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  • SCORE! 🙂

    Time is a funny thing.  You think you have lots of it and then before you realize what’s going on, another day has passed, another week is ending, another month is almost a third gone.

    Cindy, our housekeeper/Iman-chaser/Jill of All Trades who holds down the fort while I’m off pretending to have a job or two, has been gone for a week and we’re learning to adjust accordingly.  I drop Khalid and Joy off at school in the way-too-early am.  Iman and I run errands together.  Then we come home and make lunch or something close to it.  A part-time housekeeper comes for two hours every other day to help with floors and bathrooms and other tasks that my knee, back, and pregnancy don’t totally jive with.  We use paper plates.  We buy ten-dirham roast chickens occasionally.    Sometimes the kids have peanut butter for lunch.

    I remember, three years ago, crying on the sofa with a new-born Iman in my lap and Khalid whining at my knee, spit-up on my shoulder, still in my pajamas, nothing cooked for dinner and the house a wreck.  HF came home smiling and spoke three magic words that helped me redefine my measure of success or failure as a mother: “Lower.  Your.  Standards.”

    These magic words were not carte-blanche for neglectful parenting or non-housekeeping, but rather of realistic goals and priorities.  And I have remembered them ever since, and HF, my HusbandFriend and superhero holds me to them, and and even good naturedly helps out and looks rather dashing in an apron with suds on his elbows.  Also, he makes bath-time more exciting.  And story time before bed perhaps a little too exciting.  Come to think of it, everything he does is exciting to the kids, and when he worked from home today so that I could get a little rest and attend a meeting in the afternoon, the result was that he and Iman went out for parathas and nihari at Karachi Darbar for breakfast and Iman came home with a squashy, melted chocolate in her tiny fist and a delighted grin on her face.  I got to sleep in to the extravagant hour of 9am, and after my afternoon meeting, even squeezed in a half an hour swim before rushing home to find the kids happily eating french fries, roast chicken and hummus.  Alhamdulillah 🙂

    So yes.  Kids fed? Check!

    House still standing?  Check!

    No food being left out or wasted? Check!

    Table has crumbs on it?  No prob!

    Back screaming in pain?  Email can wait!

    Everyone alive, healthy, happy, and grateful to Allah for His Mercies, great and small?

    Score!

    Now all we need to do is help Khalid get over tonsilitis, Iman get over a throat infection, and help me get over whatever it is that makes me pout and stomp when it’s time to go to bed in Iman’s room every night because she and Khalid cannot sleep in the same room.  They wake each other up, and after an all-nighter earlier this week with Iman crying that her cot was ‘yukky’ and Khalid waking up to see what all the fuss was about, HF and I took the cot down and put Iman back in her ‘bonk’ bed.

    (We bought the kids a bunk bed.  We told them to NOT jump on the lower berth.  We told them they would hit their heads.  They didn’t believe us.  “Ow!” Iman cried two seconds after ignoring my warning,”I bonked my head onna bonk bed!”)

    So now Iman and I sleep in Iman’s room, she’s got the top bonk, and I crawl into the bottom bonk, and in the middle of the night she wakes up and asks me for stickers (really, stickers!) and I tell her to go back to sleep.  And she cries, but Khalid is safely outside of earshot, sleeping with HF IN MY BED so Iman has no choice but to stave off her sticker pangs and go back to snotty, tearful sleep.

    And now that I’ve polished off a few important emails and (with HF’s always charming help) brought the house to within regulation minimums for cleanliness for the evening, I’m going to pray, change into my PJ’s, and crawl into the bottom berth of a child-sized bed covered in pink flannel and nearly obscured with stuffed animals.  And I will try not to bonk my head.

  • If this post had a theme-song, it would be ‘Me & My Shadow’

    If this post had a theme-song, it would be ‘Me & My Shadow’

    Iman is “flying” a kite in the front yard (*hint, Momma hung it on some fishing wire tied between the car port and the gazebo) and singing a song of her own making.

