While everyone is busy panicking about all thing surrounding us in life right now there are subsets of parents who are living this emergency in completely different ways. Parents with kids who have special needs of any type are facing an entirely different set of challenges on top of it all.
Here are just a few of the questions we are living right now:
• What if I can’t get the supplies I need to keep him alive?
• How can I keep her included in life and still safely separated?
• What if he catches this virus and dies?
• How will I socialize myself/spouse/other kids/etc. without unknowingly bringing home a deadly virus?
• What if I can’t receive the services/help I need at home to keep us all alive and sane?
• What can I do to keep a schedule so she doesn’t get dysregulated and hurt herself, me or someone else?
• How can I be the nurse/occupational therapist/speech therapist/ doctor/ teacher/ physical therapist/ behavior analyst/ counselor/ coach / and parent all by myself?
• How many nights can I go without sleeping?
• How will the money stretch far enough for all of us to survive?
• I am already so lonely this is going to make it so much worse!?
• When this is over how will we be able to mend the structure back to “normal”?
And oh, so many more. Once the country went into lock down mode in many places these things became increasingly more difficult. The isolation of Special needs Parents is already such a huge concern and stay at home orders prevent the little socialization we get from occurring at all.
My quiet time is right after the kids have gone off to school and I get to drive to work, listen to music or an audio book and vibe. This is no longer available to me. Work was a solace, a place to live my passions and commit to the best parts of myself. Now I am laid off.
Here is the real side of parenting a child with trauma needs in a time of emergency and Chaos:
- Making sure the kids have enough information so they are not terrified
- Hiding, softening or sugar coating any information from the kids that may be a trigger
- Handling that trigger when it undoubtedly occurs
- Trying to keep things light even when my own anxiety is through the roof
- Pushing through each and every day no matter what the day may bring
- Getting up dozens of time some nights because my kid refuses to let the bad dreams take him down and decides to fight them (read me) instead. All. Night. Long.
- Getting back up with them the next morning to follow our color-coded distance learning schedule so that everything stays as “normal” as our home can be
- Losing my shit more times than I am proud to admit because this is HARD
- Crying, a lot of crying, from them, from me
- Days where supervision is a constant need and being the only one home to provide said supervision so wondering if this will be the day, I pee my pants in the living room
- Organizing phone calls/ video chats etc. from 2 teachers, 2 counselors, 2 behavioral analysts, 2 speech language pathologists, 2 one on one aids, 1 occupational therapist, and a partridge in a pear tree
- Trying to be the calm in their storm and having to ignore my own storm raging inside
- Being horrible at this ^ and losing my shit again
- Yelling, fighting arguing, between the children and my begging, pleading and demanding they stop it immediately, before I lose my shit again.
- Counting down the minutes until my wife comes home so I can finally take a few minutes to use the bathroom without having to watch the security cameras the entire time
- Making dinner, supervising chores, showers, bedtime responsibilities and praying that tonight they will just go to sleep.
- Desperately trying to fit some adult time into the time between when they go to sleep and wake up.
So when I see these people with their sun shiney smiles talking about how we should use this time to connect with our children more, learn a new skill, read more books etc. it makes me want to hurl something at them.
I wish I could make adorable crafts with my kids, chalk pretty messages on the driveway, write letters to loved ones and snuggle up to watch a movie. I would love it if we could sleep in, play video games, bake a sweet treat and play the day away. This may be your life but it is not mine. It is not the life of most families who have a child or children with special needs. These times would be impossible to survive if it wasn’t for all of you. Keep reaching out, keep sending love, keep being there even when we have to bail on you time and again. You have no idea what a lifeline you are to us. You are our mask, our gloves, our heart and soul. We love you <3