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Over the last 10 weeks, I know that most of us have experienced some level of fear, sadness, uncertainty, and hardship as the pandemic has swept across the country and changed almost every facet of American living. For many of us, these feelings have been compounded in recent days with sorrow, anger, and confusion as civil unrest has forced us to look hard at the inequities in American society. Especially to members of the Black community that we work with and serve, I send my personal support and empathy, and I want to be clear that we stand in support of the rights, safety and dignity of all people.

As an organization, it’s periods like these that force us to think deeply about our role in creating a brighter future in the communities we serve. Inherent in our mission is the idea that we exist to help children succeed. But now more than ever, it’s important to take stock of who we help and how we do it. I believe strongly that:

• Our mission is to deliver as much hope as we can, to as many families as we can, equally and fairly within all the communities we serve.
• We have a duty to serve all families with compassion, respect and understanding of their circumstances.
• While society as a whole may not be a level playing field, we must do better to create a workplace that is inviting, and model inclusion and diversity.

So what’s next?

1. We will be re-evaluating how we train and support the clinical competency of our clinical and administrative team to ensure that our services are compassionate for all
2. We will be tasking our Diversity & Inclusion Committee with generating new ideas on how we can better promote a diverse and inclusive workplace
3. We will continue to proactively seek to expand our services to underserved communities in need

Every step forward counts, and if we can make small progress every day towards our ideals, we can deliver results that will continue to make us proud to work for LEARN as we do our part to contribute to a brighter future for all.

#togetherwecan

-Justin

As some states cautiously move into the initial phases of re-opening, there may be more places to go within your community, and more opportunities to see people you haven’t been with for some time.  Even so, it’s likely there are people in your child’s life that you are still unable to see, whether it is because they are higher-risk individuals who are self-isolating or because travel between states has not yet fully resumed.  We are moving in to our fourth month of diminished contact with our loved ones, and as ever, looking for ways to keep up connections with those who are in our hearts, even when they can’t be in our homes.

Our children, too, have felt the isolation.  We want to make sure that our children continue to maintain important relationships with family members and friends they’re not able to see in person.  When your child has autism, this can be even more of a challenge.  As we continue down this road of reduced in-person contact, it’s important to help our children preserve their ties with others.  Video conferencing, such as Zoom or Skype, can be one way to keep these bonds strong.

Maintaining a wide network of support for our children within our communities is another reason to stay connected.  Even if relating to others is difficult or connecting via video conferencing isn’t particularly meaningful for your child, it can serve to keep your child at the forefront of the thoughts of others.  Helping your child’s community to keep them in mind, make regular contact, and show their love and support can have long-term benefits on both sides of the relationship.

Here are some tips to help make video-conferencing with family members a little more successful:

Expectations

To reduce stress on yourself as the mediator, shortly before the call, take a minute to remind yourself that the most important goal is for the two parties to quickly connect and know they still care.  Let go of any expectations that there will be a sustained interaction.

Prepare for a zoom session just long enough to allow everyone to say hello, and have a brief connection; too long of a session may put stress on you, your child, or the person on the other end.  Unless your child is an avid zoomer and the person on the other end is dying for a long session, you will want to plan for a fairly short call.  Really, just a few minutes on a regular basis is enough to spark recognition and rekindle the sense of connection that your child has with this person.

Your child may be at the point where they don’t yet have a spark of connection with very many people, and that’s ok.  It’s still important to maintain familiarity.  Remember that setting up short but frequent interactions with other people in your community can also strengthen the rapport that the other person feels for your child, which may boost opportunities for further social interaction in the future.

Preparation

To improve the chances of a smooth experience, you may want to prepare your child, and perhaps prepare the other party.

Choose one or two things to talk or items to show the person.   Children can present a favorite toy, or art project that they have done.  If your child is verbal, you might review something they’ve done recently that they can share, practice a song they can sing, or prepare them to tell a favorite joke.  If there is a new skill that your child has that s/he is particularly proud of, this is a great time to show off.  If your child may be tough to engage via video, you might consider showing the other person an interaction between you and your child, for instance, a game you play together, or something you do that boosts your child’s mood.

Some of the people you may be connecting your child with already know them well and will have excellent ideas about how to engage.  Others, especially older relatives, might not be familiar or comfortable with video conferencing, and may have difficulty coming up with ideas, so it can also be useful to prepare them.

Think about things that will be most likely to catch your child’s attention.  If your child likes music, for instance, zoom friends can sing them a song, play an instrument for them, or play a song that they could listen to together.  If your child is interested in electronics or visual stimuli, the zoom partner could use a custom background that might be particularly interesting to your kiddo, share their screen to look at photos together, or use effects on the screen to share stickers and drawings.  For children who are more verbal, you might prepare their zoom partner to tell them a joke or a story, or give them a softball question to ask your child about something they will be excited to share.  If your child likes books, reading a story is another great option.

