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Archive for April, 2020

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:

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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. 

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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!

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