a guest blog post by Molly Reilly, BCBA

We are living in an extremely unique situation and it is important to acknowledge that you will be times when you give in, you are human. Now is probably not the best time to teach new skills; rather, it is a perfect time to work on strengthening skills that your child has mastered. If possible ask your child’s teacher or therapist for a list of mastered skills for you to work on while at home. As a bonus this will help your child generalize skills to new people and settings.

What kind of skills? Here are some examples:

Functional Communication
This is the ability to communicate an individual’s wants and needs is an essential life skill. While now is not the time to intensely teach new skills, it is always a good idea to encourage your child to communicate their basic wants and needs in whatever manner is most appropriate for them(e.g. verbal speech for verbal children, sign language for preverbal children with strong imitation skills, Pecs for preverbal children with strong visual discrimination skills, etc.). Functional Communication Training (FCT) is a fundamental positive behavior support strategy in which an individual is taught an appropriate communicative behavior to replace an undesirable behavior. For more information on FCT including implementation steps please see Afirm’s FCT module.

Coping Skills
Coping skills are also a fundamental life skill that can be particularly helpful in times of uncertainty and anxiety. Examples of potential coping skills include deep breathing, listening to music, taking a walk, etc. To further promote coping skills consider creating a calm space in the house where anyone can go and take some time to relax may also be helpful. The area could include calming items such as soft blankets, sensory balls, pillows, sensory bottles, stuffed animals etc. UNC has developed a wonderful toolkit that contains a section on promoting calming and coping skills including visual supports and recommended mindfulness apps.

But how?

Use Reinforcement
Uncertainty is hard for everyone – reinforce everything, especially flexibility! Positive praise is particularly important for children that thrive on attention. Be sure to keep their tank full by providing lots of praise throughout the day by aiming to provide five positive statements to every negative statement. Emphasize all of the things your child does right! (e.g. playing cooperatively next to a sibling, trying a vegetable, taking turns on the ipad, asking for help, throwing away garbage, etc.). In addition to providing ample praise using simple and positive language can also be helpful. Rather than saying “I can’t play bingo with you right now” try saying “I can play a game with you later today but now you can play legos”. For children motivated by activities or tangible items try sure to provide them with access to a desired activity/item following instances of desired behavior.

But use them wisely
Try not to allow free access to reinforcers by laying out each of your child’s favorite toys at the beginning of the day in hopes they will entertain themselves so that you can get things done. Rather, present desired items or activities individually and rotate them, this is especially important for highly desired items such as technology. The following strategies may help differentiate academic screen time and leisure screen time:
• Different devices (e.g. laptop for academic tasks and tablet for leisure)
• Different locations (academic screen time in kitchen and leisure screen time in living room)
• Different cases (academic screen time in blue case and leisure screen time in green case)

You have a lot of responsibilities (e.g., plan meals, do laundry, clean, teach, parent, and for some people telecommute) so be sure to schedule in special 1:1 time with each of your kids. Truly make this their time and follow their lead. Try not to direct the activity; rather, notice what your child enjoys and simply join. Even if this means sitting next to them while they play with their tablet that is okay! Make comments and praise if appropriate (whoa! Look at that car!) simply rub their back.

Safety First
To ensure that everyone in your house is safe it may be a good idea to take a careful look around your home and make modifications that reduce the risk of injury. Examples include putting potentially poisonous materials such as keeping medicine and cleaning solutions in areas only accessible by responsible adults, removing wall hangings, and rearranging furniture. In the event that challenging behaviors do occur, removing yourself from the situation (as long as your child is safe) and having a basic safety plan may be a good idea but consult with your child’s BCBA for specific recommendations.

Pick your battles
Identify times that can be problematic (e.g. at the end of the day when everyone is tired) and give yourself permission to not be perfect and allow access to highly preferred items or activities such as screen time. Also avoid giving a direction unless you are willing and able to carry through. If you instruct your child to hang their coat up on after they throw it on the floor, be sure you are willing to (and have enough energy) carry through with the instruction. As I stated above, give yourself permission to not be perfect! Parents of typically developing kids who find themselves trying to homeschool openly acknowledge the extreme difficulty. #homeschool is a trending hashtag on social media and some of the posts are hilarious

INSTEPPS is a company in CA that utilizes NDBIs and has some great resources on their facebook page including:

Authors:Erin Lopes, CRNP, Nathan Call, PhD, Muhammed Wassem, MD and Alycia Halladay, PhD

For many families with autism, especially those with co-occurring medical conditions like seizures, visits to the hospital emergency department (ED) can be frequent.  Some behavioral issues send families to the ER whenever there are no effective crisis management services available.  However, now that hospitals are seeing an extremely high volume of patients with COVID-19, many families do not want to risk exposure.  Families with children with autism and additional complex medical needs may feel isolated from their child’s outpatient healthcare providers at this time.  Being sheltered at home and isolated from their child’s regular health care team may lead families to feel that a visit to the Emergency Department (or Room, ER) is the only solution to seek immediate care.  Here are some practices that have changed since states have imposed shelter in place orders.

