recent Society for Neuroscience meeting with a 30 percent increase in abstracts focused on autism. The meeting also included a Public Symposium, Autism: Progress and Prospects, chaired by Gerald Fischbach, M.D., Scientific Director, Simons Foundation Autism Research Initiative.
The IACC meeting agenda was devoted primarily to consideration of updates to the Strategic Plan for Autism Research. Members of the Strategic Planning Subcommittee presented the IACC with modifications to the existing plan with appendices of new research advances, funding gaps and new research opportunities for each section of the plan. The Committee approved most of the recommendations made by the Subcommittee.
The Subcommittee’s recommendations included objectives to better understand wandering and fever in persons with ASD to Question 2 of the plan.
The Committee voted to retain the title of Question 3, “What caused this to happen and how can it be prevented?” Updates to Question 3 include reference to a Workshop “Autism and the Environment: New Ideas for Advancing the Science,” held September 8, 2010, which was co-sponsored by Autism Speaks and NIEHS. The meeting involved environmental scientists who have successfully identified environmental risk factors for other conditions, such as Parkinson’s Disease, in an effort to develop better strategies for discovering environmental risk factors contributing to the etiology of ASD. The committee voted to accept new research objectives, including in the following areas: epidemiological studies that take advantage of special populations or expanded existing databases to inform our understanding of environmental risk factors for ASD, to include adverse events following immunization (such as fever and seizures), mitochondrial impairment, and siblings of children with regressive ASD; and the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes.
Recommendations for Question 4 were also accepted. These included research objectives to assess the effectiveness of interventions and services in broader community settings by 2015; to study interventions for nonverbal individuals with ASD; and to focus on research on health promotion and prevention of secondary conditions in people with ASD. Secondary conditions of interest include overweight and obesity, injury, and co-occurring psychiatric and medical conditions.
The IACC’s review of the Subcommittee’s recommendations for Question 5 included extensive discussion about how the IACC should address issues related to mortality, safety, and health within the IACC. New research objectives were approved to support research on health and safety issues leading to mortality.
The Question 6 recommendations on future needs of adults highlighted the urgent need for additional scientific research specific to this group. In 2010, several national advocacy groups devoted private resources to initiatives on adult services that have been brought to the IACC’s attention.
Finally, Question 7 is focused on the infrastructure and surveillance needs. The committee noted concern in funding availability for these needs. New research objectives were added. These included objectives to establish a robust network of clinical research sites that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g. DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments; and to create an information resource for ASD service providers, researchers, families, and people with an ASD which serves as a portal to obtain the most recent evidence-based reviews and plans for intervention, services, and support.
“Public input has been critically important to the Strategic Planning process,” says Geraldine Dawson, Autism Speaks’ chief science officer and IACC member. “Based on feedback received from both consumer and professional stakeholders during the Request for Information phase, the recommended Strategic Plan will include new objectives that enhance the focus on environmental factors and lifespan issues affecting adolescents and adults living with autism.”
The afternoon session began with the Public Comments portion of the meeting. Ms. Idil Abdull, parent advocate and co-founder of the Somali American Autism Foundation, thanked the IACC for its decisive action on exploring the Somali autism issue and urged it to sustain this effort. Also presenting during Public Comments was Mrs. JaLynn Prince, President and Founder of the Madison House Foundation, based in Montgomery County, Md. The mission of the Madison House Foundation is to identify the lifelong needs of adults with autism and fill those needs through education, awareness, and advocacy. Mrs. Prince encouraged the IACC to explore the expertise of organizations like the Madison House which have been dealing with adult service issues in local communities throughout the country.
The agenda also included several updates on issues raised during recent meetings. At the October meeting, the IACC asked Autism Speaks, NIEHS and CDC to investigate issues raised concerning the Somali population in Minnesota. Coleen Boyle, Ph.D., Acting Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention and IACC Member, Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences, and Autism Speaks’ chief science officer and IACC member Geraldine Dawson, Ph.D. provided an update on their efforts with respect to this issue. It was reported that collectively $350,000 has been committed to begin to study this issue, with Autism Speaks contributing $100,000 to this effort.
In response to a presentation on Wandering and Autism at the October meeting, the IACC created a subcommittee on safety issues the first task of which is to write the secretary of HHS on the recommendations that were made during the meeting. Lyn Redwood, R.N., M.S.N. Co-Founder and Vice President, Coalition for Safe Minds and Co-chair, Safety Subcommittee, and Alison Singer, President, Autism Science Foundation and Co-chair, Safety Subcommittee, reported on the Subcommittee’s recent meeting. The IACC authorized the Subcommittee to proceed with its information gathering in order to finalize the letter to the secretary. To inform this letter, the Subcommittee’s representatives will meet with the Departments of Education and Justice and will develop a Request for Information (RFI) on wandering. It was also announced that Autism Speaks and the Autism Science Foundation will fund a study utilizing the Interactive Autism Network (IAN) on this issue.
Services Subcommittee Co-chairs Ellen W. Blackwell, M.S.W., Centers for Medicare and Medicaid Services and Lee Grossman, President and CEO, Autism Society, reported on their Services Workshop on November 8 and subsequent subcommittee meeting. The goal of the workshop was to determine a set of recommendations to make for the Secretary of HHS. The Subcommittee is using slides from the workshop to inform the recommendations to be sent to the Secretary. The Subcommittee believes another workshop on services will be necessary next year.
Finally, the IACC solicited the input of IACC member Alan E. Guttmacher, M.D., Director Eunice Kennedy Shriver National Institute of Child Health and Human Development, on the implications of the proposed addition to Question 1 of the Strategic Plan to conduct five studies on the ethical, legal and social implications of autism screening research, including at least one study on the implications of potential future genetic testing. The committee agreed to look at what other diseases have done in this area and will convene a workshop next year.
The IACC is scheduled to meet again on January 18 and will finish its update of the Strategic Plan’s Introduction section at that meeting before approving the plan.