As I continue reading Unbroken Faith by Diane Dokko Kim- her book on having an autistic child who was also diagnosed with ADHD/ADD at the age of 2 and the crisis it brought personally, professionally, and spiritually- my eyes are continually being opened wider. Here is one example why:
“A rogue wave called autism had struck, leaving me sputtering with shock and indignity. In its wake, I was swept along into a career change I never signed up for: full-time caregiver, case manager, disability advocate, and traffic controller. Now my days were spent floundering amidst the waves of therapeutic professionals who cycled in and out of our home, specialists I’d never heard of before with a dizzying array of acronyms: LSW, ABA, OT, SLP, BCBA. Daily, for forty hours a week, as soon as one wave rolled out, another rolled in.”
“Dipping into the reserves of a faith bottomed out, I sagely accepted my new calling: Help the Poor Child. A forced perma-smile betrayed clenched teeth that gritted out my new mantra. “I’m trusting God. I’m trusting God. I’m trusting God…” But inside, I was wrecked. Our son was cognitively disabled; I was now spiritually crippled. Both of us needed urgent and intensive intervention. But therapists only came for him.” (pp.39-40)
It was that latter phrase which struck me: They both needed intervention but therapists only came for him. That is a common problem I have encountered when I have talked with people of special-needs children. The child gets the attention, but what about the parent, the caregiver? It is sort of like the pastor who gives and gives without taking time off and then finally finds himself burned out, having an affair, or needing a therapist because of depression. Many parents of special-needs children are forgotten amidst the difficulty of their lives. Diane is not afraid to admit it led to a real crisis in her faith and she hit rock bottom. The sad part is there will be those “Christians” who will chide her or condemn her or think less of her because she is willing to admit that. IMHO that is one of the first steps needed to be taken for healing to begin.
My takeaway: instead of condemning or even opening our mouth, perhaps a listening ear or a sympathetic “Here, let me carry that load with you for awhile” is what is needed. While the attention is rightfully on the child, let’s not lose sight of the parent(s) who are also struggling and often feeling abandoned. I personally believe that is exactly what Jesus would have done.
Jo, Tami and I are leaving for Ohio today and will be back in town on Saturday after watching Braden (grandson/nephew) play a few games of baseball. I’m not sure about posting tomorrow but your prayers for safe travel sure would be appreciated.
Care for the caregivers is essential. Whether it is an autistic child, a sick spouse, or aging parents. A person can’t provide care when they are empty.
Praying for safe travels!
That sentence stands tall Ryan: a person can’t provide care when they are empty. Thanks
I can only imagine how difficult Diane’s life became. We often forget that a caregiver’s role is 24/7/365. Those who step in and help from time to time only get a glimpse of the non-stop drain on caregivers.
Safe travels and good times for you all!
I agree Pam. We only seem to focus on the person and not the caregiver. It is a drain and they need respite and often care themselves. Thanks.
Parents of special needs children can be the ones who get lost in the shuffle in so many ways, Bill, and that poignant quote encapsulates it all. Praying for your safe travel and fun with Braden!
Blessings!
Very true Martha. I pray for open eyes to see the need. Thanks for the prayers.
Good point Bill. Praying for the care giver and the families that are living in the household. It is hard on the entire family. Everyone in the household is effected, and has to make sacrifices.
Praying for safe travels and no traffic delays on the interstates.
You are right Gail. It is hard in the whole family. They are wounded also. Thanks for the prayers
May we learn how to love well, love faithfully, love lavishly, love in practical hands on ways.
Thanks for this, Bill.
Your words sum it up well Linda. And you’re welcome
Thank you for sharing this—what a raw and honest reflection. It’s so true that the caregivers often carry the heaviest load, quietly and without much support. Your reminder to listen and walk alongside them is exactly the kind of compassion the world needs more of. Wishing you safe travels and peaceful moments watching Braden play.
Thank you Melody for the nice comment. I, of course, agree with you about the caregiver needing support. There are often the forgotten ones. We are having a good time and saw two wins yesterday. 😂