    She’s been playing happily outside on her own for the last fifteen minutes or so, but I can’t help but feel a twinge of sadness for her- Khalid and Joy are at school.  Cindy is on leave and will be back home in the Philippines for the next month.

    I’m home, but before I can take Iman out for some quality Momma/Iman time, I need to wash the dishes, cook lunch in anticipation of Khalid’s return and sweep the livingroom floor clean of the pancit noodles that Iman decorated it with for breakfast.  I also need to make a few time-sensitive phone calls, and visit the bank (with Iman, of course).

    Then I’m going to buy paper plates/cups/bowls/napkins and heck if they made disposable pots I’d buy those too.  Without Cindy for the next month and no replacement available, I’m adding full-time housekeeping and Iman-entertaining to my directorship and corporate consultancy roles.

    (And I’m thinking that when the mountain of laundry overwhelms me, I could start dressing the kids in paper towels.  Hey, they’re recyclable! )

    I wonder what only-children do.  Iman is so bored.  It’s only ten am, and so far we’ve “flown” a kite, had a manicure, cut pictures out of the sales papers, drawn pictures of all the family members, and had not one, but two breakfasts, the first being pancit noodles and the second being cranberry juice and cereal.

    Ah well.  Time to get to work and start sweeping, cooking, calling, driving, and somehow attending to Booboo, who has just informed me that she ‘needs to change clothes, to nice clothes.’

    Off I go!

  • Treading water, I think

    The Mad Hatter’s advice was to begin from the beginning, but if you’re not sure where things began, then sometimes it’s best to jump right in to the middle.

    So we’re in week three of real-time operations, we’re processing contracts and visas for three more therapists and trying to juggle parent meetings, the waiting list, recruitment, questions about expansion, etc.  My head is spinning.  On the plus side, the rest of me is doing the same in a tiny, heated, ladies-only gem of a pool ten minutes from my house, and while week three of operations in a newly launched business might seem like a ridiculous time to take up a luxurious new hobby, I’m swimming moreso out of necessity than anything else. Alhamdulillah, I am 19 weeks pregnant now.  SubhanAllah, my back is in agony.  I cannot sit, stand, or lay down for more than a few minutes at a time.  I ice my back daily or suffer the stabbing, burning, aching consequences, and I have to swim in order to maintain some semblance of fitness that doesn’t make my knee worse and helps to take the pressure off of the rest of me.  I can’t sit on a dining chair for more than ten minutes at a time, but hey, I can float!

    Another unexpected side-effect of not being able to sit is not being able to work (or hey, blog!) properly.  Right now, the computer and I are reclining on the sofa in a position that’s tolerable for my back but likely to give me carpal tunnel syndrome.  Usually, I work standing up at the dining table (it’s a tall dining table) or sitting on an exercise ball at my desk.  Usually, I have to call it quits after about half an hour to go stretch or lay down or ice my back.  Hurts to drive, hurts to work, and surprise surprise, these days I am doing an extra whole lot of both driving and working.  I had to end a meeting early last week because I just could not sit down at the office’s conference table any longer, and the table was too low to stand at.  I’m weeks behind in both work and email, but Alhamdulillah, I’m ok.  I’m in deep water but I haven’t drowned yet.

    *sigh*

    There are so many things that come up that I want to blog about, but because I can’t, they get forgotten.  Just today I was watching Khalid and Iman “hide” in a tent, giggling and eating apples, and it was a shock to me- all of a sudden, I realized that I had two kids, almost 5 and 3, and that I would have another one soon.  They’re growing so fast, life is changing so fast, and where my life was once a to-do list, now it’s looks more like a whole bunch of flowcharts all loosely held together by a tired-looking paper clip holding an icepack to its back.  We have rent coming up, school fees to pay, admission to set up for next year’s school and some KG’s are full all the way until 2012!  Parents call me every day asking when their therapists will arrive, pending projects are inquired about and I’m sure more than one colleague has heard the audible ‘whack’ of me slapping my forehead when reminded of a project that I just forgot to do.  Eeek!

