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Parenting a Child With Special Needs During COVID-19

My mother is the primary caregiver for my sister, an adult with cerebral palsy and an Intellectual Disability. On a typical week, my sister receives 8-hours of support a day from care personnel while my mother goes to work. My sister’s week includes a number of her favourite activities such as volunteering at a day care and pet shop, attending exercise and swimming classes, music therapy classes, visiting friends, and practicing skills such as shopping and cooking. She is very close with her care personnel and is excited to see them each day.


Over the past few weeks, mom made the difficult decision to eliminate support from all care personnel and will support my sister full-time on her own. My sister found it difficult to understand why she could no longer see her care workers, hug her friends at the grocery store, or take the city bus. She misses attending weekly music therapy class. These activities bring so much joy to her life.

As a parent yourself, you may be asking yourself a lot of important questions right now. What does social-distancing look like when I have support workers who provide care to my child? How can my child continue to receive therapy and make progress so that (s)he does not regress in certain skills? How will my child’s school provide special education services in the world of distance education? How can I help my child understand COVID-19 and adapt to this change?

Needless to say, parents and caregivers of children with special needs are my heroes. I hope to provide a few suggestions here to support parents during these difficult times.

STRATEGIES TO EASE STRESSORS FOR PARENTS AND CAREGIVERS OF CHILDREN WITH SPECIAL NEEDS.

1. Take a deep breath and practice kindness toward yourself. It is a natural instinct for parents and caregivers to put their needs aside to ensure their child is safe and has their personal needs met. It is also important to remember to check in with yourself, and monitor your own reactions for signs of burnout and caregiver fatigue.

2. Check in with your child’s school, teachers, educational assistants, therapists about how educational and therapeutic services may change for your child. If schools offer distance learning opportunities for students without disabilities, the same support should be offered to students with disabilities. There are a host of free online resources and apps to help make online learning more accessibility to all students (e.g., speech-to-text and text-to-speech, eliminating distractions on a page, magnifying). Check back to my blog for more information.

3. Check in with your healthcare provider by calling or using telehealth services (if available). It is important to continue to stay connected to your health professionals. They can assist you with care decisions if your child has a medical condition, or requires medication, equipment, supplies, etc.

4. Provide empathy, love, and unconditional support. Your child needs to know that they are not a burden to you. This is especially true at this time, when parents are all of a sudden acting as their child’s teacher, educational assistant, speech therapist, and counsellor, all while trying to balance their own work from home. Feeling stressed may be an understatement for many. Remind your child that you love them unconditionally and show them the joy of getting to spend extra time together.

5. Expect changes in your child’s behaviour and respond gently. You may see behaviours like increased worries or anxiety, difficulty separating from caregivers, testing the limits, or emotional dysregulation. Disruption in routine can extremely challenging for many children, especially those who need routines, boundaries, structure, and consistency to made them feel safe and know what comes next. Instead of introducing a major behavioural plan or strategy, focus on creating safety and a strong emotional connection with your child. And stick to a routine as much as possible.

6. Monitor the time that you spend watching and consuming media/news. While it is important to stay up-to-date on the new and ever changing information regarding COVID-19 and your community, spending too much time taking in this information can add to your stress.

7. Stay connected to others. Try to spend at least 30 minutes a day talking to someone on via phone, Facetime, or Skype. If possible, connect with other parents who may understand your experiences at home. Don’t forget to do this for your children as well! Consider setting up playdates via video chat, or have some of your child’s close support workers call in to maintain their connection with your child.

8. Reach out for help. Call, email, text your child’s support staff, your friends, or anyone on your “team”. There are mental health professionals waiting to connect with you virtually if you require support, even if for the first time (Free “Psychological First Aid” services coming soon to BC https://www.psychologists.bc.ca/covid-19-resourcesand the “Disaster Response Network” is available to those living in Alberta: https://psychologistsassociation.ab.ca/about-paa/disaster-response-network/).

9. Use clear, simple, concrete language (with pictures!) to explain COVID-19 to your child. "Social-distancing" can be a confusing term that individuals with Intellectual Disabilities or Autism Spectrum Disorder may struggle to understand. Managing your own sense of calm will help your child do the same. Here are some of my favourite resources to help explain COVID-19 to your child with special needs:

Online Toolkit for Individuals with Autism Spectrum Disorder

https://ed.unc.edu/2020/03/19/unc-team-creates-online-toolkit-for-those-supporting-individuals-with-autism-during-covid-19-epidemic/?fbclid=IwAR0c7bWmtbdKipJRh_TVgmoZZoz6mxOHlMvxrn0jVYcpIB1SxpkMOKaC0IM

Augmentative/Alternative Communication (AAC) Resources for COVID-19

https://janellesampson.wordpress.com/2020/03/12/talking-to-kids-about-coronavirus/?fbclid=IwAR3eDjHfUfNOVg7XPNHxFTqp-axoJa1L2h_HjDquM4iK9nnBC3MBiqASKWU

Simple, concrete explanations for teens/young adults with Intellectual Disabilities

https://scdd.ca.gov/wp-content/uploads/sites/33/2020/03/Green-Mountain-SA-Info-By-and-For-People-with-Disabilities.pdf

Visual Stories About COVID-19

https://04d2ec2f-79c1-4256-9e05-7a7556c88ab8.filesusr.com/ugd/222ce3_adc769219b5c427d948552d1f1455271.pdf

A Comic About COVID-19

https://www.npr.org/sections/goatsandsoda/2020/02/28/809580453/just-for-kids-a-comic-exploring-the-new-coronavirus

Simple, concrete explanations for teens/young adults with Intellectual Disabilities

https://scdd.ca.gov/wp-content/uploads/sites/33/2020/03/Green-Mountain-SA-Info-By-and-For-People-with-Disabilities.pdf

Additional Resources:

American Psychological Association

https://www.apa.org/research/action/children-disabilities-covid-19

National Association of School Psychology

https://www.nasponline.org/resources-and-publications/resources-and-podcasts/covid-19-resource-center

Follow me on Twitter where I share more relevant and practical resources and articles:

https://twitter.com/oliviagriffioen/

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