First, try to avoid ER visits if possible.  How is this possible?

Many outpatient physicians and nurse practitioners are seeing patients virtually through telemedicine.  Maintaining ongoing services or addressing emerging problems with your doctors is a good way to avoid going to the ER.

First you can do this by preparing for your telehealth appointment.

  1. Call your doctor. Families/caregivers should call their child’s primary care provider and subspecialist’s offices (such as psychiatry, psychology, neurology or gastroenterology) to find out what telemedicine procedures are in place. If telemedicine is available, families should continue with already scheduled outpatient appointments or schedule new appointments if needed using the telemedicine platform.
  2. Your child’s outpatient health care providers should be able to assist you with identifying what technology is needed to initiate a telemedicine appointment. They can also help decipher what technology or Internet bandwidth is needed.  These need to be addressed before the first appointment.    
  3. Depending on your child’s healthcare needs, some families may consider setting up telemedicine technology from home in advance of an outpatient telemedicine appointment.  For example, making sure programs such as FaceTime on iPhones are functioning. Again, call your child’s outpatient providers to learn what technology their office is using for telemedicine appointments. 
  4. Call your child’s healthcare provider’s office to request refills as early as possible to avoid running out of necessary medication. Pharmacies may be operating under increased demand, which can lengthen time to refill routine medications.   

For families with children who have autism and epilepsy 

  1. If your child has an upcoming appointment with neurology, call now to inquire about their telemedicine practice and procedure
  2. If your child is taking maintenance medication(s) for seizures make sure to call in refills as early as possible to avoid running out of medication 
  3. If your child has breakthrough seizures and is prescribed rescue medication for breakthrough seizure, be sure to check the expiration date on the rescue medication.  If the rescue medication has expired or about to expire call in for a refill  
  4. If you have questions about what to do if your child has a breakthrough seizure call your child’s neurologist.  Consider developing a Seizure Response Plan with your child’s neurologist if you don’t already have one.  More information about Seizure Response Plans can be found on the Epilepsy Foundation website: https://www.epilepsy.com/learn/managing-your-epilepsy/seizure-response-plans-101
  5. The Epilepsy Foundation also has a list of specific recommendationson when to consider going to the ED during or after a seizure.

If your doctor feels your child needs to be urgently evaluated in the ER, remember the basics you’ve heard so far about preventing transmission of the virus:

  • Hand washing with soap and water for at least 20 seconds
  • Avoid touching your eyes, nose and mouth
  • Cover mouth and nose when coughing or sneezing with a tissue
  • Avoid hand shake
  • Limit touching
  • Maintain social distance
  • Avoid sharing items 
  • Use face masks if you have to go out in the public

Then when you get there, remember:

  1. This is a difficult time for everyone in the ED. Early preparation will help you, your child and ED staff make the visit as smooth as possible.  Do your best to be patient and calm through the process, as this will help your child stay calm as well.
  2. Explain to the ED staff what approaches for routine care such as vital signs work best to keep your child calm.
  3. Have a current list of your entire child’s medications including the dose and frequency written down on a piece of paper that is ready to bring with you.  Consider keeping this list folded up in your wallet or stored in your cell phone.
  4. Families with children who receive nutrition via tube-feeds should add current tube-feed formulas on their child’s medication list.  
  5.  Once you get to the ED remember that they are likely understaffed and could use your help. Show them how to get the cooperation from your child and offer to assist them with things like administering oxygen or putting on a blood pressure cuff.   
  6. Most hospitals are not allowing visitors during the COVID-19 pandemic.  Call ahead to find out what the procedure is before you get to the ER. It is possible that you may not be able to go with your child while they are being medically evaluated in the ED.  Consider packing a bag with your child’s preferred personal items and/or communication devices such as tablets/portables AND chargers that go with them.  If the ED staff permits you to accompany your child, consider bringing a small bag of personal items for yourself.   
  7. It may be helpful to ask your ED if they have Childlife specialists available. These are professionals who specialize in helping children cope better with being in a hospital. They are often able to provide items to help keep your child distracted or work with the medical team to adapt the environment or protocols to make them more conducive to your child’s particular needs
  8. You may also know your local ED staff and know their procedures. It is a good practice to call to the ED ahead of your arrival to alert staff you and your child are en route and inquire about any new changes to entering the ED and the registration process.
  9. If your child is immunocompromised make sure ED staff are aware.   

A parent of a child with a rare syndrome described her child’s experiences in the ER here.  

Finally, don’t allow fear to prevent you from seeking care if your child has an urgent medical need.  However, regular communication with your child’s outpatient providers and continuing preventative care through use of telemedicine may help decrease the likelihood of an ED visit. 

a guest blog post by Bonnie Offit, MD, Office of Digital Health Clinical Advisor, Children’s Hospital of Philadelphia

Despite this wretched new coronavirus spreading disease and fear, there are few good things happening.  I thought I could share one of those silver linings that those of us in healthcare are experiencing: an explosion of seeing patients on video visits: Telehealth.

