Have a Happy Mother’s Day – Really!

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This article was contributed by Judy Clute, an ASNC Autism Resource Specialist in Raleigh and mom to a son with autism.

In the month of May, our thoughts turn to Mother’s Day and how we will celebrate Mom and all that she does all year. On this one day, moms are often given gifts of appreciation and perhaps a day to whatever they want to do. We feel pampered and special. But as a mom of two adult children, one of whom has autism, I know we often forget how important it is to take care of ourselves every day of the year so that we can be the mom our families need us to be.

Many articles have been written about research showing that mothers of children with autism are often in poorer health and more exhausted than mothers whose children do not have disabilities. Their stress level has even been compared to that of combat soldiers with PTSD. I can tell you from raising a child with autism for 23 years that the research is true. As an Autism Resource Specialist, I speak to parents on a daily basis who often do not even realize they are neglecting themselves, because they are so focused on providing the best care for their children.

Moms feel guilty if they take time for themselves. They think no one else can do it like they can; no one will care for their child exactly like they do. Well, they’re right. No one will handle your child’s day like mom, but the reality of it is, if we don’t take care of ourselves, we cannot take good care of our families.

What can we do to deal with the stress of the day-to-day demands we encounter raising our children? Here are a few things I encourage you to consider:

Take care of yourself first

One thing I learned over the years is to get up before my children. I wake up about 30 minutes before they do just to get myself together before I have to help them start their days. Mornings are often stressful, and being ready before my children are awake makes things less chaotic.

Find a support network

Parents of children with autism can feel so isolated. Find a group of people who can support you and with whom you feel comfortable sharing your experiences. Just talking to someone who will listen without judgement can be uplifting. Talking to other parents who have walked in your shoes is not only a way to feel connected but also a way to network and see how others handle similar issues in their lives. Surround yourself with positive people.

Take time away

We can’t imagine leaving for a few minutes to take a break, let alone for a few days. But sometimes respite care for the caregiver is what is needed. If this means you have to leave your child with your spouse, another relative, or a friend so you don’t fall apart, then do it. If you are struggling to leave for more than even a few hours, find something you enjoy doing, such as going for a walk, reading a book, or restarting a hobby you used to enjoy. The point is to find some time for yourself, perhaps just to breathe.

It’s OK if you don’t get it all done

Life is busy already with work, home, and all that school expects of our children. Many families that have children with autism also must add therapies and programs into their schedules. Pace yourself. Remember, it’s OK to let something fall off the plate once in a while. Not every day can be about therapy. A child with autism is first and foremost a child and needs to play and be a child. So on those days when you just can’t get something done or if you can’t make it to a therapy session, do not feel guilty. Take one day at a time and don’t sweat the small stuff!

Keep your sense of humor

A good laugh goes a long way. It’s not only good for your health physically and emotionally, but it also helps build relationships within your family and friends.

Focus on what’s most important

Don’t spend all of your time and effort on the child with autism at the expense of your marriage, family, other children, or friends. The best treatment for your child is a happy, healthy, and loving family.

To read more on this topic, check out Parenting Across the Autism Spectrum by Maureen Morrell and Ann Palmer, in the ASNC Bookstore.

Judy Clute can be reached at jclute@autismsociety-nc.org.

 

New Online Resource Directory! Tips for Use

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ASNC’s Resource Directory is a new web-based listing of the most often requested or recommended resources from Autism Resource Specialists that ASNC employs throughout the state. We are pleased to be able to make the Resource Directory available to the public in the hope that we can reach more people with information as well as generate interest in improving both the sources of information AND the availability of services for people with autism and other developmental disabilities throughout the state.

The Resource Directory is not yet comprehensive, and the first three main categories of information are: Health Care and Wellness, including mental health; Autism Therapy and Developmental Services; and Emotional, Social and Family Support. We will continue to add and update these community resources, and the database remains under construction with new categories, such as Recreation and Therapeutic Recreation, Advocacy, Legal and Financial, Residential, Education, and more to be added in the future.

