Sometimes the memories resurface with such veracity so as to take my breath away with the pain and utter helplessness I have tried to bury. Maybe we are not meant to forget our worst times. Maybe they are to be reminders so that we appreciate everything better that comes before and after, even when that better doesn’t seem good enough.
I am sitting on our sofa in our family room settling in to watch some TV. The kids have gone to bed under protest. The house is quiet and I’ve turned the fireplace on to enjoy the flickering flames. Some sentimental scene on TV makes me tear up, and suddenly I remember a day two years back sitting on this sofa with my husband after getting our kids to bed.
It was on that day that we saw Lil D, who had been riddled with crying jags, meltdowns and growing anxiety for several weeks, start hitting himself on his face.
We had hired some guys to move furniture in our house that day and do some minor work, and my job was to keep the kids out of the way. It was a difficult, difficult day for Lil D, who kept running upstairs to downstairs, crying and screaming. Towards the afternoon, I saw his face looking puffy and red and couldn’t figure out what had happened.
Then I saw him hitting himself on his cheeks and the side of his face. Don’t do that, I told him, as if that would fix things. I tried all tricks in my bag – I took him and our other kids for a drive. I gave him a long shower. I tried to ascertain if he was hungry for something particular, if he wanted squeezes or to lie under his blanket, or if playing under the covers in my bed would help calm him down.
But he kept hitting himself over and over. And all I remember is my horror at what he was doing and feeling utterly helpless and powerless to understand the whys of it all and what to do to stop him from hurting himself.
When we had finally gotten all of our kids to bed, we collapsed on the sofa in silence in front of the flickering fire and some show droning on the TV. We sat in frozen silence, not knowing what to say to each other, until my husband pulled my head into his lap allowing me to collapse into a mess of silent sobbing and shaking shoulders.
That was the day that Lil D’s autism spiraled into days upon weeks upon months of heartbreaking and continuous self-injurious behavior.
All this comes flooding back to me this evening. These memories.
This that I wish to forget, but I cannot. I remember thinking back then – where are you, God? Please don’t keep me in the dark on this one.
A discussion on something autism-y I posted on Facebook (yes, Facebook. Don’t judge) a few days back turns to our parental approach and attitude towards our autistic children. My friend Angie Emara, whose son suffered tremendously from a medical condition before he died, says she views the struggles in her and her children’s lives as gifts. She writes to me,
“You will come to a point/place [Insha’Allah] where you view your work with Lil D as a gift (I know you do, but I mean the actual daily struggles in raising him). Every second of struggle you endure, you are receiving 3 levels of reward: erasing, reward in each moment and continued reward as you endure and accept.
People spend their whole lives wondering how they will enter heaven [Insha’Allah] – you get your path laid out for you, all you have to do (which is a lot, yes) is endure patiently as you are.”
“I struggle with the idea … that the struggles of raising a son on the spectrum are a gift. I totally understand the beautiful moments in working through the hard times, but then, is autism also … a gift to Lil D? When I look at all the gifts in my life, none of them come easy, so I don’t disagree with your perspective, but question how it can be a gift to the sufferer themselves?
Jessica goes on to write,
“If you knew suffering resulted in reward, would you pray for it? My dad never walked. He had no use of his legs. He died at 57 and I can say with absolutely certainty that his handicap actually made him into a more gentle, loving, holy man. It refined him like gold. And his life left a lasting impression on his children, brothers, friends, etc. that will undoubtedly be a positive impact on future generations. He was THAT kind of man because he knew suffering and it changed him for the better.
I imagine my grandmother probably pleaded with God to heal her son so he could walk. Had she had the same view I have at the end of my dad’s life when she was praying for her toddler to take those first steps … would she still have prayed for healing? Had she seen his handicap as a gift, would she ask for it? … I wouldn’t. But I want to be the kind of person who wants God’s will no matter what and accept it with open arms.”
This has probably been my biggest theological struggle with Lil D and his autism. I don’t mean to make autism out to be the enemy (though I know I do sometimes) – it is part and parcel of who he is. I don’t mean to say all autistics live a life of sorrow and suffering. Nothing could be farther from the truth. Heck, even though Lil D is nonverbal, I cannot presume to speak for him entirely either – nonverbal or not, everyone has their own thoughts and opinions.
But his lot in life, from where I can see, has been a pretty tough one so far, like for so many other autistic kids I know. His form of autism is severe and has been punctuated throughout his short life with as much frustration, self-injury, health issues, aggression, tears and screams and anxiety, as it has by pure and joyous moments of love, triumph, connection and truth. Raising him and loving him has shaped me profoundly. But let’s take me and his family out of the equation. This is about him and his life.
And so here’s what I wrote back to Angie and Jessica:
“How is this a gift for him, with the severity of his autism? I believe his path is laid out to Jannat (heaven), signed sealed and delivered. But then I [think], what he has to manage with his type of autism on a daily basis is enough – so why the other ongoing issues, the meltdowns or times of unhappiness or sickness, the constant frustration and struggle to communicate and be understood? God knows something I don’t – that’s for sure. And so my test is to keep trying and keep faith, I guess.”
It’s Sunday evening, and we are eating pizza when my nephew and sister-in-law walk in. We are exchanging pleasantries and asking them to sit down and grab a slice when Lil D comes up and grabs his cousin with both hands. His smile is wide; his happiness at seeing his favorite cousin is palpable.
Wait Lil D, I said. Let him eat something first! But he has already pulled his cousin to the sofa in the family room and pulled him down for an impromptu wrestling session. The fire is flickering and the TV drones on with a football game. And above the din of kids and adults talking rises the sound of Lil D’s joyous laughter as he jumps on and rough-houses with his cousin.
And we, the adults, pause to look at the two of them.
That sofa where I sat and cried in agony two years ago. Where Lil D sits now with his cousin, in a healthier and better place, but still struggling and working hard to manage life and autism every second of every minute of every day. And the only God-given gift I know for sure in this very moment is his smile.
His laughter, which brings smiles to all our faces.
Would that we could all live in this moment forever.