As we work out the details of social distancing, hospitals and healthcare providers are scrambling to find innovative ways to care for their patients. Of course, we use email and telephone but it is essential for patients to have periodic in-depth check-ins with physicians and therapists. Technology has reached the point in healthcare, though perhaps a little later than other businesses and institutions, where we can use a secure video-conferencing platform embedded right into our patient portals.  Two of the major barriers to using Telehealth were related to strict HIPAA privacy protection rules and reimbursement (doctors getting paid for these visits by insurance).  In this COVID period both barriers have been lowered allowing pediatric hospital systems like ours to convert many visits from in-person to video (telehealth). In some clinical areas, more than half of our patients are being seen over video. Our hospital just went from small departmental pilots trying about 10 visits/week to doing a total 1000 video visits in one day. We even have up to 5 people in one visit- so a feeding specialist, occupational therapist, neurologist, developmental pediatrician and an interpreter can participate one by one or together in one scheduled visit. This happens to be a remarkably efficient and convenient way to receive care. We are learning so much.

As the parent of a patient, all you need is a smartphone (iPhone or Android) or in some cases a laptop with a camera, Wifi  or cell signal, a provider portal and you are all set.   During these visits, providers might assess development, manage medications, provide counseling, suggest resources and treatment options as well as explore other underlying medical or psycho-social contributors. Can we accomplish that over video? Yes, we can. Is the visit as good as in-person?  It is likely to be at least as thorough, however there are a few parts of the normal in person that cannot be replicated. We can’t easily see the back of the throat, we cannot listen to the heart or lungs and we cannot see eardrums. We cannot do a full neurologic exam. For concerns specific to those parts of the physical exam you will have to be scheduled for a follow-up in person. However, there is an exciting new device called Tytocare that has much potential for use in pediatrics.  This device offers remote examination tools to see eardrums and listen to lungs from home. Few facilities are using this platform to date and it costs the family $300 to purchase. But stay tuned for more on that device.

It is important to realize that you and most doctors and therapists are just beginners on how to complete video visits from home.  Anything new and anything with technology will have the requisite frustrations. There are technology challenges on knowing which app to use, how to download the app, log-ins, activation codes, allowing your phone or iPad to use the speaker, what to click and making sure you have a strong enough signal (Wifi is much preferred so you don’t need to use your data plan). We use the telehealth modules that are part of our electronic health care systems which helps but is not without glitches. Everyone needs an extra dose of patience when it comes to Telehealth, but it is worth the struggle.

So what does this new explosion of telehealth really mean? You and your child can have a full encounter with your provider from the comfort of home. If your child fears the office, then this is especially helpful. You will need to have your child in the video visit for at least some portion of the encounter. You may be asked to have your child try certain developmental tasks on the camera.  But most of us are quite comfortable with using Facetime on the phone and this is no different.

This is a good time to ask your provider if they offer telehealth and ask your insurance company if they pay for it. During this stressful COVID period, most insurance companies have agreed to reimburse for Telehealth. I would recommend that you download your provider’s patient portal tool now, obtain an activation code and be ready. Best of luck with your new technology adventure using Telehealth. And be sure to remember patience when you get locked out after forgetting your password on the 10th try. It’s worth it!

a guest blog post by Jeffrey J. Wood, PhD, UCLA

These are challenging times and daily life is now chalk full of the main ingredients for anxiety and worry. Between frequent grim news updates from around the world and new daily living circumstances that can constantly remind us of the increased danger and threat that we all face, it is a stressful time. It is all the more so for families of children, teens and adults with autism spectrum disorders (ASD). Our research team has spent the last 17 years studying anxiety in people with ASD. Although we don’t have all the answers by any means, we do have some suggestions to share stemming from our and others’ research on this topic that may make coping with the anxiety of the current crisis more manageable. I’ve broken down my thoughts on anxiety and autism during the coronavirus emergency into three parts:  Understanding our anxiety about what is going on, helping parents manage their own anxiety and supporting children in coping with anxiety.

Understanding the function of anxiety and why it is common in people with ASD

Anxiety is a biologically based emotional state common to almost all people that is a fundamental part of our survival/defense instincts, allowing us to ascertain conditions of possible threat and danger and feel motivation to take action to avoid the danger and survive. Although in the world of clinical psychology we often speak about “anxiety” as an unwanted psychological problem, this is a gross simplification. Anxiety is generally an adaptive feeling that helps to keep us safe and serves as an “automatic appraisal” of situations that is much faster and more holistic than our laborious efforts to “think through” a situation. There are many things that are rational to be afraid of and to avoid; the current coronavirus is just one of many examples. Therefore, it is both normal and adaptive for anyone, including parents, to be feeling some anxiety at the moment.

