a poem by Scott Lentine, autistic self-advocate

As I enter my next decade
I aspire to achieve many new goals
Seeking to develop fresh relationships along the way
Before I am old and gray
I hope to have many years of fulfilling work
I would like to assist others in achieving this goal
I am ready to find my purpose in life
And be a key figure in fighting this fight
Acceptance in the community is crucial for us all
Everyone needs to be embraced for who they are
And have resources to help them reach for the stars
And to break down all the walls
It is time to realize that every human wants opportunities and a complete
We need to give each individual with disabilities the services they need
To make their lives full and independent

About the Author:
Scott Lentine is a 33 year old autistic self-advocate. He works as an administrative assistant at the Arc of Massachusetts, and as a paralegal at a law office in Billerica, MA. In his spare time, Scott loves writing poems and spending time with family, friends and his dogs. To learn more about Scott, you can visit his blog here.

a guest blog post by Liana Klin, ASF Summer Associate

I have grown up being taught everything there is to know about ASD with a parent that leads an autism center in Atlanta. I was often exposed to house guests with autism, attended the annual Autism Walk in Atlanta, received daily statistics regarding ASD at the dinner table, and volunteered within the autism community. These experiences and constant discussion about ASD has given me a unique perspective that I try to take advantage of in a less knowledgeable public. I am hyper aware of those around me on the spectrum, and this includes those around me in both my private high school and the current university that I attend. I have learned that not everybody is going to look out for others, and I urge you, reading this, to take what I say into consideration and use it to encourage yourself to be kind to those that may not be like you.

Growing up I attended a “progressive” school in Atlanta, Georgia, where being ‘weird’ was pretty normal, whatever ‘normal’ really meant. People familiar with my high school often joke that it’s  full of unique people with strange talents, especially because my school allowed us to dress however we chose, worked to highlight our unique talents, and tried to make student-teacher relationships as strong as possible. Unfortunately, it is difficult to create the ideal environment for anybody that differs from the ‘norm’, even with the constant efforts my high school put forth, and students on the spectrum still struggled to fit in more than others.

People that were less aware of these students’ social differences thought they were annoying or would subtly make fun of them. This was not okay, though I have definitely been guilty of it. Along with many prejudices that others and myself have, it is important to constantly be checking yourself for these hurtful oppressions. Students that attend non-specialized schools tend to be higher functioning and not as unaware as you may think. In one of my English classes, a student said to the class she was on the spectrum and is aware that she was different. 

I began my undergraduate education at Tulane University in 2018, where I was surrounded by a different ‘norm’ than I was used to. Many big-city, outrightly wealthy, and honestly, intimidating people sat beside me in my classes. People were less likely to be rude to others and speak poorly about strangers, and more likely to just do their own thing and pay no mind to those that are uninvolved in their social life. While being in this type of environment, it is easier not to feel judged or watched at all times, though this also means students that do need a social push in the right direction tend to become more isolated. For example, I had a calculus class of about 50 people, and towards the front of the lecture hall sat a student on the spectrum. This student sat alone and paid more attention to what was being taught than anyone else in the room, due to the disinterest in most other students on the material. He frequently raised his hand to ask questions to our professor, who also was somewhere on the spectrum and had difficulties giving sensible answers. This student frequently corrected the professor, which caused the class to erupt in giggles.

Throughout the semester, him and I were often two of the first few students to enter the lecture hall, and as I do with anyone, I would always greet him with a smile or a “hi”. What became somewhat of a ritual, evolved into a distant and near silent friendship between the two of us. If I entered the classroom a little late or with a friend and forgot to go out of my way to say hello, he would turn around and smile until I smiled or waved back. If he corrected the professor, he would turn around for some sort of reaction out of me. I honestly don’t even think the friend I sat with in that class had any idea of this communication between me and the boy in the front row.    

A large campus is intimidating, and not everybody is going to look out for others. Small acts of consciousness and kindness can be vital to those with social differences and can also push those with ASD to have a college experience that typically developing students are able to integrate into, usually, a lot easier. I still see this student from my calculus class walking alone to and from classes, and I just hope that he has other friends saying “hi” to him in his classes. There is not a need to go out of your own norm to make those with ASD in school feel better acclimated, we should all just treat those different than us with the same kindness and respect that we give to anybody else around us. 

a guest blog post by Lee Anne Vetrone, Development Manager, Spectrum Designs Foundation

Six or so weeks ago, when the Covid-19 crisis ramped up and effectively halted life as we know it, the team at Spectrum Designs Foundation was on schedule to break previous sales records, offer more individuals with Autism paid employment opportunities and open the doors to our anticipated new location in Westchester County, NY. Immediately, thoughts shifted to the safety of our staff, then to sustaining our non-profit businesses -custom apparel, gourmet granola and a boutique laundry. When New York State ordered all non-essential businesses put on PAUSE in an effort to stop the spread of the virus, two of our three businesses were deemed essential – Spectrum Bakes and Spectrum Suds, while the Spectrum Designs’ production shop was shuttered. Our staff, 75% of whom are on the spectrum, were sent home and focus turned to providing remote learning opportunities and daily calls to stay in touch. But, what of the business? Spectrum Bakes and Spectrum Suds remained open operating with a neuro-diverse crew of 2-6 individuals.

Once staff was set-up with scheduled online training and remote work schedules, we pulled together the team to brainstorm next steps, as has always been the norm for our game-changing non-profit. With the larger of our enterprises, Spectrum Designs, closed during the pandemic –how do our still growing enterprises – granola and laundry – rise to the occasion – stay afloat, keep on mission and be of service?

Keeping in mind, limited resources and staff – we created two campaigns for our enterprises that have turned out to be game-changers. Spectrum Bakes created the Snack-in-Place gift box -as a way for people to stay connected to colleagues, friends and families near and far. The boxes have been a hit and have shipped all over the U.S. to much cheer! As a way to give back to a community that has given us much, Spectrum Suds created the “Free laundry for 1st responders and healthcare professionals” initiative. Offering to take a “load” off – of laundry, that is to those sacrificing much for our safety.

Although, not able to fire up our machines to screen print and embroider custom apparel, we were able to tap into the promotional items end of our business and creatively pivot to procure desperately needed PPE – personal protective equipment – for front line and essential workers, businesses, municipalities and nonprofits. Working diligently, our team successfully sourced ethically priced, certified and vetted items, while ensuring a quick delivery for those in need. 

The success of these business “pivots” have meant the world to our organization – providing much needed income at an uncertain time, given us positive press-worthy stories to share with donors and the media and has secured a place for our staff to learn and work once we are given the go-ahead to come back to work!   

Spectrum Designs Foundation is a purpose-driven organization with an important mission – to help individuals with Autism lead full and productive lives through the world of work. As a non-profit, 100% of profits go to advance the mission. Via three separate social enterprises, Spectrum Designs, Spectrum Bakes, and Spectrum Suds, opportunities are created for employment, empowerment and growth.  To learn more please visit www.spectrumenterprises.org.

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.  

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