A Reason to Run by Rachel Sivley

I love running, but there are still many days I wonder why I punish myself by running non-stop for hours at a time.  When I get discouraged or lose my motivation, I remember my daughters and how I want to be an example of not only a healthy lifestyle for them, but I want them to challenge themselves. That looks different for each of them as Lydia is a neurotypical, outgoing 10-year-old who has a heart the size of a large country while Charlotte is my introverted, amazing autistic 11-year-old.

Charlotte has so many uphill battles to fight in her daily life that come with her diagnosis. She loves to make people laugh but can struggle to find the right words to make a punchline hit right. She wants to try new things but a shaky sense of equilibrium and pronounced self-doubt can make many things feel impossible. She loves playing elaborate make-believe games with her little sister, but gets frustrated and overwhelmed if the game takes a turn she doesn’t expect. I am so proud when I see her push through her fears and limits. Each time she is able to do something new, it’s like watching the underdog win the gold medal. If she can push herself to strive for more every day of her life, why am I complaining about a measly few miles that I chose to run? Her and her sister are my inspiration every time I lace up and head out the door.

I have been raising money for Autism Connection of PA while I’ve been training for the Pittsburgh Marathon this time because I want parents like me to continue to have access to a community of caregivers and autistic individuals who can offer advice and support.  I keep up with the newsletters and website to hear about sensory-friendly events in town and to be informed about current research into autism. I want to feel as equipped as possible to help Charlotte navigate a world that isn’t going to cut her any slack for a disability that (in her case) isn’t obvious upon first meeting her. I’ve been lucky enough to meet my fundraising goal through generous donations from businesses, family, and friends that recognize the importance of my mission. I can’t thank them enough! I’m constantly floored by how people respond so compassionately when I’ve shared our family’s story. Their support will enable many more autistic individuals and their families to know they have a place that offers comfort, information and community right in their own city.

After the race on May 1st, I may not be working toward an immediate fundraising goal, but I will always be promoting the mission of Autism Connection of PA. It’s been a great resource for my family and with support of generous donors, it can continue to make a huge impact in this community for a very long time.

Rachel and her husband with daughters Lydia and Charlotte standing closely together and smiling into the camera at Universal Studios in Florida

Photo courtesy of Rachel Sivley

 


Monday’s Spontaneous Promise

This post-Easter Monday morning started with grey skies and a black cup of coffee, but things became colorful in an instant. What I thought would be a quiet beginning to my fourth week as Director of Operations for Autism Connection turned out to be delightfully busy, and quite literally, energetic. I was settled at my desk, setting priorities for the upcoming week, but the morning had other plans.

We had an unexpected visit from a local father and son who were looking for guidance in transitioning from school to work. The young man filled the building with vibrant energy and immense curiosity as he explored the offices, halls, and the contents of the refrigerator, before gravitating to Lu’s office for a talk. We found resources, and we found systemic issues that need to be addressed.

After our guests departed, we hopped on a meeting with a local elementary school principal to plan an assembly for students so they can learn about the autism spectrum, inclusion, and kindness. In the midst of this meeting, we had another visitor who popped in to say hello. She introduced herself to the principal on the virtual call, and he was delighted by the interruption.

This is a good sign.

As Lu and I debriefed, we got a call concerning an incarcerated adult who is in dire need of help, ranging from diagnosis to placement. The call served as a reminder that misunderstood behavior and miscommunication can lead to catastrophic results for people in the autism community. We brainstormed ways to help, and we explored what needs to be done to keep it from happening again.

All of this before 11:00 AM.

Setting a plotted schedule for the week is important, but sometimes the most significant priorities arrive unexpectedly. The beauty of Autism Connection is its ability to adjust to the needs of our community and the grand spontaneity that comes with working in this field.

This is a good sign.


Essential Pittsburgh: Placing Pittsburgh Adults with Mental Health Issues in STEM Jobs

In commemoration of World Autism Awareness Day, Lu Randall, Executive Director at Autism Connection of PA, and April Artz, Coordinator for the EmployAble program at the Squirrel Hill Career Development Center, are working to place adults with mental health issues in STEM jobs. The EmployAble program, which provides supportive services along with their job placements, acquired the funds to include services for adults on the autism spectrum in 2014.