The Call

During the call, let go of the expectations that your preparation will go exactly as planned, and return your focus to the underlying goal:  a short hello to maintain a link to an important person.  Remember that it doesn’t have to be a long, chatty affair, it can be a 5-min operation start to finish.  Give it your best effort to help your child attend, but don’t put pressure on them to sustain the interaction longer than they are interested.  Go in with an attitude of flexibility – do what works, let go of what doesn’t.

Keep in mind that each conversation is just one small interaction that continues to build upon their history of rapport. Short, frequent contacts with others can help your child continue to recognize and identify those they are not seeing frequently, and can support the ongoing relationship.  Put in the preparation and keep the interaction short and sweet.  And of course, if you don’t feel successful the first time around, remember that practice makes progress, and keep on going.

This was a text from one of my mom-friends in the early days of our stay-at-home order.  It took me a second to register the meaning in this statement from someone who is my friend, my peer, who has children of the same age.  It felt so foreign, and I immediately thought, Time?!  What am I doing wrong?  (The answer is, of course, plenty, but let’s not get distracted here.)

The difference between my lovely (bored) friend and myself is that I am parenting a child with special needs.  I don’t have a child with autism; my oldest struggles with mental illness.  In regular times, it’s lonely, it’s difficult, and I feel like our family is indelibly different.  But in the midst of a pandemic…  Forget different, we are alien life forms on a different planet.  I get texts from my friends asking for validation that it is okay that they let their child skip an assignment today.   My first thought is, Girl, today I turned on closed captioning while the kids watched tv and I called it Reading All Day.  Facebook is full of pictures of the cleaned-out basements and fresh-baked sourdough done in my friends’ free time.  Again: Free time?!?  Like some of my friends who have kids with autism, my days are spent helping my child manage the basics of life: getting over the emotional hurdle of breakfast, running the marathon of 2 hours of home-schooling that feels like 12, spending an hour out of every three diffusing a meltdown.  Throughout it all, my husband and I are following a path that winds around the house like a trail of breadcrumbs, wiping and fixing the things that have been spilled and broken in his wake.  It is constant.  It is relentless.  There is no lunch break.  There is definitely no time to be cleaning out my basement.

I want to take a moment to share my awe of all single parents. The only reason I am able to still function at work is because of my husband’s support and participation.  (Seriously, single parents, I salute you and offer up all the hugs, kudos, props, and every other form of recognition.  If you are a single parent caring for a child with special needs during this pandemic, with all of the powers vested in me by the Mommy-Blogger-Gods, I decree that in your next life, you deserve to be lounging on a shady terrace in a tropical climate, being slowly fanned, while you sip a fruity drink with flowers in it.)  I do have a partner, so yes, there are moments when I can take a walk by myself, or shut myself in my room for a half hour.  But even this privilege feels trivial under the constant barrage of the immediate needs of my child.

So here’s what I want to say to my peeps out there, the parents who are following similar bread-crumb trails of disaster around their houses:

You know your kid. 

Some of us have chosen to have service providers in our homes, accepting the risks; some of us have moved to telehealth, but with fewer hours; some of us have had to discontinue services, for one or more of a million reasons.  These decisions impact our child and our families now, and in one way or another, their future.  More than ever before, we are in our heads, second-guessing the decisions we are making about our children’s services, or about how we are handling their days (too much routine, not enough routine).  Even the opinions of well-meaning friends and relatives who are not trying to be judgmental can seep in and sow seeds of doubt.  Here is a mantra to repeat to yourself: I know my kid better than anyone.  You are the only one in a position to know what is best for your child.  It’s important to listen to the opinions of some (professionals who know your child, for instance) and to absolutely ignore others (your nosey neighbor who’s “just seeing if everything is okay” when your kid is raging over, literally, spilled milk).  Remind yourself frequently that you are the expert on your kid; not only that, you’re also the one directly managing the day-to-day every day.  Whatever decision you have made, I applaud you.

You are doing great, and I am not judging you.