    But I’m not complaining.  I’m… sharing.  Yes.  I’m not asking to have this removed from me, I’m just marveling at how busy I am now versus how busy I was before, and how I sometimes wish I wasn’t quite so busy.  So yeah.  The blogs might be a little scare here and there, and the updates few and far in between, but I’m still here, I’m still alive, and I’m still running around like a chicken with my head cut off.

    By Abez, the end.

  • Busy in wonderful ways 🙂

    Alhamdulillah, we have our first two therapists starting with the first five families who will be sharing their time.  Tomorrow I have three meetings in two separate emirates to collect all the contracts and make it all official.  Please make dua that Allah make this venture a sadqa-jaariya- a blessing in this life and the next, through the families we are able to help and the good it will do in the long-term, InshaAllah.

    May Allah protect us from abuse, from our own hands to others or from the hands of others to us.  May Allah facilitate learning, progress, and the potential for a more independent future for the five children who will be beginning therapy with us tomorrow, and guide us all to truth and patience.

    Ameen

  • Blue, Pink, or Betrayal?

    Blue, Pink, or Betrayal?

    We do not yet know the gender of the baby, but for future reference, let’s call him or her Stringbean. No HF, I am NOT calling the baby Grandpa Wilkins. Yes, I know it’s a perfectly nice handle. No, I don’t want to attach it to a baby.

    So yes, Stringbean. Khalid was my Jellybean. Iman was my Mysterybean because she evaded gender detection for almost 7 months via artful positioning and kung-fu fighting during ultrasounds. Stringbean is Stringbean because at my last ultrasound, the doctor took a look at the screen and said oh, that’s a long baby! I asked her what she meant. She said the head size was normal for the number of weeks of pregnancy, but the rest of the baby looked to be pretty long. This, she said, made sense because I was ‘tall too.’ I didn’t have the heart to tell this lovely, petite Asian OB that I’m only tall compared to lovely, petite Asian OB’s, but that’s ok. We have a long baby. We have a Stringbean. 🙂

    When I first learned that we were expecting Stringbean, I refused to admit that I was hoping for a Boybean or a Girlbean, and I held the line that I would be happy with whatever Allah gave us and that was that. I already had Khalid and Iman, Boy and Girl, Salt and Pepper, so it’s not like I needed any specific pieces to complete the matching set but the truth is, I was in denial.  I wanted a boy, and I wanted a normal one.  I felt horribly guilty about this, and when I finally confessed this to HF one tearful night, he hugged me and asked me why I felt bad about that. Hoping for a boy, I felt, was like implying that I didn’t already have a son- like Khalid was not valid as a little male human being and I was telling the Manufacturer this one’s not working right so I want a new one.

    And HF nodded and said I know, I want a boy too. And I was shocked, but it seemed less heinous coming from HF than it felt in the dark and guilty recesses of my mind, because wanting a boy has nothing to do with Khalid and everything to do with Khalid at the same time.  Wanting another son isn’t a matter of betrayal, but practicality.  Khalid is special, unique, difficult, academically advanced and socially delayed, verbally unintelligible to the uninitiated and physically confusing in his quirks and stims.

    InshaAllah, he has a future and a rizq and a place in this world because Allah has written all of these things for him and is not unfair to any of His creations. But Khalid is going to need some help, and one day, HF and I are going to die. Iman will be married, and while I have no doubt that she will always share a special bond with Khalid, she may not always be in a position to support or help him when he needs it most. Or rather, let’s put it this way: Iman will have an easier time looking out for Khalid if she’s not the only one. Adding another Salt shaker to the set means that Khalid has a matching set of siblings to count on after his matching set of parents- Father and Mother, Provider and Nurturer, Protector and Soother, are gone.

