Isolation on Steroids: The COVID-19 Quarantine & Special Needs

Imagine you are the captain of a sports team.  The season started off rusty, but you led, you communicated, you encouraged, you appreciated each team member.  You worked together better and better and you had a good rhythm.  You were interdependent in a positive and successful way.  You achieved milestones and victories!! You celebrated! And now, it is the playoffs. As the captain, you are excited, nervous, but mostly excited. You show up to the field. And no one is there. No one from your team. And you see the opposing team, dressed in fancy glaring-red uniforms.  You receive a text message:

“You have to play this game alone.  Every single position. And you must win. Good luck.”

When the COVID-19 orders shut all the schools down, I felt like that team captain.

All special needs families heavily rely on their team—whether at school, center-based therapies, college programs, transition programs, adult day programs, and group homes.  We rely on teachers, SPED teachers, behavior therapists, speech therapists, occupational and physical therapists, adaptive PE teachers, aids, doctors, in-home nurses, program leaders, social workers, Best Buddies, afterschool SPED programs, babysitters, respite caregivers. Not to mention any families that have extended family offering support.

ALL OF IT.

And we just showed up for the playoffs and were told to go it ALONE and good luck. The support from a distance that we are receiving IS appreciated, but it is not the same as having a full team in play.

Motherhood can be isolating anyways. Add disability to that and it is exponentially emotional, stressful and isolating.  Add the COVID-19 quarantine, and we are dying inside of overwhelm. 

Our children have had a major disruption to their schedule and life framework, to their social needs, therapeutic needs, educational experience and the thousands of supports that keep them safe, growing, learning, stable and happy. A talented writer friend of mine, Megan Dolan, writes, “What is an annoyance to us (neuro-typical humans) is an INVASION to our (special needs) children.” (Content in parentheses added by me.) 

When my children were much younger, (they are now 19, 16, and 14), let’s just say I struggled with summer. What to do with them all day long??? Especially Ryan.  11 weeks without the structure and support of school, is a long time when you have a special needs child. When outings and family trips are less than desirable because of the “what-ifs” with Ryan, and can be difficult or disappointing for my other two kids.  Yet, at least, then, unlike now, we could leave our home, we could gather with other moms and kids, make it a team effort, we could hire sitters or use respite hours.  SPED summer camps offered tons of fun for kids and personal space for us, or 1:1 time with our other kids in need of our attention and love.

Now, we, as a nuclear family, are all together. ALL. THE. TIME.

Parks and beaches closed.  If you have experienced toddlers and young school-age children, you know how important it is for them to run, jump, play, and get their wiggles out. Multiply that by 1000 for special needs children and teenagers and some adults.

And we are trapped. At least it feels that way for some families.

In Southern Cal, the weather has been so amenable this Spring, even on our “cold days.” So we get our every morning with Ryan and walk 2-3 miles. It helps us start our day! I realize this is a PRIVILEGE.  This is NOT possible for all families.  “We are all in the same storm, but we are not in the same boat.”

The hardest part for me, as a doer, as one who wants to serve and help, is feeling helpless. As the Executive Director of We Are Brave Together, an NPO that supports mothers of children with disabilities, I have the honor of hearing many stories. We are having weekly Zoom support group meetings, as we are obviously not allowed to gather for any of our events right now). I ache for each mom struggling to play the playoff game alone. Because of this damn virus, we cannot even help each other out.
Swap kids.

Babysit for breaks.

Share educational lessons and field trips.

Cook or clean for one another.

Be in community and offer tight, oxytocin-producing hugs.

NOTHING.

But words of care and support to share—and words are powerful, yes.

But moms are drowning right now, with wiggly, sad, angry, confused, aggressive, emotionally and medically fragile children, of all ages.  Mothers of children with special health-care needs were fighting compassion fatigue and burnout BEFORE the Coronavirus entered our world.   

We need each other now more than ever.

We need our teams.

Yes, we are strong, resilient, capable and have learned to navigate and even thrive through crisis.

Yes, we must draw upon inner strength.

Yes, we have learned through crisis, that there is nothing we can control in life anyways.

We know we CAN choose and control our thoughts, attitudes and actions.

We will.

We will rise up. AGAIN.

 

Yet, the world needs to know there is deep suffering and deep isolation among special needs families.

It is real.

It is a moment by moment survival for some.

We want you to know.  We want you to pray for us.

PLEASE PRAY. xo

(WRITTEN on Day 41 of this quarantine.)