LifeLong Interventions: One Year of Changing Lives

This article was contributed by Whitney Luffman, MA LPA, BCBA, Lead Clinical LPA for the Triangle region.

When we first met, I was unsure of John’s* language abilities, because he remained mostly silent. But I could see him watching others speak and could tell that he was receptively listening and taking in everything around him. Over time, we got to know John and his likes and dislikes. We found items, activities, and topics that motivated him as we served him under our LifeLong Interventions program.

Eventually, we heard John’s voice – a tiny whisper at first, which grew more and more audible and functional. Over time, he learned the power of his words through direct teaching and natural environment learning. Now, we are never in doubt of what he wants and needs, because he makes his wishes known loud and clear. And we wouldn’t have it any other way!

Recently, we’ve begun to work on social conversation and reciprocity, and it’s amazing to watch as his social world expands. As a result of his increased engagement with his environment, we’ve seen the time he spends isolated and engaged in self-talk and physical stimming decrease drastically. He’s allowing his staff, his family, and his peers to become an increased part of his world, and we’re so happy to be part of that, because he has so much to share.

John’s story is just one among many as I reflect on the first year of ASNC’s LifeLong Interventions program. We began our program by serving only two adult clients and four children, all under the age of 6. Each had unique, individual needs, were from eclectic backgrounds, communicated their wants and needs in different ways, and had distinctive histories and stories of their own. But all of the individuals and families shared a common goal in seeking treatment: increasing their ability to be successful in their own environment and to ultimately improve their overall quality of life and general happiness and well-being. We were more than happy join them in working toward that goal. Today, we serve 22 individuals and their families, ranging in age from 2 to 26 years old. And we continue to grow!

We are so excited to be able to continue offering this program to individuals with autism and their families in our area and are looking forward to serving even more parts of the state as we continue to grow.

If you think ASNC can be of assistance to you or your loved one with autism, please visit our website, fill out this contact form, or call the Clinical Department at 919-390-7242.

*name changed

 

IF/THEN: A Strategy to Motivate Your Child with Autism

if then blank

This article was contributed by Nancy Popkin, Autism Resource Specialist in the Charlotte region and mom to a son with autism.

Back when my son was little and newly diagnosed with autism, he would play by looking at multiple books at a time spread out on the floor. When he was done, he would leave the books open on the floor and get a few more. Before long, our entire family room floor was carpeted in books. We would ask him to pick them up a couple of times, but he would ignore us. Then, in exasperation, one of us would say, “If you don’t put away your books, we will take them away.” The result? Crying, head-butting, and demanding, “Where will you put them? How long will you take them?” And the books remained on the floor.

But what did we want him to hear? We wanted him to hear, “If you put away your books, you can keep them.” But all he heard was the threat that we would take away his books. When we started to understand this, we realized we were going about it all wrong. We were still new to our son’s diagnosis of autism, and we were learning that to help him learn and understand pretty much anything, we had to figure out a way to add structure and make it visual for him.

if then done

And that is when I created the IF/THEN Chart.

Here’s how it works:

  1. Before approaching your child (young or adult) to deliver your ultimatum, fill out the chart.
    • The first IF/THEN statement should be what you want your child to do. So in our scenario, for the first statement we would write, “IF I put away my books, THEN I will keep them.”
    • The second IF/THEN statement will include the consequence should they not do the right thing. For the second statement, we put: “IF I do not put away my books, THEN mommy will take my books away and hide them where I cannot find them for 7 days.”
    • Notice that I always write the IF/THEN statements in the first person. Using “I” helps the person with autism read the statements and internalize the ideas as applying to himself/herself. This eliminates the need for the child or adult with autism to generalize, which is not a strength typically.
  2. Show your child the chart by covering up the bottom statement and only showing them the top portion. Read it with them and make sure they understand that if they put away their books, then they get to keep them.
  3. Then cover up the top statement and only show the bottom one. Make sure they understand that if they choose not to put away the books, the books will be taken away.
  4. Next, cover up the two IF parts of the chart and show your child the two THEN parts. Say, “Now you get to choose. Which do you want? Do you want to keep your books or do you want to have your books taken away? You choose.”
  5. Once they point to their choice, then cover up the full IF/THEN statement they did not chose, and read the one they chose with them again. Hopefully, they chose the outcome you are wanting, too. But if they do not, be prepared to follow through with the outcome they chose.

