Jason Hague: Feeling Both Joy and Sorrow with Autism
Jason Hagues shares his journey from feeling numb, moving to aching joy with his son Jack, who has autism. There are seasons of both sorrow and joy.
Jason Hague: Feeling Both Joy and Sorrow with Autism
Jason Hague Bio
Jason grew up in the piney woods of East Texas. He is the associate pastor of Christ’s Center Church in Junction City Oregon (near Eugene.) He has served on staff for Youth With A Mission for many years. Jason and his wife have been married for nearly twenty years, and they have five amazing kids. He has a passion for writing, and enjoys creative, visual storytelling. Jason often speaks often about the intersection of faith and special needs, due to the fact that he has a son, Jack, who is on the autism spectrum. He is the author of Aching Joy, which I highly recommend.
Jack’s Diagnosis
Jack was a lively and interactive child, but at age one and a half to age two he started to drift. Jason says he didn’t even notice at first that he wasn’t interacting with them anymore until a friend mentioned that Jack had never given him eye contact.
He and his wife researched a little bit but were certain whatever was wrong with Jack wasn’t autism. He made little gains and to them, that was further proof he was doing just fine. Finally Jason’s mom emailed him and said, “I think Jack has autism and I think you are in denial.” He laughed when he read it, which he is pretty sure people in denial do when they are accused of being in denial.
But they had to face the facts. Jack received his diagnosis at age three and they have been on a journey since then.
Facing Diagnosis
The diagnosis was a real blow for Jason. He and his wife had two daughters and he was anxiously awaiting a son to be born. His daughters seemed to be born speaking “Elizabethan English” and he took it for granted that his son would be the same.
He came from a loud and excitable family that loved sports. Jason imagined that when he had a son that they would watch football on Sundays and then go outside and play. He had all these visions in his head about what fatherhood was going to be like when he had a son.
After Jack’s autism diagnosis Jason realized that the dreams he had imagined might never happen and that he was going to have to recalibrate the expectations he had for Jack.
Lesson #1 Grieving & Feelings
Jason went through the denial stage and then he went through a stage where he was angry with God. After that, Jason went through this long season of sadness and numbness. Jason wasn’t sure how to deal with this grief.
Dealing with Grief
Some people don’t like using the term grief when you talk about a child, because you should be able to celebrate each child’s uniqueness. But Jason simply wasn’t able to do that at this point.
This is a concept Jason talks about in his book and I was so glad to hear it brought up. So many of us have dreams or expectations that we truly do grieve when they don’t happen. The diagnosis doesn’t have to be autism. It could be cancer or depression.
Jason explains that for some reason it is okay to feel blue when someone you love is diagnosed with disease–then people understand. But for some reason he feels it is controversial to mention feeling down after a child is diagnosed with some kind of mental disorder like autism. People feel they have to tiptoe around it.
Feeling Your Feelings
He has had some people say, “You should be rejoicing about your child and the beauty that they bring.” But in Jason’s experience you just can’t tell someone how they ought to feel. “Feelings don’t sing on command.”
If you are feeling sorrow or grief you can’t just wish your way out of it. “You just pray you can get past some of the heavy stuff so you can see the beauty.” You have to deal with the feelings you are actually dealing with. If you are dealing with grief, you have to acknowledge it and vent it. If you are angry at God. Talk to Him about it and submit it.
If you are sad, it is so helpful to acknowledge what it actually is and go through the process of working through it.
Anger and God
We also talked about how it is normal to angry with God during the grief cycle. So just get it out and vent to Him because He is big enough to take it and He still loves us. God also wants us to get through that and move on towards peace.
Jason calls this “upward condescension” in his book. We feel like we don’t want to talk about our grief to God because we are afraid He will be mad or can’t handle it. When in reality he sees our grief. He has seen anger, disappointment and disillusionment before. So if the emotion is there, let’s just tell Him that it is there.
It is common in these types of situations to have questions and ask, “Why God?” Don’t smother the feelings. “I think it is much more healthy to give them to Him in prayer” Jason shares. Tell God how you are feeling and ask him to come into that place and be with you.
Be real with God and He will help you through it.
Lesson #2 Look for and Celebrate the Small Victories
Looking for little victories didn’t come naturally for Jason. Jack is now thirteen and is still pretty much non-verbal. He begged for God to give his son words and be able to relate and have conversations. The problem was Jason didn’t see huge progress in communication and it was easy to sink down into sadness again.
