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10 Tips for Navigating Family Events

Big gatherings might have slowed down for families during the pandemic. However, there are many that still get together for special occasions, such as birthdays, baby showers, bridal showers, Father’s Day, and Mother’s Day. Bigger holiday events like Thanksgiving, Hanukkah and Christmas are approaching quickly. While all these occasions are fun to look forward to, those with Autism Spectrum Disorder and their families can find them quite stressful. There are things your family can do to make these events go a little more smoothly, and less stressful!

Be aware of common stressors for individuals with ASD:

  • Sensory overload: new smells, new foods, bright lights, loud music, a lot of talking and singing
  • Fear of new places
  • Unfamiliar people
  • Unstructured time
  • Unplanned changes to routines
  • Transitioning from person to person or place to place

10 Tips on Navigating Family Events:

Talk to your family members before the event: 

Make your family aware of the things that may serve as a trigger for your child. That way all event participants can best  avoid triggering activities.

Talk to your child with ASD:

If your child understands verbal language and can communicate with you, talk to them weeks before and up until the day of the event. Tell them who they will see, what activities they can expect, and what food will be served. Example: “This month is Christmas, and we are going to Aunt Jackie’s house on that day. You will see your cousins, open gifts and eat a nicely cooked lasagna for dinner.”

Use social stories: 

Social stories about the event are great for children who need visuals to understand what is going to happen. The story can include what to expect on the day of the event, how the child is expected to behave and what they can expect from others in this social situation.

Use a visual or written schedule: 

The steps of the day can be shown through pictures or written out in a list. Example: First get in the car to drive to Grandma’s house next get out of the car and go into Grandma’s house, then play with your siblings and cousins.

Teach coping skills: 

Before the event, you can teach your child how to calm down if they feel overwhelmed. This might include going to a quiet space, taking deep breaths, closing their eyes, and counting to ten. If you notice your child becoming anxious or stressed, suggest that they use their coping skills and accompany them to another room to decompress, if needed.

Bring your child’s favorite item: 

A preferred item can help your child transition from home to an unfamiliar place. Your child’s favorite toy or their tablet/iPad can assist in the car ride to the designated location. Preferred items are also helpful when there are periods of waiting or downtime, such as before dinner is ready or time to open gifts.

Familiarize your child with the host’s house: 

Ask the host if you and your child may visit before the event. Familiarity can help your child to be comfortable in someone else’s home. If you are unable to visit before the event, ask the host to send pictures of different rooms in their home. 

Bring your child’s favorite food: 

Picky eaters may not eat what is being served.  Bring food from home for your child.

Provide verbal specific praise: 

Reassure your child that they are doing a great job! Tell them you like the way they are playing with the other children; how they are sitting nicely at the dinner table; and congratulate them for waiting to open their gift. Praise them for all they accomplish during this event!

Reward your child: 

Reward your child for displaying appropriate behavior throughout the day! A trip for ice cream is well-deserved after making it through an event that may have caused them anxiety.


Jennifer Roden, LBA-BCBA, is a Clinical Supervisor at Family of Kidz.

Resources

Autism Diagnosis: What’s Next?

With the prevalence of autism spectrum disorder (ASD) on the rise, more and more families are faced with what to do next. A new autism diagnosis can be life changing and every family handles the challenge differently. Just like every child with autism, a family’s journey is also unique. Here are some things to think about after the initial ASD diagnosis:

Take a few days to digest the information. Take deep breaths and go for a calming walk. You need time to plan how you will proceed.

Stay positive. Research has proven that Applied Behavior Analysis (ABA), in combination with other educational behavioral modifications, makes a big difference. Your loved one can make great strides with the right interventions.

Build your support system. Find people you trust and lean on them during this time. Invite friends and family to come with you to meetings. Let them help you conduct research and find resources for next steps. You will be surprised at the network of resources you already have at your fingertips.

Make time for your child and family.  It is important for your wellbeing. It is helpful to include siblings  in the diagnosis  process, as they will be affected.  Take some time to explain what is happening and how your family will proceed.  

Find reputable resources. Within your community, there are local and state organizations, autism associations and resources that are helpful. Be sure they are accredited and reliable.

Set goals. Start small, with weekly tasks you need to complete, and long-term goals for a successful future.

Maintain a record of all evaluations, reports, and documents related to your child’s diagnosis. Use a binder for hard copy documents,  electronic folder or both!

