Aspire Girls Makes a Splash

Aspire Girls, a social skills group for girls on the autism spectrum ages 8 – 16, took the plunge into new experiences at Sail Sound Point earlier this week.

Sailing instructor Ben Harter kept his introduction to sailing instructions and protocols brief, as all the girls were excited to get out on the water.

Splitting into four boats, each group had a parent on-board to help with steering and any technical difficulties. Once on the water, the girls’ splashing and giggling could be heard from around the lake.

Along with sailing, Sail Sand Point generously allowed the girls to make use of their paddleboards and kayaks. New friends tested communication skills as they paddled through the water, and mothers and daughters used the time to bond while enjoying the warm water.

Aspire Girls on the water at Sail Sand Point.

“I’m impressed with the girls’ enthusiasm and can-do spirit in trying new activities,” remarked Jen St. Cyr, WAAA’s Director of Family Services.

Beyond the enjoyment and exposure to new experiences, an important takeaway of the afternoon is the significant opportunity for impact when companies make inclusion part of their mission. Sail Sand Point is dedicated to youth and access for all. Via their Shipmates program, over a season they provide approximately 60 days of access to various groups in Puget Sound. We are fortunate to join in partnership with such an outstanding, inclusive, community supporter.  


 

 

Making Connections in the Tri-Cities

by Jen St. Cyr, Director of Family Services

Jen at the NW Autism Conference

Last week I had the great fortune to attend the Northwest Autism Conference in Richland, Washington. This was my second year attending, and it did not disappoint. I am always so impressed by the range of roles represented in attendees. From grandparents to educators to therapists to case workers, this conference draws a wonderful cross section of the many systems that work together to support individuals with autism and their families.

In addition to meeting attendees, this is also one of my favorite opportunities to connect with fellow providers who are a vital part of the Tri-Cities community, such as Imagine Behavioral & Developmental Services, the Arc and Parent to Parent, Northwest Autism Center, and of course Kadlec Neurological Resource Center who works so hard to host this event each year. Many of us are caregivers in addition to our professional titles, so it is a wonderful chance to reconnect, share photos of children and grandchildren, and hear how each other’s families are doing.

Speakers at this year’s conference included Alexis Wineman, the first contestant with autism in Miss America’s history, who presented a candid and engaging account of growing up with autism and tapping into her unique strengths. Skill building sessions included topics such as executive function, transition to adulthood, co-occurring conditions, language strategies, and early identification. I was impressed by the curation of the topics, which absolutely reflected the needs I am hearing from families every day.

Jen St. Cyr (center) with Melissa Brooks and Mario Ramos from Arc of TriCities.

The Northwest Autism Conference is a vital connection point for so many individuals and families who live and work in the Tri-Cities and beyond. I am grateful for the opportunity to participate in this strengths-based and strength-building event. Perhaps next year I’ll see you there, too!

Donor Gratitude: Recognizing Hard Work to Support Autism Community

Renee and David Kaufer know what it means to work hard. David is a marketing and branding expert with his own consulting firm, Kaufer DMC, and Renee is the Senior Operations Manager for Africa at the Bill & Melinda Gates Foundation managing offices in Ethiopia, Nigeria, and South Africa. They also have twin 11 year old sons, one of whom is on the autism spectrum.

Renee recently marked her 10 year anniversary at the Gates Foundation with a generous bestowal of $10,000 to Washington Autism Alliance & Advocacy (WAAA). This donation will be accompanied by a triple-match from the Foundation. “WAAA is a tremendous organization that offers those of us touched by autism a wealth of knowledge and resources that families otherwise don’t have as we make our way through unchartered waters,” remarks Renee.

Special needs parenting is a challenge in and of itself, and that challenge is compounded by two working parents with demanding jobs. Renee points out that work travel must be carefully planned and daily schedules must be flexible to ensure constant supervision and to be with their son for in-home and office therapies. Because a parent needs to be home every night, the Kaufers have not taken a vacation away from their sons in over nine years, instead splitting for  separate vacations so they can each recharge. Renee comments, “we make it work because we have to and we do it because we love him with all our hearts. We do everything we can to support him every single day.”

Renee points out, “I wish people understood the day to day challenges for families raising a child on the spectrum. From lack of sleep, to constant supervision, to not knowing how to help when he cries, to fighting with the public school system just so he gets a basic education is very taxing on a family and it takes its toll quickly, both physically and mentally.”

There are joys as well. The Kaufers say their son Stone is their hero and love watching him grow and make great progress through constant in-home and office therapy interventions. The family delights in outings to the town of Charleston on the Oregon coast where they hike, swim, explore, play on the beach, and simply enjoy spending time together.