Jason confesses his wife has always had an easier time seeing the small ways Jack improves. He tended toward the harsh reality of the situation, “Did you see that meltdown he had today?” He wasn’t going to sugar-coat it. But he realized that,”Some things are really good in the midst of the hardness. So let’s look for those things as well.”
Jason found that as he looked for daily little victories, everything changed. You can continue to pray for the big thing, but look for the small miracles as well. Learning this concept was a game-changer for Jason.
Lesson #3 Bearing Burdens With Others
Jason was always a people-person, but he didn’t realize how much he needed others until he was given something too hard for him to bear on his own.
So much of the pop psychology now is “You can do this. You were made for this.”
But some things are too big for us. We simply cannot carry the load. This is where community and people can help. When Jason was in depression his wife suggested that he go out with his friends, but he didn’t feel up to it. She would still encourage him to go. The times he went, he always came away feeling better.
He needed friends to talk and vent to. We pray for God’s help and God usually sends people to answer our prayer.
Jason’s Letter to God
In Jason’s book, Aching Joy, he wrote this very sweet letter to God once when Jack was going through a self-injury phase. Here is what is says,
Dear God. . .
I am afraid. . .
I have always believed the world is broken, and that you didn’t break it. That you are the Great Restorer. That your Son came to make all things new. This has been my conclusion after years of study and thought, but I have to admit, I am biased on this point, because I desperately want to believe it. I need to believe that you are truly, wholly good. That you don’t desire innocent children to live frantic and bruised. That you don’t lock up a boy’s future behind impaired speech centers in the brain.
I don’t know how to help my son, and I don’t know how to pray. I can’t just pray “heal my son” because I don’t even know what that means anymore. I don’t know what anything means.
So I won’t pray anything too bold for now. Instead I will just remind you that your name is Immanuel, which means “God with us.” Come close, Immanuel. Prince of Peace, draw near to my son, and give him rest.
Amen.
Jason read this letter out loud in a sermon once and completely broke down crying. He had to have the Elders from his church come and embrace him. But the sweet outpouring of love that came to him afterwards was amazing.
More Than We can Handle
“God does give us more than we can handle. We need to cry out to God and have our communities come around us and add strength.”
This goes to show that it is really important to be real. When we really are struggling, our answer to the question, “How are you,” shouldn’t be “fine.” It is important for us to open up and be real.
This is tricky though because even if we are walking parallel paths we are never truly going to understand one another because everyone’s circumstance is different. This is especially true for special needs families. They often feel like no one understands and so they don’t reach out.
But it is important to open up and say, “I know you might not be able to relate to this, so I am just going to tell you this is what is going on. And this is really, really hard.”
You can find friends in similar circumstances, but you can also be friends with people who have completely different trials than you do. They can listen and that is a lifesaver.
Friend can share in your sorrows and your victories as long as you are open and willing to share.
A Breakthrough with Jack
Jason’s constant prayer was that he would be able to have connection and a relationship with Jack. “God you created us to have relationships. I would love for him to understand how much we love him.” This prayer seemed to go unanswered for a really long time.
The Book and the Breakthrough
One day Jack brought a little board book home from the library called, “I Like it When.” His wife text him and told him he had to come home and see this.
So, Jason rushed home and found Jack on the top bunk reading the book laughing. Jason looked at the book and it depicted a big penguin and a little penguin doing daily things together. For example, there was a picture of two penguins holding each other’s wings and the book said, “I like it when you hold my hand.”
Then Jack pointed to the little penguin and the big penguin and said, “Jack and daddy.”
The next page showed the big penguin giving the little penguin a bath. It said, “I like it when we splash about.” Jack then said “Jack and Daddy.”
Of course by this point Jason is in a puddle of tears.
Jack had never used language like this before, and yet he was laughing and pointing at all the things that he did with his dad.
Jason realized that God had answered his prayer. Jack understood their relationship.
There is so much that goes on in the mind of a child with autism. It is almost like their are prisoners in their own little bodies and they are trying so hard to tell you what they are thinking. You have to learn to decode what they are trying to express when they quote movies or books.
The Viral Video
I originally “found” Jason through a video he made where he shares a sweet poem about Jack as he romps through the ocean waves. If you want to watch the video, Click Here.
The Backstory of the Video
Jason shares a little bit of the backstory. Back in 2016 he was listening to some music and it inspired him to write his feelings about Jack. He tried to cover his frustrations about some of the questions argued over in online forums: Is a person autistic or do they have autism? “So much of autism in general is confusing…and there is sadness and beauty at the same time.”