This strategy turned out to have several benefits. The first is that our son became much more willing to do things he didn’t necessarily want to do because he could see the benefit. It made more sense to him, and he had a choice of outcomes. He also liked that it eliminated the need for him to listen to me. Rather he could read it and process things much better. And this made us both calmer.

More importantly, this new tool forced me to stop and think before I spoke. I had to think carefully about what I wrote on the chart. I also had to think more about what was motivating to my son. I could put rewards in the THEN square, such as watch a video, go outside and swing, or get a Tootsie Roll, but I could also put statements such as “Mommy will be proud.”

A couple of things to keep in mind when using the chart:

  • First, make sure that the positive outcome in the THEN square is truly motivating for the person with autism. And write it in a positive manner. So instead of saying, “THEN I won’t be grounded” say, “THEN I will have extra free time and Mommy will be proud.”
  • Second, make sure the negative outcome is something that is reasonable and that you will be able to follow through with.
  • Third, it is not by accident that the IF/THEN chart is yellow. Our son was obsessed with yellow things back then, so making the chart yellow made it more acceptable to him. Incorporating the individual’s interest into the design of the chart can be motivating.
  • Finally, we laminated the IF/THEN chart so that we could use it over and over. It was durable, portable, and reusable. That said, keeping paper handy and folding it into quarters also works well.

Sometimes, we need to think like a person with autism to help them do what they need to do. Their brains work differently than those of a neuro-typical person, so we need to accommodate for that. When we account for characteristics such as a literal perspective of language, enhanced ability to understand information when it is presented visually, and the need to have control by having some choices, we offer the person with autism, our child, the opportunity to experience success. And we create more harmony in our relationships with them.

Nancy Popkin can be reached at npopkin@autismsociety-nc.org or 704-894-9678.

Learn About Innovations Waiver Changes, Share Opinions on IDD Issues

Medicaid Diversion

The North Carolina Department of Health and Human Services (DHHS) and local LME/MCOs will hold a series of listening sessions on the Innovations Waiver and other issues related to intellectual and developmental disabilities (IDD) during the next few months. Staff from the state and local LME/MCOs will also be there to listen to needs, concerns, and thoughts around system reform, issues with health care, services, employment, housing, crisis, or other topics facing individuals, families and others who care about individuals with autism and other IDD.

Staff will also highlight some of the upcoming changes to the Innovations Waiver, set to take place this spring. To read a previous ASNC blog post about the upcoming waiver changes, click here. An overview of the Innovations waiver and updates are found on the Innovations landing page.

 

IDD Innovations Listening Sessions

February 2, 5:30-8 p.m.

Western Carolina University Biltmore Campus

28 Schenck Parkway, Room 346

Asheville, NC 28803

 

February 3, 5:30-8 p.m.

Partners Behavioral Healthcare

1985 Tate Blvd., SE

Hickory, NC 28602

 

February 4, 5:30-8 p.m.

Cardinal Innovations

4855 Milestone Ave.

Kannapolis, NC 28081

 

February 16, 5:30-8 p.m.

Beaufort County Ag Center

155-A Airport Road

Washington, NC 27889

 

February 17, 5:30-8 p.m.

Eastpointe

514 E. Main St.

Beulaville, NC28518

 

February 18, 5:30-8 p.m.

Trillium Health Resources

3809 Shipyard Blvd.

Wilmington, NC 28403

 

March 1, 5:30-8 p.m.

CenterPoint Human Services

4035 University Parkway

Winston Salem, NC 27106

 

March 2, 5:30-8 p.m.

FirstHealth Conference Center

Monroe Auditorium

9305 NC Hwy 211

Pinehurst, NC 28374

 

March 3, 5:30-8 p.m.