Thou shalt not judge oneself by thy neighbor’s Instagram.  For reals.  Reading heartwarming stories about all of your friends’ kids’ accomplishments and seeing portrait-mode-perfect pictures of their happy faces while doing a distance-learning science project can stop my heart for a moment.  This stuff is hard for me in normal times; somehow this pain has been heightened by the pandemic.  If you can find it within you to see these things and be happy for your friends and also still feel good about your own family: you are a special angel and I want you in my life.  For the rest of us: turn off the Instagram and the Facebook and find communities of parents who understand your story and can celebrate the unique joys of your kiddo with you.  I could never tell my typical-mom friends about how thrilled I am to go two days in a row without a hole knocked in the wall, but I have found other moms who have similar circumstances and can help me rejoice in this little bit of progress, which reminds me that I am doing great.  You are doing your best AND your best is enough.  Recognize this and seek out others who will also appreciate your kiddo, your circumstances, and your efforts. Repeat to yourself, you’re doing a great job.

 

Ask for Help. 

I know, it’s harder than ever to get help.  Babysitters may be less available, or you may have less money to pay them.  Home therapists and respite workers were hard to find before the pandemic, and now it’s…well, let’s just not even go there.  Here are some ways to ask for help if you are drowning:

1. If you do have a partner, I highly recommend locking yourself in your room once a day and tuning the world out, with headphones, a book, television, or a nap. Nobody can keep going without a break.
2. If your child is able to FaceTime independently, reach out to friends and family members and schedule a FaceTime session every day, whereby you can get a small break. (Hooray!  Congrats!  You get to go to the bathroom alone!  Oh, unless you have multiple kids.)
3. If you have an ABA therapist, keep them updated on how things are going. Don’t hesitate to communicate when something new has arisen or gotten worse – they are there to help you.  If you need more hours, ask for it.
4. If you don’t have ABA services right now, reach out to see if telehealth is available to you, even if it’s just parent education.
5. If your state has a crisis intervention hotline, put the number in your phone so you have it handy if you need it.
6. Exhausted parents don’t love to cook dinner….if you can afford it, order take-out. If you have a friend that offers to help, ask for a dinner drop-off.  If you have cereal and toast for dinner every night for a week, I feel you, friend.
7. If you need a group of people who get you, turn to Reddit, or FB groups, or another online forum of parents who share your situation. Lurk for awhile, or jump right in.  Hearing someone else tell a story that could be yours honestly lightens the load for a minute.
8. If you are associated with a church, temple, or other community organization, reach out to see what services they are offering their members. I have heard of organizations providing meals, support phone calls, grocery drop-off, and other help.
9. Everyone should know about Aunt Bertha – it’s a network linking up non-profits and social programs with people who need them. If you need help with paying for groceries, healthcare, housing, utilities, or help finding a job or getting legal aid, Aunt Bertha’s got you.  https://www.auntbertha.com/
10. The National Domestic Violence Hotline is available 24/7 and is free and confidential. I hope you don’t need it, but if you do, please don’t hesitate to call: 1-800-799-SAFE (7233).
11. The Disaster Distress helpline is set up to help people experiencing a crisis, such as this pandemic. Call 1-800-985-5990 or text TalkWithUs to 66746.
12. If you don’t already have a counselor and you feel you need one, ask your PCP for a referral.
13. Check to see if your employer has an Employee Assistance Program. They may offer free counseling, legal advice, or other services.
14. If you are in fear for your own safety or the safety of others, please call 911.

Take care of yourself, by any means possible. 

Caregiver Burnout is real, y’all.  I had a dark day last week – I was exhausted by a few really tumultuous days in a row, with no sleep.  Someone mentioned “self care” to me and I made a gesture.  For the sake of decorum, let’s say I rolled my eyes.  I would have loved to have taken a bubble bath, gone to get a mani-pedi, spend an hour in yogic meditation, had lunch by myself while I read a book, and all of the other things that come to mind when I hear the words “self-care.”  It goes without saying that none of these things are an option at the moment, and not just because my mani-pedi place is closed.  But here’s the thing: we still have to take care of ourselves.  The best way that I’ve found to “care for myself” at this point in time is to simply lower the bar.  Your bar is already low, you say?  Maybe you need some more encouragement.

It is okay to decide not to change from your sleeping sweatpants to your daytime sweatpants.

It is okay to not respond to texts for several weeks and then to forget to show up to a zoom social hour with your friends.  It happened, don’t sweat it.  They’ll live.

It is okay to change the screen-time rule to only-when-they’re-awake.

It is okay to let your child wear their favorite dirty shirt 14 days in a row if you are picking your battles and that’s not one you feel like waging.

It is okay to lock yourself in the bathroom with your headphone and pretend you are having digestive issues when you are really watching SNL at Home skits, because dammit you need to laugh!

Get the picture?  You need to rest, Fam.