The Resource Directory is statewide. It uses a standardized set of words, sometimes called a “taxonomy,” to describe the many services offered by different community organizations. The database already has hundreds of community organizations listed and more than 700 kinds of services.

In order for you to get the most out of the Resource Directory, here are five initial tips on using it.

  1. Putting in a ZIP code or city where you are located will help narrow your search results to organizations near you.

2. You can search the Resource Directory three ways: by Service Category, by Keyword, and by Agency or Program Name.

Search by Name if you already know the name of the place you are looking for in the directory. A partial name will generate more organizations, which may help find the right one if there are ones with similar names. Be careful to spell correctly! Misspelled names may result in “program not found.” Try a partial name if you are not sure of the spelling.

Search by Keyword if you have a word or words, part of a word, or even an acronym that describes the kind of services you need. Examples are things like “service animal” or “psych” or “ABA.” The keyword you choose will generate a list of specific services terms used in the database for you to choose from. See the tips below on searching by category if you get a longer list of search terms.

Search by Category when you already know one or more of the words in the services categories You can also learn more about the many service terms by browsing the categories and sub-categories. This may help with future searches.

  1. Searching by Category might take a little practice. When you click on a category, a list of subcategories appears; click on one of those subcategories, and a set of service terms will appear.

When you select (click) a service term to start your search, the top of the search results will be a short explanation of what that service term means, so you can decide whether it fits the kind of help you are looking for.

Some services terms are easy: “Service Animal” will pull up a list of places that train domesticated animals to help individuals with disabilities.

Some service terms are more complicated:

Looking at the “Innovations and Waiver Services” subcategory, you will see a list of service terms such as “Respite” or “In-Home Developmental Disabilities Habilitation Programs” that describe the kinds of services private providers may offer to someone who already has a Medicaid waiver slot under “Innovations.”

However, if you want to *sign up* for Innovations Waiver services (i.e. getting on the waitlist) you would look under the “Access to Services” subcategory and search for Home/Community Based Care Waiver. This will generate a list of LME/MCOs which is the place in NC where you sign up for Innovations.

Helpful keywords such as “Innovations” and “CAP” are attached to both of the service terms above to help narrow down the search when searching by keyword. We are adding new keywords all the time to make searches easier. If you have a suggestion for a keyword, you can send it to the resource staff.

  1. Your search results will automatically be grouped by city. If you prefer the list to be sorted alphabetically, just click on the words “Sort list by: Agency Name” on the right side above your results.
  2. You can ALWAYS contact an Autism Resource Specialist for assistance in navigating the services system, for advocacy help or to help find resources that are not yet listed in the online Directory.

 

ASNC is excited to be able to make the Resource Directory available and is looking forward to adding more categories of community organizations in the future. Please let us know if you have questions or feedback on the program. Send us an email at resource@autismsociety-nc.org.

What Would Acceptance Mean to You?

 

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More than anything, the Autism Society of North Carolina’s IGNITE program is a community where young adults on the autism spectrum find the acceptance and friendship they want and deserve. For the first time, they are going out with friends, driving, and dating. They are embarking on new educational journeys and landing jobs. The acceptance that our members find at the IGNITE community center in Davidson, NC – and the growth that follows – gives them the confidence to become more involved in the other communities around them.

So for Autism Awareness Month, we thought we would ask these wise young adults to share their perspectives on the higher goal: acceptance and inclusion into the greater community.

What would ASD acceptance look like to you?

“ASD acceptance to me would be where everyone, or mostly everyone, would look at people with Asperger’s or autism as not being different, but being just the same as every other human being. We just have different needs and think differently than others.”

“It wouldn’t be considered a ‘disability.’”

“Everyone would be accepting me the way I am without judgement.”

Why is acceptance just as important, if not more, than awareness?

“Once people ‘accept’ something that is different from the ‘status quo,’ they will most likely discover that it cannot be a hindrance to our already striving society, but will make the big picture of their lives even better. In other words, autism acceptance is important because those on the spectrum have unique skills that others might not have that can be useful out in the workplace or anywhere in general.”

“If people accept you, it means they know about ASD and don’t judge you for it. Awareness is just knowing about it.”