Creedmoor Baptist Church

6001 Creedmoor Road

Raleigh, NC 27612

The Invisible Disability: Another Facet of Autism

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This article was contributed by Bobbi Wells, Autism Resource Specialist in the Eastern region and mom to a son with autism.

 

Haven’t you heard the old saying, “Never judge a book by its cover?”

Well, I am here to add to its meaning from an autism perspective.

As a parent with a son who has high-functioning autism, not only do I struggle with the challenges that autism brings into our daily life, but – hold onto your seat – at times, I also struggle with trying to convince people that my son, does indeed, have autism. And those behaviors you are seeing, well, they are manifested from his autism.

“He looks like a typical kid. He reads above level. He’s been on the honor roll since third grade. He played the piano and composed his own music at 5 years old. He memorized the US map and capitals in kindergarten. So why is he fidgeting? He was playing with stuff in his desk, so we punished him by turning his desk around. Why isn’t he listening? He needs to listen and follow along or he will fall behind. Why doesn’t he answer me? He is ignoring me and being disrespectful. Why does he say rude things? He does that on purpose! He is perfectly capable of being respectful. Why is he whistling? He does that to irritate me! He does that to get attention. He did that intentionally. He knows better. He is perfectly capable. …”

Maybe I should have titled this blog “Misunderstood!”

I am here to tell you he’s not fidgeting or not listening “on purpose.” He’s not intentionally being “rude.” He is not trying to irritate you with his “xyz” behavior. And he is not doing anything on purpose to make your life difficult.

In fact, it is his life that is difficult. He is doing his very best to hold it together all day. He is doing his very best to navigate in what he perceives as a chaotic world, full of social rules he doesn’t quite understand or know why it’s such a big deal to follow.

Even more astonishing is that the behavior you are seeing is actually a form of communication. It might not be the most appropriate form of communication, but it IS communication of what is going on in “his” world.

It’s unfortunate that people often judge others by what they see and conclude that a person can or cannot do something because of the way they look or their IQ.

International disability expert Joni Eareckson Tada explained it well when she told someone living with an invisible disability, “People have such high expectations of folks like you [with invisible disabilities], like, ‘come on, get your act together,’ but they have such low expectations of folks like me in wheelchairs, as though it’s expected that we can’t do much.”

Ask any of my colleagues who are parents to children with “visible” autism, how equally frustrating it is when their children are judged by their appearance of not being able, when they are perfectly capable. It isn’t any easier when you can “see” the weakness/disability. The obstacles are all still there. It comes down to a case of what I call “to see is not to believe and to believe is not to see.”

Let me explain: Seeing the disability/weakness and not believing in the abilities of that person versus believing that person is perfectly able, and not seeing his disability/weakness in preventing him to do so.

As I mentioned earlier, I am here to talk about the latter. Those who appear able, but are not, can often confuse and disappoint those who have placed those high expectations and preconceived ideas on them. “Well, he looks or appears perfectly capable, what’s the problem?”

Glad you asked! You see, the problem lies not with the person with autism, but with the person who has failed to accept this person with their strengths and their weaknesses. The problem lies with those around him relying on their own preconceived ideas and expectations.

“He is able to do it in math class, why can’t he do it in science class?”

What you and I take for granted in applying our skills everywhere we go and in various settings is often a challenge for those with autism who have a difficult time using one skill in this environment and then using it or applying it somewhere else. This falsely leads others to believe they are “perfectly capable” of a skill in science class because they did it in math class, or of observing others’ personal space on the playground because they do it in the classroom.

The bottom line is that everyone with a disability is different, with varying challenges and needs, as well as abilities and strengths. Thus, we all should learn to be understanding and open-minded as each individual presents themselves to us in that particular environment, instead of automatically judging with our own preconceived ideas of what they can and cannot do.

Plain and simple: Don’t judge a person with autism by their outward appearance or by their strengths and weaknesses. We must listen with our ears instead of judging with our eyes.