    The pregnancy is starting to show, and other autism mothers I meet look shocked when they hear we’re expecting our third child. “You’re so brave,” one mother told me last week, whose son was just diagnosed a month ago and who has lost seven kilos from the stress. “We want to have another baby but we are so scared. We don’t want him to be left alone when we die, but what if we have another child with autism?”

    I told her, frankly speaking, that when I found out I was expecting Iman, I cried and it was NOT out of happiness. It was out of frustration and hopelessness and the feeling of failure that I felt from raising a little boy who didn’t even respond to his own name. This was before Khalid was diagnosed, we just knew that Khalid was different and difficult, and I felt like I could barely handle him, so how on earth would I cope with another one? SubhanAllah, to say the least, Iman is a blessing. When most parents of autistic children pay over 300 dirhams an hour for their child to take part in a specially structured ‘play group session’ with neurotypical children, Khalid lives with one. Iman was his first play-mate, his first enemy and the first peer he had ‘conversations‘ with. Iman taught Khalid how to pull hair, pinch, kick and run- and also, how to defend himself and rise to the defense of others.

    Iman has been a challenge, a laugh-riot, a pretty pink princess crowned with ferocity, slathered in resilience, and lovingly adorned with sweet little kisses and precise deadly pinches. We will never need a TV- watching Khalid and Iman simply coexist is more hilarious, dramatic, entertaining, riveting, frustrating, and awe-inspiring than Comedy Central, Discovery, NatGeo, and Hallmark all rolled into one.

    And now, InshaAllah, there’s going to be three of them. And what if the next child has autism? Well, the good news is, we already have a full-time therapist. And program materials. And a great case manager and a better idea of which nurseries, schools, play-areas, toys, people, malls, shopping-carts, are best for children with autism. So SubhanAllah, we’re better prepared now for an autistic child than we ever were with Khalid. So if Allah decides to grant us another special little child with very special needs, than I am grateful that we’ve been prepared this time. 🙂

    And what if the next child is a girl?  Then I would like her to be named Khawla, after the amazing Muslim heroine that would have been completely unknown to me were it not for a cross-posting on Badass of the Week (actual site name, pardon my French).  Khawla travelled with the army of Khalid bin Waleed, ironically enough, accompanied by her brother, a commander and famous warrior-poet named Derar.  She would tend the wounded and sick, but one day, would move beyond that role when her brother went down in battle and was captured by Byzantine soldiers.  Khawla, seeing him taken from a distance, dropped what she was doing, covered her face with a strip of black cloth and her body in a shawl, and rode off, sword in hand, to go rescue him.

    “Khalid watched a knight, in black attire, with a big green shawl wrapped around his waist and covering his bust. That knight broke through the Roman ranks as an arrow. Khalid and the others followed him and joined battle, while the leader was wondering about the identity of the unknown knight.”

    Other soldiers in the battle saw her fighting with such ferocity that they thought her to be Khalid Bin Waleed himself, and when Khalid Bin Waleed appeared with a number of knights to reinforce Khawla, one knight turned to him and said “Who is that knight? By God, he has no regard for his safety!”

    Eventually the battle was won, but her brother was nowhere to be seen. Khalid Bin Waleed demanded that the unknown knight reveal his identity, and when Khawla was discovered to be the sister of Derar, Khalid ordered his army to chase the fleeing Roman Army with Khawla leading the attack.

    I won’t give the entire and seriously awesome story away, you can read the entire (and profanity-free) article here and I am not linking the place where I originally read it, due to the use of four-letter words used gratuitously, albeit, in admiration of Khawla.  But I digress.

    It is a mercy, blessing, and gift from Allah that when we see things through the lens of trust and Taqwa that we have the opportunity to relax.  All good is in Allah’s hands.  All difficulty is a trial through which we may become stronger.  All ease is a blessing and there is no hopelessness for those who trust unfailingly in His will.  If our next child is a healthy, neurotypical boy, Alhamdulillah.  If our next child is a healthy, neurotypical girl, Alhamdulillah.  And if our next child is autistic, regardless of the gender, Alhamdulillah.