 

You know what The Plague, the Spanish Flu of 1918, and the Hong Kong Flu Pandemic of 1968 all have in common?  They ended, eventually.  Like everything else in life, this pandemic is temporary.  Hold on to that.  Remind yourself that the reason it feels so hard is that we have been doing this for so long – which means we are that much closer to it being over.  Above everything else, while we continue to take this slog one day at a time, be kind to yourself.  Give yourself the kind of encouragement and compassion that you would give me, if we were friends….And I promise that I’ll do the same.

As states take their first tentative steps toward reopening, we want to support families navigating new rules that may be encountered in the outside world: hand hygiene, wearing masks, and physical distancing.  You may be considering sending your child back to a center-based program soon, or thinking about what things will look like at school in the fall; whatever the circumstance, these are health and safety issues that we should address with all of our children.  Here are some topics to discuss with your clinician.

Hand Hygiene

We know that the spread of Covid-19 is primarily through touch, so it is a good time to talk to your clinician about where your child is with hand hygiene, and what is the next step in teaching them to maintain hygienic hands.

Thorough hand washing is most likely something you have already begun to teach your child that will remain a priority.  For those who are just learning this skill, it is more important for them to tolerate a longer, prompted, handwashing than to achieve independence at a less-thorough level.  Children should also be able to use hand sanitizer effectively, cough and sneeze into their elbow, and be able to refrain from touching common surfaces and their own faces.

There are many different methods of teaching handwashing: prompting and reinforcing, chaining (teaching certain steps first and then adding on to the “chain”), video modeling, picture schedules, or peer (sibling) tutoring.  These same approaches can be slightly modified for teaching effective use of hand sanitizer.  Coughing and sneezing into an elbow may also be taught through modeling, video modeling, peer (sibling) tutoring, or repeated practice and role-play.

Another thing to think about is ways to help our kids build the habit of keeping their hands to themselves in public – we don’t want them touching items others have touched, or their own face.  The easiest method is  to teach them an alternative response, like keeping their hands in their pockets, clasping their hands together, or holding an object with both hands.  First, you use instructions and reinforcement to teach the target behavior to occupy their hands.  Then, begin to slowly increase the amount of time they can keep their hands occupied before they receive a reinforcer.  Ultimately, when they are in the community, you want to be able to give them the instruction and feel confident they will not touch common surfaces or their face.

Face Coverings

Masks and other face coverings will likely be in use for the foreseeable future, so it’s a good idea to begin teaching our kids to tolerate wearing face coverings and getting used to others wearing them.  One way to tackle this is “desensitization,” a fancy term for starting small and building up tolerance slowly.  If you were using desensitization, you might begin with first having your child touch the mask with her hand, then allowing the mask to be held up to her face, then allowing the ties to be secured for a second.  Another way is “pairing,” which would entail having a lot of reinforcers available when a mask is present, and getting your child to associate the mask with positive experiences.  Other topics to address with your clinician are whether it’s appropriate to teach your child to put a mask on him/herself, or learn how to take a mask off hygienically, without touching the front of the mask, and putting it directly into the laundry.

Physical Distancing

Another skill that will continue to be relevant is learning how to physically distance.  For children who can learn to give others 6 feet of distance, your clinician can modify techniques from social skills research that have been used to teach children personal space.  Many children will not be able to gauge 6 feet on their own, and the focus moves to ensuring they can follow instructions for their parents or caregivers to guide them in public.  You can begin by looking at the instructions that your child already responds to that may help you to guide him to physically distance, for example, “stop,” “come here,” “wait with me,” and “stand right there.”  It’s likely that your child has learned or worked on these or similar instructions in the past; now it becomes more important that they are able to follow them quickly and reliably.  Talk to your clinician about appropriate ways to solidify these responses, such as increasing the amount of reinforcement earned for physical distancing instructions, practicing them frequently in a variety of settings, and practicing them in the presence of significant distractions.

As parents and service providers, our goal is always to support children in staying healthy and safe as we guide their development. Though these specific goals may not be the things we would have expected to focus on, our aim is to stay flexible and continue to adapt (and help our children adapt) to the changing practices in our community.

By Dr. Hanna Rue and Justin Funches

COVID-19 has changed the daily life of most families in the United States. Many in the autism community are now faced with challenging decisions. Families must decide how they’ll continue their child’s therapy program. Should they increase or decrease therapy hours? Consider online therapy? Or just keep things the same?

This is a complex decision with no simple answer. Every loved one with autism has different needs and faces different challenges. Each family must consider their situation and determine what’s best for them when speaking with their Behavior Analyst.

When making these tough decisions, there are several important factors that each family should consider.