Family fun – sharing a laugh.

“WAAA has been such a tremendous resource as we navigate, what for us is, unchartered territory,” remarks Renee. “From battling the public school system to working with insurance companies, WAAA always has answers for us and is incredibly helpful. Choosing WAAA as the donation from my employer was an easy one.”

From the Other Side of the Table: Tips to Reduce IEP Meeting Stress

Written by Patrick Mulick, BCBA, NBCT

I wear many hats. I am a blogger, an inventor, an inspirational and instructional speaker, a former preschool, middle school, and high school teacher, the Autism Coordinator of Auburn School District, a father, a husband, and I am a man who is passionate that we get it right for our students with disabilities. What I am not is a parent of a child on an IEP. However over the years I have been a part of many IEP meetings, and I have learned from the absolute best-other parents- on how to better advocate for your child. With that, I have learned different strategies that parents can use to help reduce their stress levels as the team journeys through the high stakes conversation.

  1. At the start of the school year, ask to schedule the IEP meeting a few weeks before it is due. Teachers often work under quite a bit of stress themselves to meet deadlines. Scheduling the meeting a few weeks ahead of the due date will allow for flexibility to reschedule if someone cannot make it at the last minute. This can help avoid any unneeded stress to “get the meeting in.”
  2. Establish an agreeable means to connect with your child’s case manager throughout the year about progress. It does not have to be much; short emails or monthly phone calls can help you keep a pulse on your child’s education and can reduce the stress of feeling that the IEP meeting is the only time your voice will be heard.
  3. A month ahead of the meeting, call or write the teacher with some of your thoughts going into the IEP. What are your priorities? What challenges do you want to see addressed and what strengths do you want to celebrate? What are your long term hopes for your child? This can help you and the case manager more quickly get on the same page as they develop the first draft of the IEP. This is also a great time to request that particular people who may not ordinarily be there be present at the meeting, such as a particular general education teacher.
  4. Request to receive a draft of the IEP at least three days in advance to review. This will allow you to become familiar with what is being proposed, and you will be better equipped to engage in the discussion.
  5. Write out notes of what you want to make sure is discussed and bring them with you to the meeting. The conversation can take many bird walks and you may easily forget all of the important topics you wanted to touch on. Share your list of topics with the case manager so they can make sure each one is addressed.  Request that these items are represented in the notes and in the Prior Written Notice.
  6. Know that it is ok to be unsure of what you want. Come to the meeting ready to be open about where you are indecisive, and trust that this team (which includes you!) will make the right decision for your child.
  7. When you come into the room, ask if you can sit next to the case manager. The physical arrangement can become very intimidating if the family is on one side of the table and district staff are on the other. Mixing up the seating arrangement and discussing alongside the person who is leading meeting can make for greater comfort and better collaboration.
  8. Bring a few pictures of your child to share. It can help people see the whole child that you see, not just the school child. You may have a person at the meeting who has never met your child, and putting the face with the name can help unify the conversation.
  9. Before the meeting gets going, ask for everyone to turn the papers over and have a genuine opening discussion. Sometimes it can feel like the paperwork gets in the way of the process. Having a quick opening paperless discussion on how things are going and general thoughts of what people would like to see from this IEP can help people get into a groove of how they can both hear others and be heard.
  10. Remember to thank the school team for the things they are doing well. Yes, this road goes both ways and the school does need to celebrate the things your student is doing well. But by showing appreciation for the school team they may be less likely to feel like they are on the defense, and they may be better able to hear your concerns.
  11. Do not hesitate to stop and ask for clarification. School staff take part in anywhere from ten to forty IEP meetings a year. You may just go through one. Ask the teacher to pause when you need clarification or to define terminology.
    First day of school – student of first grade.
    Photo: Genti Shkullaku / World Bank
  12. Do not feel the pressure of signing the IEP. Signing does not mean you agree with everything that has been shared, it just means you participated in the meeting.
  13. When the meeting adjourns, the IEP is not written in stone. Take comfort in knowing that you can change your mind down the road. At any point between the end of the meeting and the initiation date on the Prior Written Notice you can contact the case manager about anything that you disagree with or that you have changed your mind on. Beyond that, you do not have to wait until a year later to adjust the IEP.  At any point in time you can request that the team reconvene to discuss potential changes.
  14. If you feel that not all of the needed people are there to make an educated decision, request to discontinue the meeting and pick up on another day when the needed voices can be there. For a health related issue, you may need the nurse present. If it is accommodations for P.E. class, you may want the P.E. teacher present.
  15. When the meeting starts, ask that someone besides yourself to takes notes. This should be standard practice, however some teams may forget. At the conclusion of the meeting ask for a copy of the notes taken. There is a lot that is shared at an IEP meeting, it can be difficult to actively participate and take notes for yourself on what was discussed.
  16. On the way out the door, be sure to thank everyone individually for their passion and their hard work with your child. Working in special education can be exhausting. Letting them know that you notice can go a long way in setting the tone for the year ahead.