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The Letter I Would Have Written for My Parents When I Was Still Nonverbal

Dear Mom and Dad,

I know it’s breaking your heart to see me as I am now. Most of the kids we know are starting to talk while I’m just making sounds. I’m lashing out because I’m struggling. I can’t communicate my needs, and things are just not going the way I wish they would. I scream and fight with you every time you try and bathe me because I can’t stand the feeling of water. I cringe anytime I hear thunder, and I don’t like to be touched because of my sensory issues. Even now, as we make all the adorable videos of me dressed up as one of the best looking toddlers of all time, I know things aren’t easy, and we don’t know what my future has in store.

I want to tell you, though, to keep fighting for me and believing in me because without you both — my best advocates — I’m not going to be the person I am today. There’s hope, and you both play a huge part in that. Things are going to get better, and without you that wouldn’t be possible.  

At 2 and a half, I’m going to say my first words, and at 4 you’re going to find out from a doctor that I have something called autism. In 1992, it will be something you would have only heard from some of the leading experts in the field and from the 1988 movie “Rain Man.” The road now is going to be difficult, but we’re going to get through it together. 

Supports are going to be difficult to come by. The numbers of autism are 1 in 1000 right now and so many people still don’t understand. Life is going to be difficult. Challenges are coming. But here’s why you should fight through the challenges…

By fighting for me every day and helping me go through occupational, physical and speech therapy for the next 16 years, while giving me support at home and in school, I’m going to grow into an adult who is a national motivational speaker and gives talks about autism across the country.

Because if you fight for me right now and never give up, not only will I be that speaker but I’ll have the opportunity to write an Amazon Best Seller, consult for a major motion picture that makes 30 million dollars, and be someone who gives you love every single day. I will grow into an adult who embraces affection.

Love,
Kerry

“I hope for any parent who reads this letter — coming from a now 26-year-old adult on the autism spectrum — that you never give up on your loved ones. The autism spectrum is wide and everyone’s journey is going to be slightly different. Become an advocate because by doing what you’re doing now, you not only give hope to your loved ones but you give hope to the autism community. We’re learning more and more about autism every day and more and more answers are coming to help our community progress.

Most important, I hope you take this letter as a sign that all parents of children on the autism spectrum can make a difference. Some days are going to be more difficult than others, but just know that you’re never alone in this community. And if you ever need someone to talk to, I’m just one message away if you click on my Mighty author page.”


Website teaches schools, parents about autism

A new website will give teachers information and guidance to understand, help and deal with students on the autism spectrum.

A new website is providing a free one-stop shop for teachers and parents of children with autism spectrum disorder (ASD), offering guidance about how best to manage the learning disability in schools.

The website, called Amaze Online Classroom, is the product of a joint initiative by Amaze, the peak body for ASD in Victoria, and the Department of Education and Early Childhood Development. It was developed with feedback from a committee comprising specialist staff in psychology, education, counselling and service delivery, ensuring a comprehensive and specialised tool.

Project Manager at Amaze, Kate Day, said the website was primarily intended “for teachers in primary, secondary and specialist settings”, and was aimed at “supporting educators to further develop their knowledge of ASD and provide them with strategies and suggestions for supporting these students at school.”

It addresses many common questions about autism and is divided into three main sections: About Autism Spectrum Disorder, Teaching and Learning, and Social Skills and Behaviour. The site also features a short introduction to ASD by pre-eminent psychologist and expert on Asperger syndrome, Dr Tony Attwood.

Ms Day said each section had been developed to cover the issues that can arise when teaching students who are on the spectrum, including communication, behaviour, sensory sensitivities, organisational skills and learning plans.

The Department funded the website’s development through the More Support for Students with Disabilities program, a national partnership between the Commonwealth and Victorian governments aimed at better enabling state schools to support the education of students with disabilities.

Amaze chief executive Fiona Sharkie said she hoped the website would assist teachers as they navigate the unique challenges presented by students with special needs.

“Teaching is a difficult job. The more strategies teaching staff have at their fingertips to help them understand and support individuals with ASD, the better it is for everyone – the teachers, the students with ASD and the whole school community,” she said.

Amaze said feedback from teachers had been positive.

Classroom teacher Michelle Nolan, who has been teaching for six years, works at Biralee Primary School in Doncaster and said that while Biralee is a mainstream school, there is at least one child on the autism spectrum in each classroom.

“ASD is particularly difficult at times because every child is different,” she said, “so the advice you’re given for one child might not work for others.”

Although teachers received “quite extensive” training to work with children on the spectrum, she said the website was a useful addition to a teacher’s toolbox.

“There is an abundance of information and resources available [on the website] but it is not at all overwhelming.

“[It] is presented using language that is easy to understand, making it extremely user friendly, and I was able to find what I was looking for quickly and directly.”