It is well known that ASD is associated with difficulty with regulating emotion, and that of course means that emotions such as anxiety, fear, and frustration can be easily evoked when things get stressful, including when there are changes of almost any kind. Changes from our expectations trigger automatic wariness of “the unknown,” which is a universal and probably neurologically hardwired cue for possible danger. Because people with ASD are generally more susceptible to anxiety and other strong emotions, our current circumstances—as we confront sheltering-in-place and other measures to address the unknowns of the coronavirus epidemic—are inevitably going to give rise to emotional upheaval for family member(s) with ASD.

My stress and anxiety seem to be escalating.  What can I do?

Many parents are currently in a role that is much more challenging than usual and the sources of stress are multifaceted. Between the stresses of becoming a child’s primary teacher and activity planner, to the possible loss of the daily structure of supporting services such as ABA, speech therapy, and childcare, to the fundamental economic unknowns and possible insecurity for many families, remaining calm and resilient is a challenge. In thinking about your own emotional reaction to the current circumstances, you might find it useful to think about the difference between rational anxiety and maladaptive anxiety.

As noted above, most of the time anxiety is based on legitimate concerns about a possible threat that we should take into consideration in planning our course of action. In contrast, the type of anxiety that sometimes requires therapeutic treatment (maladaptive anxiety) tends to be irrational. Irrational anxieties are either extremely unlikely to happen (e.g., a tornado sweeping away your house if you live where we do in Los Angeles), or are viewed as much more damaging/severe than they actually would be (e.g., if we make an embarrassing mistake in front of others, we’d lose all our friends and be subject to permanent ridicule). They can also lead to irrational avoidant behaviors (e.g., failing to eat because of fear of coronavirus contamination).

Coping with irrational anxiety can entail various approaches, but a general strategy is to clearly enumerate the exact nature of the anxiety, including the “worst case scenario” on the back on our minds, and then use logical thinking to challenge the specifics of the worst case scenario and figure out a way to overcome the maladaptive avoidance we are engaged in. For example, in the current era, if we effectively practice social distancing and use caution in food handling and preparation, we can feel confident that risks have been minimized to a reasonable extent, and we can face our fears by re-engaging in needlessly avoided activities (e.g., following from the previous example, returning to eating). However, this clinical strategy should not entail putting ourselves at needless risk in order to “face our fears”. Taking guidance from public health officials is a rational action, even if it causes us some predictable anxiety, and it shouldn’t be confused with maladaptive anxiety.

Beyond anxiety, a significant stressor that some parents may be experiencing in the midst of the current coronavirus situation—even without realizing it—is role and goal confusion. Our identities and sense of self are strongly tied to our medium-to-long term personal goals (e.g., “I want my child to develop more language and social skills”, “I am working towards completing an important project in my job,” “A memorable season is ahead when I coach my daughter’s softball team for the last time this spring”). Many medium-to-long term goals of this sort may feel unachievable at the moment. This can be a blow to our sense of self, reducing motivation and our sense of purpose. Abraham Maslow famously noted that when our basic needs are at stake or are not fully met (e.g., safety), it is difficult to focus on longer term and more abstract goals that may have felt in some ways to be more important or worthy than the basics of ensuring daily survival. We may feel strangely unmotivated. I know that in our family we have more than once slept in and had a harder time getting up and getting going than usual in recent days. Overall, barriers to our longer term goals and resulting challenges to our sense of self can be a stressful psychological experience that we are only vaguely aware of at times like the current crisis.

A helpful thing to do to address this source of our own stress as parents is to recognize which goals of ours have been stymied, consider how much these goals mean to us (e.g., “I’ve been looking forward to this new ABA program for over a year—I thought it would make a huge difference!” “I’ve been so excited to complete this work project and now it is delayed indefinitely!”), and consciously choose to re-orient to currently achievable goals.  These goals may be shorter term in nature or simply adaptive to the present reality. These goals may be more basic in nature, following from Maslow’s hierarchy of needs, or require a role shift—some of us are now our children’s teachers, coaches, and playmates. The new goals and roles of the present are likely more fitting than prioritizing longer-term goals that may need to be put on hold. People who can adaptively reprioritize goals to fit changing circumstances tend to be more resilient and better able to cope.

