Another long morning of therapy. Photo credit Jill Aguilar.
“Why do You let this happen?!”
In 2005, we’d been living post-autism for a year. Three year old Jeremy had been immersed in aggressive therapy for 40+ hours a week. The New Normal left no time for naps, leisurely trips to the park, or any other typical toddler-activities.
Undergirding all the therapy was a severely restricted diet, and having to choke down a medicinal mud every three hours. Suddenly and without warning, all Jeremy’s favorite foods disappeared. I didn’t bother explaining as I threw out his beloved Goldfish, Cheerios and ice cream. How could a preschooler understand the potentially damaging effects of gluten and casein proteins on an impaired gastro-digestive system? It was enough that I knew.
At the time, I was recovering from surgery for a second, late-term miscarriage. We’d been trying for a another child, partly to make sure someone to take care of Jeremy after we were gone. But even that hadn’t gone according to plan.
As I observed the session slumped over in a Vicodin haze, I mused, “Boy. We sure are a sorry lot…”
Giving “Good Gifts” to our children
After twenty minutes of Jeremy’s howling in protest, the therapist glanced up at me. She was hesitant whether or not to proceed.
At the time, Jeremy had the attention span of about two seconds. While normal toddlers played and babbled charmingly, my child refused to attend to any instruction. He flitted about, aimlessly, spinning around until he ran into a toy, object or person. But never making any meaningful connection. He just flailed and bounced through life like a pinball; full of sound and fury, signifying nothing.
My beloved little, “Tasmanian Devil,” I was determined to have this darling blur using words, toilet-trained, and functional to the best of his God-given ability.
“Why won’t You DO something??”
If Jeremy could talk, he’d probably demand why I was just sitting there, letting this therapist torture him,
“Why are you just letting this happen? Why won’t you do something? Don’t you care? Why can’t I eat, play, nap and just live like any other 3-year old? It’s not fair!”
But as his mother, I knew how much I fiercely loved him and wanted the best for him. I was willing to subject him to all this, because he desperately needed to be at a higher level of functioning than he was now. It was for his own good, but would require great pains — of all of us– to get there.
For the good of those who love Him
There was also no way to explain any this to him. Certainly not in a way a non-verbal child with autism could understand. His comprehension was too limited. My child had no choice but to trust my heart for him, and just DO it.
Indeed, son. Why do other people get to have healthy children? Why do other women get to have easy, complication-free pregnancies? Why do other families get to have normal, easy lives? Why do we have to grind away for results that come so effortlessly to other people? Why does God let this happen to us? Doesn’t He care? It’s not fair!”
And just then, a thought downloaded into my head:
“If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!”
~ Matthew 7:11
If I could have noble ambitions for my child, how much more so my Heavenly Father must have a grander vision for me, that I could not fathom or foresee. If I could love my child with such zeal, so did my Father over me. He intends for me to reach a higher level of functioning, too, be it spiritual or otherwise,
Endure hardship as discipline; God is treating you as sons. For what son is not disciplined by his father? If you are not disciplined (and everyone undergoes discipline), then you are illegitimate children and not true sons. Moreover, we have all had human fathers who disciplined us and we respected them for it. How much more should we submit to the Father of our spirits and live! Our fathers disciplined us for a little while as they thought best; but God disciplines us for our good, that we may share in his holiness. No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it. Therefore, strengthen your feeble arms and weak knees. “Make level paths for your feet,” so that the lame may not be disabled, but rather healed.
~ Hebrews 12: 7- 13
No discipline feels pleasant at the time, but painful. And discipline doesn’t always mean punishment. It can mean training. If even I, being faulty and flawed can insist on training my son for his good, then my Heavenly Father also trains me, to strengthen my feeble faith and character.
“For I know the plans I have for you…”
It pains any good Parent to watch their child struggle and suffer. Our cries of pain and indignance don’t fall on deaf, uncompassionate ears. But a Good Parent also knows that children need to grow, mature, and forcefully push our way into maximizing our potential. He knows precisely when to permit what He hates, to accomplish that which He loves.
I knew clearly the plans I had for my son. Plans to stretch him, to bless and not harm him, to give him a hope and a future. Even if he never understands or hates me for it, I love him too much to leave him be. He’s just going to have to trust me.
Finally, I nodded to the therapist, “Yes. Proceed.”
And may it be to me as You have said, too.
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I read this and it was honestly hard for me because I think every special needs mom wants to do more for her kid to help but at some point, I had to just say “it is what it is, and our family cannot do it anymore.” so I actually pulled my kid out of OT and PT and have not put him in VT even though he needs it because we just can’t financially and logistically swing it. I have come to realize that my kid just has to progress at his own speed and I can’t speed that up or I guess i’m UNWILLING to speed that up because all that longterm stress finally caught up to me and I was literally bedridden 2 years ago with a digestive disorder that I know was stress related. Since then we’ve decided that we’ll do WHAT WE CAN For my kid but God just has to do the rest, and if He doesn’t make as fast progress or becomes a disabled adult, we did all we COULD do for him without killing ourselves in the process. I guess I came to just accept my kid for where he is today and my own limitations to help him get better. I also realized that me always trying to fix him was really hurting our relationship. I still have those “fix him” days but they are slowly getting better (hard hard head I am)
I guess I’m just being the devil’s advocate to your post…which seems to imply that we need to discipline our child like God disciplines us, so that he will progress.
Dear hg9,
I absolutely LOVE your insights. Thanks for bringing up such great points. I entirely agree!
You’ll note this was written from my 2005 perspective — when I was in the thick of Early Intervention. At that time, I was obsessed with “fixing” Jeremy, and completely stressed myself out over it for several years (I address this obsession/urgency in another post, Screwtape Screws w/ Autism). It was also the season, developmentally, that Jeremy did need the most intervention. Perhaps it was needed then; not so much now.
Eight years later, we’ve concluded –and come to peace– exactly as you have: “We’ll do WHAT WE CAN For my kid but God just has to do the rest, and if He doesn’t make as fast progress or becomes a disabled adult, we did all we COULD do for him without killing ourselves in the process,” and to just accept him for who and where he is today. We choose to celebrate everything he CAN do vs. stress over all he can’t.
Most parents go through similar stages in the SN journey: initial grief, trying to urgently “fix it,” then eventually, Acceptance. I’m so thankful that we -like you- did the best we could with whatever we had at that time. We continue to do our best for him, but with the appreciation that life is a marathon and not a sprint: A journey to be enjoyed, as a family, not “interventioned” through, as a Case. Our family has been much more balanced, richer and joyful as a result Hope that helps provide some perspective? God bless you Cat. I can tell your son is in excellent and loving hands 🙂