The woman who posted this list at McSweeney’s deserves a hug. And so does Baji for mailing it to me, because it made my day. We had a public meltdown about two or three weeks ago in the Mirdif City Center, and I didn’t blog about it because I try not to be pointlessly negative. I feel I could be more positive writing about it now that I’ve had some time to think about it.
So were at the mall. And it was a weekend, the opening weekend in fact. And the check-out line was forty minutes long. I’m not joking, it was 40 minutes long. People were abandoning their purchases by the wayside and giving up before reaching the cashier, but we finally made it because Cindy held our place in line while I walked the kids around the store in the shopping cart. But 40 minutes is a long time to aimlessly wander, and Iman wanted everything she saw, and Khalid wanted nothing but to be out, so there was crying and whining and grabbing and lots of attempted escaping from a moving shopping cart.
Eventually we made it to the checkout, and I pushed the cart to Cindy, who started handing our shopping to the cashier while holding Iman into her seat. I took Khalid out, because he was climbing out of the cart anyway, and was just trying to keep him standing near me until we could pay. On top of that, the forty minutes of people standing behind Cindy had a collectively mutinous look to them, and it was clear from the more-than-usual amount of glaring that I was thought to be cutting in line.
Khalid was tired and angry, and instead of holding my hand, laid down on the floor and screamed and kicked- and some shoppers got kicked too- and some carts were rearranged on the crowded floor by his flying feet of fury, and in the mean time, Iman was standing up in the shopping cart and yelling to be taken out. And the two ladies standing closest to me – and they were really, really close- began their pitying analysis of me and my parenting skills with lots of tsk-tsking and Taubaaa! (God Forbid!!) and gesturing to Khalid and making disgusted faces and looking to me to make eye contact so they could take what they were saying and put it into second person instead of third.
Eventually, Joy came to the rescue. She had been at the other end of the mall trying to find chips and tic-tacs, two of our favorite go-to’s when there are errands to be run and children to be pacified. She finally returned with said chips and carried Khalid out of the store so I could scribble something unintelligible on the receipt, collect my bags and try to exit the store with as much dignity as I could muster when all I really wanted to do was cry. I would have been in good company, Iman would totally have joined me. Heads turned as we walked past the rest of the line and the chattering followed. I left feeling broken and worthless and utterly low.
We had parked on the opposite end of the mall, and it was a rather long walk back to the car. Cindy pushed the cart, Iman rode inside, at peace with a box of tic-tacs. It was relatively uneventful and morose until Khalid- seeking the freedom of the long, marbled shopping arcade- escaped and ran away from Joy at full speed, and in running past me, tripped on the corner of my abaya, slipped, and crashed head-first into the shopping cart full of groceries and Iman. And there was a mighty wail, and lots of crying, and people rushing out of stores to see what had happened. And I sighed, and scooped Khalid up and eventually the crying stopped and eventually, after forgetting where we had parked and wandering around the parking lot for fifteen minutes, eventually we made it home.
When HF got home I had a good long cry about it. I couldn’t help it. I had been trying all day to forget about it, but the utter disgust in those women’s faces cut me to the quick. I may joke about being ‘Mother of the Year’ when my kids have fries and peanut butter for dinner, or go to bed in the same clothes they’ve been wearing all day because they’ve fallen asleep in the car, but to be seriously seen in that light by someone else made me feel like something you scrape off the bottom of your shoe.
I know, they had no idea Khalid was autistic. Even if I told them that he was, they would have no idea what it meant in terms of behavioral issues. Sometimes parents get together and complain about how long it takes their children to sleep. “Twenty minutes!” they moan, “Twenty whole minutes!” I nod sympathetically and tell them they are doing a good job, and that eventually, InshaAllah, their hard work will pay off with loving, responsible adults who appreciate your struggles once they have their own. I can’t say ‘Twenty minutes? Oh God, that would be AWESOME.’ Putting Khalid to bed takes an hour on good nights and two hours on bad ones. Also, he kicks me in the face in his sleep.’
If I said these things I would be complaining. I don’t mean I, me, myself, would see myself as whining. I mean I would be seen as badmouthing my special-needs child, which is the moral equivalent of kicking a puppy. Sometimes, when I tell people for the first time that my son has autism, I’m told- ‘Oh no, he’s fine! Look at him!’ And if I warn them to move their mobile phones out of his reach, or put the decorations on a higher shelf because he may try to eat them- they look at me like I’m casting aspersions on him, the bitter, angry dishrag of a mom that I am.
But I digress. Even if I had told the two ladies in the checkout line that Khalid had autism, they would still think I was a bad mother. They didn’t know that Khalid had zero understanding of the situation and had already displayed epic patience (40 minutes!!) and had no way of verbally communicating that he was tired and wanted to go home other than screaming and trying to walk himself away from the clamour of the mall- and unless they knew what happened if I raised my voice to him or took a hand to him- they would expect him to behave better or me to spank him into submission. If you yell at or hit Khalid, he is overcome with terror. I’m not talking about the kind of fear that every child usually has of their parents, I’m talking about an animal fear- devoid of logic, unaffected by hugs or bribes or apologies- where he will run into walls or hurt himself in his desperation to escape. Or, he completely shuts down. He covers his ears with his hands and screams and is so overwhelmed that the original point of the disagreement is totally lost.
One of autism’s most difficult challenges is lack of public understanding. No one would glare at a mother who had a crying child in a wheel chair, or physically rough child with Down’s syndrome. It would be obvious- cut the mom some slack, the child has some issues. With autism, most children *look* perfectly normal, but that facade covers up severe behavior problems further complicated by inability to communicate- not only from child to mother (I’m hungry = Screaming, I’m tired = Screaming, My toe hurts = Screaming) but also from mother to child. When your child can’t understand you, they can’t easily be comforted when they’re afraid, or reassured that food is coming if they’re hungry, or be pacified with promised rewards for good behavior. The bubble of autism doesn’t just keep your child in, it keeps you out.
Now remember, I’m not being negative. I’m not complaining. I’m just being honest. And I can’t think of what an ideal situation would have been at that mall. I won’t say that ideally Khalid shouldn’t have been having a meltdown, because that is unrealistic and unfair to Khalid. He didn’t choose to have autism, and he can’t just choose to be normal. I suppose I should have gone into ‘Autism Ambassador’ mode instead of just trying to contain the situation and get out of the store asap. The ladies would have had a learning experience and I would have felt less like mother scum of the earth.
So here we are today, being positive. 🙂 Alhamdulillah. I should be willing to cut other people as much slack as I wish they would cut me. They won’t know what Khalid’s autism means unless I tell them. Sometimes I think I should just print t-shirts that say: Ask me about my son’s neurological disorder! I wonder if I could order them in bulk.