 

Intensity of Challenging Behaviors

There are families who face significant challenges due to their child displaying aggression, self-injury, elopement, or other dangerous behaviors. For these families, clinical support is critical to maintaining safety in the home. Families concerned about managing their child’s challenging behaviors have to compare the risks of COVID-19 to the safety risks posed by the challenging behavior. In these situations, when continuing services is a matter of safety, it’s important to work with your clinical team to ensure proper health and safety procedures are in place. LEARN has implemented successful practices including pre-session health risk assessments, frequent handwashing, thorough sanitization of workspaces, restricting parent/caregiver participation, and limiting the number of technicians in the home.

 

Household Dynamics

Families with high risk individuals in their home, such as elderly or immune-compromised family members, may decide to put home-based ABA services on hold or move to online therapy – which reduces the risk for vulnerable household members.

While ABA services in the home can be delivered safely through strict health and safety protocols – none of these strategies are fool-proof. The only way to fully social distance and receive ABA services is through online therapy via services such as teleABA. In households where the risk of having staff in the home is too great, continuing ABA therapy online helps to decrease the risk of COVID-19 exposure and allows therapy (and progress) to continue.

tel·e·aba

noun: teleABA;

The provision of ABA therapy via computer, tablet or smartphone.

“By starting teleABA services, the family was able to help maintain their child’s behaviors when they couldn’t access session in-person.”

 

Risk of Skill Loss and Behavior Regression

There are families who have witnessed significant improvement in their child’s communication and social skills. These families may determine that the benefits of continuing in-home ABA services are greater than risks of COVID-19 – which we minimize by working closely with a clinician and taking ALL recommended precautions per the CDC. Other factors such as location in the U.S. and access to reliable technology impact a family’s decision to continue home-based ABA services.

 

Opportunities for Additional Learning

While the widespread closures of schools and center-based programs has created a challenge for many families, it’s also created opportunities for additional learning opportunities. In some circumstances, children may benefit from increased intensity of services in the home. Whether that’s to support new skill acquisition or work on a behavior reduction program. This could be particularly relevant for young learners and older learners focused on learning life skills.

It is our hope that the considerations outlined above will help families determine the best path forward. There is no one-size-fits all but we will partner with you to determine how your family can continue to benefit from ABA therapy. Whether that means keeping things the same, changing the intensity of service or embracing teleABA, every family has the opportunity to get the support that fits their individual needs. We highly recommend that families don’t go too long without services and work with their BCBA to find a solution to their challenges, as well as stay up to date on community news and happenings.

Being a working parent is demanding.  Being a working parent with your kids home all day is demanding squared.  Being a working parent with your kids home all day when your child does not have a lot of independent play skills is relentless! 

For parents of children who require a lot of supervision, there are a number of activities that many children can do independently, and that may provide you a few minutes to yourselves.  For kids who enjoy messy, sensory fun, here are some fun activities that you can contain in a very washable location: the bathtub.   

Many of the activities you might normally do on an activity table or in the yard can be converted to the tub.  When play time is over, you can turn on the water for easy clean up of your child and the play area.

Paint

Bathtub paint is available online, or make your own by mixing liquid hand soap, cornstarch, and food coloring.  Let your kiddo paint the entire bathtub, with brushes or their fingers, whatever they like!  Use food coloring if your child is apt to get some in his/her mouth; use liquid watercolor if you’re concerned about staining clothes. 

Oobleck

If you don’t know about oobleck, it is a magical substance that feels solid to the touch, but becomes a liquid when you pick it up,  Add food coloring or liquid watercolor and it’s the coolest, messiest thing around.  I like to make a humongous bowl of it, putting one liquid watercolor on one side of the bowl and another color on the other side of the bowl; as they play with it, the colors swirl and change and mix and are truly mesmerizing.  Again, your own circumstances dictate whether food coloring or liquid watercolors are best for your family.

Edible playdough

There are many different recipes online –  choose the one that fits your kid’s allergy situation.  Here are my favorites:

• • Peanut butter playdough
  • Marshmallow playdough
  • Frosting playdough

Slime

Slime is always sensory fun, and there are a number of different types of recipes. 

• • Borax-free slime is made with fiber powder, so although eating it would not be good on the tummy, it is safe for kids who might give it a small taste. 
  • Gummy Bear slime is safer to eat, but it’s chock full of sugar, so careful of the sugar-crazies!
  • Borax-free and sugar free slime recipe, try this one that uses Jello.

Bubbles

For children who get excited by foaming bubbles, let them create miniature volcanoes in the bathtub.  Line up a bunch of paper cups in the tub and fill them half-way with vinegar.  Drop in some color, either food coloring or liquid water color.  Show your child how to put a spoonful of baking soda into one cup – and watch the eruption!  Exciting, non-toxic fun.   