Bobbi Wells can be reached at 252-722-2058 or bwells@autismsociety-nc.org.

Tips for a joyful, peaceful holiday season

Family-Dinner

In the movies, this time of year is full of joy. Smiling families gather around tables filled with delicious dishes that everyone loves, merry music is always playing, and gifts are met with exclamations of “just what I wanted!”

In real life, the holiday season can be challenging and stressful for any of us, but especially for individuals with autism. Many of them do not enjoy caroling, holiday parties, special treats, shopping, decorations, hectic schedules, or visiting friends and relatives.

Making a few adjustments can help everyone enjoy the holiday season more, so we thought we’d share a few ideas.

Schedule and plan ahead

  • Keep routines as typical as possible.
  • Display a calendar that includes activities, parties, and travel details. Be sure to note the dates and times of when you will leave and when you will return.
  • Use a daily visual schedule so that your child is aware of what will be happening during the day. This can reduce anxiety.
  • Consider using a timer (or tangible number of objects) to indicate the end of an event.
  • Write a social story to share the details of an upcoming event.

Adjust your expectations

  • Consider which traditions might not work for your child – visiting Santa, attending parades or concerts, decorating every room of your home – and then avoid them if you can.
  • Remember sensory issues that might adversely affect your child’s experience of sights, sounds, smells, and touch. Try to make accommodations, such as ear plugs, headphones, or a distracting toy.
  • Dressy clothes might feel stiff, uncomfortable, or even painful for our loved ones with autism. Test these in advance of a big occasion or avoid altogether.
  • Allow your child to retreat from activities if necessary. Designate a “quiet space” in advance. If you are hosting at home, let him retire to his room. If visiting friends or relatives, create a private space designated especially for him.
  • If your child generally sits at the table for five minutes to eat dinner, it is probably unrealistic to expect the child to sit for 10-60 minutes at the holiday table for a big dinner.
  • Your loved one with autism may be a picky eater and may not appreciate “special” holiday foods. Have favorite foods on hand and allow choices.
  • If your child generally avoids hugging people, it is not realistic to expect the child to receive hugs willingly from family members, especially unfamiliar relatives.
  • Our children might not be able to express gratitude for gifts or thoughtful gestures the way others might expect. Explaining in advance to others can avoid hurt feelings or confrontations.

Travel tips

  • If visiting a new place or people, share photos of these places and people with your loved one prior to the event.
  • Explain to relatives and friends what to expect from your loved one with autism. Check out this letter for ideas.
  • Help others be realistic by sharing your suggestions for what they can do to make the visit easier. For example: put away breakable objects, keep lights and music on a low setting, and put foods that the child can’t eat out of sight.
  • Share with family members the special interests of your child prior to your visit.
  • If you are flying, use a social story or take a tour of the airport so your loved one knows what to expect. Many airports have special programs that allow this; contact your airport’s customer service department. The TSA also provides information and assistance at 1-855-787-2227 or www.tsa.gov/travel/passenger-support.
  • Put everything your child might need in one carry-on bag. Include a change of clothes, calming items, favorite toys, a no-mess activity, and your child’s favorite music. Sunglasses can block lights that are too bright, and noise-canceling headphones can silence chaotic environments such as airports.
  • If you are traveling by car, and your child escapes from the seat easily, consider getting covers for the seatbelt buckles. Remember to check the child locks on the doors.
  • Use something visual to show how many hours you have traveled and how many are left. A timer can help your loved one count down the time until the next stop.
  • For more tips, check out this Travel Resource Guide.

General tips

  • Plan some sensory or calming activities during each day.
  • Have a “bag of tricks” ready at all times. For ideas, check out this previous blog post on creating an “autism survival kit.”

Above all, remember to give yourself and your child room to enjoy this time. Your holiday may not look like everyone else’s, but it can still be filled with joy and peace.

A Challenge for Change That Begins With YOU!

tizzard kids littleThis article was contributed by Kim Tizzard, Associate Resource Specialist Director/Education Coordinator and mom to a son with autism.