Here are a few examples. If I was hoping for my child to make greater linguistic and social progress this year than now seems possible (due to a temporary loss of services related to social distancing), recognizing that this is likely only a temporary setback can help. As a researcher, I have not come across any studies that convince me that losing even a year of services is necessarily going to have long-term consequences if they can be resumed once the crisis is behind us. Refocusing on more achievable short-term goals such as making daily life for my family and I manageable may be advisable. I have found with my own three children (all below 12 years old) that having a daily schedule that the kids have helped to plan, and then trying to stick to it, has been really helpful. This gives all of us some of the predictability in daily life that the upheaval related to coronavirus has in some ways taken away. We are also not fans of “screen time” and typically limit our kids’ access to screens carefully. And yet, to achieve the short term goals of a calm and relaxing life that is largely at home, we have relaxed this a bit in a structured way. We are giving our kids some screen breaks in exchange for their good attitudes in digging in on some homeschool work and other worthy educational activities. They are earning “minutes” for a movie each night too by meeting certain behavioral goals. Let’s face it, we have more time at home and using electronics in a limited but motivational way can really make the days more pleasant for everyone. Lastly, even if you are having a slowdown in services for your child, all is not lost in terms of intervention. If you have the time and energy, pick up a book for parents of kids with ASD that shares some tips on ways you can contribute. I am a fan of the books by Robert and Lynn Koegel written for parents describing applications of pivotal response treatment (PRT) that parents can learn. Or get the parents’ guide to the Early Start Denver Model (ESDM) if you have a younger child with ASD. Or, don’t bother with such extras for now and just try to make your new daily routine livable! All in all, my advice on this front is simple: find some new goals that logically fit the current circumstances that you can also meaningfully invest in, and start shifting into higher gears with these goals while the crisis persists. We may all end up with some great new roles and connections for everyone in the family that will provide new and fulfilling paths forward in our lives.

What about my child’s anxiety?

For your children, there are some easy things to do to help reduce irrational anxiety. First off, it is generally advisable to be open and honest about the coronavirus situation, but try to keep things simple and at a developmentally appropriate level. The information you share should include methods that make the problem seem controllable by your child and family: if we focus on cleanliness, social distancing, etc., we can greatly reduce our exposure to the virus. Other bits of information should focus on reducing your child’s appraisal of the risk severity: even people who get the virus are likely to survive. But of course, like any virus we’d prefer not to get it.

To help children cope more, we sometimes frame children’s anxieties as “icky thoughts” that can be challenged with “calm thoughts”. To establish the nature of their icky thoughts, we can help children by pointing out that many other people are worried about the coronavirus. What do our kids think people worry about? For example, we can point out, people are probably afraid of getting the virus, but what do they worry would happen if they got it? It is helpful to give the child a chance to express the underlying fear of mortality that may be on the back of her/his mind—even it is just to say that “that is what other people are worried about.” It is then possible for some children to play a little game that might be framed as an “icky thought challenge” in which parents express an irrational couple of beliefs about the coronavirus and the child’s challenge is to prove why it is not true. Such a conversation might look something like this:

Parent: Ok, I’m going to pretend to be really afraid of coronavirus and you prove why I’m wrong. What if I said that the coronavirus will probably “blow into our window” and make us sick because somebody walked by on the sidewalk?

Child: No, as long as you’re six feet away it can’t do that.

Parent: Hmm, ok you got me on that one. But, what if I said, I think coronavirus is going to come out of the water faucet in our house and get us that way?

Child: No. Water is clean before it goes in your faucet. Workers check that it is safe.

Parent: Ok, that was a good point. I’m going to give you one more just for fun. What if coronavirus climbed down the chimney and got us that way?

Child: Its not Santa Claus, dad. Duh.

You can also do a fun drawing project showing coronavirus getting “blasted” by soap and water, or if you like to play-fight with your kids, do the same thing saying “I’ll be coronavirus and you be soap!” Empowering your child in an active role in thinking about the problem rationally and adding a small dose of humor to the mix can heighten children’s resilience. Of course, if your child is younger or these concepts are beyond their level of cognitive development, don’t worry. Their anxieties may be more rooted in the changes in daily routines and the fear of the unknown that present circumstances can bring. Seeing you acting calmly, having a daily routine they contribute to and being sure to inject regular pleasant activities throughout the day will be a great boon to establishing a new normal that they come to see as safe, predictable, and enjoyable.

Most of all, try to be ok with achieving less, and keeping those more modest and achievable goals in mind for everyone in the family. Pacing ourselves, ensuring our basic needs are being met, and trying to accept our own limitations at times like this can really make coping with stress and anxiety more feasible. And, as always, if these general strategies aren’t sufficient, you can always seek professional advice on handling anxiety for the people in your family.

a guest blog post by Allyson Schwartzman

Last week when I was watching the news and I saw that all schools would be shut down, I felt my heart sink into my stomach.  As a special education teacher, I am always up for the challenge of how I need to design my instruction to teach my students.  However, now that we have turned to remote learning during the COVID19 pandemic, this is a challenge that I and other special education teachers have never imagined having to face, particularly in the time frame of a week!

From the perspective of a special education teacher, remote learning seems complex since we have to differentiate all of our instruction to align with our students individualized education plan (IEP) goals.  Before I delve into the issues of remote learning, the first thing I have been worried about is how my students and families are doing emotionally. Are my students and their families able to adapt and deal with this change in their life?  Are my students feeling overwhelmed, anxious and scared being stuck in their house?  As a special education teacher, I not only care about teaching academics, I care about their emotional well-being which is paramount during this global pandemic.  The first step I took was to reach out to my students’ families to check in on them and to let them know I am here for them. I told my families that even though we are not together in the classroom, we are in this new learning journey together.