What opportunities would be opened up to you if the world was accepting of ASD?

“If there were ‘real’ job opportunities, it would open up so many pathways, such as purchasing a car to get to and from work, and living independently like everyone else our age.”

“I think I would be more open to doing things if the world was accepting to Asperger’s and autism, which would lead to more opportunities for me.”

What is one thing you think is misunderstood about autism or you wish people understood?

“I just wish that people would walk at least a mile – or better still, a week – in our shoes so they can have more understanding about how challenging it is when you know you can contribute so much to society and work alongside your peers and yet nobody gives you a chance to support yourself financially.”

“Some of us can do everything anyone else can do. I wish everyone knew that.”

“Just because we don’t understand, doesn’t mean you can’t explain it to us.”

What would ASD acceptance mean to you?

“Emotionally, it would mean happiness, acceptance, joy, more friends, having people accept my baggage and really more understanding.”

“To me, ASD acceptance means – and should be – a huge milestone in our history when the veil of ignorance and prejudice can finally be cast down and all neurotypicals can see that, like them, we share a common goal: living life as best we can and making a better future for ourselves and for our families.”

“It would mean me and many others like me could live life that doesn’t make fun of or look down on us for being us. I would like that very much.”

IGNITE, which was founded with support from the Evernham Family-Racing for a Reason Foundation, offers activities, skills training, and educational workshops that foster social, financial, educational, and employment independence for its members.

AmeriCarna LIVE Volunteer Uses Passion to Give Back

Larry Grossflam

Larry Grossflam, at left, with Ray Evernham, on right.

The Autism Society of North Carolina relies on volunteers to help carry out our mission. In honor of Volunteer Week, we share a story about one valued volunteer.

When Larry Grossflam moved to North Carolina from New York in the fall of 2014, he began looking for volunteer opportunities. Through his employer, United Health Group, he learned about the AmeriCarna LIVE car show held by former NASCAR champion crew chief Ray Evernham to benefit the IGNITE community center for young adults with high-functioning autism and Asperger’s Syndrome.

AmeriCarna LIVE is a takeoff on Evernham’s television show on Velocity, “AmeriCarna,” which takes viewers back in time and introduces them to car history.

“Having been a longtime follower and admirer of Ray Evernham’s career, a big fan of AmeriCarna on Velocity and being somewhat car-crazy myself, I thought this opportunity would be a perfect fit for me,” Grossflam said. “I instantly felt like part of the team and knew my assistance and experience was appreciated and respected.”

Grossflam has given AmeriCarna LIVE a huge boost each year. He attends other car shows in the area and hands out cards about AmeriCarna LIVE, which is held each November in Davidson, NC, and draws thousands of car enthusiasts. Grossflam also posts about the event on community calendars and the Facebook pages of car clubs. Once car owners have registered, he works with them, and he helps set up at the Moonshiners Ball, which is held the night before, and the car show.

“Larry Grossflam defines what it means to serve the community and give back,” said Det Cullum, AmeriCarna LIVE event coordinator. “His passion for cars and helping others has played an integral role in making AmeriCarna LIVE such a successful event, and we know he will continue to do everything in his power to help us make it better each year.”

Grossflam also has taken the time to learn about IGNITE so he can educate the public about the community center. IGNITE, which was founded with support from the Evernham Family-Racing for a Reason Foundation, offers activities, skills training, and educational workshops that foster social, financial, educational, and employment independence for its members.

“People should know that individuals with autism have skills, reach goals, and function in their communities like everyone else, but they need the right support to help them,” Grossflam said. “When I was given a tour of IGNITE’s facility and saw how the program was organized, what it did, and how they helped, I knew this was a great environment for young adults to receive that needed support.

“People should know that a program like this exists.”

Grossflam said he looks forward to continuing to volunteer for IGNITE and the Autism Society of North Carolina, and he encourages others to do the same.

“If you can use your experience and life’s work to help others or to just get involved in something you have passion for, it will pay you back with pride and an amazing feeling of empowerment and ‘doing good,’” he said. “You will also meet some great people, make new friends and set an example for others to follow. ASNC and the IGNITE program are a great place to start. You won’t meet better people.

