Thank You, from One Mom to Another

 

Sherri_0119.JPG

Sherri Krewson Garner, Leader of the ASNC Crystal Coast Chapter, shared this post about her gratitude for another mom and leader.

I want to express my deepest gratitude to another chapter leader! In 2000, after going through a divorce, I moved from Lincoln County to the coast of North Carolina to be near my family. I had been my daughter Sydney’s advocate since she was diagnosed at age 2 as “mentally delayed” or having a mild intellectual disability. But over the years, things didn’t add up; she just didn’t seem to fit in that category. When Sydney was 11, I heard about Asperger’s Syndrome, and this seemed to fit.

As the years went on and the struggles continued, I found a local support group and we started the Crystal Coast Chapter of the Autism Society of North Carolina. I started out as secretary, became co-chair, and am now the leader of the chapter. As a chapter, we started with a support group meeting once a month. Then as we saw what families needed, we added meetings on topics such as IEPS and school issues as well as social activities. Once a month, we have a social event called Friends & Fun to celebrate birthdays, and we also have Music with Mary, a casual music therapy class. Our biggest fundraiser, the Crystal Coast Run/Walk for Autism each May, raises money that enables us to do these special events at little to no cost to families.

Being a part of the chapter was a help to me and my family, but when Sydney was 18, she began running away from home at night. I would follow her in my car down the highway and call the sheriff. They told me what I already knew: They couldn’t make her come home because she was 19 and an adult. But was she? Could she make the right decisions? Could she take care of herself? She didn’t have a job and hadn’t graduated school. I spent nights crying, feeling that after 18 years I had failed because in every IEP, my ending goal was for my daughter to graduate from high school. It sounded simple, but it wasn’t, and it was my goal.

Sydney said she wanted to live with her dad, so in the spring of 2015, I obliged and had him come and take her to live with him at the other end of the state. Even though we were divorced, he and I continued to work together for her sake and remained supportive of one another. But he was taking on a role that was foreign to him; until you deal with the issues every day, day and night, you can never truly understand life as a parent with a child on the spectrum. Sydney started having a lot of trouble at her new school and in her new home life with a parent new to dealing with these issues.

Sydney’s dad called asking what to do. I felt just as helpless as he did; I had walked in those shoes but did not have an overnight fix. So I got on my computer at 11 o’clock that night and searched for the ASNC Chapter in Lincoln County, thinking they could provide some support. I proceeded to write an email to Ginny Hall, who co-leads the Lincoln County Chapter alongside Kristie Robertson, asking her to please reach out to Sydney’s dad because he needed help and I was a six-hour drive away.

Sherri_0052.JPG

Ginny and Sydney

Ginny was in my eyes sent from God! She helped my daughter so much, especially on school issues. They had hard times, but she never gave up on my daughter. She worked with Sydney’s father to find the resources he needed, including in-home treatment and medications. Ginny also became a true friend and confidante to Sydney.

Sherri_0145.JPG

Sydney and her mom, Sherri

This June, I traveled to Lincoln County for my daughter’s high school graduation and to meet Ginny for the first time. I had been feeling so guilty, and thanked her for all she had done. Ginny said, “It takes a village to raise a child.” It means so much to me that she took time away from her family to help my family. Ginny Hall, I thank you as one autism mom to another and as one chapter leader to another!

It does not matter how we get to the IEP goal, just that WE DO! I only hope I support other families in my chapter in the same way.

 

Have you found an ASNC Chapter to be your “village”? The Autism Society of North Carolina has more than 50 Chapters and Support Groups around the state. These groups are led by generous parents or family member volunteers who join together with other concerned individuals to create a welcoming and inclusive community of support for individuals with autism and their families.

ASNC Chapters provide a place where you can:

  • Receive support and encouragement from families facing similar challenges
  • Share experiences, information, and resources
  • Raise awareness about the needs and the abilities of individuals with ASD
  • Learn realistic, practical solutions for autism-related concerns
  • Feel welcomed, accepted and understood

 Click here find a Chapter near you.

Jewels for the Journey

gwen and son

This article was contributed by Gwen Capers-Singleton, an ASNC Autism Resource Specialist in Charlotte and mom to a son with autism.