___

Patrick is the Autism Specialist of the Auburn School District in Washington State. Over his thirteen years as a teacher and consultant, he has grown to have a particular passion for equipping school teams that support students with autism. Patrick enjoys engaging educators through his hybrid of inspirational and instructional speaking.  To learn more, visit his website at www.patrickmulick.com.

 

WAAA at Autism CARES Conference

Washington Autism Alliance & Advocacy (WAAA) was well represented at the 2017 Autism CARES Meeting in Bethesda, MD earlier this week. The theme was “Pathways to Progress: Overcoming Barriers to Access, Translating Research to Practice, and Reducing Health Disparities.” Arzu Forough, WAAA Founder/CEO, delivered a mini keynote presentation discussing WAAA’s fierce advocacy efforts to help families overcome barriers to insurance benefits and health care for children on the spectrum.

 

Arzu Forough presenting at Autism CARES 2017.

The conference provides an opportunity for legislative grant recipients to share information and discuss emerging trends in research, training, and state systems change efforts. WAAA staff attending the meeting included Family Services Director Jen St. Cyr and Health Systems Program Manager, Mika Timmons, along with Arzu Forough.

Timmons delivered WAAA’s poster presentation as part of a topical symposia. She notes, “the Autism CARES conference was an excellent opportunity for WAAA to share ideas and discuss system challenges with other autism related organizations across the US and to connect with federal public health policy leaders.”

Helping Families Across Washington State

As WAAA’s new Family Services Director, St. Cyr observed, “I was inspired by the multi-cultural, multi-language inclusion at the conference. The energy was very solutions focused and I left inspired and full of hope.”

 

Inclusion Leads to New Experiences

Our Friendship Matters teens had an outstanding day of new experiences and new friends yesterday with Sail Sand Point at Magnuson Park in Seattle.

“I had a blast!” declared youth participant, Gary, age 18. The majority of teens participating had never been sailing before, although a few discovered hidden nautical talents.

“Opportunities like this are so important for our teens,” commented WAAA Parent Partner Korina Heard. “Every community outing provides special moments for interactions with new people and new experiences. These touchpoints allow both community members and our teens to learn more about one another and for our participants to gain essential skills for navigating the world around them.”

“It was a pleasure to have the teens join us for the day,” remarked Sail Sand Point staff member Ben Harter. “Their expressions of happiness and excitement were evident from the moment they got on the water. I especially loved the fact that many of the participants had never sailed before, yet by the end of the day, they were clearly gaining confidence and developing new and useful skills.”

Participant Anthony, age 17, shared that his favorite part of the day was seeing the other boats scattered around the lake. “I was pushed out of my comfort zone,” he commented, then quickly followed up that he’s glad he stuck with it. “It’s experiences like these that foster inclusion and allow our special needs youth to grow,” notes WAAA Director of Family Services, Jen St. Cyr.

Sail Sand Point is a dedicated to youth and access for all. Via their Shipmates program, over a season they provide approximately 60 days of access to various groups in the community. Sail Sand Point has furthered their commitment to inclusion by providing a donation to the RBG Charity Golf Tournament benefitting WAAA on August 28th. The team at WAAA appreciates community partnerships such as these, creating a welcoming environment and opening new worlds to our youth.

 

“On a day when the wind is perfect, the sail just needs to open and the world is full of beauty.”     ~ Rumi

Story of Hope: Olive’s Story

Just as Olive was nearing age 2, alert grandparents pointed out that she may have developmental delays. Shortly afterward, at Olive’s two-year check up, Olive’s doctor recommended a thorough evaluation to assess possible speech and language delays.

As the family worked through a lengthy referral and diagnosis process, Olive’s parents noticed she struggled with the challenge of transitions. Her delays and challenges were confirmed with a diagnosis of Autism Spectrum Disorder (ASD).

Fortunately, with support provided by Boyer Children’s Clinic, Olive’s parents gained instrumental knowledge and learned to give Olive more time and a fair warning before transitions, which helped enormously. After attending Boyer for speech and occupational therapy for 4 – 5 months, Stoltz was surprised to be notified of a refusal of payment for speech therapy by his insurance company.  