    I am praying for a healthy boy, because Allah tells us to call upon Him and ask of Him, even for a shoelace.  He is, after all, the Owner of every treasure, known and unknown, seen and unseen, in the universe and beyond the known universe.  Hoping for a healthy boy and then not asking the One who can provide one would be a gross oversight on my behalf.  But I am also praying that Allah grant me a child who inherits Jannah, and if that means a person who is never questioned because they can never tell the difference between right and wrong, then that too is a blessing.

    Alhamdulillah. 🙂

  • Busy few days…

    Sorry everyone, I know I’ve been AWOL. Both kids are sick, Khalid has been up at night last two nights in a row, and he’s coughing and snotty and fevery in the day. Last night he coughed himself awake around 11 and was awake until Fajr. Iman is getting over her ‘fezer’ and has stopped telling people she’s ‘not good.’ She’s still snotty, but she seems to be over the worst of it.

    HF is doing well, his chronic nosebleed has subsided and he went to work today without the risk of redecorating the office walls with red polka dots. (in case he sneezed, God Forbid!)

    It’s 11:30 at night, I’m behind in my work (as usual) and am starting to get a but sniffly myself, but Alhamdulillah should be fine. I’ll try to update properly soon and respond to the comments in the last post too. Gtg, Khalid is fussing in his sleep again.

  • Also, I hadn’t planned on making this such a long post!

    Alhamdulillah, HF had surgery today to fix the wildly deviated septum and outrageously deviant sinuses in his nose, and everything went according to plan. And lots of this went according to a totally different plan.

    HF had planned to check in to the hospital at 6 am. I had planned to accompany him, so at 5:30, we carried Khalid, sleeping, into Iman’s room where it was planned that he should sleep so that if he woke up, he wouldn’t be alone and afraid.

    We had not planned for him to wake up when we moved him though, nor had we planned to give Iman a fever the same night, so that when Khalid woke up and panicked in the dark, Iman woke up and started bawling- burning hot and shaking. Cindy hadn’t planned on waking up at 5:30 to give Iman more fever-reducer and soothe her to bed while I tried to calm Khalid down and get him back to sleep, but then, things don’t always go according to plan.

    HF hadn’t planned on going to the hospital without me, but with both kids crying by 5:45, he had to.

    I had planned on putting Khalid back to sleep, but Khalid had plans involving lemonade and cereal, which he whispered to me in the dark as HF drove off. So there was a change of plans, and Khalid settled for apple juice and some cereal in a tupperware while I quickly dressed him so we could take the second car and join HF.

    I had planned to get there and surprise HF in his room. Surprise, HF wasn’t in his room. So Khalid and I waited for HF to come back from Fajr prayer. HF hadn’t planned on being welcomed by a completely awake little boy who was supposedly back home sleeping, but Alhamdulillah, Khalid ran and greeted HF and both grandparents at the door with hugs and much rattling of cereal in its plastic box as he jumped excitedly up and down.

    I took Khalid out of the room before HF was prepped or had a canula inserted, so that he wouldn’t freak out. It was bad enough when the male nurse took HF’s blood pressure, Khalid first yelled at him, then pinched him, then attempted to kick him, and when that failed, he tearfully pointed a finger at the nice man (Mark) and yelled “Time Out Mark! Time Out!”

    I invited Khalid to come and walk with me, as compared to ‘Hey kid, let’s go home’ so that he would come peacefully and without screaming through the OPD. That went according to plan until we got as far as the car and Khalid realized we were driving home again. “No Mama! No home! No!” *kickkickkickkick* He cried all the way home.

    When we reached home and I quietly unlocked the door, I hadn’t planned to see Iman sitting at the dining table, but there she was, still in her pajamas and looking flushed and wilted and definitely miserable. Neither she nor Cindy had been back to sleep. I asked Iman how she was feeling. She said “Not good.” I asked her if she still had a fever.

