Why I Run and Walk for Autism

Beverly Moore is Chair of the Board of Directors for the Autism Society of North Carolina (ASNC). This guest Blog includes her comments to the participants at the recent WNC Run/Walk for Autism where she shares why it is important for parents, family members, friends, and the community to support the annual ASNC Run/Walk for Autism events. The final 2012 event, the Triangle Run/Walk for Autism, will be held this Saturday, October 13, at Moore Square in Raleigh.

My husband Alan and I are parents of a 19-year-old son Kirby who has autism. Kirby cannot tell us about his day at school. He cannot dress himself. He can’t tie his shoes. But, he loves to swim, to swing in the yard, to listen to music and watch YouTube videos, including the Black Eyed Peas: Let’s Get it Started in Here!

Kirby was 3 years old when he was diagnosed with autism. Receiving the diagnosis of autism, as many of you have experienced, throws you into the realm of the unknown, the unpredictable: What is the nature of your child? What will the future hold for your loved one and your family?

It also throws you into the realm of the uncommon: Your friends’ and neighbors’ children are developing typically and yours is not. Your friends and neighbors pick up on those unspoken social cues and your loved one does not or has difficulty. The diagnosis can be very isolating.

The diagnosis can also be immobilizing. Autism is mysterious. You hear that “if you’ve met one person with autism, you’ve met one person with autism.” Autism affects each person differently. Today with the Internet, the amount of information available about autism is overwhelming. A Google search of the word “autism,” recently resulted in 76,200,000 hits. The vast amount of information on autism can itself be immobilizing, without something or someone to guide you.

When we needed support and a compassionate ear, the Autism Society of North Carolina (ASNC) was there for us.

After attending the ASNC annual conference, joining the local ASNC parent support group and meeting the Autism Society of North Carolina’s parent advocates, I found that not only was I NOT alone, but that I was in good company. The Autism Society of North Carolina gathers together parents, teachers, medical personnel, speech pathologists, occupational therapist, psychologists, and others – all smart, energetic, fun, and dedicated to helping address the challenges often presented by autism.

At its annual educational conferences, the Autism Society of North Carolina presents autism specialists not only from our state but from around the world. The conferences and other workshops helped guide Alan and I in figuring out what we could do to improve our lives and to help Kirby become as independent and as included as he is able.

The Autism Society of North Carolina was started in 1970 by parents. It was a time when children like Kirby would have been discouraged from attending public school. Their vision was to share information, provide support to one another, and enhance the lives of their loved ones as well as all children with autism throughout our state. Your coming out today to support the Western North Carolina (WNC) Run/Walk for Autism gives me great hope that the Autism Society of North Carolina will be able to meet and exceed the vision of these founding parents by reaching out to those in the western most portion of the state, where populations may be small but presence of autism a certainty. In North Carolina the prevalence of autism is 1 in 70. Thank you for your support.

In the words of my son Kirby: Let’s Get it Started Out Here!

The 7th annual WNC Run/Walk for Autism on September 29th raised over $40,000 to support individuals on the autism spectrum and their families in Western North Carolina. The Triangle Run/Walk for Autism is the organization’s largest annual fundraising event. This year’s goal is to raise over $300,000 in funding that is needed to provide services and supports to the over 60,000 families affected by autism in our state. If you have not already donated in support of our runners and walkers, please do so by visiting www.trianglerunwalkforautism.org. If you wish to participate in the event you can register at early packet pickup Thursday and Friday or prior to the event Saturday morning. Click here for more info.

Structure – an Important Teaching Tool

Editor’s Note – This article was written by Amy Hobbs, Training Coordinator for the Autism Society of North Carolina. To read Amy’s bio click here.

It was Sunday and a new group of campers had arrived in the afternoon. I was called to the old dining hall to assist a counselor who was having trouble getting a young camper back to the group lodge to take a shower and get ready for bed. The four-year old camper who I’ll call Alex was at Mountain Adventure Camp for the first time. It was Alex’s, first time ever spending the night away from his home. Alex did not speak and to communicate his needs he typically cried, flopped to the floor and banged his head. Lucky for Alex, he was attending a camp that was specifically designed for individuals with autism.

Alex was wandering aimlessly around the dining hall, but every time his counselor tried to direct him towards the door, he flopped to the floor. Alex did not understand the pictures that the counselor was showing him that represented the Group Lodge nor did he understand the words used to explain that it was time to take a shower.

