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.
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