“Those who can, do. Those who can do more, volunteer.”

To learn more about “AmeriCarna” and AmeriCarna LIVE, click here.

Governor Proposes New Funding to Assist Autism Community

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Today Governor Pat McCrory announced new initiatives that will be included in his proposed 2016 budget to be presented to the legislature before this year’s short session.

The Autism Society of North Carolina (ASNC) and other partners have worked with the governor’s office and the Department of Health and Human Services (DHHS) to include these new dollars that will provide for individuals on the autism spectrum and their families.

“We appreciate that Governor McCrory, Secretary Brajer, and Deputy Director of Division of Medical Assistance Dave Richard from the NC Department of Health and Human Services have put money towards needed services for the autism community,” said Tracey Sheriff, CEO of ASNC. “The proposed budget provides for a variety of services from case management, to evidence-based therapies and early intervention programs. We look forward to working with the legislature to make sure that these priorities make it into the final budget.”

Highlights of the announcement include:

Medicaid services expansion for people with developmental disabilities and autism 

  • The governor’s proposal adds 250 Medicaid Innovations Waiver slots to provide services and help individuals with developmental disabilities and autism continue to live in their community of choice. ($2.5 million)
  • Families who rely on Medicaid for support (waiver and Medicaid health insurance) will have the ability to access the same services for autism that were approved under last year’s autism insurance legislation through the state’s network of managed care organizations (MCOs). This means children with Autism Spectrum Disorder will be eligible for services (such as Applied Behavior Analysis and other evidence-based practices) under the Early and Periodic Screening, Diagnostic and Treatment program, or EPSDT. The Department of Health and Human Services will work with stakeholders to develop a Medicaid State Plan Amendment that outlines delivery of the covered intensive behavioral health treatments. This State Plan Amendment will be submitted to the Centers for Medicare & Medicaid Services by Sept. 1, 2016. To read more about EPSDT services for individuals with ASD see our March 18 blog here.

Case Management/Crisis Services – Invests in child facility-based crisis centers that work closely with Juvenile Justice, foster care programs, and schools. These crisis centers will collaborate with case managers and families to address the behavioral health needs of children who are dually diagnosed with intellectual and other developmental disabilities. ($30 million)

Ensure high quality early childhood programs by increasing Pre-K slots – Finally, the governor’s proposal will increase access to high quality education for an additional 400 at-risk 4-year-olds, including those on the autism spectrum. ($2 million)

The Autism Society of North Carolina will continue to advocate for and monitor the progress of these proposals as the legislature reconvenes. To read the full press release, click here.

Strategies for Solving School Challenges

IEP meeting

This article was contributed by Katie Holler, an ASNC Autism Resource Specialist in the Eastern Region and mom to five daughters, four of whom have autism.

Any parent can attest to facing difficulty at one time or another with their student’s IEP (Individualized Education Program). Perhaps you have disagreed with the other members of the IEP team or school staff. Or you might have questioned the team’s decision to increase, decrease, or exit your child from special education services. Diplomacy, relationship-building, and forgiveness are important in these situations. Remember, you and the school staff are bound together for as long as your child attends school.

Before difficulties arise, try to build positive relationships with the school staff. Never underestimate the positive impact of frequent, polite, and friendly interactions. I find that offering compliments to school staff when appropriate can help to build a positive relationship, which is helpful if you ever do disagree. Think about the times you are approached with corrective criticism: How do you respond when the criticism comes from a valued and trusted source? You might be willing to consider the concerns. But if the criticism comes from an individual who is always finding fault, your reaction might be different.

If you do have concerns, you can use emails, letters, phone calls, and meetings with school staff as well as Central Office EC staff to begin the task of cooperative problem-solving. A conversation about a challenge or difficulty need not be adversarial. Begin a difficult conversation by asking for more information or clarification. Multiple state and federal policies govern services for children with disabilities, so it is impossible for parents to know and understand all of these policies.