Now that school is almost out and the weather ideal, I have started training for another marathon. As a mother of three, including an adult son with an Autism Spectrum Disorder (ASD), running is my de-stressor. No matter the issue, I can solve it on a good run. While I do not have the running physique or any special athletic skill, through discipline, determination, and a customized training plan, I have discovered that I actually enjoy distance running. There is nothing like clearing the head over 13 or so miles – not to mention the change of having my kids and husband cheering me on as I gather the last ounce of strength to sprint (for the photo op) past the finish of 26.2 miles. When you cross the finish line, the sense of accomplishment and empowerment is amazing. It is in that space that I feel confirmation that I am indeed equipped to handle anything: autism, transitions, the 2016 elections – a walk in the park!

Running has added so much to my life and helped me become a better advocate and teacher to my son. It seemed like the hardest lesson for me was “pacing.” Inevitably, I would start out too fast and bonk (hit the wall) or injure myself at the end. Interestingly, I recalled hearing a similar sentiment in another area of my life. An educator gave me this exact advice when my son was very young: “Pace yourself, as this will be a journey.” Needless to say, I now understand and have learned to practice patience. I am now extremely mindful of my “pacing” not only for running, but also in my efforts to support my son.

What started out as a way to manage my health has become essential. Pounding the pavement has awarded a number of helpful gifts and skills: confidence, inner peace, perspective, flexibility, negotiation skills, mental toughness, and creativity, to name a few. All have served me well as an ASD advocate. Here are a few other jewels gathered along the way:

 

 

Running lesson: The hardest step is the first step.

Jewel for the journey: Running is very simple. To get started, you just lace up your shoes and head out the door. But at times, it seems difficult to get moving in the ASD lane.

Whether your child was recently diagnosed, is struggling through a transitional milestone, or is exhibiting undesirable behaviors, knowing where to start can be overwhelming and paralyzing. But remember, your child can’t get to the finish line if he or she never makes it to the start. So after you have taken the necessary time to work through your emotions:

  • Educate yourself. Knowledge is power.
  • Get organized. Keep notes and important documents in one place.
  • Set goals and break tasks into smaller steps.
  • Seek resources. Ask for and accept help.

 

Running lesson: You don’t have to be talented, just determined.

Jewel for the journey: During a time of great need for services and supports for our kids, passionate teachers with limited resources, and wait lists for community support services of 5-7 years, we, as parents and caregivers, must be unwavering in our commitment to finding a way to meet the needs of our children. If your child is denied services or placed on a wait list:

  • Ask questions to understand the reasons for denial.
  • Keep a copy of the rejection letter for your files.
  • Build your knowledge on the appeals process and file an appeal.
  • Be persistent, but positive.
  • Use natural supports, including family members, friends, co-workers, local church members, neighbors, and supportive acquaintances. For example, parents of older teens and/or adults looking for employment might consider volunteering at their local church pantry or working out an internship with a neighbor who also happens to be a small businessman. Natural supports are a way to build job skills and could lead to long-term employment.

 

Running lesson: Sometimes things just don’t go as planned; accept it, learn from it, and move on.

Jewel for the journey: Someone great said: If you fail to plan, you plan to fail. Planning is an essential part of the ASD experience at home, school, and in the community. To set your child up for success:

  • Assess whether your child has the necessary skills for the activity. If not, first teach said skills.
  • Be consistent in your approach in all settings.
  • Use a visual schedule.
  • Have a backup plan that includes calming strategies in case a meltdown occurs.
  • If a meltdown occurs, consider what happened before, during, and after the meltdown.

Be flexible and make adjustments accordingly. Tweak the plan and try again. Life’s challenges can either defeat you or develop you. Refuse to be defeated.

 

Running lesson: There will likely be faster runners; learn from them.

Jewel for the journey: As you travel on this journey, you will see kids across the spectrum. Some will be more independent and higher functioning, and some will not. We can always learn something from each other’s experiences.

  • Don’t waste time comparing your child’s abilities and feeling hopeless.
  • Celebrate and accept the quirkiness of your child.
  • Conversely, there is no room for judgement toward anyone on the spectrum.
  • While ASD can present very differently, we all have opportunities for growth.
  • Rely on the positive resources in your life.