Olive, now age 4, maintained her speech and occupational therapy at Boyer until her third birthday. Meanwhile, Jeremy continued to work with Boyer to address insurance payment challenges. After a year of claim denials, Boyer suggested Jeremy connect with Trish Thrush, Health Law Advocate/Insurance Navigator at Washington Autism Alliance & Advocacy. Trish wrote an appeal letter to the insurance provider and coordinated with the human resources department at Jeremy’s employer.

As a result of Trish’s efforts, approximately half of Boyer’s back bills have been covered and the family is relieved to have never received any bills for Olive’s speech therapy.

Jeremy feels pretty optimistic these days. Olive is now receiving ABA therapy and attending school at the Experimental Education Unit (EEU), which is “amazing”. Although there’s some anxiety about kindergarten, Olive’s parents know what works for their daughter, they have an Individual Education Plan (IEP) in place, and are ready to advocate on Olive’s behalf.

“She’s a really good kid,” Jeremy enthuses, “I enjoy my time with her – she’s fun to hang out with.”

Artwork by Olive

 

Friendship is a Two-Way Street

“We just hang out,” is how peer-mentor Patrick Palmer explains his role as a peer-mentor in WAAA’s Friendship Matters social group for youth on the autism spectrum. What comes easily  to many teens, hanging out, can often be a challenge for teens and young adults with autism. Friendship, congeniality, and positive peer relationships are the heart of WAAA’s Friendship Matters, enabling participants to improve their social skills, develop lasting friendships, and enjoy a crucial sense of normalcy.   

This spring our Redmond Friendship Matters teen group has had two outstanding peer mentors, Patrick Palmer and Giuliana Ernst. Eighth-grader Giuliana came to peer-mentoring as an elective at her middle school. Now she’s hooked and hopes to continue helping kids on the spectrum while throughout high school. Patrick, 18, says he hopes to do this, “as long as I can,” recognizing, “it’s always fun.”  

Both Patrick and Giuliana remarked on the impact of seeing the teens grow as a favorite outcome of serving as a peer mentor. “You need to be the first to initiate conversation and have lots of patience,” notes Giuliana. “Kids on the spectrum are not really different than us — we can help them.”

Outings to local businesses provide multiple layers of entertainment, whether an enthusiastic drummer taking center stage at Guitar Center or an excited teen yelling “Touchdown” after a good throw at the bowling alley.

“It’s a great program,” comments Patrick. When asked what he’d like to see in the future, he asserts, “another group and more volunteers,” noting that there’s currently a waitlist for both of the Redmond groups. Patrick and Giuliana face heavy work, school, and sport commitments this summer, but both hope to continue to volunteer and engage as peer mentors in some capacity.

Friendship Matters provides an easily replicable, best-practices model for creating positive social opportunities for adolescents and young adults. Please contact WAAA if you want to participate, replicate, or support Friendship Matters!

 

Expanding ABA Therapy Access in SW Washington

Accessing Applied Behavior Analysis (ABA) therapy is a challenge for many families across Washington state. Beth Hammer, Washington Autism Alliance & Advocacy (WAAA) Regional Outreach & Advocacy Coordinator, has been busy tackling this need in SW Washington.  With a limited number of Board Certified Behavior Analysts (BCBAs) in SW Washington, Beth looked for creative ways to fill the gap so kids could access the services they need. Using her workforce development background, Beth teamed up with Worksource-Vancouver and Carla Myers, MA, BCBA/L, CC, owner/CEO of Discovery Behavior Solutions to create a program to train Registered Behavior Technicians (RBTs). As paraprofessionals, RBTs work under the supervision of BCBAs and enable certified behavior analysts to take on bigger caseloads, opening up services for more children.   

Worksource-Vancouver recognized the value of the training both for job-seekers and families and eagerly joined forces with WAAA to offer this opportunity, 100% paid for by Worksource. This past winter, nine participants completed 60 hours of classroom and supervised hands-on training. Upon successful completion of the RBT exam, SW Washington will have nine new nationally credentialed RBTs!  

It’s a win-win-win scenario,” noted Carla Myers, “families in SW Washington will have improved access to 1:1 ABA therapy services, job-seekers will have a greater chance of finding a job with good earning-potential, and ABA therapy employers will have reduced staff-training burdens. I’m thrilled to be a part of this opportunity.”

Trainee Tiffany Craven, who is also the parent of special needs child, appreciates the training beyond the job benefits, “ABA has changed my life for the positive,” she comments, noting that she and her son communicate better now and he opens up “a little more.”
Through innovative partnerships such as this, we are opening doors for more families in Washington State. Please contact Beth Hammer if you need assistance in SW Washington.