Parenting Children and Youth With Special Needs
I’m a parent of a 21-year-old living with autism. We are getting along OK in this pandemic with online college for her, and more opportunities than usual to practice life skills like cooking together. I’ve been talking with some of you who are parenting children and teens with special needs at home, and I’m hearing that the standard parenting advice out there (Do More! Do Less! Allow screen time! Limit screen time! Do crafts! Have dance parties!) doesn’t feel relevant and even feels shaming and harmful.
I want to say this to you:
First, I say all this with so much love for you!
You know your child best, and you know your own limits.
Do what you think is right.
Do what you are able to sustain.
You are parents who know this pandemic is not hitting all of us in the same way – there are all sorts of in/justice factors here and we aren’t all resourced in the same ways. Some of us have medically fragile kids who also have cognitive or other challenges, and just managing their basic needs and providing some movement, care, and calming techniques comprises excellent parenting right now.
Some of us have kids who are emotionally or otherwise unable to connect to online learning, kids who need some space and understanding from us more than enforced routines.
Some of our kids need routine more than air almost. A wipe-board schedule with snack time, and craft time, and get-outside time and learning time (and blessedly, bedtime) is really the only choice even though it means you have little down time for yourself.
Keep breathing. You are enough even when you don’t feel like you are.
It is enough if you don’t do any cleaning because you are juggling a paying job and time with your kids.
It is enough to manage getting by with half or less of your previous household income right now rather than attending to the full educational needs of your child this week.
It is enough if you have to resort to having cereal for dinner some nights because you don’t have the time or energy to cook.
It is enough to sit outside your front door for a time out, and it is enough if you need to cry.
It is enough if burn-out overtakes you; it is enough to recognize burn-out coming and take the break you need.
It is enough to take joy in the simplest things, and to mourn all that is lost.
Finally, it is more than OK to ask for help.
What is helping you manage right now? Where else can you turn?
Some school districts and social service providers are going above and beyond right now, while others are really not. I’ve always found other parents of special needs children to be the best sources of information about where to turn for advocacy, fulfillment of IEPs, assessment for services, and now online support.
We’ve posted a few helpful links below. Feel free to send us suggestions you’d like us to share.
More importantly, what is feeding your spirit?
Do you have time to take a deep breath?
Look out a window?
Listen to some music?
Take a brief pause?
You are a good gift. You are enough.
The Rev. Sarah Lammert is the Co-Director for Ministries and Faith Development at the UUA. She is a divorced (and recently remarried amidst COVID!) parent of two young adults, the younger of whom lives with autism and social anxiety disorder, and lives at home. She hails from Northern Vermont, and is amazed at the resilience and creativity of special needs parents and caregivers.
- Sean Patrick Hughes, a parent of a 13-year-old with autism, shares what how he learned in the Navy to get through hard things is helping him parent his child during this pandemic.
- Autism and the Corona Virus: 20 tips for children, teens, and adults with autism.
- University of North Carolina’s “Supporting Individuals with Autism through Uncertain Times” tool kit for the covid-19 pandemic.
- The Cleveland Clinic has an excellent resource on Caregiver Burnout. Not all suggestions will work with physical distancing.
- Here is a great resource for parents of kids with epilepsy at the Epilepsy Foundation. They have put up a lot of helpful articles about getting through this pandemic.
- NAMI (National Alliance on Mental Illness) has done a great job updating its website with mental health and addictions recovery resources in response to the pandemic.