When my son was very young, his challenges, in all settings, seemed insurmountable. In particular, the thought of taking him out to church, school, a grocery store, or really anywhere that involved the public sector made me break out in a cold sweat. Not to mention the fact that my daughter’s car seat was next to his, and his tantrums were not pleasant. But we did what we had to do. I will admit that oftentimes, I felt like Eeyore and had no intention of finding my tail. In my state of mind, I imagined all the looks and stares were of disdain. I imagined people thinking I was a bad mother who had no control over her child. I did my best to ignore the looks and stares until one horrible grocery outing when an older gentleman paused, smiled, and asked if he could help. You see, his grandson had autism. His kindness was overwhelming. Later that day, a thought came to mind: “Could it be that some of the other looks and stares were not of contempt but of compassion?”

Tizzard kids grown upSomething else amazing started to take place in my perception. It started with my daughter’s little 3-year-old voice, “Oh Mommy, Trevor just needs me to hold his hand. See.” I looked in the rearview mirror, and sure enough, his hand was in hers, and she was gently rubbing it. (This is still one of his favorite things.) After a few tears of joy slipped out, another thought took seed. My daughter was developing an empathy and wisdom beyond her handful of years. In that moment, I stopped worrying about the possible negative impact that having a brother with unique challenges might have on her and embraced the wonderful positive impact instead. Trevor is now 19 and his sister is 21. She is his champion, advocate, and friend! Our story is not just our own! It is shared by many of my friends and families on a similar journey.

But this blog is not about that. This is a challenge to you, reader – whether you are a parent, family member, co-worker, or professional – from a seasoned mom. This is also a note of encouragement to those who think you cannot make a difference. YOU can! Think of the effect a small pebble can make when thrown into a large body of water. The ripples far exceed the point of entry. (I know this from watching my son throw countless rocks and sticks – and other objects I shall not name – over the years into ANY form of water, including toilets.) The grandpa who took the time to speak to me that day in the grocery store sure made a difference to me, and his kindness has affected how I interact with others.

Challenge One: Take time to thank

Recently, I received an amazing email. It was from a young lady who was my son’s shadow for Special Olympics when he was in sixth grade, seven years ago. She had found a thank-you card that Trevor and I made in appreciation for her willingness to volunteer and help him have a good time. The email went on to say how the experience had affected her in ways she could not have imagined at the time. She is our current Ms. North Carolina.

Challenge Two: Take time to ask

So many times, our kids and adults with ASD are turned away and denied access for no reason from clubs, venues, and even faith-based communities. I wish I could say that this is not common, but the Autism Resource Specialists at ASNC hear this from families whom they serve all too often. Many years ago, some folks at my church approached my husband and me because they noticed we were going to church separately. We were playing tag team so that one of us could stay home with our son. They asked us what they could do to help. What started off as baby-sitting developed into a special-needs ministry over the next 10 years.

This is a community challenge as well! Businesses, clubs, organizations, philanthropic ventures and so many more are looking for ways to help in their communities. That help could be as simple as providing transportation to appointments, organizing supper clubs, helping self-advocates find jobs, or creating sensory-friendly movie experiences. The list of possibilities goes on. It can even be as simple as asking a caregiver whether they need a hand when they seem overwhelmed. A smile of encouragement can mean the world.

Challenge Three: Take time to get involved

When he was just a little guy of 4, Trevor started to do some inclusion both at school and at church along with other kids with similar challenges. I have to confess that I heard the grumblings of some parents of the “neuro-typical” kids. Things like, “What if they have behaviors, will they hurt my child?” “Will my child copy their behavior?” (Trevor was a hand flapper and toe walker.) And my all-time favorite: “Is this really the most appropriate place for them?” The kids and students, on the other hand, were elated and excited to have them come into the class. WOW! They would argue over who got to help them and even had to make a “friend helper chart” to take turns.

