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Devereux’s Rayni Brindley writes letter to fellow parents of children with special needs  

By Rayni Brindley, M.Ed., BCBA – Devereux Advanced Behavioral Health Senior Vice President of Organizational Development. Rayni is the mother of a 7-year-old child on the autism spectrum. 

Dear Families and Caregivers:

I wanted to check in on you, because if you are like me, I know you need it during these challenging and uncertain times.

Coping with public health emergencies, like COVID-19, is overwhelming, but for those of us caring for a child with special needs who is home due to school and program closures – without his or her typical day-to-day supports – stress has hit an all-time high. Add in working from home; caring for other children or family members; and attempting to homeschool … well, the pressure is really on.

As we navigate this new world together, it is important to remember: There is no way to be perfect right now (or ever, for that matter), but there are some steps you can take to stay safe, healthy – and calm – during this crisis.

• Be gentle with yourself: Remember that it is OK if you need to step away from a videoconference meeting because your child is experiencing a significant behavioral episode. It is OK if your child is spending more time on his or her iPad than working on therapeutic or school activities. You are not failing, you are simply doing the best you can. I was recently sent this quote by child and adolescent psychologist Dr. Emily W. King that sums it up quite nicely: “It’s not hard because you are doing it wrong. It’s hard because it’s too much. Do the best you can.” 

• Ask for help: Many schools and service providers are offering virtual or telehealth services during COVID-19. If your child’s current providers are not offering these services, contact other providers. For children whose therapy does not translate well to videoconferencing, ask for parent training sessions to better equip you for the challenges you are facing at home, or, access online support for yourself. 

• Practice self-care: I cannot stress enough the importance of self-care for your overall health and well-being. I am not talking about booking a spa day or taking a solo shopping trip (because … social distancing). Instead, download a meditation app like Calm or Headspace; read, or listen to, a book; take a walk; listen to music; take a bath. Access this list of tools and resources to help you and your loved one manage stress and anxiety, and stay safe, during this time. I always remind parents of what the airlines say: Put on your own oxygen mask before assisting others. You need to take care of yourself in order to take care of anyone else. 

• Reach out to your tribe: Connect with your fellow special needs parents. Send a funny meme and laugh (or cry) together. Vent with people who truly understand what you are going through. Advocate for providers to hold online support groups. As part of our Family Engagement focus, Devereux especially recognizes the importance of offering support. We are actively working to create online versions of our support groups to help families and caregivers. 

• Set realistic expectations: Create a schedule, but don’t be hard on yourself on days it just doesn’t pan out. You cannot do it all, and that is OK. Some days, you just need to stop the schoolwork or therapy activity and allow your child to watch TV or play. Tomorrow is a new day.

The most important thing I want to remind you of is this: We are all in this together, and we will make it through this together.

Rayni 

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