It was so unfair.
I had done my part in my son’s nightly routine and was ready to go to bed myself. But, no, I was not going to be freed of his needs (and demands) just yet.
A long time ago, I glued a rubber flower to a butterfly toy that he sleeps with. I did it because he has an app on his iPad that includes butterflies and flowers together. Somehow, he pulled the little flower off and wanted it reattached immediately. This was not such an easy task, as it would require either epoxy glue or a hot glue gun, neither of which I wanted to tangle with at 9 pm on a school night.
“Mommy will fix it tomorrow morning,” I said, as if this statement had any chance of achieving my desired outcome.
Far from soothing my child, he leapt out of bed and began running around the room, screaming at the top of his lungs. On the one hand, I did not want to reinforce the wrong thing, and let my boy throw a tantrum to get his way. On the other hand, I knew that the situation would only escalate—and escalate—if I did not comply. Autistic kids can have the fortitude of thoroughbred racing lap after lap around the track when it comes to setting right what they feel is wrong. And often “wrong” means that something has deviated from the norm and needs to be put back the way it was before.
Feeling myself start to break down inside, I walked to the kitchen to find my glue gun and plugged it in. Then the tears came, as well the exclamations of “not fair.” Why were my needs always shoved aside in favor of his, I thought, as I heard him flipping out upstairs above my head. Luckily, I have used a hot glue gun enough to effect the repair pretty quickly. Handing the fixed toy to my husband, I said, “Go give this to him. I don’t want to look at his face right now.” I was so done.
But, again, it didn’t end there. Upstairs, I could hear my son singing the opening refrain of one of the songs I sing to him every night before he goes to sleep. He was trying to tell his father that all was not yet squared away, and that I had one more part to do. As I dragged myself back upstairs, exhausted and numb, I thought, “How am I going to sing these little worship ditties to a child I am so angry with at the moment?” He didn’t deserve ANY of it, as far as I was concerned. The only person deserving anything was me, and that was a break from autism’s tyranny.
Sitting down at my son’s bedside, I started to sing. Immediately quieted, he stared at my face impassively for a while before ducking his head under the covers (his usual habit). I abbreviated each of the three songs I do every night as much as I could before leaning over and pulling the top of the covers down. My son looked very sleepy. Perhaps this is why he had freaked out so badly—not much in his gas tank either to cope with unwanted circumstances.
As I finally made my way to bed, feeling justifiably sorry for myself, a Thought entered my brain. I get these every now and again—observations and intuitions that seem to come from a higher and more gracious place than my own mind could ever manage.
Well, you wanted to know if you still matter to him as much as you did before. Tonight shows that he still needs you.
This statement was not only a Thought but a Response. Lately my son has been gravitating more and more toward his father than me. When he wants tickles it’s his dad he runs to. And they have developed a nice routine of reading books together, and getting in our hot tub for a refreshing splash and soak. Bathing duties have switched over from mom to dad now that my son is eleven. The days of luxuriating in the tub with toys have given over to quick showers in which his dad is teaching him to wash and dry himself independently. In short, my son is growing up and learning to be a young man. I’m told this is totally appropriate.
That does not mean I don’t have my doubts. After all, for more than a decade, I mothered my special needs son by implementing all that he needed in terms of therapy, feeding, grooming, play, and social relationships. I was his whole world for quite a long time. He routinely preferred me to his dad when having to choose between us.
Now, it seems the opposite is true, and I’ve been questioning whether there is something I am neglecting to do, or doing incorrectly, to cause this change. The phrase “Mama’s boy” comes to mind. I realize that even special needs sons need to distance themselves from their mothers so that they are not emotionally stunted as they try to navigate through the world with more than enough challenges before them.
Again, the matter did not get put to rest there even though I went to bed and days have passed. I find myself left with the question: does he love me simply because he needs me to do things for him, or for my own sake? The former answer threatened to break my heart, until I applied the question to my relationship with God. Do I love God because I’d be terrified to live without His protection, provision, and care? I’m not the most sanctified believer by far, but I am not stupid either. There’s no way I could make it through a single hour without God’s divine hand covering and guiding me, without the Good Shepherd leading me to green pastures and still waters.
To be honest, most of my prayer life is petition—babbling and begging for things that I want or need. Very little time is spent on simply sitting in God’s presence quietly, telling Him how much I appreciate who He is (and isn’t) and counting my blessings. Lately, I’ve dug out an old hymnal from my childhood and have been singing songs to Him that I think He would like. That we both would like because of the meaning of the words. And I have been trying to ask Him into my day, moment by moment, rather than tackling things myself. This is a new thing. Still, even with these novel practices, I know that my relationship with God would at best be labeled, “transactional,” as I ask for things from Him then so often forget to say “Thanks!” when He comes through.
It’s not that I feel 100% entitled to all the blessings He showers on me. I just get distracted by the next thing(s) I am worrying about. One of the last things Jesus said to his disciples before the crucifixion was: “Without me, you can do nothing” (John 15:5). This I fervently believe when I think about it, although I live like nobody is intentionally moving chess pieces about the board on my behalf in my state of ingratitude.
And affection? Don’t even talk to me about affection. Daily, I wrinkle my brow and try to imagine God walking me through the day, hand in hand, because He loves me too much to leave me to my own devices. Because He is, so they say, crazy about me. Perhaps if I had a better grasp of God’s heart towards me, I would relax a little more about the inequity of our relationship. Because He’s never been in it for what He can get out of me as much as what I can get from Him.
On my better days, I don’t resent my son for being afflicted by a disorder that makes reciprocity in our relationship nearly impossible. I appreciate that I get back more demonstrations of love and joy from him than many in my shoes do. It’s when I’m tired in body and spirit, bested by autism in my own strength, that the scales seem outrageously tilted in favor his needs over mine. That’s when I need to ask Jesus to step into the fray and fight for my son and me. That’s when I need to believe that there is more going on beneath the surface with my child than I can currently see— that he may one day do, be, more than I ask or imagine in the kingdom of God.
And hopefully I will have the wherewithal to say, “Thanks. It was all worth it. Couldn’t have done it without You.”
Now that I think about it, there is a glaring omission in the night of the broken butterfly. My tears were real and legitimate. As were my protests of unfairness. I just would have done better to direct them upward rather than stew in them by myself. That’s what friends do with each other, and if there is one thing that I desperately, indubitably want in 2024, it is to become better friends with God. I would like to feel more comfortable in His presence, not worry so much about who owes what to whom. And to be able to let go of notions of fair-and-not-fair in favor of gratitude for the grace that surrounds me daily, if only I open up my eyes and look.
Although it sometimes feels
Like I am no more than a
Indentured to a thankless job
Help me to remember
To invite You in
So the moment which afflicts
And the truth of Your love
In the Name of the Sovereign Servant,