In Autism Land, Who is the ‘Kismat-Wali’ (One with Good Fate)?

There is a phrase in Urdu – kismat-wali – meaning one who has good fate, who is blessed, very much like the word “kismet.”

 My mother-in-law called me kismat-wali. She is visiting her daughter these days, who has five children, works full-time and has leads an incredibly busy life. The classic Super Mom – that’s my sister-in-law. After spending some time with her and seeing how much she manages between the kids, her teaching job, cooking and housework, my mother-in-law remarked that I am a kismat-wali.

And I am – I gave up full-time for part-time work three years back after realizing that I could not effectively care for and meet Lil D’s (and our other children’s) needs. We live comfortably on one income, and I can pursue various therapies and treatments for Lil D without amassing horrible debt. My husband and I have a good marriage. My in-laws, who became United States citizens this year, live with us in a spacious house. Our joint-family living situation is great, and they are such a source of love and support, as are my parents, who live two hours away.

I have three great kids, two of whom are “neurotypical.” They all are really the greatest kids in the world, and the way Amal and Hamza’s relationship with Lil D deepens fills my heart with infinite joy and gratitude. Lil D, well he is innocence and love personified, on his best of days and his worst of days. You meet him, and you are meeting (in my humble opinion) a Jaanithi-boy (heaven-bound).

So there is all this. But we humans a funny lot. And depending on what day you talk to me, my thoughts on whether or not I am khismat-wali change. God understands. He knows.

This is Lil D

When Lil D comes home, I meet him at the bus, because as a special needs student he must be escorted home from the bus. The first thing I do is unzip his harness (which straps him into his seat on the bus) and take it off of him. We are back on the bus this year after voluntarily giving up the bus when his self-injurious behaviors and aggressions spiraled out of control last spring.

Sometimes he gets off the bus upset; other times he is calm and happy. We walk inside, and soon after Amal walks home from her bus. With my in-laws temporarily out of town, I have arranged for a classmate’s mother to drop Hamza home – because I can’t pick him up and be at home in time to meet Lil D’s bus.

We all get inside, and I empty Lil D’s backpack. I check and see how much lunch he ate so I can wager how hungry he may be. He often walks in requesting “kippa” or “cooka” (chips or cookies), and I give him a few until I settle the other kids. Then I get him a proper snack or lunch (if he didn’t eat at school).

I also check his notebook. He has a blue folder with school notes that go back and forth. Daily school communication is written into his IEP (individualized education plan) because without it, I’d never know how his day went. He can’t tell me. These are the things I first scan in the notes:

1. How much lunch did he eat (box checked for all, ate ½ or ate little or nothing)?
2. How many voids (times he went to the bathroom, separate boxes for urine and bowel)?
3. How many accidents (bathroom accidents, if any. Recently this number was way up.)?
4. Data collected on behaviors targeted for decrease: How many self-injury (this includes hitting himself, hitting his head on an object like the wall, table or floor, biting himself, pinching himself and so on), how many aggressions (towards others) and how many loud vocals. Dropping used to be in this list (in the fall, he spent 90 percent of his day for weeks dropped on the floor in school to avoid doing anything), but this behavior is now off the list because due to our ever-changing, meticulously managed behavior intervention plan, dropping has stopped.

Any alarming rises in these numbers and Lil D’s teacher calls me, or I call him. We are discussing these things all the time, constantly tweaking his behavior plan, bouncing ideas back and forth on what could be the cause, what we can change, and mentally high fiving each other when things improve.

Then I read up on what programs they are working on, how he was acting that day and any other bits of information they provide me. It’s never enough. I always want to know more. So much more. But they do have a lot of notes to write at the end of the day, and I pick my battles. Here’s what the note said yesterday:

“Lil D mastered his ‘hand washing’ program today! He also got 18/20 correct on his ‘point to pictures in book’ program today! Go Lil D! Lil D got a 6/7 on his point to numbers program J”

This is a good note. This is, in fact a great note. The number next to self-injury is 11 and aggressions are four. A few months back, the self-injury number was in the 800s – as in more than 800 times he hit himself or hurt himself in some way during the school day.

So Who is Kismat-Wali?

I am thankful. I am grateful. Ya Allah, really I am. We are thankful for how he has stabilized after the difficulties of the past few weeks. The rest of the day is a blur between his therapist coming over and working on some life-skills programs with him (bathing himself, vacuuming and a new one we are starting – watering the plants) then taking him out for some community-based instruction while the husband and I take Amal and Hamza to school for her science fair.

We all come back together by 6 p.m. I quickly cook dinner and call the gang to eat. We all sit down together and eat. All of us. Usually Lil D eats before us. I try and make him adhere to a dinnertime routine, teaching him to be independent at meal time, and it’s easier to do this one-to-one with him. But tonight we all eat at the same time. Everyone sits in their seat, everyone feeds themselves and Lil D even says “more” after finishing his first helping. The husband and I exchange grateful looks – this is nice. This is really, really nice.

After dinner, we all enjoy some downtime, and soon my husband takes Hamza to bed. Lil D goes downstairs to spin his beads and be loud. I let him have his “stimming” time. Amal and I pray Maghreb together, after which she prepares for a social studies test. Lil D is being awfully quiet, and when I check on him, I find him in the basement asleep on the bed. I wake him up and guide him upstairs, take him to the bathroom, put a pull-up on him and tuck him in. Soon Amal goes to sleep as well.

This day has gone very well. I am grateful. My nearly 13-year-old son mastered his hand-washing program, correctly identified some pictures in a book by pointing to them (“point to ball”), correctly pointed to some numbers and didn’t have a pee accident all day. He didn’t have a meltdown today. His self-injurious behavior was very low. He said “more” Though he couldn’t come with us to Amal’s science fair, he did well with his home therapy session.

We have a home, we are clothed, we have clean water and good food, we are blessed with children, we have loved ones.

We are kismat-wali.

My nearly 13-year-old son has severe autism. His accomplishments of late are hand washing, pointing to pictures and staying dry. He has cycles of crippling OCD and self-injurious behavior. He cannot tell me how his day went. His peers are learning pre-Algebra, preparing for end-of-year exams, reading great books, playing soccer after school, overdosing on video games, hanging with their friends, giving their parents attitude. His cousin, who is two weeks younger than him, just got admission to a prestigious school for the following year and passed her exams to qualify for honors and advanced classes.

I see Lil D struggle. I pray that he learns enough to live as independently as he can when he is an adult, pray that I am always there for him, that I will live one day more than him.

We are not kismat-wali.