As the moments pass, as things happen, I can hear the words unfurl in my head. The sentences form and the emotions breathe life into the words in the time following any mundane or noteworthy thing happening in this life I live with Lil D, Amal, Hamza, husband, in-laws, Islam and autism.
I watch Lil D link arms with his father or lean on the table next to him while he eats, anxiously seeking his undivided attention; or Lil D and I share a moment of intimate eye contact at the dinner table where the cloudiness is swept away; or I run my finger over the darkened and mottled skin around his right eye as he lays his head in my lap; or I watch him remove his hat, rear his hand back and wince with mouth agape a split second before his open palm makes hard contact with his face.
In that moment, I have something to write, something to share with you so that you will better understand (as I try to) what this life is, what struggles and blessings are, and what so many families with special needs children do and feel day in and day out. But, I often stop myself from writing in the moment – when the moment isn’t a good one. The feelings are so raw and painful that I feel my judgment is colored, that to share the awfulness and unfairness of it does an injustice to the larger picture.
But sometimes it is just awful. And unfair. And I can’t find any larger picture to it all. That, too, is this life. May God forgive me for when there’s no gratitude or bigger picture in me.
This weekend was a tough one. Lil D’s anxiety of late has amplified and manifested into an obsession with his father. On one level it is very sweet to see him making this very appropriate, human connection with his Baba. We know in our family that Lil D loves us, and he shows his love to us when the mood strikes. But his social cues are lacking, and he doesn’t seek our attention and love the way his siblings do.
Something special developed between him and his father when I and the younger kids were gone for a week in Texas in the latter half of winter break. He always enjoys his time alone with his dad. It is evident in how he circles his Baba, cuddles with him or just stays in whatever room my husband is in. My husband also enjoys these times. There is only Lil D to contend with, and he can give his undivided attention to him. He will attempt outings and do things with Lil D that he normally hasn’t the time for or himaat (fortitude) to do when all the kids are around.
Since we got back into town and school started, Lil D’s attachment to his Baba has ratcheted up and became almost problematic this weekend. The affection and physical closeness was welcoming, but his Baba couldn’t devote all his waking hours to Lil D, and that made Lil D upset and engage in SiBs.
A number of things went wrong this weekend. Sort of an “Alexander and the Terrible Horrible No Good Very Bad Day,” except that it was a whole weekend. Moods were off, things were broken/lost, self-injurious behavior was on the rise and the whole family seemed to be on edge to the sound of Lil D’s face slaps.
I will argue to my dying day that the “thwack” sound of Lil D hitting the side of his face with full force and an open palm is the worst sound in the world. Followed by the less frequent (thank God) “thud” or “bam” sound of him slamming his body to the floor or hitting his head on the floor/wall/headboard. There have been several articles written on how parents of children with autism (especially severe autism), as well as children with autism, suffer from post-traumatic stress disorder (PTSD). This past year in 2012 was when I realized how true that was. My husband and I flinch at any sound that sounds like Lil D’s “thwack.” The kids hear a noise and call to me, “Mamma, Bhai is hitting himself!” – whether he is or not.
A day or several days go by when the SiBs are down and we don’t hear them. But we still have difficulty releasing ourselves from this uneasy feeling of living on the edge. We try very hard to enjoy the good days and let our guard down. We do enjoy. But in all honesty, when things are good, I am just waiting for the roller coaster to plummet.
I want Lil D and this family off the big, stomach-churning roller coasters – smaller kiddie coasters with manageable bumps and drops is what I crave for this family. We have been working hard to get Lil D off this roller coaster for years now, and we will not be giving up anytime soon.
But it’s freaking exhausting. Where is this elusiveness happiness, ya Allah? Where is the stability? I have listened to so many Islamic lectures and read faith-based articles that sincerely advise us to release ourselves from the dunya (world) and material attachments, to not place the sum of our happiness on the shoulders of another human, because only Allah is constant.
It’s good advice. It’s very hard to live it. Which parent doesn’t have their happiness tied up in their child’s wellbeing?
So, we paused from the crappiness of the weekend and took the kids to a park, where we walked around a lake. Lil D linked arms with his dad, and Amal and Hamza ran ahead, skipping merrily and chasing each other. Lil D was with Baba, which was all he wanted, and we were SiB-free for a few hours.
Sometimes the very best we can do is to just live in the moment.