    “Yes, a fezer,” she nodded sadly. “In my head. Iss ow.”

    Khalid was passed to Joy for the beginning of his morning ABA program. Iman and I went to wash her face, change her clothes, give her some more medicine, and just generally to try to help her feel better. We selected the red overalls that Khalid out-grew at the age of 18 months which flap loosely around Iman at 2 and 3/4 years. We paired them with a white shirt dotted with tiny red flowers. And by request, Iman’s pink tiara. Then, socks and sneakers and by then the medicine was kicking in, so Iman and Cindy went for their morning walk to the park with Iman’s eyes red and puffy and her Hello Kitty tiara pink and sparkly in the early morning sun.

    I had planned to take a power-nap, then wake up and cook some food to take to HF’s hospital room for him as well as his parents, since the City Hospital is nice, but hospital food is still hospital food. However, I had not planned on spending so much time with the kids before they left for the park, so by 9:00, I realized that I would have to change my plans. No nap. Just cooking. I made chicken pilau, some hot-as-heck chutney, a thermos of karak chai, and set it all up with a bottle of water, some disposable glasses, HF’s clothes, his pillow, a box of orange juice, and some packing and logistics help from Cindy, who by 10:30, was back from the park.

    I had planned to be there when HF came out of recovery, but I hadn’t planned on fighting a last-minute battle with Iman, who flatly refused to let me take the pink paper balloon with her hand print and a red heart on it that she had made especially for Baba. She made it, so it was hers. Since it was hers, it wasn’t right for me to take it away from her. Naturally. And since it was a balloon (albeit one made out of a paper plate, some yarn, and two sheets of construction paper) she insisted that it go ‘up inna sky,’ and nearly cried from the frustration of having her ‘balloon’ dangle very non-buoyantly from the end of its yarn leash. Joy bribed her with the opportunity to make another pink balloon, and to even wield the much-coveted glue-stick. Iman conceded and I rushed out the door with her balloon as well as Khalid’s- his was personally lettered and signed and it reads love you baba, khalid, in a gorgeous child-like scrawl that only children are really good at.

    HF made it to the room before I did, and was laying there with his nose swaddled in bloody gauze and medical tape, too out of it to stay awake for more than a few words at a time. I had planned to bring the kids later, but I messaged Joy and Cindy and let them know there was a change of plans, no kids. I had planned to stay awake until HF woke, but then I was so exhausted that I fell asleep sitting in his wheelchair and leaning against the foot of his bed where he slept and (often) choked, groaned, woke up slightly, and then fell back asleep again. Apparently It’s hard to breath with your nose taped closed and your mouth raw from intubation.

    Alhamdulillah, HF finally regained consistent consciousness around one in the afternoon. So we all hung out- his parents, and eventually his sister and niece as well- and ate chicken pilau and cookies and poked gentle fun at his nose job, asked him whether he couldn’t have gotten his chin done, and whether or not next time around he could get a six-pack installed. He was able to eat by around three or four o’clock and Alhamdulillah, the next few hours were just spent sitting in his hospital room and munching and chatting.

    I came home after praying Maghrib and found Khalid sobbing on the sofa because Cindy had just closed the front door, which he had just opened for the Nth time waiting for me. Joy had told Khalid that Momma was on the way, so Khalid had planned to stand there with the front door open until I arrived.

    Iman was warm, but not burning hot. Both kids had already eaten dinner, and I had a quick bite while the kids watched Meet the Sight Words. By 7:30, Khalid and I were in bed, reading his favorite Eric Carle books and commenting on certain deficiencies in the plot. Khalid does not understand that ‘In the Hungry Little Caterpillar,’ the egg that we see on the first page hatches and -pop!- out comes a very tiny and very hungry caterpillar whose quest for food (as well as meaning in a meaningless world) we then follow for the rest of the book.

