we are sitting in the empty sensory room at church with only the dim lights lit. I am listening to some of my favorite christian songs to help to calm myself after a long week of battles. He is sitting across from me chewing on his finger and scrolling his iPad with a stack of 7 Veggie tail VHS tapes and I cant help but love the silence. One moment of safety from the world. I cant help but to be thankful for even just this one room. However isolated it must be sometimes isolation is necessairy for us to remember who we are.
I remember when he couldn’t speak and the questions ran through my mind constantly, “would he ever speak?”, Would I ever connect with my son? Will it always be this painful?. I remember when this room was made. I remember who made it. I remember why it was made. It was made for us and all those that would come after us. It would be staffed with those that loved us. By another mom in our situation. Its crazy when I think back to life before. Back before the therapies began. Back when I was just realizing that something was different… off… I never thought this could be.
Him right across from me watching Veggie tails, speech device to my right and his beautiful, calm face across from mine while holding my hand. He can talk now. He can answer most of my quesitons. He can tell me what he needs. He can blow me kisses. Its funny how when you shut out the world and look back you can remember the faithfulness of God. You can see his hand on you and how he has answered your prayers all along and really You were just too busy to see his work.
It’s so easy to see the hard. Its so easy to see the struggle. Its so easy to be angry and forget to be thankful. I get it. I fall to this struggle on the daily. If I’m honest one of my greatest struggles is with anger. The questions I ask, if I am honest, are not questions I should be asking. I need to stop asking why. I need to start holding all of my negative thoughts captive and matching every angry question with one blessing my situation has brought me because there are many.
Life in my world always seems so out of control and the more I try to control it the less control I find that I have. If my sons diagnosis should have taught me one thing its that no matter how hard we try we control nothing. If we are looking for control within ourselves we are going to be exhausted, angry, fumbling chasing the wind for one reason and one reason alone, it is not for us to control.
It is not me that brought my son this far. It is not even the therapists really. It is not in the hands of people. The war with autism is less physical than it is spiritual. It is a test of endurance not a sprint. Nothing comes by chance. There were a lot of times that I lost trust. I lost hope. It did not end well. I had to fall to find that getting back up was the true test. I had fallen due to lack of faith. Lack of hope. Exhaustion. Feelings of loss of control. I fell, I fell far but I got back up to run the race and each day I am being refined in that race.
The spiritual fight when you care caring for a child with autism is harder than I could even begin to explain. It goes far beyond the questions of why? It extends to things like not being able to attend church meaning you lose that fellowship, the accountability, you feel outcasted even if you arent. It means empty rooms alone while the sermon is absorbed by the congregation in worship. It means missed bible studies and community groups. the battle with autism is very much different than that of a physical illness. A lot of times within the church there are meal trains organized to help out families (which is a wonderful thing) but I am sure pretty much anyone caregiving any type of chronic illness whether physical or psychological can attest that our doors remain closed and the same rotation of meals that render the most leftovers adorn our tables.
Church can often be a place of pain when you see the children that were once in your childs nursery class up singing with the children and your child is not on stage with them. You sit in the pews watching children being baptized and you wonder in the back of your mind if your child will ever understand enough to stand in that pool with the pastor.
If you are like me, you can see how it it is easy to just one day start avoiding the pain until one day, you realize you have not been in church for over a year. Your bible is closed and dusty and you stand there watching your son who is 8 years old, back in diapers sitting in silence. You realize that when a christian song that you used to love comes on the radio you flip the station without a thought and continue driving in the wrong direction both metaphorically and spiritually.
I dont know what it is about just being in the church building that is so calming. The bible teaches that the church is not the building its actually the collective of all of Gods chosen. I guess what I am doing in this is writing a call out to churches. There is an entire group of Gods chose that are lost and is up to us to find them. I am one of them. Like that casting crowns song
But if we are the body
Why aren’t His arms reaching?
Why aren’t His hands healing?
Why aren’t His words teaching?
And if we are the body
Why aren’t His feet going?
Why is His love not showing them there is a way?
It is time that this becomes a discussion in every congregation. We are losing many. Many who have ceased praying in the battle they are facing. We are turning our eyes inadvertantly because we are afraid to say or do the wrong things when really the only wrong thing to do is not show Christs love to those that are suffering.