BCBA Katherine Johnson helps break down what “Self-Determination” is in relation to the ethics and codes of medical practice.

Behavior Analyst Katherine Johnson teaches a simple breathing technique called the Physiological Sigh to keep you calm when your child with autism is having a tantrum or meltdown.

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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.