 

Running lesson: Runners support each other.

Jewel for the journey: Some days, you will feel overwhelmed, stressed, or downright discouraged. Know that isolation helps no one. We are walking, and with some of our kids running, through this journey together. No one can run on empty, and no one can do this alone. ASD parents want to share their experiences with and receive support from others.

  • Find comfort in knowing that someone else understands what you are going through.
  • Exchanging ideas and experiences can help you better manage the day-to-day challenges.
  • While other parents are not trained counselors or therapists, they can be an invaluable resource.
  • Parents can provide information on summer camps, local schools, therapists, autism-friendly dentists, doctors, recreational activities, and more.
  • Other parents can help you be more hopeful about your child’s ability to reach their fullest potential.

Seek out other ASD parents and hold onto these relationships. ASNC Chapters are a great place to start. Above all, know: You are not alone.

 

Running lesson: Don’t take yourself too seriously. Enjoy the journey.

Jewel for the journey: As a parent of a child with ASD, having a healthy sense of humor is essential. With the unique challenges of our kids, there is indeed enough heavy lifting. You have to admit, our kids can say and do some amusing things.

  • Laughter is restorative and reflective.
  • Instead of dwelling on the mishaps or embarrassing moments, look back with a chuckle. As you reflect, see the humor in the moment, which will also help you retain any wisdom from the experience.
  • Celebrate all milestones, big and small.
  • It just feels good to laugh, and IT IS OKAY TO LAUGH.

Aside from running, one of my best teachers has been my beloved son, Jahlani. Jahlani is a young man of few words, but he conveyed essentially that while the aforementioned life lessons are meaningful, some of us need a more tangible reason to run.

The scene is a Special Olympics running event. It’s hot, and Jahlani is not feeling like participating in his running event. So Dad and I had to pull out the backup motivation plan. Dad walked down to the finish line and held up Jahlani’s iPad. The iPad that had mysteriously disappeared for a few weeks. Results: Jahlani took home the gold!

While our journey is not a sprint, but more like a marathon, we can joyfully embrace the jewels along the way!

 

Gwen Capers-Singleton can be reached at gcapers-singleton@autismsociety-nc.org.

 

Help Shape Crisis Services for Children

 

North Carolina will soon expand START crisis services to children and youth with intellectual and/or developmental disabilities (IDD) and autism. Many of these children with complex mental health or behavioral needs have not been served by current crisis services due to a lack of space, and are held in emergency rooms or transferred to inpatient care.

You can help!

If you have a child age 6-17 with IDD or autism and a behavioral or mental health need, we need you to volunteer for a phone interview. Your feedback will guide the service planners on how to best meet the needs of children and their families. The interview should take about 15-20 minutes and responses are completely confidential. To participate, please email your name, the age of your child, and your phone number to jmahan@autismsociety-nc.org so we can connect you to the researchers.

Online survey

The University of New Hampshire, which houses the Center on START Services, is also surveying community members who interact with children to find out where services are working well and where they need to be improved.  We know what you are thinking: “ANOTHER survey?” YES! This data is going to be very important to figure out the best way to use the limited funding. It is also important for groups like ASNC to deliver data along with a clear message to lawmakers about where additional funds and policy changes should be directed.

Community members who interact with children through mental or IDD services, schools, medical services, courts, or the broader children’s services system are encouraged to take the online survey. The survey should take only a few minutes and will help improve services to children with IDD and their families. Family members may also use the online survey.

Background on START

START is a nationally recognized model for providing prevention and intervention services to people with IDD experiencing crisis, challenging behaviors, and mental health issues. The program focuses on keeping individuals in a community or home setting, out of facilities, and providing training and support to prevent future crisis. North Carolina has been a leader in offering START services to adults with IDD.

Last year, the NC General Assembly, with the support of the NC Department of Health and Human Services, allocated funding to expand START to children and youth. Recognizing that the funding is not adequate enough to serve the needs of all children in crisis, some Local Management Entities/Managed Care Organizations (LME/MCOs) have begun offering additional funds to support START in their region. ASNC is pleased to see one of our long-time advocacy targets finally funded, though we will continue to advocate for full funding for the service as well as the continuum of support for children and adults.