The old dining hall had lots of tables and chairs and also lots of doors leading to the outside. When Alex flopped to the floor the next time, we opened the nearest door and simply pulled chairs in around him making a corral with the only opening being a door to the outside. It took Alex about 30 seconds to stand up, look around and then walk straight out the open door.

I remember the look of amazement on that counselor’s face as he watched Alex walk out the door. He never forgot that example of using physical structure and how it helped Alex to understand what we wanted him to do.

Sometimes when students with autism are in inclusion settings, they have trouble attending to their work because of all the distractions in the room such as other students talking or moving around or people coming in and out of the door. Planning seating arrangements for these students to optimize their success in the mainstreamed setting is crucial. It might be that sitting on the front row or away from the main door will be enough to reduce the distractions. Another student might benefit from having a desk that faces the wall to help them concentrate on the work in front of them.

The simplicity of using the physical structure in the environment to address behavioral challenges is sometimes overlooked. However, the first step to addressing a behavior problem or instructional challenge is to make sure that the individual with autism understands the expectations. Often when the demands are clarified through moving the furniture or adding visual supports, then the behavior challenge dissipates.

The training department offers training on using a structured approach to teaching individuals with autism. For more information on this and other available trainings, click here.

Amy Hobbs can be contacted via email at ahobbs@autismsociety-nc.org or by telephone at 828-236-1547 or 800-442-2762, ext. 1501.

Honoring Direct Support Professionals

Editor’s Note – Last week was Direct Support Professional Recognition Week in North Carolina. The Autism Society of North Carolina employs hundreds of Direct Support personnel and without their dedication and continued efforts many individuals on the autism spectrum and their families would not have needed support services. The following article was provided by Kerri Erb, Senior Director of Quality and Programs.

Direct Support Personnel (DSPs), Community Skills Instructors (CSIs), Hab Tech, Cap Worker – by whatever their name, these individuals are to be recognized. Every day they work one to one with an individual with autism to teach skill acquisition, supporting a person in reaching independence goals, becoming a friend, a natural support, or a lifelong member of the family. Direct Support Professionals come in all ages and stages of life. Some come to work for ASNC for a few months, others stay for a lifetime.

We’d like to just take a moment to invite you to reach out to the DSP you know, who works with your child, your neighbor, and say “thank you.” Recognize them for a job well done. DSP are the largest percentage of ASNC’s employees and we learn how to improve what we do as an organization and as a system from them. Many full-time Autism Society of North Carolina employees and managers got their start in the field through Direct Support work. Because of this understanding throughout the organization of the importance of DSP, our ultimate hope is that an individual with autism’s life is improved in some way through their work.

As an agency we have been endowed an annual award to give to a direct support staff worker to recognize the job that they do here at ASNC. Lori and Gregg Ireland established this award to honor the John and Claudia Roman family who provided extraordinary support to their son and family. Through their generous gift, the Irelands have enabled the Autism Society of NC to acknowledge and honor other direct support staff that had the same level of commitment in the delivery of service as John and Claudia.

We have honored Tanya Ahner- Mejia (2012), Lori Sweeney (2011), and Emily Bennett (2010) with this award in recent years for their tireless dedication, ability to go above and beyond and for making a real impact in the lives of individuals with ASD and their communities. They are the ones who make dreams come true.

It’s not just the Autism Society of North Carolina that recognized the importance of DSPs, click here to see Gov. Perdue’s proclamation to celebrate this week.

So in case you missed the opportunity last week, we invite you to give your DSP a pat on the back, or a donation in their honor, for a job well done this week (or any week). ASNC will again honor a DSP with the John and Claudia Roman award for 2012 at the 2013 Autism Society of North Carolina conference February 8-9 in Charlotte. Please nominate your Autism Society of NC DSP for this award by emailing Kerri Erb or Denise Ferguson for more information.

Kerri Erb can be reached via email at kerb@autismsociety-nc.org or by phone at 919-865-5053 or 800-442-2762, ext 1102.

Communication is Key!

Editor’s Note – The following post was written by Autism Society of North Carolina Parent Advocate/Trainer Juliette Heim.

For some of our children, the beginning of the school year has already begun, and for others, school is just around the corner. There is often uncertainty, anxiety, and the fear of the unknown that accompanies this transition time, when we leave behind the fun of summer and adjust back into the structure of the school year. The stress and excitement can be overwhelming for families.

As a parent of a child with autism, I would like to share with you some tips and strategies that I have applied over the years that have been helpful in easing much of the tension that accompanies the beginning of a new school year.

