Writing out the sad

“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.

29 thoughts on “Writing out the sad

  1. Oh, this one has me choked up today. Big hugs to you. It really is not easy sometimes. Many times. And even when we fully know the aggression is not out of malice! Well done for having the courage to share something so intimate and raw. The world needs to know, not just about the different faces of autism, but also about the wonderful people out there who really are compassionate and helpful – a great example to follow. And to Hope, I wish I could send her a medal of honour. It’s hard being a sibling sometimes… my kids find it hard with their brother. xx

  2. “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.”

    they do far more than you will ever know. along with living love.

    holding you all in my heart and prayers today.

  3. Thanks for sharing these posts. In the
    sharing it has helped me and I am sure so many other to better understand how autism can affect a families daily life. Then there are the posts that has nothing to do with Autism, that shows glimpse of your life. Again thank you, I am sure some are harder to write then others. I still remember your new rain boos 🙂

  4. Tears in my eyes and pain my heart for you. I can feel the sad in your words. I can feel your gratitude for those in the office. Your pain for Rhema and Hope and yourself. Connecting and sharing your story is important. Keep writing the good and the sad. Thinking of you today. xoxo

  5. I can’t imagine how I would get through without your loving honesty. It is so important that the world around us understands our realities — the good and the bad. And framing it all in a respectful, genuine way is a gift that you have.

    I admire Rhema. I admire Hope. I admire you .. All because you’ve allowed your story to flow through your fingertips and out to hearts like mine who desperately need to hear it. To know that we are not the only ones we struggle and who rejoice and who struggle again and rejoice again. Our unique cycle of love, pain and hope is something few can understand. But you. Your willingness to put it down and hit the publish button is nothing short of beautiful.

    Love you so!

  6. “I’m struggling with publishing this post. I never want to risk portraying my precious girl in a negative light.” You never could do this. Through your words we all see her as someone beautiful and someone in pain, and our hearts cry out for her. Writing out the sad is the healthiest, Jesus-trustingest thing you can do. Sending all my love to all three of the Russell women today.

  7. Oh my hat, what a post. Thank you for sharing your story and for reminding me that I am also not alone. And; that there are wonderful caring people out there who are understanding and compassionate. Take care. xx

  8. Thank you, Jeneil, for sharing your deep love for your daughters, the Carol’s of the world and the Lord. Keep on writing.

  9. Thank you so much for sharing this today. The sheer exhaustion that you describe is all too familiar. Too many of us have been there, waiting for the storm to pass. But I am so inspired by those women who stayed with you and helped you. Carol’s comforting hand on your shoulder may as well have been the Lord’s hand, because through them, He is with you. Lifting your whole family in prayer tonight. Hugs.

  10. Big lump in my throat after reading this. I love hearing about people helping people. What a blessing and a living example of God’s love. But I’m also choked up just thinking about you, feeling for you in those tough moments and just wanting to be a shoulder for you to lean on. I say it all the time, but you are so *good*, Jeneil. I know you’re not perfect, I know that. But you are *good.* God picked you to be Rhema’s Mommy for a reason, and in so doing, so many others of us are blessed by your example. May God give your soul peace and rest and comfort.

  11. Hello Rhema’s mom! I, too, have experienced episodes just like the one you have described. I am so sorry that Rhema is going thru this, and that you and your family are seeing her struggle. My son is 20 years old and we have been through so much. He is a wonderful, wonderful son, loving, kind, talented, handsome, and funny. We have tried medications. therapy, etc. What we are doing now is following a protocol described in the book, “Hope for the Violently Aggressive Child”, just what every mother wants to read, right?!?!? Anyway, the treatment is based on the belief that our kids, and those with bipolar, suffer from an immature adrenaline system that misfires for things that normally would not cause an adrenaline rush. check it out, I heard about it from another mother who is having great success and we are noticing some success as well.
    Additionally, follow the FB Page called “Autism Discussion Page”, the moderator is fantastic and has valuable info posted on a daily basis!
    I wish you luck sister, know that you are far from alone in this, and your posts are bonding us all together.
    Take care!

  12. You are not alone. My son also meltdowns in public and in my experience, they aren’t gracious. I pray that people will start becoming understanding and compassionate of my son’s out of control feelings.

  13. I’m so so proud of you as a mother and what you’ve done raising 2 beautiful daughters. I’m not religious but I hope your God shines a special light down on you.

  14. The hard days are so very hard. But it affords us a chance to see the goodness in people that we would otherwise not have gotten to see. That you were able to recognize that and took the time to send a thank you note is unbelievable to me. The way you deal with the hard days makes me want to be a better, more patient, just better person.
    All we all want is for you and your girls to be happy and safe.
    I’m constantly sending prayers your way!

  15. Love and sympathetic tears here. Sharing your lives’ stories is so important. I am so thankful these kind people can understand and show their love and support. I am thankful for you, too, Jeneil!

  16. I wished while reading this that I had been there to help. Then I thought perhaps if I had been there I’d have just been another useless onlooker who couldn’t do anything to make anything better. And maybe I’d even have embarrassed you with my sympathetic face. Argh. If I sang to her would that have helped? I guess I just want to do something to fix it when I read this post. Sigh *hug*

  17. “In Christ alone, I place my trust
    And find my glory in the power of the Cross
    In every victory, let it be said of me
    My source of strength, my source of hope is Christ alone”

    Donald Koch;Andrew Shawn Craig

    In Christ alone. Thank you for sharing…for healing, for target praying, for the growth of Rhema and the glory of God’s grace and strength.

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