Care plan

Before Rhema’s surgery on Tuesday I worked with a Child Life Specialist at the hospital to develop an Autism Care Plan. The Plan is designed to help medical staff address the unique non-medical needs of patients with autism such as communication methods, environmental adaptations, and sensory preferences. The goal is to make the hospital experience as comfortable as possible whether it’s speaking softly or changing the lighting in the room or providing weighted blankets.

Rhema’s Plan was very detailed and I actually felt excited to see it in action. I knew that her Plan had been attached to her medical record but I was amazed to find that every nurse and doctor we worked with had really read the Plan! They understood that Rhema is absolutely offended by hospital beds – she’s had one too many EEGs and there’s no way in the world she will sit or lie down one. So they removed the bed before we got to the pre-op room. Also, the nurses knew not to attempt getting a blood pressure while she was still awake.

They had an iPad ready to go with her favorite games and a Jazz station cued on Pandora to help her through the waiting period. There were coloring supplies and fidget toys. To help prepare her for getting a mask on her face, the Child Life Specialist coated the inside of the mask with cotton candy flavored chapstick and Rhema was intrigued and put the mask to her face several times!

I was able to be with her in the OR until she went to sleep. I held her (or tried to) while they put the mask on – of course she put up a good fight – she tried to run straight out the door.

Later in the recovery room she woke up slowly, humming.

A recovery nurse told me, “I’ve been doing this a long time. I don’t think I’ve ever had a child come out of anesthesia singing. She has a lovely voice.”

“I get to hear her song every day,” I said, feeling like the luckiest mother in the world.

I’ve been clinging hard to the Truth that my God has a care plan. Sounds simple, but it’s so hard to believe. I mean, really believe. We go from crisis to crisis and sometimes it seems the stream of problems will never let up. We are troubled on every side. But like Rhema when she’s got an ink pen clutched in her hand (about to color the world) and there’s no prying it out, we can hold on to this:

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” ~Jer. 29:11

He’s got this. He loves us and knows us, every little detail – down to the number of hairs on our head. He sits with us in the waiting. Surrounds us with help and encouragement. Prepares our hearts for what lies ahead. Holds us to the end.

feet

My heartfelt thanks to the staff at Mass General. And deepest gratitude for family and friends who send prayers and support (…and pizza and casseroles and McDonalds gift certificates. ;-) ) Thank you.

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13 thoughts on “Care plan

  1. Wow. Such a cool hospital. Such a cool metaphor. My care plan involves chocolate, wine, candles, girlfiriends, walks in the woods, Heather Williams music, and the Word. He has, indeed, provided a bundle of those every time I’ve needed it.

  2. Oh, I love that Rhema (and you) were so completely loved and cared for by the staff at Mass Gen! And that our God reaches out and does the same for us too. Thanks for such a beautiful reminder!

  3. Loved reading this; it prompted me to contact the hospital system I use about talking to them or presenting, anything, to educate their clinicians about autism in the medical setting. IT NEEDS TO HAPPEN. Adult hospitals are totally and completely unequipped… I know far too well. I love what I’m hearing for children’s hospitals. Praising God for how well it went. Sending hugs to all of you <3

  4. “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” ~Jer. 29:11

    He’s got this. He loves us and knows us, every little detail – down to the number of hairs on our head. He sits with us in the waiting. Surrounds us with help and encouragement. Prepares our hearts for what lies ahead. Holds us to the end.

    This. Just this. Exactly what I needed tonight – as I am facing some uncomfortable conversations in my workplace (joys of being a manager) I have to cling on to this metaphor. God has a care plan for me. He will comfort me or lift me up as needed. He will protect me and have His way in every situation.

    Thank you for sharing your words with us!

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