Here are some resources to help you  get started.  Feel free to contact  us for further guidance or information:

The First 100 Days: Autism Speaks https://www.autismspeaks.org/tool-kit/100-day-kit-young-children

Find a Provider: BACB 

https://www.bacb.com/services/o.php?page=100155 https://www.appliedbehavioranalysisprograms.com/autism-books-for-siblings/

Books for Siblings: https://www.appliedbehavioranalysisprograms.com/autism-books-for-siblings/

Kristen Schreck-Manny is the Director of Insurance Services at Family of Kidz.

Resources

Getting Ready for Family Fun

Even during these unprecedented times, families affected by autism can participate in fun activities that are enriching and refreshing.

To get the most enjoyment from families activities, be proactive and have a plan.

Here are some helpful tips to get you started:

Prepare Your Child Ahead of Time

Use words and pictures to help your child understand and anticipate what will occur during  family outings and activities.  Talk about: where you will go; what you will do; and who you will see. 

Mark the date of the activity on the calendar and do a daily countdown to the actual day.

Find Places of Peace:

Determine a quiet place at your destination that your child can go to when feeling overwhelmed. Pack and bring preferred items that will help your child feel comfortable and safe (ex: headphones, tablet, favorite toy/book).  If your child needs to find a place of peace and sensory replenishment,  talk about how it helped them to feel better.

Collect Positive Memories:

While engaged in the family activity,  remind your child how well they are doing and reinforce their positive behavior. Take and share pictures of the family activity afterwards.  Talk about the experience, including details of where you went, what you did and who you saw. 

Always  remember that each experience is another step toward positive growth and leads to more success in future activities!

Marlena Pikulinska, LBA-BCBA,  is a Clinical Supervisor at Beyond Boundaries.

Resources

Maximizing Visual Aids at Home

An ABA therapist’s best friends are visual aids. However, it’s not so much the visual aide that is important but rather its location within your home. As a parent, you may wonder why visual aids (schedules, reminders for brushing teeth and to turn off the light or to flush the toilet) don’t seem to help your child at all. You still have to use constant verbal reminders until you are blue in the face. You probably find yourself thinking “I have visual aids all over the house, but they aren’t working!” This could be a simple issue of finding the right placement.

One of my favorite professors in college clarified the issue of placement issues with visual aids by using a universally understood sign in public bathrooms to “wash your hands”. Have you ever noticed that all of the “wash your hands” signs in public restrooms are right above the sink? You might be thinking to yourself: “What is the issue with that? You wash your hands at a sink, so of course the sign would be located at the sink!” The problem is that the sink itself serves as a visual reminder to wash our hands. The sign is not necessary. The problem arises when people use the restroom and walk out the door, avoiding the sink area all together. In this case, the person does not go near the sink area and therefore, they will not see the sign reminding them to wash their hands!

A great way to remedy this situation is by changing the location of the sign. Placing the sign at eye level will allow each restroom visitor to have clear view of the reminder. Try placing the reminder sign in the bathroom stall or on the back of the bathroom door. Make the visual reminder unavoidable.

Now apply this idea within your own household. Are there any visual aids that might benefit your child more if they are simply placed in a different location? For example, place the “turn off the light” reminder on the back of the bathroom door at eye level, so that it may be seen as your child opens the door to leave, rather than on the light switch, which they rarely glance at. Place a visual aide, such as “backpack” written on a post-it, on the back of the front door, near the door handle. As a result, there is a better chance that your child will see the reminder and remember to grab their backpack when leaving for the bus.

Visual aides are a Behavior Therapist’s best friend. Make visual aids a part of your strategy to help your child develop independence before your very eyes! Remember: location, location, location!

Sarah Barry is a BCBA/LBA Supervisor at Family of Kidz.

Resources

Helping Children with ASD Transition Back to In-School Instruction

As a parent, when you are supporting a child diagnosed with autism spectrum disorder (ASD), you begin to think of the world in terms of the challenges they may face while navigating their daily routines. You also think of how well they can manage these obstacles on a day to day basis with all the support that you and your child’s team have put in place. When we imagine a typical school day, there are so many disruptions that can occur: getting on the school bus with new staff and new aides;  disruptions on the school bus (children being loud, traffic, bussing issues);  arriving to class with the hustle and bustle; teacher absences;  schedule changes; changes in related services and providers; and  loudspeaker announcements. All of this can happen before 9:00 am and helps you realize  how successful your child has become in handling his or her  day. 