The message he wanted to convey to his son was “I love you.”
They filmed Jack and Jason on the beach while Jason recites the poem in the background. He wonders what the waves mean–the gains and losses with autism. There aren’t definite answers.
During the first filming his friend got his finger caught in his drone and they had to stop filming. They almost lost all the footage because it kept crashing. They went home discouraged. But his wife convinced him to go back out and try again.
The second time around the got all the shots they needed and were able to recover all the originally shot footage as well.
The Video
The video they made immediately went viral. He had like a million views in four days. It was crazy.
Jason’s favorite thing was that people started posting pictures of their kids on the spectrum and saying, “This is my son and he is beloved too!”
The comments he has received is that although the video was sad, it was hopeful and joyful at the same time. Jason thinks that having that combination of “this is hard but it’s beautiful” is what made the video work and go viral. If we can embrace the hard things we can also embrace the beauty.
Favorite Bible Verse
Jason confesses that he prefers to hang out in the Psalms because they are so heartfelt and full of longing.
But in this season of his life, his favorite verse is found in Romans [12:12], “Rejoice in hope. Be patient in tribulation. Be constant in prayer.” It is important to have hope in tribulation, and then rejoicing and hard times. But perhaps it is most important to be present in all of it. Be present in talking to God about all of it.
Jason feels this verse summarizes his journey. He didn’t know how to be present in all of it early on. Right now he is on a journey to have more joy in his life. He wonders if there is such a thing as pure joy.
The Pendulum
I shared the story that one of my friend’s grandparents told me when I was a teenager. They explained that our emotions are kind of like a pendulum that swings back and forth. The greater we feel joy, the greater capacity we have to feel sorrow. I have found that to be true. As I have gone through life and experienced greater sorrow than I ever experienced as a teenager, yet I also felt greater love and hope and joy than I had ever felt as a teenager as well.
So, it is important to cling to hope when we are hanging out on the sorrow side of the pendulum that it will eventually swing the other way.
Feeling Numb
Jason added that sometimes we think we can protect ourselves by feeling numb, but when we do that we miss out on the beauty. In Aching Joy, Jason explains that you can’t numb one side of your heart only. He feels this is what he tried to do early on–numb the pain and kind of mute everything. The problem was that it then muted everything–even feeling joy with his other children.
Jason found that as he was able to experience more pain he was able to experience more beauty.
It is important to lean into the pain and experience it–even though it feel counterproductive because that is not where we want to be.
Happy All the Time?
Some of the songs we sing at church are hilarious because they talk only about joy…”I’ve got the joy, joy, joy, joy down in my heart.” Or “I’m inside, outside, upside, downside happy all the time.”
Jason jokes that our kids should sue us for religious malpractice because there is also great sadness in this world, and we are just going to have to know how to deal with that.
So, we debunked the myth that if you are just good enough you will be happy all the time. It is simply not true, which is what I thought growing up.
When I crashed after Nathan was diagnosed I thought, “This is not how it is supposed to work.” And I began to look for proof in the scriptures that if I was just good enough good things would happen. And I found person after person who were good but had hard things happen to them. Think of poor Joseph in Egypt alone. That poor man! He had hard thing after hard thing happen to him.
Jason add that Jesus tells us “in this life you will have trouble” (John [16:33]). It played out in Jesus’ life and the life of 11 of the 12 disciples who were martyred. This life is full of difficulties. We have to be able to face that and move on.
The way you move on is by admitting it is there and dealing with it. Work through it with God and work through it with yourself. Otherwise you will live in perpetual disillusionment.
How do you answer when people ask, If life is going to be hard and challenging, why should I believe?
Jason answers that it isn’t just about this present moment. Sure, you could earn lots of money and insulate yourself from life and be “happy” without God.
But to him the Christian faith embodies what he sees in the world. We were built for love. We were built for beauty and life. And all of that has been damaged, so we experience deep pain. But Christ has come and given us a taste of redemption. He has restored us and that process of restoration is going on until one day it will be complete. That means that one day every injustice will be turned around and one day the things that hold Jack back will be gone. He will be able to speak and sing and say everything that was in his heart.
There really is a God up there and His Son really did give Himself in redemption for us so we can be with Him forever.
Jason and I agree that we are both looking forward to the day when we can truly talk to and communicate with our sons. This gives us both something incredible to hope for and look forward to.
