Waiting in the Land of In-Betweens

It happened at the end of a long church conference. I was exhausted, but the preacher was in no hurry. I hate it when they don’t hurry. 

“If you are the parent of a special needs child, come up and get prayer.”

I wanted to slip out the back, but six of our church staff were with me, and I knew they wouldn’t let me wimp out like that even if I tried. They had held up my arms for too long.  So I dragged myself to the front of the sanctuary where a line of young ministry students stood eager to pounce. I chose a tall Canadian man in a brown, business-like sweater.

“My son Jack has severe autism,” I told him beneath the ringing synthesizers. “He’s seven, and he can’t speak and… yeah…” I stopped there to brace myself for a loud and sweaty prayer. But my Canadian merely closed his eyes and started to whisper. I leaned in to hear. He sounded gentle and confident. A prince next to his father’s throne. And then it happened: He said the word “breakthrough,” and I started to weep. 

It was a frustrating moment because I thought I was done with all that. For more than two years, I had walked that familiar path of grief. Denial I remember, but only because my mom used it in an email, as in: “I think Jack has autism and you are in denial.” I laughed, thus proving her point.

Anger and Bargaining came and went quickly, but Depression lingered. There were two, maybe three years of numbness and hiding places. There were specialists and therapies for Jack, and for me, a new personality that wanted to be left alone. I used to be an extrovert, they say. 

At the time, I failed to recognized the commonness of my journey. Only when I reached the end of it did my friend tell me,

“You’ve been going through the stages of grief, and I think you just reached Acceptance.” 

It was a surprising revelation for two reasons. First, I had always thought of grief as something that follows funerals and longs for the past. I missed the obvious other kind; the kind that slumps forward, casting a permanent shadow over tomorrow that can no longer be.

But even more significantly, my friend’s assessment of my progress was spot on. I had come to terms with Jack’s condition. We had been playing together and laughing together like never before. Even on bad days, when he might be in the middle of an epic melt-down, I could still feel peace. Joy, even.

And yet despite all this, I still found myself at the front of a sanctuary in a snotty mess. Still craving “breakthrough” more than anything in the world.

Seven months have passed since that night, but I haven’t really left the foot of the stage.

I confess I want holes knocked through the wall that keeps my boy distant from me, my wife and children. I want sunbursts of language, comprehension, and relational abilities. I want him to have a future.

Some have told me to let this hope die and embrace my new normal. They say autism is part of who my son is, and if I struggle with it—if I treat his condition as a thing to be cured by human or Divine hands—I am rejecting him. This viewpoint has its merits, but the accusation inside it knocks the breath out of me, because I already accept and embrace my son. For everything he is. I delight in him, his curiosity, his affection, his laughter. And if he never learns speech, or safety, or independence, I will love him no less. 

Others have told me just to try harder and refuse contentment. They imply that it’s my fault Jack hasn’t been healed or cured yet, and if I would just get with the right therapy or take authority (i.e., pray louder), then I would finally catch my breakthrough. That accusation hurts, too, because they don’t know how hard we have tried; how many nights we have held him, wept and begged God to intervene. 

Here is my dilemma: if I pray too hard, I start fixating on change, and I become less satisfied with who Jack is today. But if I accept too hard, then I give up on a better future for my boy. And try as I might, I cannot see how to call that “loving.”

How, then, am I supposed to live? Neither of these extremes is correct. Not for me, anyway, and not for many parents of special needs children. I trust there is a solution, but it must come from Christ Himself. Who else knows how to hope all things, endure all disappointments, and love without condition?

So for now, I wait in a land just east of Acceptance and west of Breakthrough. Here, I get swept up in my son’s unbridled laughter, then in quick flashes of torrential fear. Here, I thank my Father for my boy, who is enough, and in the next breath, beg Him for more. This is where I wrestle with God: in the already not yet kingdom. The Land of In-Betweens. 

11 replies
  1. Steph
    Steph says:

    Thank you for this. I used to go to church, used to hang on words spoken in Bible readings, sermons, in prayers of others, in my own reading and prayers to know Jesus. Then, it was about staying in a marriage. I am divorced. I cannot do it for autism, my sweet 12 yeal old, nonverbal son with an autism diagnosis. I know I love Jesus quietly in the corner of my mind and heart, yet I do not seek Him out as I used to. I feel I cannot or emotion will overwhelm me and I will not be able to get out of bed everyday and do what I do. Reading your words is a tiny dose, just right, to remind me of that love I used to feel for Him. And, I know in my mind He still holds THAT love for me.

    • jason
      jason says:

      He does hold that love for you, Steph. Take your time. Eventually, you will be able to let yourself “go there.” And when you do, I pray you find His peace.