In response to the COVID-19 pandemic, schools in New York State were closed for several months. Changes to the daily schedule caused significant disruption to children with ASD.  Impacted families expressed concerns about increased behavioral problems, regression of skills gained, and an increase in anxiety while a new “normal” was being established. Many families worked tirelessly to support their children and provide balance as schools developed their reopening plans.   

Just as a new routine was being established at home, many schools reopened, creating new obstacles. In order to provide and maintain a safe environment, school districts have developed  multiple variations for the new school day, including hybrid models that change daily weekly.  Whether students are attending school in person or remotely,  the classroom environment has been modified.  The result may include fewer opportunities to engage in social interactions, limited transitions and movement breaks and required mask wearing throughout the day. With all these changes, how do we help children with ASD transition back to school in person during the continued COVID-19 outbreak?  

Wearing Masks:  

Wearing a mask is a new skill for many of us. We will approach this as any new skill and teach your child to be successful in this area.  Model wearing a mask whenever possible. This includes wearing a mask within the home to help desensitize your child to engaging with others who wear masks and increase their comfortability with masks. If your child is unable to tolerate wearing a mask, all personnel that they interact with at school will be wearing a mask.  Social stories, choices in mask color and/or design, and a reward system for tolerating a mask are all strategies that can be tried. As they begin to get more comfortable, set a timer for one minute, and encourage them to wear their mask with you. Practice this multiple times a day. As the timer rings, remove the mask. The key is to remove the mask before it becomes aversive or before they remove it themselves. As they become more comfortable tolerating the minute of wearing a mask, gradually increase the duration of wearing a mask and increase the rewards to match the effort of tolerating the mask.  Aside from school, wearing a mask is essential in order to participate in activities outside of the home.   

Use Visual Supports: 

Depending on your child’s ability to understand schedules, create a daily or weekly visual schedule (hybrid days, school days, remote learning days, etc.) based on the school schedule. On remote learning days, ensure there is a schedule in place that offers structure and consistency for your child. On school days, a visual of your child wearing a mask should also be placed on the calendar so that they know the expectations and can better prepare for it.  

Increase Movement: 

Due to restrictions and guidelines at school, your child may not receive as many movement activities/movement breaks throughout the day. Engaging in movement activities before school may help with the transition to school, where there may be prolonged times of sitting or remaining stationary at a desk. Engaging in movement activities after school is equally important after sitting for most of the day.  Movement breaks can be short in duration but completed multiple times per day. This can be in the form of a walk around the block while waiting for the morning school bus;  jumping jacks in the driveway while waiting for the bus;  a dance break listening to 2-3 favorite songs of choice; an afternoon bike ride; or watching videos of kid friendly Zumba or yoga routines. It is important to note that videos can be both a physical and mental activity if your child is still working on imitation skills.  If your child appears to get frustrated by videos, find alternatives for movement. 

Social Stories: 

Reach out to your child’s teacher and ask for visual supports to help your child navigate the day with ease. Ask for pictures of the child’s working area/desk, area of where snack and lunch will be eaten, areas of recess, the teacher’s desk, the bathroom area, and any other area that the child may encounter while at school. This will help in the development of a social story with visual aids of what your child’s day to day will look like. With actual pictures of their setting, your child may become more familiar and comfortable with their environment. If possible, ask the teacher when masks are required to be worn and include a picture of a mask icon in these areas.  

Debriefing:  

Implement a debriefing and snack time when your child returns home from school.  Utilize your child’s communication modality (Picture Exchange Communication System (PECS), Vocal Speech, Augmentative and Alternative Communication (AAC)) and ask about the day.  Prepare visuals to help them identify emotions, activity icons, and items in the backpack that they would like to show you. Make this period fun and stress-free. You know your child best.  If debriefing right after school is too much, wait until later. Debriefing should be a regular part of the home schedule.  

Reward System: 

Reward  successful days at school to encourage the new routine. Rewards can be as simple as picking a snack from a “special bin” or engaging in a favorite game.  When using a reward for transition back to school, that specific reward should not be used at any other time during the day.  This will strengthen the correlation between their “most favorite item” to “success at school” and maintain motivation. Always rely on your child’s feedback and choices regarding which reward items to use. This can change daily, weekly, or monthly depending on your child’s needs.  