Ways to Resolve Conflicts

Despite our best efforts at diplomacy, conflicts may arise that cannot be resolved through talking with the school staff. Some parents’ first response might be to consider employing an attorney to address and resolve the issue. I caution parents to think again about “pressing the panic button” and calling an attorney. Once an attorney becomes involved, the school will limit communication with the parent regarding that specific issue. The school’s attorney will discuss the specific issue of dispute with the parent’s attorney. The school will continue to communicate with the parent but no longer about the issue involving the attorney. Calling an attorney may be best as a last resort when all informal and formal attempts at dispute resolution fail.

One way you can enlist assistance and support in communicating your concerns to the school staff is to contact the Autism Society of North Carolina. Our Autism Resource Specialists specialize in working with parents and schools at resolving and maintaining a positive working relationship. Autism Resource Specialists are all mothers of children with autism, and have years of personal and professional experience related to IEPs and resolving school-related issues. To find the Autism Resource Specialist in your area, click here.

If you cannot resolve a conflict with school staff, you can look for help from the Exceptional Children’s Division of the NC Department of Public Instruction, which oversees public school systems and enforces the state and federal protections granted to a child who has been identified with a disability. The Procedural Safeguards Manual, which parents receive annually, details your rights. It is sometimes referred to as the “Parents’ Rights Manual.” I have to smile each year when I receive the four copies for each of my daughters at their annual reviews. I will often remark to staff that I have enough of these manuals to wallpaper a room or two in my home. All kidding aside, this manual is very important. It directs parents on how to file for the following dispute resolution actions:

  • Informal Dispute Resolution/Facilitated IEP Meetings
  • Formal Dispute Resolution/Written Complaint
  • Formal Dispute Resolution through Mediation
  • Formal Dispute Resolution through a Due Process Hearing

Simply contacting the Department of Public Instruction’s EC Dispute Resolution Specialists does not constitute filing a formal complaint. I mention this because in recent months, some parents have elected to call and complain instead of filing a formal complaint. If a Dispute Resolution Specialist receives a call from a parent, they will contact the school system’s EC Director and explain the parent’s concern. This may or may not resolve the issue. But please remember, I strongly encourage you to exhaust all attempts to resolve issues and concerns before making a complaint against a school.

Seeking DPI Help

Formal Dispute Resolution/Written Complaint: Let’s begin with the formal definition of a State Complaint as written in the Procedural Safeguards Manual. “State Complaint – A state complaint is a signed written statement that alleges a school or local education agency is not following special education law and regulations found in IDEA, Article 9 of section 115 C of the NC General Statutes. This statement is a formal request for the EC Division to investigate issues of non-compliance.” It must include:

  • A statement that the LEA or other public agency has violated federal and state policies
  • FACTS on which the statement is based
  • The signature and contact information for the person filing the complaint. It cannot be anonymous.
  • Information about the child for whom the complaint is being filed: name, address, description of the problem, and facts related to the problem
  • A proposed resolution to the problem

Upon receiving the complaint, the Department of Public Instruction (DPI) will respond within 20 days. DPI will review the information, investigate, and request additional information from the school.  DPI will render a decision within 60 days of the complaint filing. To learn more about filing a formal state complaint, click here.

Remember, a state complaint alleges that the school is not following federal and state law, not just that you disagree with the school staff’s approach.

Informal Dispute Resolution/Facilitated IEP Meetings: If you want assistance from the DPI in meeting with the IEP team, you can request a Facilitated IEP Meeting. This free service helps to produce a positive and productive meeting during which the school staff and the parent are given equal time to verbalize their concern. To submit a formal request for a Facilitated IEP Meeting, you will need to document your attempts at meeting with the school and why you are requesting a facilitator. For more information, click here.

Formal Dispute Resolution through Mediation: If you disagree with a school’s decision, you can also request Formal Dispute Resolution through Mediation. Mediation provides an impartial individual with experience in mediation and working with schools and families to resolve issues outside of the courtroom. Mediation will usually produce a binding legal agreement between parent and school that clarifies the outcome of a situation or dispute. This is also a free service through DPI. For more information about requesting Mediation, click here.