Last, just a reminder that for kids who like water-play, actual baths are always an option for a family stuck in the house.  Now, you don’t want to leave your children alone in a bathtub full of water, but if your kid is able to play in the water safely while you are supervising, you might be able to get in a phone call or two.  If you want to mix things up, check out bathtub color tablets, different colored/scented bubble-baths, or (my kids’ favorite): water beads.  Please note that water beads are not edible, and only appropriate for children who will not ingest them.  Pre-soak the water beads first so they get plump and as big as a marble, and dump a bunch in the tub.  For kids who like to taste all of their toys, dump a container of blueberries in the water instead! They are the same size as water beads and also float!  Other novel floatable fun objects include bars of soap, apples, corks, sponges, and ice cubes.

Here’s hoping that at least one of these ideas will spark delight in your kiddo’s eyes and give you a few minutes to breathe. 

By Ronit Molko, PhD, BCBA-D

The Covid-19 response requiring nationwide social distancing and sheltering in place has curtailed or eliminated opportunities for one-on-one or group ABA activities in centers and schools. That has left many parents of children on the autism spectrum wondering how to maintain the gains their children have made in ABA therapy. Because the current conditions will almost certainly persist into late Spring and possibly beyond, we want to help parents adapt to these new conditions as soon as possible.

Maintain Structure

The current situation is obviously sub-optimal, but there are strategies parents can employ to sustain their children’s forward momentum. The first is to recognize that the current measures represent a drastic disruption in the child’s routine and that establishing a new routine as soon as possible is important. This routine should adhere as closely as possible to the existing home-school routine with which the child has become comfortable. We all need some level of structure to function well- structure provides emotional safety as well as freedom.

Utilize Telehealth

Although the effort to minimize human-to-human contact has taken in-person ABA services off the table in many communities, many behavioral health providers are moving to telemedicine and online services using video conferencing and video calling apps. The number of these is expected to grow in the first few weeks of sheltering at home, so parents should access their providers for remote support and guidance.

Opportunities to Use ABA

ABA therapy is a repetitive command-response-reward learning system that develops a variety of skills, including communication, hygiene, play, sharing and other activities of daily living. They can be reinforced with everyday activities within the the new home-life routine.

Morning Routine

The morning routine might not have to vary at all, even without school. The child still must wake, wash, dress, brush teeth and eat breakfast, in the same order and at the same time as before. Parents should emphasize to their children the importance of personal hygiene and this is an excellent opportunity to teach the hand-washing and tooth brushing phases of this routine.

If the child normally has the option to choose what they want for breakfast, parents should maintain that choice and require the child to communicate it as before, and be rewarded with the option they choose. Veering off these routines can cause distress for children with autism.

Learning While Having Fun

It’s important to remember that many skills can be taught during typical daily activities and routines at home, as well as during times of play and fun. For example, baking together with your child provides the opportunity to teach and practice math, follow directions (a recipe) and the daily living skills of cleaning up.

Communication

Communication, playing and sharing skills can all be reinforced through play, for which there are myriad options even from home. Scholastic magazine offers free online lessons “built around a thrilling, meaningful story or video,” according to its website. These lessons can be adapted for children with autism and completed at the child’s pace. Scholastic will release 20 weeks of lessons designed to take three hours apiece.

Virtual Excursions

Various zoos now offer live video online of animals in their habitats. Discussion and play can be developed around the identities of the animals, the sounds they make and what the child can see them doing. Among the zoos with webcams are the Smithsonian in Washington, D.C., Seattle, Houston, San Diego, Maryland and Memphis. The penguin exhibit at the Kansas City Zoo is particularly fun and active.

Creativity Time

Art activities help children express their creativity while exercising some of their learned skills. Collaborative projects among children can be used as a springboard to practice sharing and communicating. Parents can focus on tactile art projects that fit the needs of their child, using household items like food dye, macaroni, sponges, shaving cream, toilet paper rolls and much more.

Make Time for Play

There are many other play activities that parents can employ to engage children with autism (and neurotypical children!) and reinforce the skills they have learned in therapy. These might include board games, exercise and sports, and computer games. Whatever the activity, communication with the autistic child should make clear what is expected and reward constructive responses.

Lunch and Dinner

Lunch and dinner times and routines should be maintained while the child is home. Involving an older autistic child in food preparation is a way to develop life skills while practicing sharing, communication, etc. Bedtime routines should be strictly maintained for the emotional comfort of the child.

Parents are their children’s first teachers and continue in that role for their entire childhoods. With a little creativity, parents of children with autism can find enjoyable, everyday moments to reinforce their children’s lessons from therapy.