I make it a point to meet with each and every new teacher that will be working with my child during the school year. I clear my schedule to accommodate their availability. I want to subtly demonstrate my view of the importance of this meeting without sounding rude or demanding. It is important to set a positive tone for a good teacher/parent relationship. This is key because first impressions can make or break a good teacher/parent relationship. Be flexible but assertive!

If possible, it is always a thoughtful gesture to bring flowers or a small box of chocolates to show your appreciation for the hard work that teachers do.

Be prepared for meetings. Write down your questions and or concerns ahead of time and take notes. Do not be hesitant to ask questions. The only “dumb” question is one that is left unasked if it is of importance to you.

Keep in mind that if your child has an IEP (Individual Educational Program) or a 504 Plan these are designed by ALL team members. Parents and teachers work together on the same team. Team members should keep one another informed of both challenges and progress. Any additions or changes to an IEP or 504 Plan are handled with a group effort.

Follow up with the teacher after each meeting. Remember to thank them, either in an e-mail or a simple thank you card. Teachers, just like all of us, want their hard work to be appreciated and they will remember that you took the time to acknowledge their effort. If you have several topics that were discussed, send an e-mail outlining the conversation, and be sure to thank them for their time and dedication in helping your child to succeed.

IEPs and 504 Plans are outlined on a standardized form, but minutes of team meetings will also be kept by one of the staff. A copy should be presented to you, but if not, request a copy.

Over the years, my child, Logan, has had some very talented teachers, as well as some that just could not “think outside of the box” or did not communicate well with me. I had to be consistent and diplomatic even when it was challenging. I continued to show my appreciation for their efforts. I made adjustments and kept a good stream of communication between us.

A gentle approach works better for any relationship than anger or negativity, and you will be more likely to help your child if everyone is willing to collaborate. Remember the old adage, “You can catch more flies with honey than with vinegar.” Using diplomacy and appreciation, while displaying self-confidence, is a great way to introduce yourself and your child.

As a Parent Advocate for The Autism Society of North Carolina working out of the Asheville office, I am here for you if you have any questions or concerns that you would like to discuss. I can be reached at: jheim@autismsociety-nc.org or you can call me at my office at 828-236-1547, ext. 1508.

I hope you and your children have a successful start to the school year!

What happened at the Legislature this session? ASNC Budget Wrap Up Report

Photo credit to Mr. T in DC via Flickr.com

Editor’s Note – The following article was written by Jennifer Mahan, the Autism Society of North Carolina’s Director of Government Relations.

During the General Assembly “short” legislative session that lasted from May 16 to July 3rd, state legislators made small changes to the second year of the two-year state budget they put into place last year. So, what changed?

The legislature:

• Funded Medicaid cost over runs for the current year (2011-2012) and added more funds to Medicaid to cover possible cost increases for 2012-2013.

• Increased funding for education, including teachers’ raises of 1.5% and $27 million for new education reforms, mostly focused on improving early grade reading skills. A loss of Federal funds and larger cuts in state funds in the second year of the budget means more cuts for local schools.

• Continued the $20 million dollar cut to state funded services (IPRS) for developmental disabilities, mental health and addiction, but did not require local management entities to use fund balances to cover the cuts as they did last year. It is likely that this cut will reduce availability of supports like developmental therapies and respite.

• Cut Medicaid personal care services by $6 million and changed the eligibility criteria. Because the changes are new, and the legislative language confusing, no one is sure how many people will lose personal care services.

• Added $1.7 million to Medicaid due to delays in some local management entities (LMEs) converting to the new 1915 b/c managed care waivers, while cutting $8 million from LME administrative budgets. The $8 million reduction is in anticipation of  savings from the conversion from a network of LMEs to MCOs. Legislators did not make changes to the waiver bill they passed last year or to the final timeline for implementation which remains June 30, 2013.

• Created a new “Transitions to Community Living” fund and oversight committee. The fund will help people with mental illness move out of adult care homes and into community housing, while also assisting adult care homes who may lose funding from Medicaid in the process. The new Transitions oversight committee will also look at the issue of housing and community living for people with developmental disabilities.

If you would like to see the entire budget, H 850 (the budget adjustments act), the Committee report for H 850 (i.e. the money report) and S 187 (the budget modifications/corrections bill) go to the General Assembly Website at www.ncleg.net. For a more detailed summary of legislative action that impacts people with on the autism spectrum and other intellectual and developmental disabilities, please read ASNC’s 2012 legislative summary.

Questions? Please use the comment feature or email Jennifer Mahan at jmahan@autismsociety-nc.org.