Formal Dispute Resolution through a Due Process Hearing: If these processes and procedures are not effective and the parent wishes to hire an attorney, they can submit a Due Process Petition. When a parent elects this process, the attorney will be handle all of the communication and problem-solving with the school. The parent and student are now officially represented via an attorney. For more information about Due Process, click here.

Not every situation requires an approach detailed in this manual. As a parent of children with autism and as a professional serving parents with children on the spectrum, I strongly encourage a proactive, positive, and diplomatic approach with any and all communications with a school and school staff.

For more information on IEPs, see the Autism Society of North Carolina’s toolkits.

Katie Holler can be reached at 252-756-1316 or kholler@autismsociety-nc.org.

 

Taking a Look at the CDC Numbers

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The Prevalence Data from ADDM monitoring network. Image from CDC website – http://www.cdc.gov/ncbddd/autism/data.html

Yesterday, the Centers for Disease Control and Prevention (CDC) released an update to its ongoing surveillance study of autism prevalence. The study involves eleven states and began in 2000. Much of the prevalence data that we read about (1 in 68 8-year-old schoolchildren nationally, or up to 1 of every 58 8-year-old schoolchildren in North Carolina) is a result of the CDC’s work. Updates to numbers are provided every two years, and we have grown accustomed to the data showing an increase in prevalence. This year, that did not happen.

Yesterday’s data showed that the prevalence across the eleven monitoring sites stayed the same at 1 in 68. In North Carolina, the prevalence changed by one digit, going from 1 in 58 to 1 in 59.

So, what does it mean? Here are a couple of questions we have been asked:

  • Are rates stabilizing? In some sample sites, there was an increase in prevalence. In others, a decrease. Also, there were differences in data from site to site. For example, in North Carolina, researchers used health and educational records. In other states, only educational records were used. We will be able to determine whether rates have “stabilized” when the 2018 update is released.
  • Are fewer kids being diagnosed? Based on the calls and requests that the Autism Society of North Carolina handles annually, no. We are receiving more calls and requests for our “After the Diagnosis” workshop than ever before. Notably, the NC Department of Public Instruction conducts an annual survey of kids in the public schools. That data, the NC Statistical Profile, shows that the number of students with a diagnosis of autism is increasing annually by 16%. That trend has been consistent for over a decade.

What else did the report say?

Significantly, North Carolina again led the nation with the earliest median age of diagnosis: 37 months. This means we are identifying, referring, and diagnosing kids earlier in our state than anywhere else in the country. We urge all parents and caregivers to seek a comprehensive evaluation when concerns arise.

The Autism Society of North Carolina has worked to increase awareness and understanding of the signs and symptoms of autism, and the study shows that these efforts are paying off. Why is this important? By having an early diagnosis, children and families are able to access support services through their schools and other organizations. This also cuts the cost of care for an individual with autism by an estimated $1,000,000 over the lifespan. We must continue these efforts.

While it is good to have the earliest median diagnosis, significant differences exist among populations for age of diagnosis in NC and nationally. To close this gap, we must increase our outreach and education efforts in underserved communities. ASNC is working on this issue through our Hispanic Affairs department and our faith-based initiatives, which encourage education and inclusiveness. We must continue these efforts, because every child with autism deserves the opportunity to receive appropriate and personalized treatments.

Finally, an important point to remember is that the children with autism in the study will grow up to be adults with autism. Early intervention and supports are important, but we must invest in and expand services and resources for individuals with autism who are transitioning to adulthood. The 1 in 59 children will become 1 in 59 adults living, working, and contributing to their communities. The current adult population also needs supports and opportunities, so we must not focus solely on the early years.

What can you do to help?

We welcome your participation in spreading awareness and understanding. April is Autism Awareness and Acceptance Month, so please visit our website for more information about autism and local resources. Our special #A2AforAutism page has a wealth of ideas and resources to help your community be more aware and accepting of children and adults with autism this year. You can also donate to improve the lives of individuals with autism and their families, or get involved by participating or volunteering in one of our Run/Walk for Autism events.

 

 

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