By Rebecca Mandal-Blasio, PhD, BCBA-D

It is Thursday morning and I just received the 4th frantic phone call from a family member of a child with autism. These are parents who are desperate to find crisis services for their child. These are not families who already have our ABA services, these are family members who did not have any services. Others were on waitlists to receive ABA, and sadly others’ ABA providers hav closed their doors during this time. As I talk to these family members, I refer them to agencies I hope can help, but the reality is crisis services for children with autism are often hard to find even when there is not a pandemic occurring.

So what can families do whose children are not use to the major disruption to their routines due to their school or learning center bing closed and added the social disruptions caused staying at home and social distancing? The limited explanation or understanding about why these changes have occurred can lead to stressful feelings that may manifest as irritability, tantrums, aggression or self-injury. Ultimately, family members understandably become fatigued and frustrated as they do the best they can in a hectic situation.

Here are a few tools/tips to best support and guide your family during this time and  to help prevent crisis from occurring.

1. Explain what is currently happening: Children need to know why there are closures or why they can not go outside. Keep it as simple as possible, but explain in concrete terms….in black and white. Having “gray explanations” and using abstract words or concepts will only make a confusing situation worse.

2. Social Stories: Often times ABA therapists and families utilize social stories to help explain stressful situations such as going to the dentist or getting a haircut. A social story could be a useful tool in explaining what, how and why they can not leave the house and go to the park they used to go to every day. Many autism websites will help provide tips on how to write these stories that could be reviewed each day. If your child is able to assist you with writing a social story, it is great opportunity for an afternoon activity too. Click here for example.

3. Try to keep a schedule: This may be hard to do given our schedules are not predictable each day, but making the child’s schedule as predictable as possible will help calm stressful feelings. This can be accomplished by using a visual or word schedule to make their routine predictable. As the child completes one activity have them put the picture in an envelope or cross the activity off of the paper. Helping set up a schedule for your child will also help put a routine in place for you as well. Ideally, this would as similar as possible to the schedule the child had before the restrictions of the COV-19 were in place (i.e., wake and bed times, bath times, eating times). Don’t put pressure upon yourself to create an elaborate schedule. A simple schedule will be just as effective. If changes need to happen in the schedule, review the changes with your child to prepare them that their routine won’t be as predictable on that particular day.

4. New Skills: New skills may need to be taught using task analysis. For example, hand washing more frequently, the new way to greet people with out shaking hands, using hand sanitizer, or keeping 10 feet away from others may be new skills that should be taught during this time. Breaking these activities into smaller steps and rewarding each step completed will lead to the child learning these new skills. Choosing their favorite song to wash their hands to or setting a timer to indicate when they can stop washing should be considered. Again, no pressure on creating these task analyses….there are many websites that are available for free to help parents create these during this event. Click here for example.

5. Everybody needs a break: Down time is a good thing for everyone. Watching a show on tv or tablet, reading a book, counting beads, or taking a nap is necessary for all of us during stressful times. Exercise or going for a walk outside are also good activities. Down time allows us to escape from the stress and recharge ourselves so that we can face the new activities of our lives.

6. Identifying triggers: You might be aware of the regular triggers that upset your child, however, new triggers during this time may be developing. Observing your child to see what triggers or antecedents proceed challenging behaviors will be vital in decreasing stressful times in your household. If you can identify these triggers, remove or minimize them around your child. But sometimes this is not possible which leads to #7.

7. Coping skills: Determining the activities or skills your child has to self-manage or calm themselves down will be a must in at this time. Counting to 10, deep breathing, touching a sensory item, or behavior relaxation are some ways children have been taught coping skills. If your child does not have coping skills, having a quiet place to calm down will be necessary. A dim room, maybe a circulating fan for a cool breeze, soft relaxing music, access to sensory calming items may be used to create the perfect calm place. The quiet place needs to be individualized for your child’s preferences and what he or she finds relaxing.

Where to Access Help in a Crisis

1. State agencies: Many states have agencies that specifically work with individuals with developmental disabilities. These agencies have psychologists who have experience in providing behavioral services. Often they have crisis teams that work in conjunction with mental health agencies that can help during dangerous or extremely stressful times. Local parent groups can often be great resources for this type of information, like this example from the Phoenix Autism Society website. 

2. Mental Health Clinics: If your child is currently being seen by a psychiatrist, the psychiatrist should be notified that a crisis is occurring. Emergency office visits or telehealth appointments can be set up to get medication guidance during this times.

3. If a child is an imminent risk to themselves or others, hospitalization may be unavoidable. Working with a psychiatrist will help you in locating in-patient mental health services. Child specific hospital emergency rooms may not have as many COV-19 emergencies that can assist if hospitalization is necessary.

Know that you don’t have to do it all alone.  Connect to family and friends when possible or with other parents on community pages on social  media.  With support and quality resources, you will get through this challenging time and back on track.