Since my twin brother has autism, I know from personal experience what it is like to live with someone who has special needs.  It takes an army of incredible people to raise a child with any type of disability. From the lens of someone who has personal experience and work experience with children with special needs, I want to make sure my students’ families understand that even though the army of people from school (school therapist, occupational therapist, speech therapist and more) are not physically present, we are still here for you. 

There are many questions in my mind about remote learning. The main question is how am I supposed to meet my students’ goals when we are not together in person to work on them?  The answer that I have and that I believe most special education teachers will agree on is that I WILL DO THE BEST I CAN to create strategies to meet students’ individual goals. I know this is a generic answer, but I hope people can understand that during an emergency situation like this one, sometimes we do not have a clear answer right away.  It is going to take a lot of trial and error through a computer during the next few weeks to figure out what works and what does not work. 

We are very fortunate for the academic technology we have access to such as google classroom, video services and different academic websites.  However, I understand along with other teachers and families that this might not be enough especially for children with disabilities who struggle working on a computer.  What I hope for is that as time goes on teachers will figure out the  best way to teach and reach their students.  It is going to be very hard and challenging for everyone, but we all have to continue to work as a team through this experience.  The U.S. Department of Education has a lot of equity concerns and logistical hurdles that need to be dealt with, but I want everyone to understand that we need to stay positive during this very difficult time and teachers are going to do the best they can to service all children with special needs.  

by Molly, Reilly, BCBA

Molly Reilly is a BCBA in Connecticut and works with autism families daily

We are amidst a situation in which everyone’s world is being turned upside down as our regular schedules are thrown out the door and we live a life of self-quarantine. The massive changes in our daily lives and uncertainty surrounding the situation is difficult for everyone and is especially so for individuals on the Autism Spectrum and their families. I will describe a number of strategies that are general good practice but will be especially helpful during these uncertain times. The strategies will be presented in two individual blog posts. In the first post I will discuss preventive strategies and in the second I will discuss the importance of helping teach self-regulation and functional communication skills as well as reinforcement strategies. 

Here are some strategies to possibly prevent problems or at least prepare your child for them.  They include:  1) ways to maintain routines and ensure predictability in those routines, 2) use of simple language in directions, 3) integration of social stories to demonstrate the routine, and 4) ways your child can feel that he or she has more control over the situation.   

ROUTINES AND PREDICTABILITY –  it is critical to maintain previous routines as much or possible, or develop new routines during this time.  This can be done through:

Visual schedules.  Visuals are concrete tools  to help reduce frustration by making life more predictable.  They should be built around the basics like waking up, eating meals, preparing for bed, exercise, free time, bath time and screen time.

First you will want to have a draft of the routine, and decide how activities will be represented (e.g. pictures for children who cannot read, text for children who can read).  You will also want to decide how many activities to present.  If the child is not familiar with a visual schedule it would be best to keep it simple such as First-Then Board.  Then move on to Morning, Afternoon, Evening schedules, and finally an all day schedule for more advanced learners.   When creating the actual schedule allow the child to be an active participant by taking pictures, selecting pictures from your smartphone or from google images to print out, writing words, etc.

There are a number of resources with examples of social stories you can use.  It is different than a visual schedule, but they may help you explain things like washing your hands, why school has stopped or how to try and prevent spread of germs:  They are: 

 Movement breaks or brain breaks are key. During the day, you will have alternate periods of sedentary and movement activities.  You can use Gonoodlecosmic kids yoga, animal movement cards or even an obstacle course to help structure activities.  If your child is able you can go on bike rides (making sure to distance 6’ to other people also outside), develop scavenger hunts, and even go on a hike. Games like Follow the leader and Simon Says offer great opportunities to work on following directions.  Parade magazinealso has some ideas of what to do.  

As much as possible, maintain a consistent routine.  Be sure that everyone in the household is aware of what the schedule is and follows it accordingly. This is especially important for caretakers because you need to present a united front so make sure you have everyone’s buy in.  If possible,  try to mimic your child’s school schedule.

Utilize transition cues when transitioning between activities.  Timers help give reminders visually (e.g. sand timer) or auditorily (kitchen timer).  You should also offer warnings to signal a transition is coming (e.g. 5 more minutes, 2 more minutes, 1 more minute, and then countdown from 10).

Remember that the schedule is not set in stone – I have made several modifications to the schedule I made for my daughter will most likely continue to do so :).  Feel free to add in activities that you forgot to include, especially if your child loves them.    Remember:  If a particular activity does not work, that is okay! If your child is really not enjoying it, end the activity and transition to another activity to avoid frustration.

SIMPLE LANGUAGE Avoid too much verbal language, keep it simple and to the point. Also try and state things using First – Then language.

For example, Say “First shoes, then outside” rather than “Bobby, you need to get your shoes on your feet before we can go outside.”

CONTROL Provide your child with opportunities to have some control over their environment.  This is especially difficult because parents feel this loss of control.