Rhonda Stewart, LBA-BCBA, is Lead Clinical Supervisor of Insurance Services at Family of Kidz.

News

Family of Kidz Proudly Sponsors Autism Speaks Walk 2020

Beyond Boundaries is a proud sponsor of the Autism Speaks Walk 2020, scheduled to take place virtually on Sunday, October 11, 2020.  The Autism Speaks Walk has raised millions of dollars to help fund autism-related research. Beyond Boundaries has raised tens of thousands of dollars over the last several years, for this great cause. 

Chris Tillotson, Beyond Boundaries’ CEO,  is excited to support this event and the efforts of all participants.  

“I’m so proud that the Beyond Boundaries team continues to support the important work that Autism Speaks does to help encourage innovative research and solutions for individuals with autism”.

Beyond Boundaries specializes in behavior analysis and a wide variety of special education and related services for individuals with autism and other developmental disabilities.  With locations across Long Island, Beyond Boundaries accepts private health insurance for autism treatment.

Resources

Insurance and ABA Services: What You Need to Know

If you are raising a child with autism, you understand how useful Applied Behavior Analysis (ABA) can be.  Research has established that early intensive behavior therapy, based on the principles of ABA, is medically necessary for individuals who are diagnosed with autism spectrum disorder (ASD).

In November 2011, Governor Cuomo signed into law new requirements for health insurance companies to provide coverage for the diagnosis and treatment of individuals with autism. This law went into effect in November 2012 and opened the door for families to obtain services that had previously been deemed medically unnecessary.

What You Need to Know About Autism Insurance Coverage in NYS:

What is autism insurance coverage?

NYS regulated health insurance plans now cover treatment of ASD, including behavioral health treatments, psychiatric care, psychological care, medical care, therapeutic care and specified pharmacy care.

Who can obtain these services?

To be eligible for coverage, an individual must be diagnosed with ASD and have a medical need for services.

What is a medical need?

ABA is deemed medically necessary when a physician or licensed professional demonstrates that the symptoms of ASD are present and treatment is needed.

How do I access services?

Services must be prescribed by a medical doctor or a licensed psychologist and they must be able to provide proof of an Autism diagnosis ( F84.0). This should include a standardized test for adaptive skills (Vineland),  a Full-Scale Intelligence Quotient (IQ) (WISC-V) and a diagnostic screening tool (ADOS).

What are the costs associated with ABA through insurance?

There may be  a co-payment  associated with treatment,  as well as family and individual deductibles that need to be met.

What is the process of accessing ABA through insurance?

Beyond Boundaries’ Insurance Intake Coordinators are here to assist you in obtaining the highest quality ABA for your loved one with autism.  We will help guide you through a multi-step process, which includes:

  • ABA Benefits Verification

We will call your insurance company and verify that your plan includes coverage for ABA therapy and get information regarding your estimated out-of-pocket costs.

  • Assessment Authorization

We will request authorization from your insurance company for an initial ABA therapy assessment.

  • Initial Assessment

We will schedule an initial assessment appointment with the BCBA who will be leading your child’s therapy team. The assessment may take up to 8 hours – which will be conducted in multiple visits.

  • Therapy Authorization

The results of the assessment and our treatment plan will be submitted to your insurance company. It can take up to 15 business days for the insurance company to review the information and make a determination on services.

We will contact you with the approval or denial as soon as we hear back from your insurance company.

  • Therapy Begins!

Contact: Kristen Schreck-Many at kristen.schreck@beyondboundaries.com

News

Parent Notice: PLEASE READ!

At Beyond Boundaries Autism and Therapeutic Services, we hold the care of the children who receive services in our centers or in the home and community, at the highest importance at all times. As New York State is experiencing a Coronavirus outbreak, we have continued to focus on the health and welfare of our children and their families.

We have put in place additional protocols aimed at preventing the transmission of the virus which includes added cleaning within our facilities and staff trainings. We are continuing to monitor the New York State Department of Health and the county websites for updates to any protocol changes; and remain in close contact with all the districts for which we provide services.

Below is a copy of the parent notice posted at our centers, as well as, shared with our providers who deliver services within the schools and community. We are asking for your assistance in partnering to help prevent the spread of the Coronavirus. As always, our staff remains available to answer any questions at (516) 806-6969. We thank you in advance for your cooperation.

