Pain ripped through me as they put their finger on the very sore spots that I still grappled with
a grandmother! OMG! How did I become a grandmother? And he’s beautiful! The most beautiful baby boy ever born on this planet (since the birth of my youngest son obviously…)!
I was with my daughter at the birth — there are no atheists in a delivery room. Oh the miracle of it! That first cry! That tiny bundle of golden downiness. And he looks like Chezky! He looks so much like my Chezky, and I’m transported straight back to that other delivery room so many years ago, when the doctor announced, it’s a boy! I didn’t have boys! I didn’t know what to do with a boy.
And now… it’s a boy.
As I lit candles that Friday night of the shalom zachar my heart swelled with gratitude and tefillah. V’zakeini l’gadel banim uvnei vanim.
It’s one of Chezky’s favorite songs. He can sing it again and again… ad nauseam! But this tefillah also always confused me. If you look at all the brachos we wish on our children, there is no mention of social well-adjustment. Chezky was a chacham, navon, ish emes… but hey, was that enough for him to be successful in This World? So on my own, I’d begun to add after the tefillah, a pasuk that to me summed up my wishes for each of my children (and grandchildren!) V’nimtza chen v’sechel tov, b’einei Elokim v’adam. Let him be connected both to Hashem and to Klal Yisrael. Amen!
Being a grandmother is a load of fun! I’m loving the baby therapy, just sitting for long stretches of time staring at those perfect features. When Chezky “met” the baby, he stroked one big finger down his cheek. “He looks like me,” he said in awe.
“And he loves you already!” I added. “Uncle Chezky!”
Watching him hold the baby with such tenderness, I felt a prayer surge through me. Hashem, is this possible one day in his future? Please? Maybe? But I pull myself back to the present. Right now is sooo good!
So when Chaim V’Chessed contacted me about a new ten-week support group for moms of ASD kids, I almost turned them down.
Both Chezky and Ari were doing well in their therapy programs. I was basking in my new Bubby role and had no interest in digging down and pulling out who-knows-what mess from inside my emotions.
If they’d only had such a group ten years ago… I’d have been the first to sign up! But now? I could practically lead the group,I have so much experience.
Still, I didn’t say no right away. I’ve tried to start my own support group several times over the years. They’d always fizzled out after a few meetings. What would it be like just to come and sit as a bystander? Just to listen? Maybe share some info with others?
Go for it Tzippi! I chided myself. No one should do this alone.
Still, on the morning of the first meeting I panicked. Changed my outfit at least three times. Debated over which sheitel to wear. Fall-trendy? Bangs-demure?
Who would be there? What would they be like? What would they see when they looked at me? I lead so many different lives, but other than the retreat, I’d never formed relationships based on being Chezky’s and Ari’s mother.
I walked into the conference room and met the ten women, in what would become a weekly haven of support and understanding. But that first meeting was not without its shakes.
We each went around the table introducing ourselves. We represented different ages, different walks of life, different personalities. But what we all shared was a son with ASD, and we all knew we totally got it, what each one of us was addressing when they described their challenges. Until I mentioned that my son was living in a group home.
“Was that hard to do?” asked one woman.
“Don’t you feel you’re the only one who can understand him and love him?” shot back another.
Pain ripped through me as they put their finger on the very sore spots that I still grappled with. I knew they weren’t meaning to be harsh, but looking around, I realized I was the only one in this group who had made this decision, who had gone through out-of-home placement. Facing their questions, I realized, I needed a whole support group just for this detail alone. It was more than a year since Chezky had moved out, and I was still reeling from the agony of that decision.
Still, the support group itself was way more than I’d dreamed of. Each woman had so much insight, so much information at her fingertips, and I was learning so much! And here I thought I’d be the archaic grandmother of the group. It didn’t seem to matter what ages their sons were; they were all committed to helping their child utilize his potential to the best of his ability. There was cohesiveness and respect in the group, and I was proud to be a part of them. I looked forward each week to those two hours of inspiration and validation.
Of course, the best-laid thoughts of mice, men, and moms are bound to be disrupted.
While Chezky was doing so well with his new medicine regime and the programs we were implementing both at home and in his dirah, Ari was deteriorating.
He was diagnosed with ARFID, Avoidant Restrictive Food Intake Disorder. While ARFID mimics anorexia, in Ari’s case it stemmed from sensory dysregulation rather than weight and body image.
Still, the trajectory of the disease followed the terrifying path of anorexia. He was losing weight rapidly, could not bring himself to taste even foods he once loved. Many times he’d leave the room, simply because I was serving something he decided was disgusting. We were in a program monitoring his vitals, but therapists to treat this type of disorder are very rare. I was becoming obsessed myself, trying to count his calories and nutrition, while still avoiding confrontation. His mood and behavior was on a downward spiral, often exploding in outbursts of screaming and smashing things. My cherubic golden boy was becoming a monster.
And then came the dreaded line.
“Ma…” My daughter stopped me at six a.m. as I was getting Chezky out after a Shabbos at home. “Ummm, Ma… I don’t think Ari slept last night.”
Solar plexus blow. My world imploded.
Stop, Tzippi! Stop! This doesn’t mean anything. Not every all-nighter blows up into a psychotic beast!
But apparently, even in such situations, mom does know best.
The next two months were a nightmare. It wasn’t as bad as Chezky. We caught it in time, and got the meds adjusted. Plus, we implemented a strict feeding plan as malnutrition can contribute to emotional dysregulation. Surprisingly enough, Ari agreed to try eating. He wanted help, but was a victim of his own physiological volcano. He never became psychotic like Chezky, but instead went on explosive rants for hours at a time, often telling me how bad I was as a mother and how this was all my fault. I knew these words were a product of his illness, but they were still so ripping to hear.
As the support group’s ten weeks were nearing its end (although we were determined to keep it going ourselves outside of Chaim V’Chessed), I knew I needed more help. So when Chaya, our group leader, discussed the concept of EMDR, I jumped at the opportunity. I was still in therapy with Layee, but I felt it was time for something more intensive to work out the trauma I’d been through the last few years. Yet I was petrified at what feelings would emerge. Could I face them again? Would the cure bring more trauma than it would heal?
To be continued…
(Originally featured in Family First, Issue 851)
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