Imagine having to build a padded room in your home to keep your daughter safe.
I have had moments of desperation with Brielle, but it never got to that point. I can’t say the same for my friend Rita.
Rita and I have never met in person, but we have been friends for a decade. We connected via Facebook groups for moms of autistic children in New Jersey. We are linked forever by commonalities in our children-both girls, about the same age, with severe autism. We once talked about getting the girls together, but never did, knowing that play dates weren’t really a thing for kids like ours.
Over the years we have talked via messages about our daughters’ tantrums, periods, communication devices, medications, lack of sleep. Both of our girls, now in their 20s, still need full support with bathing, dressing and toileting. We both know the struggle to maintain careers. The lack of sleep. The isolation. The roller coaster of autism as behaviors come and go.
Lately, Rita has been at a rough point. It’s a crisis at her home. We talked on the phone for the first time the other day. and I heard the familiar sound of pain and frustration in her voice. It’s a feeling of helplessness when you see your child scream and cry and can’t do anything to stop it.
“As her mom, her protector, her everything, I am torn apart,” Rita wrote. “How is it fair that the child who clings to me with love deeper than words is also the child who hurts herself, and sometimes me, in ways love can’t fix? How can both versions of Janvi be true?“
Janvi is 20 years old, just 87 pounds and 5 foot 3 inches, but strong as hell. Never underestimate the strength of an autistic person in crisis. Even those little girls. I remember when Brielle had her tantrums, she would punch herself black and blue and squeeze my arm so hard she would leave marks.
Like many people with autism, Janvi is in a constant game of medication management. One med stops working; another makes her lose or gain weight. You can find the right balance for a while, but eventually something changes. We are having that issue right now with Bree and her sleep meds, because the drug she has been using for several years seems to have lost some of its effectiveness.
Even so, Brielle for the most part sleeps through the night (literally knocking on wood as I write this). She gets up early, sometimes 3 or 4 am, but goes back to sleep most of the time. Sometimes she lets us sleep till 6.
You think you have it bad, and then you meet someone who makes your bad look like a walk in the park.
Rita describes Janvi as Dr. Jekyll and Mr. Hyde. One minute she is all smiles and loving. The next, she is on the floor writhing and screaming for hours at a time. This behavior led Rita and her husband to build the padded room in their Old Bridge home that is designed to be a safe place for Janvi to de-escalate. The room is modeled after one in Janvi’s day program.
There are moments, Rita says, of pure joy, when Janvi is smiling and dancing to music, or snuggling. The other moments, the ones that force Rita to put her only child in a padded room, are the ones that make her question her ability to care for her child in her own home much longer.
Rita is wracked with guilt for even contemplating the idea of placing Janvi in a group home. But after a long stretch of agony, she is considering it as she acknowledges the need for help. We have been texting back and forth in recent days as I try to offer her whatever advice I can.
On Janvi’s 20th birthday, Rita wrote her daughter a letter, knowing she would never read it but needing to do so anyways.
“I’ve built my world around you, sat through storms with you,” Rita wrote. “And there have been moments of pure love and light from you – those glimpses that remind of the soul connection we share. But I’m tired, Janvi. Not just physically tired – soul fatigued.”
Leave a Reply