She explained that teachers often found that students with ASD had “particular anxieties or particular quirks” that needed to be addressed, and the website provided reliable strategies to help in these instances.

Ms Nolan said teachers enjoyed working with students with ASD, and the diversity that they brought to the school environment.

“I [referred] my colleagues to the site to support them when working with students with ASD,” she said, “they were excited to have this new resource [available].”

While the resource is primarily intended for use by schools and teachers, Ms Sharkie hopes that it will also give parents and carers the knowledge and confidence to partner with schools on the best way to meet their child’s needs.

The Amaze Online Classroom is one of many partnership projects between the Department and Amaze.

“The Victorian government has an ongoing professional partnership with Amaze, and provides Amaze with support and funding to develop a range of resources and support for schools and their communities,” a Department spokesman said.

The relationship with the Department has allowed Amaze to develop several initiatives and new resources.

“ASD is a complex condition, and after looking at the Online Classroom, teachers will be well-equipped to recognise characteristics of ASD in their students,” Ms Sharkie said.

“The content will help them to be the best teacher they can be, and to bring out the best in these students,” she said.

amaze.org.au

Source: The Age, Danielle Kutchel


Temple Grandin: Don’t give up on children with autism

She’s not finished.

“Now, I’m seeing the bolts on the ground that they cut off the mailbox I have now. They moved the mailbox across the street, but the post office doesn’t have keys for them. I have to pick up my mail at the post office (in Fort Collins, Colorado), and now I see myself standing in line at the post office and the guy is going, ‘We don’t have the keys yet.’ It’s really stupid.”

Grandin has written more than a dozen books on autism. She is a professor of animal science at Colorado State University and is known for developing corrals that relieve the stress on cattle being led to slaughter. More than half the cattle handled in the U.S. use Grandin’s invention.

Autism and cattle seem light years apart, but she was making a point.

“I was exposed to cattle as a teenager,” she said. “Students are interested in things they are exposed to; it’s that simple.

“I’m really concerned that our schools have taken out most of the programs that involve skills and trades — cooking, sewing, welding, woodworking, mechanics. We have a huge shortage right now of diesel mechanics, auto mechanics. And a lot of these kids with autism — say they have a minor speech delay, and they’re kind of quirky and nerdy and socially awkward — could do really well in these fields if they were exposed to them. Instead, many of them are shoved into a corner somewhere, and they are never able to flourish or find a career because about the only thing they are ever exposed to is video games.”

Autism, a complex neurodevelopment disorder that affects one in 88 children in the U.S., remains widely misunderstood, Grandin said.

“The reason is because it involves a wide spectrum of how much people are affected by it,” she said. “We are talking about Einstein, who had no language skills until he was 3 but was brilliant, to someone who has a severe intellectual impairment.

“In America, there is no distinction between levels of impairment. In America, there is no distinction between somebody who could work at NASA and somebody who can’t dress themselves. The international classification for autism, however, has levels of severity. I’m hoping that happens in America at the 2017 Classification of Diseases meeting.”

Grandin said the best advice she can give parents is this: “If you have a 3-year-old who isn’t talking, the worst possible thing you can do is do nothing. Too many parents go into denial. You have to work with your kid, get him the help he needs.

“My condition was severe when I was 3. My parents hired a speech therapist to work with me. I had a nanny who played ‘taking turns’ games with me. And I was mainstreamed into normal kindergarten.”

Grandin waited patiently Monday as parents and teachers from across the state stood in line to pick her brain.

Michele English, 38, of Laurel has a 19-year-old daughter with Asperger syndrome, which fits in the autism spectrum. Those diagnosed severely lack social and verbal skills.

“Each child is different,” English said. “What works for one doesn’t work for another. Dr. Grandin encouraged me to keep seeking help. If one doctor isn’t working, go to another. Just don’t give up, even if it means looking out of state. And I will. My daughter is my world.”

Shane Chandler, a speech pathologist, was one of six staff members of the Laurel city school district to attend the conference, including Maddox Elementary principal Ruby Lovett.

“We have a 6-year-old boy who is autistic,” Chandler said, “and we came here seeking ways to do anything possible to help him get on track. Our principal has already said on the drive back to Laurel we are going to talk about what we all learned from Dr. Grandin today and formulate a plan.”

Contact Billy Watkins at (769) 237-3079 or bwatkins@jackson. gannett.com. Follow @BillyWatkins11 on Twitter.

Source: The Clarion-Ledger