Please consider sharing this post with others! Thank you for taking the time to help improve services in North Carolina.

Speak Out on NC Budget Proposals

gavel31

This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy at ASNC.

On June 1, the NC Senate released its version of the budget adjustments bill for this year. Despite advocacy directed at the Senate to improve on what the NC House budget offered, the Senate includes no funding for federally required autism behavioral services (EPSDT), child or adult IDD crisis funding, pilot programs for targeted case management, or other autism services. The Senate instead reduces funds to the Medicaid base budget by 8%, rather than investing in needed autism services. The Senate included only $30 million in replacement funds for state-funded services to the Local Management Entities/Managed Care Organizations (LME/MCOs), and that funding is contingent on there being savings elsewhere in the budget to support it. The total loss of funds to LME/MCOs over two years is close to $275 million. In addition, the Senate does not include enough funding to take hundreds of families off of the waiting list for the K-12 students with disabilities scholarship.

Senate and House budget committee members are now starting the conference committee process, in which they will come to agreement on the differences between the two versions of the budget. There is still time to push for conference committee members to take the House budget numbers, which do not include everything we have asked for, but are better for people on the autism spectrum. To view the Senate and previous House budgets go to the General Assembly website.

Why are the Senate budget numbers a problem for children and adults with autism?

  • North Carolina has 12,000 people waiting for Innovations waiver services
  • While they wait, sometimes going into repeated crises, the only services they may qualify for are state-funded through the LME/MCO or in some cases, Medicaid EPSDT autism services. State-funded services administered by the LME/MCOs fund things such as crisis care, respite services, day services, residential care, and social and recreational programs. These programs build skills, provide safety and support, and give families a needed break.
  • During a crisis, they wait in emergency departments for scarce beds in programs that have the capacity to help them.
  • And during all this, they no longer have case management to assist them with system navigation, finding resources, and helping families advocate for better care.
  • Hundreds of children are waiting for K-12 scholarships even though legislators have said they are committed to offering a variety of educational options for students with disabilities who may not be able to be served in the public school system.

What can you do?

The needs of children and adults with autism are many, but there are solutions. North Carolina has the revenue to start making targeted investments in serving those who need services and educational options. Please call or write the NC senators below and ask them to start doing so now.

1) Autism Services: Contact the NC Senators listed below to ask for funding in the Health and Human Services budget for people with autism including Innovations waiver slots, crisis services for those with intellectual and developmental disabilities, and funding for needed autism services in Medicaid.

The message is simple: Too many people with autism are waiting years for help. NC needs to fund Innovations waiver slots, crisis services, and autism services in Medicaid, and return funding to LME/MCOs for people who have no other access to services.

If you have a family member on the autism spectrum, are waiting for help, and/or have been helped by services in some way, share your story.

  • Ralph Hise, Co-Chair Health and Human Services Appropriations, 919-733-3460, Ralph.Hise@ncleg.net
  • Louis Pate, Co-Chair Health and Human Services Appropriations, Deputy President Pro Tem, 919-733-562, Loiuis.Pate@ncleg.net
  • Tommy Tucker, Co-Chair Health and Human Services Appropriations, 919-733-7659, Tommy.Tucker@ncleg.net

 

2) K-12 Scholarships for Students with Disabilities: Contact the NC senators listed below to ask for funding to remove the waiting list for K-12 scholarships for students with disabilities in non-public schools.

The message: Ask the senator(s) to support the House’s budget, which puts $5.8 million in the budget for children and families on the waiting list for K-12 students with disabilities scholarships.

If you are on the waiting list or your family has found success in using the scholarship, please share your story.

 

3) Support the House budget for HHS and Education: Call the following NC House “Big” Appropriations Chairs/Members and tell them to support the House budget numbers during the budget conference committee process.

The message is simple: Use the House position on funding for Medicaid services, LME/MCO funding, crisis services, and the scholarship for students with disabilities.

 

If you have questions about the North Carolina state budget or other policy issues, please contact Jennifer Mahan, ASNC Director of Advocacy and Public Policy at jmahan@autismsociety-nc.org or 919-865-5068.