A WHOLE NEW CULTURE and generation had the opportunity to take hold. Within a couple of months, teachers, parents, and administrators were talking about the amazing impact the inclusion was having on them all. Specifically at church (a controlled group, for my data-driven friends), the kids grew together as the years passed. These children went on to REQUEST to work with the kids in the self-contained class as volunteers and peer buddies in their elementary, middle, and high schools. Some have chosen fields such as special education, speech therapy, and child-life specialist. This has truly changed my perspective on how far-reaching inclusion really can be.

Again, this “beautiful phenomenon” is not limited to my story. It is the experience of many. I spent some time asking professionals of all types what got them into the field of autism. How they came face to face with someone on the spectrum (of all functioning levels) varied. Some volunteered at events because their parents made them or because they thought it sounded like fun and they got out of class. Some had a relative or neighbor with ASD and they liked spending time with them. However it happened, they all had one thing in common: it was akin to love at first sight. They were hooked and knew that they wanted to work with, serve, and enhance the lives of this population.

In closing, each of us can truly make a difference in creating change to the perception of ASD, whether it be in ourselves or in others. Never think that what you do is too small. Every bit has impact beyond what we can see.

There are many caregivers who can barely see beyond the next day, and we need to stand in the gap for them. It really is about our choice, our choice to see the silver lining, even if it seems dim at times.

So take the challenge, and make a difference!

Kim Tizzard can be reached at ktizzard@autismsociety-nc.org or 919-865-2269.

Clary Lamberton Named 2015 Winner of Roman Direct Service Award

Clary Lamberton and the men of Marlowe

Clary Lamberton and the men of Marlowe

The Autism Society of North Carolina has named Clary Lamberton of Asheville as the 2015 winner of the John and Claudia Roman Direct Service Award. The annual award honors a direct service employee of the Autism Society of North Carolina who has demonstrated outstanding dedication to individuals with autism and their families. Lamberton is a residential instructor in ASNC’s supported living home, Marlowe Place. She has worked for ASNC for more than 5 years.

“The families who nominated Clary said she not only found very personal ways and meaningful ways to connect to the individuals she serves, but was very conscientious and intentional about facilitating their connections with their community and strengthening their bonds with their families,” said Kari Johnston, ASNC Director of Services. “The importance of ensuring that individuals who are no longer living with their families are given opportunities to maintain and enhance those relationships as adults cannot be emphasized enough.”

In their nomination, Katie and Lewis Wills of Asheville wrote that Lamberton calls or emails them often to share stories of their son’s life. “Jesse is nonverbal and unable to tell us about his daily life,” they said. “Recently, she taught our son how to make an apple tart, bringing a smile to his face; she took photos to share with us so that we could enjoy the experience, too.”

The other families agreed with the Willses, calling the communications about their sons heartwarming, important, and comforting. They said Lamberton also goes above and beyond her duties in other ways, such as taking the residents of Marlowe for special outings in the community, including the WNC Run/Walk for Autism.

“She is relentless in her genuine, caring commitment to providing a truly wonderful home for the men of Marlowe where they are respected and given the tools to be as independent as they can be,” wrote the Willses.

Christine Reagan wrote that Lamberton “exudes calmness, even when there is chaos in my son’s life. Her calm approach has been so valuable in helping my son self-regulate.”

“In addition, Clary’s goal has always been for my son to have a voice (even though he is minimally verbal). She encourages him to make choices and to feel accomplishment,” Reagan said.

Lamberton received a cash award of $1,000. The John and Claudia Roman Direct Service Award was endowed by Lori and Gregg Ireland to honor Christine Roman, the direct service professional who worked with their son, Vinnie. It was named for her parents, John and Claudia Roman.

Past winners of the John and Claudia Roman Direct Service Award:

2007 – Felicia McLean, Fayetteville

2008 – Samantha Erway, Asheville

2009 – Amanda Freeland, Fayetteville

2010 – Emily Bennett, Asheville

2011 – Lori Sweeney, Asheville

2012 – Tanya Ahner-Mejia, Greensboro

2013 – Alan Cohen, Raleigh

2014 – Melissa Mulcahey, Asheville

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