My mother always told me that one of our biggest fallacies is that when ten good things and one bad thing happens, we will fixate on the bad, worry about the bad, lose faith over the bad, get depressed over the bad, despair over the bad – and not remember the good. She is a smart woman.
We’ve had a nice week or so with Lil D, sandwiched between two very, very awful incidences. And though I’m inviting trouble by writing this (telling you about the good days – because that always seems to jinx things around here) you deserve to hear a full story. Having followed along on our family’s autism (and otherwise) journey this year — through difficulties, through good moments, through despair and through glorious triumphs, — you shall hear about the better between the bad.
Really, it’s nothing special. But in Autism Land, it’s most special. Last weekend we had a “nothing-is-special-yet-everything-is-special” kind of time. This week (until Friday) was like that, too. Weekends (and weeks) like these will probably seem dull and uninteresting to the average Joe. But for us, it was boring, uneventful and no drama at its finest. There was just one meltdown Sunday night before bedtime.
Things are by far not perfect. We still are having some horrible meltdowns and trouble driving anywhere with Lil D (his meltdowns often occur during car rides, and it can be dangerous to drive with him, as he will often try and come at the driver). But, there has been improvement – through medical interventions and investigations, behavior plans, switching to a new school, and loads of prayer.
Friday was the first day of Ramadan for many Muslims (my family started fasting today, as our mosque uses the moon sighting method to determine the start of the new month). When I was picking up Lil D from school, I had a throwback to a particularly bad day I had last Ramadan. Here’s what happened: I sat waiting in the car line at his school when one of the teachers told me that it would be a few minutes before Lil D came down.
That didn’t bode well.
The week before, when he started back at this new school, the first two days were fraught with meltdowns and horrible transitions to the bus (which we nixed after day two) and car. I knew this would happen, because he had enjoyed a few weeks of relatively low demands, and he was returning to a setting where learning and work was expected of him.
But sometimes even though you know the bad is coming, it still punches you in your gut, leaving you gasping for breath. The second day of school, when he came off the bus hitting himself and crying, we saw a large, ugly bump on his fore head. We later learned it had occurred when he flopped to the floor and then banged his head on the concrete before the teachers could intervene.
The third day of school, he was escorted to my car, his arms held by two teachers while two more provided back-up, crying, yelling, visible bruises on his arms and a bloody lip – all self-inflicted. There’s no point in me describing the ride home. It was bad.Behavior interventions were quickly put in place, and by the grace of Allah, the transition to my car and the ride home began to improve. Yesterday, though, we were back to square one, as I waited and waited in the car line for Lil D to come out. And when he did, there were the two teachers holding his arms, another big ugly bump on his forehead, and another car ride home fraught with SiBs.
As we drove home, I thought about last Ramadan, when the self-injurious behaviors were just starting to become an unwelcome visitor in our lives. One particularly bad meltdown during the first week of fasting prompted me to write my first blog post about Lil D and our life.
I wrestled with Allah and myself that night as I wrote that post about Ramadan Despair, and when I was poised to share the most raw and intimate of struggles, I hesitated. Was I ready to let the world know how deep my faith fault lines were? Was I ready to open up our life to everyone? Was I ready to reveal how much I struggled with belief and faith and trust in Allah?
I wasn’t ready, but I shared anyway.
There’s a lot that has happened from last Ramadan to this one, and if you had told me back then all that Lil D and we were to endure, I’m not sure what my reaction might have been – dig my feet in the ground and face it, or hide underneath the covers.
But here we are now, one year later, fasting in Ramadan again. And I’ve been thinking about Ramadan despair, about what I have to give back to Allah, and what I am beseeching Him for. And I feel calm, because there is a difference.
As the months have passed, as I have written more and more about faith and autism and our family, many of you have joined us on this journey. The connections and friendships that have come from this sharing has strengthened me, lifted me up and wrapped me in warmth. I am grateful for the pouring forth of prayers and good thoughts for Lil D. And, as I have endeavored to show what our life is like, that this is a struggle that never ends — you have shown me that it’s ok for me to struggle, that God knows. He knows.
I have a month of fasting and worship and prayer ahead of me. I have set no goals for myself. I am taking this one day at a time. God willing, there will be no lasting despair.
Last year I said this verse from the Quran (94:5-6), which I often think about, wasn’t enough. Today, Alhamdulillah, it is:
Fa inna mal al usri Yusra. Inna mal al usri Yusra. Verily with difficulty, there is ease. Verily with difficulty, there is ease.