There are some things you can do to help them feel in control.  For example, jobs and chores are great ways to help your child feel some sense of control over the surroundings and can include  feeding your pet, watering flowers,  planting something to grow, swiffering, etc.   To help kids feel empowered, share ways that they can help their community such as covering their cough, keeping their hands away from their face, washing their hands, etc. as demonstrated in an infographic from: kidlutions.blogspot.com.    

Offer choices whenever possible – which writing instrument to use doing a writing activity, which seat to sit down at the table, what color playdough to open first, hike in the woods or walk down the street for outdoor time.  Many times the open ended question is not going to help, so you should provide 2-3 concrete options.   For example, during snack time avoid asking “what do you want for snack” because the options are infinite and your child may request  something that you do not have in the house! Instead, ask your child if they would like pretzels or applesauce for snack.   Visuals are always helpful – utilize visual or textual choice boards or menus if appropriate.

Hopefully, the strategies discussed in this post will help prevent the occurrence of undesirable behaviors during this uncertain and unpredictable time.  I will also be following up this blog in the future about how to strengthen skills during the crisis, rather than focusing on building new skills.  Good luck!

a guest blog post by Scott Badesch, ASF Board Member, Former President, Autism Society of America

I am a proud member of the board of directors of the Autism Science Foundation.

I recently retired as the President/CEO of the Autism Society of America.  I have four adult children, one who is autistic, and a great son-in-law.   I also am a grandfather to the most precious grandson in the world.  My wife and I have been married for 36 years and before this crisis and even now living through this crisis, we know we are blessed in that we have each other, friends and family.  We have started a daily FaceTime call with our kids and grandson and we are actually talking with each other and not texting on our cell phones. 

Like everyone, I am scared and anxious. I see my retirement funds going down drastically and my planning for retirement never ever considered the impact of a global crisis.  I wonder if i will be able to leave retirement if I need to and find work when this is over. I also fear for the future of each of my adult children as well as my grandson. But I also see good coming ahead.

I hope we will get through this crisis with a better understanding of how we all are in this together.  And I think people are seeing that.  It’s what happens during a crisis. In crisis, people often put aside their hate and stereotype thoughts and just give a hand to a person in need.

Let’s admit it.  Before the crisis, we were not really good when it comes to valuing every person, especially individuals who are impacted by autism.  But today, it is different.  Globally, we are all dealing with the same thing. We now are assured that what happens anywhere else impacts us.  We need to start thinking that we are not defined by our geographic boundaries but the boundaries of what we call earth.  Our skin color, nationality, religion, disability, sexual orientation or sexual preference can no longer be the definition of who we are.  Rather we are all similar human beings.

I believe that as difficult as it is right now, we will come out of this crisis much better and I also strongly believe that people impacted by autism will be better off when we exit this crisis.   Today, we are all anxious, concerned about how we can find food for our meals, coping with being out of work, not knowing if work will be there for us and constrained by significant financial issues.  Heck, we are worried about finding toilet paper!   To so many autistic adults, what we are experiencing is unfortunately the life too many impacted by autism live each day. But I am optimistic about our future when it comes to helping autistic individuals in need. As a close friend said to me the other day, “I always have been blessed to have things come easy to me.  Now, they don’t. I am worried that I won’t have food to feed my family, dealing with high anxiety by everyone, and worried about my future unknown.”  He then said that he never has understood the difficulties that so many in need face, but now he has a sense of it and has to be responsive to it in the future. I think my good friend and millions of others will hopefully learn from all they are dealing with now and be more responsive to helping others in need when they return to whatever is defined as the “new normal.”

Our challenge is big but maybe it can start if everyone can get a mulligan and we all stop our hate and begin to listen to each other so we will come out of this as better human beings.  If we stop the denial of opportunities to too many, we can live in a global world where all are equal and included.  When someone has billions of dollars and there is a child who has to wake up in a car each morning; when an autistic young woman is denied access to a job because of an employer not understanding her skills and value; when an autistic person has to wait in some states eight or more years for basic services……maybe we really deserve this recheck.

We can’t fix the problems with the old solutions that if we are honest are temporary and often don’t work.  We must be bold and give all we deal with a rethink. Let’s rethink how we can appreciate our differences and need to be there for each other. Let’s put everything on the table.  Let’s realize that a person sleeping in a car doesn’t benefit from a bail out of the airline industry but we still have to allow commerce to start again. We owe the kid in the car a life of opportunity which can never occur if that kid uses the public swimming pool locker room as his family bathroom. We owe every person with autism the commitment that we will be there for him or her today and not promise we might be there tomorrow.  We owe every person impacted with autism every access to life’s opportunities.  And we owe our society’s help to every person impacted by autism who can benefit from such help.

What we learn from this will be what we can be after this is all over. I am optimistic that maybe, just maybe, we are in for a massive recheck of who we are and we will come out of this so much better. 

