Recommendations for parents of children with developmental disabilities and/or mental health concerns during COVID-19

For parents of children with developmental disabilities and/or mental health concerns this time of sheltering at home presents additional challenges. One change that often follows treatment disruption is that patients return to their Pediatric Primary Care Provider to rebuild the care team and create an effective treatment plan.

Guidance for parents of children with common conditions is as follows:

FOR THE CHILD WITH DEVELOPMENTAL DISORDER

These are extremely challenging times for families with children with Autism Spectrum Disorder or other developmental disorders. Routines are disrupted and the usual community supports and resources are less available and generally only accessible by phone or online. Finding new ways to establish routines and permitting parents to have “rest times” is essential. Support is available through the Office of People with Developmental Disabilities (OPWDD) and parents should stay in close touch with their care coordinators and mental health providers that they are already linked with. Tips for parents include:

• Have an emergency plan in place outlining provisions for childcare if a primary caregiver is hospitalized or otherwise ill or quarantined.

• Develop a daily schedule for the child. Contact the child’s teacher and obtain the school schedule to incorporate into the family daily routine. The familiarity of elements of the school schedule may help the child to adjust. Parents may need to make adjustments based on the child’s response as well as their own needs.

• Set up reminders to refill medications and maintain regular schedules of medication administration. A discussion with the pediatrician about troubleshooting the details of medication adherence and management can be very helpful in finding practical solutions to these issues.

• Use visual prompts to maintain routines. Again contact the school teacher to obtain any successful visual prompts they have already developed.

• Telehealth appointments with pediatricians are strongly encouraged. These appointments allow for ongoing monitoring and promote a sense of continuity and stability for developmentally disabled children and adolescents. Because telehealth appointments are generally well accepted by children and much easier on the adults who need to transition and transport the child to the doctor’s office, this modality may become the standard for many appointments with developmentally disabled children after the COVID crisis resolves.

• Include the child in joint activities as they are able (e.g. cooking, cleaning chores).

• Incorporate physical breaks at regular intervals.

• Be flexible about screen time. Allowing for more screen time than usual is going to happen for many, if not most, families. At the same time be cautious about allowing too much time on screens and developing habits that will be difficult to change later.

FOR THE CHILD WITH ADHD

The difficulties for the child with ADHD are more focused on maintaining structure for the child and minimizing negative social interactions with other family members prompted by difficult behaviors.

• Maintain usual school routines and schedules.

• Incorporate lots of physical breaks into the daily routine.

• Maintain sleep routines; although flexibility is important in many domains now is not the time for flexibility on sleep for kids with ADHD! Parents need to have time to recharge their batteries and if children stay up too late parents don’t get this opportunity.

• Continue the same medication regimen your child has been using unless discussed otherwise with your pediatrician.

• Stay in touch with your pediatrician; this is a great time for telehealth appointments.

• Utilize behavioral approaches successful at school (these can be obtained by contacting child’s school).

FOR THE CHILD WITH ANXIETY/DEPRESSION

• Stay engaged with your child. Encourage active engagement with productive activities (school, homework, physical activity, hobbies, chores, etc).

• Minimize isolation and check in frequently enough with the child that they know the parent is engaged and paying attention, but not so much that the parent is seen as “bugging” their child.

• Stay in touch with your child’s emotional pulse by asking and listening to how they are feeling each day. It’s more important that a child feel listened to than that the parent came up with the “right thing to say.”

• For depressed youth, parents should be monitoring for any signs of impulses for self-harm or suicide. Crisis services remain available in all counties. Mental health providers are available by phone or telehealth for new evaluations or ongoing treatment.

• If already linked for mental health treatment, parents should stay in close touch with the child’s mental health professionals.

• For anxious children, as always, encourage children to face their fears and avoid colluding with the child’s anxiety by making excessive accommodations. Because so many activities are restricted by the current crisis anxieties may manifest themselves in more subtle ways. Parents need to continue to challenge their children to “build their emotional muscles,” better tolerate their anxiety, and maintain their freedom to live their life fully.

• Maintain sleep routines used during the regular school year.

• Ensure the child is engaged in outdoor activities at least once per day.

• During the COVID pandemic, pediatricians should continue to monitor and provide support for the children in their practice with anxiety/depression. This may be an easier time to stay in touch with mental health professionals providing psychotherapy. A conversation between the pediatrician and mental health professional can be enormously helpful for all.

• For teens, monitor alcohol in the home.

 

Project TEACH Child and Adolescent Psychiatrists are available through the Project TEACH warm lines to provide guidance on assessment of a children’s and adolescents’ mental health symptoms and evidence-based treatment during the COVID-19 pandemic.

By David Kaye, MD, Project TEACH Project Director, Regions 1 and 3, and Vice Chair for Academic Affairs and Professor of Psychiatry at the University of Buffalo, and Amber Parden, MD, University of Buffalo

New York Project Hope

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