The Gift of Limitation as an Autism Parent

What Has Happened to Me

Frankly, as a mom to an autistic child, I have spent a lot of time resenting my limitations. Reducing my service at church, putting my own dreams on hold, turning down work opportunities, not to mention the social limitations. Limitation has often felt like this big unwanted thing that was happening to me.

Philippians 1:12-13 is instructive here: I want you to know, brothers, that what has happened to me has really served to advance the gospel, so that it has become known throughout the whole imperial guard and to all the rest that my imprisonment is for Christ.

Paul rejoiced at his imprisonment, arguably the most limiting experience possible, because it gave opportunity for those imprisoning him to hear the gospel. Paul rejoiced at his limitation because it offered him the opportunity to reach his limiters. When I started picking up what Paul was putting down I had to pause, shift uncomfortably in my seat, and then let that uncomfortable shift move into my heart and mind. I realized I had to begin the taxing mental journey of shifting in the way I view my life and my limitations as a mom to an autistic daughter. If I were to take the heart of Paul’s message and apply it to the circumstances of my life, I might paraphrase this way: I want you to know, friends, that what has happened to me has really served to advance the gospel, so that it has become known in the hearts of my kids, who keep me home and limited, and to those watching this parenting journey, that my limits are for Christ.

This is not the mission field I ever anticipated, but that wasn’t for me to decide.

Lean Into the Reality That Your Limitation is a Gift

Here’s another drip in The Autism Bucket: Lean into the reality that your limitation is a gift. You may not feel it, or see it, or like it. But being angry about it doesn’t make the limitation any less limiting, and it doesn’t change the fact that it was intended for God’s glory and your good. Lean into this reality for a week instead of fighting it, and see how it feels.

One limitation I’ve resented, and that I am now trying to embrace, is the fact that despite the fact that my children are aging, the ritualized, lengthy bed time routine is not going away. Far from it. It is getting longer and sometimes I wallow in the fact that I spend my evening “working” instead of resting. While it sounds pathetic, and a part of me knows it is in fact pathetic and whiny, I am usually very tired at the end of the day (5pm!) and my honest feeling about it has been resentment toward the fact that no part of my evening belongs to me. Bathing takes an hour, dressing for bed and brushing teeth still require assistance, and the wind-down-process is not quick. We spend 30 minutes reading together, because Evie’s reading is two grade levels behind and she can’t do this on her own, and then I lay with each girl for about ten minutes. Evie needs the sensory input of “patching”– her word for gently scratching her arm– a prayer, and a song in order to go to sleep. I can hardly spend this time with her and leave my youngest with crumbs, so I finish the routine by joining her for ten minutes as well (at which point she asks me difficult questions such as “Why does God let people have Autism?”). As I hear about the simple bedtime process for children much younger than my own, I’ll be honest, I get mad at my kids. So, historically, I have approached the limitations of my evening because of the way-too-long bedtime with an attitude of frustration instead of anticipation of opportunity.

After hearing a teaching on Philippians 1 last week and applying its message to my life, I’ve found the grace to begin embracing my limitations. I’ve started with bedtime. In doing so, I’ve been able to notice and participate in so many joyful moments that I would have otherwise missed. Honestly, moments I have been missing. For example, bathing has always been a major struggle for Evie. Taking a bath or shower during which her hair and body is washed is a sensory storm that has caused many meltdowns and general hygiene refusal for my girl. Having committed myself to accepting the situation and embracing the limitation, I’ve begun taking the time to wash her hair in the sink using our sink buddy (highly recommend!), and thenmoving to the tub (no showers for her) where we use sudsless soap to clean her body. This takes way more time than I’d like, and the thought still creeps into my mind that she should be able to bathe herself at this point, but it has now become an hour of quality time with her. She chats, I listen. She asks questions, I respond. We are getting quality time that was hard to come by otherwise.

Also, since wind-down-time is a must, we have resumed our nightly Bible study, with The Biggest Story curriculum (also highly recommend!). As a result, Evie’s newest enthusiasm is Moses! She has been watching the 1998 movie The Prince of Egypt on repeat and we have had so many fun moments of watching and singing together as I get nostalgic and she feeds her enthusiastic interest. By embracing and pouring into the nightly routine of reading together that I once resented, her desire to know and understand the Bible is growing. She is constantly curious about Scripture, asking thoughtful questions and making insightful observations. She even won a medal for Scripture memorization at church, after which she excitedly told anyone who would listen that “I am so good at Bible verses because autistic people have very good memory”. Accepting my God given limitations has not only created opportunities for gospel advancement, but it has allowed me to notice the ways that God is making advancements in Evie’s heart. Where I tend to be consumed by the difficulties, slowing down has opened my eyes to the pleasures, the beauty, and the grace at work in her life.

Bedtime is taking even longer than it did before I accepted the limitations of my evening, but it has become a joy, and not a drag. A healthy dose of reality dictates that some nights we get home late, and the joy wanes. Or inevitably some other event has caused disregulation, thereby preventing the nice little chat I have come to appreciate. Other times, I am just so exhausted from a difficult day and the only opportunity I am anticipating is the one that renders me unconscious for a good night’s sleep. Not every night will be idyllic, but the fact remains that changing my perspective ensures that regardless of the circumstances, I can view “whatever is happening to me” as an opportunity.

The Most Important Skill of All

There are so many skills and strategies that autism parents can learn to help their child with daily life— visual schedules, social stories, fidget toys, declarative language, noise reduction headphones— but I’m coming to find that the most important skill and the most effective strategy we can learn and grow in is simply to mirror your child’s pace, let them process in their own time, and embrace the time spent there. When a simple task like getting dressed or brushing teeth takes more time than it would for a typical child, try viewing it as time spent with a person who needs the consistent and practical love of Jesus, instead of as a limitation to other more important uses of your time. Not only will your child feel valued and respected, not only will you find surprising peace and joy and success, but your reward will be great as you come to see that “what has happened to you has really served for the advancement of the gospel” in your precious child’s heart. I believe this is how Jesus would love our neurodivergent children, offering them the good portion that cannot be taken away from them, instead of a clean home and a busy schedule (Luke 10:41-42).

Your limitation is your opportunity. Give yourself permission to slow down and enjoy your child. This may mean having to make choices regarding social invitations over the weekend, perhaps limiting to one per weekend. It may mean allowing an extra hour before bedtime (if your child can handle it) in order to slow down the bathing routine. It may mean sitting down on the ground and studying a leaf, or walking around collecting acorns for an amount of time that is, to your mind, excessive. Begin to notice where you have the urge to rush, and make it an opportunity for the gospel in your home. When you mess up, remember your sins are many to be sure, but His mercy to cover them is more.

Slow down. What has happened to you is a gift to your child, and believe it or not, you. Let the pace of this life you live be an opportunity for God to grow big in your child’s eyes, an opportunity to teach them to pray, and an opportunity to dazzle them with the persistent love of Jesus.

xo,
Em