Monday, August 24, 2015

On Releasing Control: my son's autism and all the feelings

I sat on the floor staring at him. Liam was crouched in a corner clutching a drink cup. My heart hurt. He wouldn’t let me close to him while there was even a sip of his precious beverage remaining but once he had finished he popped up and ran to join his brother in the back room to watch television. As music from Curious George drifted through the house my tears came. The tears grew into sobs and I sat in my living room, letting myself have the luxury of a small breakdown. When the tears passed I lay down right where I was and drifted off to sleep for just a few minutes.

There is so much “expert” advice out there warning against sharing the hard times of parenting children who have autism. The fear is that one day the child will read what you’ve written and be hurt or offended. But the thing is, I love Liam so much my heart aches when I look at him. He is so often a joy to be around. He is silly and mischievous and playful. He has come so far over the last two years. Yesterday he was running around the house with his truck but partway through his solo play he decided he wanted James to join him so he found James’s truck, asked me to help him get it, then brought the truck to James so that they could race around the house. Two years ago I couldn’t him to pay attention to me for more than about 30 seconds. He is doing so well.

The morning of my breakdown we had a well-check for Liam. Despite how far he’s come and the progress I see in him, whenever I am forced to compare him to a typically developing four year old I am reminded of how wide the gap still is. We sat in the waiting room, the three kids and myself, balancing the clipboard in my lap attempting to complete the developmental survey for Liam that for most kids is perfunctory. Yup, yup. Suzie is doing all of these things. Yea, I’m pretty sure I saw her do that last week. It went a little different for me. No, he’s not doing that yet. “Liam, can you tell me which circle is the smallest?” Liam: blank stare at the the waiting room television. I guess that one’s a, “not yet,” too. In every area of the survey—communication, problem solving, social-emotional, fine motor, gross motor—he was below typical. In some areas, like motor skills, he may have had the skills to complete the tasks but not the communication ability to understand the task. To add insult to injury we couldn’t even complete the hearing and vision screens they usually do at the four-year well-checks because he can’t reliably label his letters. Then we spent what felt like forever waiting for the doctor. I had to breastfeed the baby while trying to keep the boys from breaking a limb jumping off the exam table or destroying the expensive medical equipment.

I left completely wrung out. Liam cried off and on the whole way home, angry that he had gotten shots. By the time we pulled in to our house both the boys were crying and yelling at me. I attempted to bribe them into the house with the promise of television. No luck. I poured myself a coke and downed it. I poured myself a second coke and re-attempted to bribe them. Success. James hopped right up on my bed to watch television. Liam came in and cried for a drink. I offered him some juice. He cried harder, great big crocodile tears streaming down his face. He picked up my coke took a sip. The tears slowed. I reached to take it back and he turned away from me, crying again. He ran into the living room and wedged himself between the couch and chair, everything in his body language screaming, “Don’t touch me!”

As he finished my soda the sadness and guilt pressed in on me. Sadness at the ways he is still so far behind. Guilt over letting him drink such an unhealthy beverage. Whatever you might be thinking of me for letting him have it, know that I was judging myself six ways to Sunday in that moment. I just didn’t have the heart to take it from him. I spent the morning confronting all that he can’t do. All that autism has denied him. In that moment, however illogical the rationale, I couldn’t take one more thing from him.

It’s been seventeen months since he was diagnosed with autism. The news caught me off-guard. He had been receiving services related to his speech delay for seven months and none of his therapists expected an autism diagnosis. I know that the label of “autism” doesn’t change one bit of the awesome kid that he is. He is still my sweet Liam, full of laughter and joy. But convincing my head that nothing has changed doesn’t necessarily convince my heart. I needed the chance to let myself feel sad about the delays Liam has. To feel sad and frustrated that I don’t know how to meet his needs or address his wants because our communication isn’t happening on the same wavelength.

For so long I’ve been stuffing my feelings, trying to convince my heart to feel whatever my head said it was supposed to feel. But that’s not working anymore. I want, I need, to let myself feel. Sometimes I feel angry. Sometimes I’m sad. Sometimes I’m happy or amused. So many times my feelings don’t make sense and I don’t want to apologize for that anymore. My feelings are my feelings. I know there are people out there thinking, “But! In your anger do not sin! Feelings should always be in submission to the Lord!” and those people are right… but in this moment I’m going to trust more in the power of the Lord to transform me—including my feelings and my thoughts—than I will trust in my own power to control myself. 

If that means that sometimes my feelings are a little out of control, so be it. 

That’s sort of the whole point.

No comments:

Post a Comment