As I said, I am optimistic about our future!  On a personal basis, I know as a father of an adult son impacted by autism, that he has been denied opportunity because of the ignorance of others who decide simply because he is autistic he is not entitled to life’s opportunities. Prior to this crisis, I believed change came slowly and incremental advances were what might occur.  Today, I think we can make large changes and advance the wellbeing of everyone.   

a guest blog post by Gary Mayerson, Founder, Mayerson & Associates

The COVID-19 crisis transcends the obvious health and existential threat, with millions of school-aged children across the country home from school indefinitely as we watch an ongoing and as yet unresolved wrestling match involving Congress, the U.S. Department of Education, state administrative agencies, (e.g. the New York State Education Department), and local educational agencies (e.g. the New York City Department of Education). 

Families are calling with the following kinds of questions.  For example, can unmet IEP mandates give rise to a claim for compensatory education?  Can the local school district provide my child with remote learning opportunities?  If I am thinking about securing private services for my child, can the school district be made to pay for those services?  Before I secure private services for my child, do I need to send my school district a “ten day notice” preserving my right to seek reimbursement for the cost of those services?  Am I permitted to contract with service providers to come into my home if they are willing to do so?  Since I am now spending the entire “school day” with my child, can I get  (or secure funding for) “parent training” hours?  Do I have any insurance coverage that may help to fund any of the supports my child may need?  Should I request that my school district’s IEP team reconvene as a telephonic meeting?

The U.S. Department of Education has published and circulated March, 2020 Questions and Answers that, unfortunately, do not definitively answer these kinds of issues. The crisis has put us all into largely uncharted territory.  However, the Department of Education’s Q and A does suggest that if you are living in a school district that is offering remote learning opportunities, your family may have greater options and rights going forward than families living in school districts that are not offering such opportunities.

Each family’s circumstances will be unique.  For that reason, families should consult with their attorney before contracting for private services or taking other related steps. In the meantime, I am calling on all parents to help stop an ignoble legislative initiative and threat that, if allowed to pass, could easily destroy or at least significantly dilute our children’s entitlements under the federal IDEA statute and related state regulations.

Lamar Alexander’s (R-TN) Shameful Effort To Nullify Or Dilute IDEA Entitlements

 As part of Congress’ response to the COVID-19 outbreak, the bill introduced earlier this week in the Senate — the Coronavirus Aid, Relief, and Economic Security Act  (to provide an infusion of cash to key industries, support for health care providers/health care systems and more) also includes a provision directingthe Secretary of Education [Betsy DeVos] to report back to Congress within 30 days on any “waivers” needed under the IDEA and the Rehabilitation Act of 1973 (Section 504).The bill also gives the Secretary broad waiver authority over the Higher Education Act (HEA), the Elementary and Secondary Education Act (ESEA) and Carl D. Perkins education laws.

To be sure, these “waiver” provisions jeopardize every child’s rights to Child Find, a free appropriate public education (FAPE), Individualized Education Program (IEP), all procedural safeguards, re-evaluations, related services and accommodations.

As if COVID-19 was not already a serious crisis for families whose children are now not attending a school-based program, this legislative initiative threatens to eliminate every child’s fundamental right to Child Find, a free appropriate public education (FAPE), Individualized Education Program (IEP), all procedural safeguards, re-evaluations, related services and accommodations, and more.  To say the least, Congress should not be giving the nation a trillion dollar stimulus package while at the same time sweeping America’s disabled children under the rug.  It is time for our entire community to sound the alarm. 

My office is following this development closely and undertaking efforts to challenge this shameful proposal.  We urge all families to join us by reaching out to their Senator/Representative today (via email).

Find Your Senators here: https://www.senate.gov/general/contact_information/senators_cfm.cfm

U.S. Senate: Senators of the 116th Congress http://www.senate.gov _Senators of the 116th Congress 

Find your Representative here https://www.house.gov/representatives/find-your-representative

A sample email follows: 

Dear Senator/Representative:
While the COVID-19 outbreak has placed a tremendous and unprecedented strain on schools and districts, it is imperative that we work together to find solutions that allow children to receive equitable access to an education and the services that support them without undoing all of their civil and educational rights. I am writing as a concerned (parent/teacher/child advocate) to urge you to reject any proposal that would provide waiver authority to the Secretary of Education regarding the Individuals with Disabilities Education Act (IDEA). More than 7 million children and their families rely on the federal IDEA statute to receive special education supports and services. 

I hope you will help schools by providing states with additional funding that can be used to provide teachers and school leaders and families with the tools they need to connect to teach and support students. Schools can also be supported with funding to provide an extended school year to students and other compensatory services. 

COVID-19 does not discriminate on the basis of party affiliation. The IDEA statute came into being as a bipartisan effort that families across the nation have relied upon for decades. Please continue to support students with disabilities and their families who rely upon the IDEA so that they can access appropriate and effective educational programs. Please do not support any legislative initiative that would give any one individual the power to undo and eviscerate IDEA.

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