Beyond Boundaries Notice- Spanish

Nosotros en Beyond Boundaries Autismo y Servicios Terapéuticos, la salud de los niños que reciben servicios en nuestros centros o en la casa y comunidad es muy importante para nosotros. Como el estado de Nueva York está experimentando la epidemia de Coronavirus, nosotros continuamos a enfocar la salud y bienestar de los niños y su familia.

Nosotros pusimos protocolos para evitar la transmisión del virus, que incluyen lavando todos los centros y entrenando todos los personales que trabajan para nosotros. Estamos supervisando las noticias que viene del Departamento de Salud de Nueva York para todos los nuevo protocolos. También estamos comunicando con los distritos de cualquier noticias y cerradas que ellos anuncian.

Abajo hay una copia del aviso para los padres que pusimos en nuestros centros y También con los proveedores que trabajan en las escuelas y la comunidad. Estamos pidiendo que usted ayudan a nosotros para evitar la trasmisión del virus. Si usted tienen preguntas, puede llamar 516-806-6969. Gracias para su cooperación.

Resources

Nine Myths About ABA

Applied Behavior Analysis can be a subject of disagreement among the community of people with autism and their families. Certainly, anyone who found ABA unhelpful or detrimental should be listened to and have their concerns taken seriously; however, many concerns about ABA are not relevant to how ABA is currently practiced, but rather to how it was used in the past.

ABA has come a long way since its inception and has grown and developed as the research has progressed. Because approaches have changed, let’s look at some common misconceptions about ABA and try to clear them up.

ABA is for young children only.

It is certainly true that childhood is an ideal learning time as the developing brain can more quickly create new neural pathways, and that is why children often learn new languages faster than adults, but it’s by no means true that it’s only for children. ABA techniques have been successfully used by adults and older children.

ABA is synonymous with Discrete Trial Instruction

Discrete Trial Instruction is a teaching strategy that is used in ABA. It usually involves an instructor asking questions and rewarding correct answers (e.g., pointing at the correct card) with a positive reinforcer (i.e., a small item that increases behavior). While this is all done in keeping with ABA concepts, it’s not the whole of ABA, which encompasses more than Discrete Trial Instruction such as naturalistic teaching strategies, Pivotal Response Training, or Applied Verbal Behavior approach, among others

ABA is only for very impaired individuals with autism

ABA is used to help a wide variety of people with autism. Because it is individualized to incorporate areas of strength and areas of weakness specific to each child, it can help individuals who fall anywhere on the autism spectrum.

ABA is only utilized for the short term

The treatment an individual receives in ABA is centered around their goals and needs. Just like each person is different the length of time that they will benefit from ABA treatment can greatly vary. ABA therapy may not be needed forever, but the tools and strategies used can last a lifetime.

ABA only teaches actions and responses, but not the reasons behind them.

This misconception comes from the fact that some forms of ABA training teach things like eye contact or rote interactions like asking, “How are you?” and always responding, “I’m fine.” It’s also true that social interactions should be taught within the contexts they’ll be used, but all kinds of learning, even at home, involve a certain amount of rote repetition and memorization, and a proper ABA program will teach the reasons and proper contexts for certain behaviors, not just the actions themselves.

ABA makes children robotic.

The goal of ABA when working with learners with Autism is to give them the social and communication skills to express their personalities, needs, preferences, and enable independence, not to try to turn them into robots with rigid behaviors.

ABA is always delivered in restricted spaces like cubbies.

Most ABA programs do involve some table or cubby work, but there are always other components. A successful program involves play and work at the table, around the house, at school, in the backyard, in group play sessions, and basically, anywhere the child goes. Making sure children enjoy their learning time is essential to a program’s success.

ABA is cold and impersonal.

This is sometimes also stated as “ABA is just dog training for people.” ABA is a methodology for understanding individuals feelings and motivations , and using those insights to help learners make better choices. It’s only to be expected that adults and children working to develop new behaviors would have some points in common with training pets, but the important thing is what’s different. ABA programs work on communication and complex emotions far beyond what animal trainers use.

ABA is not financially accessible.

Many ABA providers (including Beyond Boundaries) accept a wide range of insurance carriers to help families avoid having to pay out-of-pocket. We want to make ABA as accessible for as many families as possible.

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