“For me writing has always felt like praying… You feel that you are with someone. I feel I am with you now, whatever than can mean.”
~Marilynne Robison, Gilead
Some things are so raw and close to the surface I find I can’t talk about them. But I can write… and process… and write some more. I can tell the story here and it makes my thinking, my experience visible.
The day started with Hope in tears. She’d gone into her sister’s room to say good morning and Rhema had grabbed her by the hair and pulled out fistfuls. One look into her eyes and I knew the day would be hard for Rhema.
But we had to do the day. So I brushed her teeth, washed her face, cut her fingernails, and hoped for the best.
Two weeks ago I took the girls to the Kid’s Club at our local Y. This is the place where they watch your toddlers/young children while you work out. (Yes, Rhema is 9, but she needs constant supervision and support. The Kid’s Club seemed like the only possible fit). I didn’t go about this lightly – there was much planning and discussion with the director of the program (and praying on my part). Amazingly things went well, Rhema enjoyed coloring with markers the whole time. But even after a successful second visit to the Kid’s Club last week I decided that would be the last time – it was too nerve-wracking for me!
Today Hope had swimming lessons at the Y. Since Brandon deployed it’s been a little crazy managing the schedule. I have to pick up Rhema from her afterschool therapy at almost the same time that Hope’s lesson finishes.
When we got to the Y, Rhema made a beeline for the Kid’s Club. I smiled – my girl’s a stickler for routine even if it’s something she’s done only once or twice. I steered her in the direction of the pool and tried to explain that we were just there to pick up Hope, no Kid’s Club today. We fetched Hope and on our way out, Rhema bolted towards the Kid’s Club room. I asked if I could just let her color for a few minutes and we’d be on our way. I could tell that she was becoming agitated. She’d only been coloring for a minute when she began smashing/breaking off the marker tips. I did not want her having a meltdown with toddlers in the room so I very ungraciously dragged her out of the room with Hope close behind.
She darted into an office right next to the entrance/exit to the Y. Much to the surprise of the two people in the office, she flopped on the floor in full meltdown mode. She kicked over a trash can. When I tried to pick up the trash can, she bit the edge of the trash can and wouldn’t let go. The ladies in the office were instantly on their feet asking how they could help. I said, “She really wants to color. Can I borrow a pen and paper? Maybe that will calm her down.”
But when we gave her the pen and paper, she was so upset that she tried to eat the pen and paper. A woman named Carol helped me pry pieces of ink pen out of her mouth. Then Rhema turned on me, pulling out large clumps of my hair. I’ll never forget Carol trying to hold my hair back while my daughter clawed at me. It’s one thing to be “aggressed on” at home, it’s another thing altogether when it’s happening to you in public.
There were moments when I looked up and saw concerned people standing at the door. There were moments when I worried about Hope and then realized with relief that she was being “entertained” and distracted by someone who had taken her off to the side.
I reached for my phone, “Rhema likes music. I can put on a song…” But I was shaking, my brain stopped working and I could not figure out how to put the volume on my own phone. I tried to give her my phone anyway – she’d know how to put the volume on. She broke the Otterbox case on my phone and threw it down. Out of control, she pulled things off desks, kicked the copier, clung to file cabinets.
I desperately wanted to go home and hide and cry, but knew I could not get her to the parking lot until she calmed. We had to wait it out. Carol was there, just there. She put a hand on my shoulder. She turned on some music. I found my phone, put on a game, sat with Rhema, spoke softly to her until she settled. I don’t know how long we were there. Finally I was able to take her by the hand and stand her up. I think someone gave a little cheer.
I will never forget the women in that office. Total strangers and yet there was no judgement. They showed only care and compassion for the three of us and I cannot begin to express how much it meant to me. Carol said she didn’t mind if Rhema messed up the office, she just didn’t want her to hurt herself. Later I found out that the staff had given Hope cool sunglasses and a water bottle. I didn’t even really get a chance to say thank you. The way they handled the situation, the way they treated us –their kindness and understanding – I’ve tucked it away in my heart forever.
I’m struggling with publishing this post. I never want to risk portraying my precious girl in a negative light. The thought of her eagerly heading to the Kid’s Club today just levels me. She so wanted to do well. She just could not cope with the change in routine, not today.
Writing it down doesn’t make any of this ok. No. My daughter has autism and some days it really hurts. My whole family hurts. But telling our stories, the good and the bad, helps. I want the pain and the gifts and the hope of Jesus in our life story to spill through my fingertips and onto the screen. I want to share about the Carol’s of the world. I want to share about our flavor of autism and know that someone out there gets it. And know that we’re not alone, that someone prays, and another one cheers when we’re up and cries when we’re down. I’m so very grateful for that.
***Update: I was able to send a thank you note to Carol and this was her response:
Thank you for your kind words. J.H. and E.F. are the staff who stayed with Hope. We now know that Hope can get her eyes wet because she is 6 and she looks very cool in her new sunglasses. A.W. also stood by in case we needed more help. We were all so pleased for Rhema, you and Hope that Rhema was able to get to a comfortable place and head home and back to her routine.
Your blog posting is so powerful and poignant, it speaks to the struggle that is Autism. Your words of gratitude will never be forgotten. We never know who we will cross paths with and yesterday was time to for our paths to cross. The Y is here for you. If there is anything we can do to help, please let us know.