By Katherine Johnson, BCBA

Until recently, my weekdays had a different form of routine to them.  Each morning my family and I would venture out to spend our day at work or school, and look forward to the time when we would get to connect later in the day. I love coming home to my kids. After a long workday or a good yoga class, there’s nothing better than collapsing on the sofa with them to read a new book or review the day. But suddenly, I’m not coming home to them – I’m with them all day, every day, as we adjust to the strange new world of Covid-19. My kids aren’t coming home to me, either – no more playdates, sports practice or outing with friends.  We’re together all the time, at home and sometimes outdoors. And suddenly we realize how much we all rely on those shifts in company and locations to help regulate our emotions.

With the ongoing concerns regarding coronavirus (Covid-19) and recommendations for social distancing, ABA providers are quickly adapting to create new service delivery options for families.  Providers want to keep families and staff as safe as possible, while ensuring that clients continue to receive the care they need.  Telehealth allows patients to receive services remotely, making it an ideal way to minimize in-person interactions.  Every day, more insurance carriers are joining in approving this mode of service delivery for ABA clients. 

Who needs Telehealth? 

While some families are seeking continuity of the same level of services they were receiving previously, sheltering in place has actually increased the need for services for some.   Newly-diagnosed children and older individuals with aggression or self-injurious behavior cannot afford a break in services.  Children and adults who are struggling to adapt to the drastic change in routine of a sudden break from school or expected community activities may need more help than ever.   

How does Telehealth help my family social distance?

Using Telehealth decreases the number of people with whom your family will interact on a daily basis.  Although you may still choose to have services in your home, Telehealth provides the option to minimize the number of providers.  Direct service providers typically visit only a small number of homes.  Having a BCBA, who is responsible for supervising more families and staff, provide supervision and parent training via Telehealth allows those professionals to continue to serve many families without the risk of spreading germs between houses. 

How can Telehealth work within an ABA model? 

The model used for ABA is called real-time Telehealth or synchronous telemedicine.  This means that the health care provider and the patient are speaking and interacting in real time via audio or video communication.  Here are some examples of how real-time Telehealth might be used:

• The direct therapist is assigned to a minimum number of homes and takes precautionary measures to keep him/herself and the family low-risk.  Therapy proceeds as usual, with the BCBA observing sessions, taking data, making protocol modifications, and giving feedback through the use of a Telehealth platform. 
  
• In cases where direct therapy is not able to occur, another option could be an increase in parent education hours.  Some families might be prepared to continue the programming formerly implemented by the direct therapist, and some families will not be.  BCBAs can re-assess needs and design a parent-training program that meets the needs of the client within the constraints of the current family circumstances, whatever those may be.  This may mean changing goals, shifting priorities, and introducing different methods of managing behavior.    
  
• In some cases, direct therapy through Telehealth may be clinically appropriate.  Individuals who are able to readily attend and communicate with a therapist without physical redirection and who don’t require in-person reinforcement delivery may be able to make progress through Telehealth.  The feasibility of this would be determined by the BCBA.     

Are there privacy concerns? 

You have the right to expect your health care providers to protect your privacy no matter what modality your services are provided through.  There are many different types of Telehealth software specifically designed to be HIPAA compliant.  As with any healthcare service you receive, if you have privacy concerns, discuss them with your provider.  And always remember that whether or not you consent to services is entirely your decision. 

What should I expect?  How do I prepare?

The following are helpful in preparing to receive Telehealth services:  

• A strong Wi-Fi connection in your home
• A physical arrangement that minimizes disruptions and keeps other ambient noise to a minimum 
• A device that can be set up to properly view the therapy surroundings and the entire session (for observations and supervision) and moved to an area for 1:1 discussion, out of earshot of the client (for parent or therapist private discussion with the provider)
• Proper audio on your device.  Consider a mix of using device audio and headphones.  When a provider is observing the session, the device audio will capture all of the interactions going on.  When your child is taking a break and you and the provider need to speak, it may be best to use headphones for better sound quality and to reduce background noise. 
• Any other typical items you use during therapy: note-taking materials, etc.   

As with any type of therapy, it’s important to have excellent communication with your providers to share how the model is working for you.   A continuous open dialogue with your provider about your experience allows them to troubleshoot with you, ultimately making sure that this is an effective way for your family to receive ABA services.   

Continuity of services is important for both your child and your family, especially during this time of general disruption in routine.  Not only does this provide consistency in routine, it gives your child the opportunity to engage with others and to continue developing skills, and will ultimately support their adjustment back into a normal routine once this situation resolves. 

By Katherine Johnson, BCBA