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The Burden on Special Needs Children & Families

Autistic_BoyBy Deirdre Imus, 9-19-2020
This is the second blog in our series exploring the psychological and social impact of the COVID-19 pandemic on our nation’s children.  The first, titled” Back to School?” introduced the topic, and emphasized the role of parents in deciding the safe balance between education and their child’s health.

The pandemic has posed a burden on all parents of school-aged children from struggling with the added demands of work (or lack of work) to working at home with scheduled Zoom meetings and the unscheduled needs of children. However, for families of children with special needs, from autism spectrum disorders and other learning disabilities to serious physical conditions, the burden is much higher, and for that reason, these families may have something important to teach the rest of us. 

 

Capturing Attention

Distance learning will likely continue to be part of the solution for many schools this fall. Yet it can be difficult for any child, and nearly impossible for children with serious attention deficits and other learning and physical disabilities.

Parents should be aware of what schools should and must do to educate special needs children in general, as well as the opportunity for tailored programs to meet the needs of their child during the COVID-19 crisis. See this Q&A on Providing Services to Children with Disabilities During the Coronavirus Disease 2019 Outbreak, from the U.S. Department of Education.

For those on the front lines, capturing attention is key. Teachers that use web-meeting software must jazz up their lessons to keep children engaged but recognize the limitations. There is no substitute for real human contact, so they must also work with parents on strategies to keep children alert and attentive. Special education teachers and administrators can also give parents effective learning exercises they can do at home to reinforce lessons. Online, the IRIS Center offers a module for parents to support learning during COVID-19 that begins with ways to engage students. Among other materials, the Autism Society offers extensive resources including a special COVID-19 kit and resources in Spanish.

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Dealing with Emotional Fallout

As we pointed out in our first blog,what stresses parents stresses the whole family. With the uncertainties of the fallout from the pandemic, family arguments can become more frequent and intense. Tempers can flare and boil over. That is true of any family, but children already grappling with heavy emotions of their own, or just the business of processing normal sounds, can feel family eruptions more intently.

On the positive side, families with special needs children are experienced in dealing with difficulties of all dimensions. Healthier families develop a natural resilience based on patience, perseverance and practicing calmer communication styles. These families get a front row seat to these lessons, and the benefits can be self-reinforcing until they become second nature. 

Of course, everyone has limits. When families have redoubled their efforts and strains rise to a completely new level, parents must maintain their awareness and talk about what they are experiencing so they can reach out to others for help. That could be someone as close as a friend or neighbor, a teacher, clergy, or someone new such as a marriage counselor, family therapist or other mental health professional.

It is important to take care of yourself and ask for help if needed, to avoid burnout. Maybe you just need to go out for regular walks or a special dessert. Daily structure is essential, and when children are not in school and trapped at home, it becomes even more critical. Part of that structure must include healthy meals, proper sleep, and time for partners to reconnect and remember what is most important in their lives together.

Evaluating Risks

Families of children with serious health problems know all about seeing and responding to risks. Some children are hypersensitive to physical stimuli or face risks like choking or falling, or seizures. Some may have compromised immune systems or chronic conditions such as asthma on top of other ailments that do put them at a much higher risk. Facing risks can be frightening so these families generally learn to adapt early. They focus on what they can control, because they know that living with fear can itself pose a lasting handicap.    

On the other side of the fear is all the help that children with developmental issues receive in a structured school environment. School is the place where children learn to get out of their shells, enjoy being with others and where they can gain regular access to physical therapists, speech therapists, cognitive specialists, etc. Yet without proper support during the pandemic, children can slip backwards. In a recent interview, NBC News chief foreign correspondent Richard Engel said COVID-19 has been a “nightmare” for his severely disabled four-year-old son. So in a real way, schools give children with special needs their best chance -- and pave the way for a more normal life at home.

Life will always be uncertain, and COVID-19 poses new risks. As health authorities and school officials grapple with the best ways to reduce and manage the risks, parents must evaluate what they hear. They must say ‘no’ to fear and calmly consider what they know (and what they don’t know) so they can make the best decisions for their families.

Resources

Resources that Support Distance Learning: Digital Resources by Content Area
(California Dept. of Education)

COVID-19 Toolkit
(The Autism Society)

COVID-19 Updates and Resources
(Organization for Autism Research)

Parents: Supporting Learning During the COVID-19 Pandemic  
The IRIS Center, Peabody College, Vanderbilt University

 
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