  2. Holly Kohler
    Holly Kohler says:

    I loved this post, Jason. While I don’t have a child with autism, I have one who has been an alcoholic, heroin addict, etc. for years. I recognize well the stages and the struggles. Your honesty has already helped another in their struggle. That is God’s gift through we who have the courage to be transparent in the midst of our questions, anger and pain. I am (finally) through the pain, through the anger, and through the questions…through the land of in-betweens to the other side. God won’t leave you there. I have discovered this place where rest is real, and where responsibility lies in the only place it really ever did…in Him. I am free to live out my responsibility…free to love. What a wondrous and peaceful place this is!! You are already there, my friend…for it is evident that you are loving well. God bless you and may He continue to reveal Himself to you in the midst of your journey…

  3. Chris Bailey
    Chris Bailey says:

    The words you write are beautiful and true. We have a 12 yr old son with Autism, he is non verbal and lower on the spectrum. My husband also struggled in the beginning as you did with denial, it was our sons pre-k teacher that took him into a meeting and basically ripped him a new one in a nice way. But now its our Heavenly Father that I am learning to trust and find the in between peace. Grief is a real thing and I believe we grieve for the child we thought we would have, not the child we received. I remember when our son turned 8 and the bishop told us he didnt need to be baptized because he was as pure soul and will sit on the right hand of the lord. That this was’nt a disability it was a gift from the lord, a child without sin was given to you. I always remember “Special children are given to special people”. That is what gets me out of bed in the morning.

  4. Joseph
    Joseph says:

    Hey Jason. Those are incredible words. I don’t say that out of flattery, but because of the power of the truth behind them. When I see people of opposite camps arguing with one another about how they have the corner on truth about a certain matter, I stand back and see how both camps have a part of the truth and are blind to the truth that the other camp has. I’ve seen this especially in theological issues and applying Scripture to life. I call these “delicate tensions”. The delicate tension between when to battle, when to rest. The delicate tension between when to give generously and ridiculously, and when to use wisdom to hold back. There is no easy recipe. It means clinging to God ever more.

    Don’t ever let go of EITHER ONE! If we’ll admit it, deep down we’ll always long for both rest & acceptance, and the determination to fight for an advance/gain/breakthrough.

    Sum it up – Eccl. 3. There are times and moments for everything. O God, give us a discerning heart to know what the right moment and time is, and to number our days well! Help us to know when to release, relax, and rest, and when to fight to gain ground. Deep down, our hearts long for both! Give Jason and Sara more of both, and the wisdom to know when is the right moment for either one, in Jesus’ Name. Amen.

  5. Leo Zanchettin
    Leo Zanchettin says:

    Hey, Jason. I don’t know how I missed this post, but I’m glad I’ve found it. I really like the way you’ve described this in-between land that we inhabit. I especially like the image of you being a “snotty mess” as you’re receiving prayer!

    I myself am four years into the diagnoses that changed our family’s life, and I’m getting convinced that this in-between land is not supposed to be temporary. Just as everyone’s life is a combination of already and not yet, I think we parents of special-needs kids experience it as well–only more intensely. We all rejoice in our redemption, even as we mourn over our hardheartedness and slowness to believe. We long for Jesus’ triumphant return, even as we struggle with our too-rootedness in this world. We look with wonder at our children and the mysterious joy they bring to us, even as we weep over their challenges and a future that seems so shadowy. It’s a dynamic tension that keeps us always looking for more while we relish everything we have. It’s a similar dynamic to the way we can celebrate with such great abandon at church on Sunday and then wake up on Monday ready (hopefully) to take up our spiritual armor and go out and build the kingdom. I don’t know that we will ever find our way out of this land–at least not in this life. And so acceptance comes in waves, just as grief does.

    But that’s okay, because I also believe that there is a calling embedded here. For years, people have been praying, “Break our hearts, Father, with the things that break yours.” It’s a stirring, almost romantic kind of prayer that can make us feel good just by vocalizing it. Well, your heart is broken in a way that many people can’t understand. And out of that broken heart comes the aroma of a life given to the Lord. Again, it sounds so noble, but we both know that it can also hurt like hell. We don’t always get it right. We don’t always smell so pretty. There are days when we downright stink. But nothing moves me more than the snotty-messed tears of a fellow traveler on this road–and I’m sure that many in your church family feel the same way. Even the ones who won’t admit it.

    So there you have it. I hope you don’t mind these somewhat random musings of an autism father from the other side of the continent. Really, this is just a long-winded way of saying thanks for your words and your witness. May we both learn to make the most of this in-between land–just as Jesus did.

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