    The caterpillar makes some poor food choices, which culminate in some binge-eating, which he then repents of and makes absolution for by eating (instead of a smorgasboard) ‘one nice green leaf, and then he felt much better.’ In Khalid’s mind though, that nice green leaf is where the egg was on page one, so when he sees the caterpillar sitting on the leaf, he always asks “Oh, whereza egg? Where izit” And then we go back to the first page and I try to explain that the caterpillar was actually inside of the egg, and when he came out -pop!- then the egg was gone. Khalid has either never fully understood this, or never believed it. So today, when he asked where the egg was, I told him I didn’t know. So he told me. “Iss cook egg. Oh, caterpillar cook iss egg.”

    And I hadn’t planned on writing all of that in this same blog, but it was so adorable that I didn’t want to forget about it. 🙂 It’s been a long, long day, and I had planned to be asleep by now, but I had an unplanned power-nap just before Maghrib on the couch in HF’s hospital room. That might be why my brain is awake even though I’ve been up (apart from two short snoozes) for nearly 18 hours. It’s been a good day though, a busy and unexpected but good day Alhamdulillah. And Allah is the best of planners. 🙂

  • Apples versus oranges, lady.

    The Ikea in Festival Center (Dubai) has a lovely little play area for kids, and Alhamdulillah, Khalid is able to play inside by himself as long as there is someone on the other side of the glass watching in case of the unexpected bathroom emergency or melt-down. Alhamdulillah, neither happen very often.

    It’s a neat little place, with a slide and a large ball room and some tables and chairs with paper and crayons. The only bit of poor planning in there is a water cooler at toddler level with bright, easy to pull levers and only the tiny, standard drip-tray underneath- sorely inadequate for the number of kids who come, play, pull, and cause the occasional puddle. I don’t know whether the other children are less interested in water or more compliant with the attendants, but the water cooler isn’t so big an issue that they’ve had to move it or anything. But then, there’s Khalid.

    One of Khalid’s latest fascinations is with pouring. He’s been in to pouring for a few months now, and it began with us losing five or six full pumps of liquid hand-soap in one week. Khalid would open the lid and pour the soap down the drain, then he would fill the container with water and pour that down the drain too. We lost a few economy-sized bottles of baby shampoo that way. Sometimes he would find water bottles and pour those down the drain as well, and then transfer the water from one container to the other, just to watch it pour. Needless to say, we no longer own or use liquid hand-soap. Bar soap is safer because it lacks a certain… flow.

    So Khalid likes liquid, he likes watching it pour, he likes filling and emptying things, and he likes the water cooler at Ikea. Apparently he likes filling (but not drinking or pouring) glasses of water and lining them on up the shelf nearby, and apparently, the lady on duty last Tuesday had gotten a little annoyed. When I came to pick Khalid up, I saw him filling himself a glass of water, and I told the attendant that she might want to move him away from the cooler, since I was on the other side of the gate and couldn’t come in. She turned around, and from where she stood, over ten feet away, called out in a sing-songy voice, “Baby! I told you, don’t touch the water cooler!”

    “His name is Khalid. He’s not going to respond to baby.”

    “Okay, Khalid! Come here!” she sang out again.

    Khalid, who heard his name and probably my voice as well, turned and ran excitedly towards me, knowing it was time to come home. When he reached the gate, the lady had to remove his numbered vest (that’s how they keep track of the kids) and retrieve his shoes and backpack. In the middle of this, she decided to kneel down, point her finger in Khalid’s face, and scold him.

    “If mommy tells me you have been a bad boy I will not let you back in here.”

    I waited to see what Khalid would do. No reaction. He was too excited about coming out. But then she said it again, more loudly and in his face, “You have to be a good boy! Otherwise I will not let you come back!”

    That got Khalid’s attention. Khalid looked at her, saw the finger in his face, and pinched her. Hard. She stood up, rubbed her stomach where he had pinched her, and handed me Khalid’s shoes and backpack. As I signed Khalid out, she asked, “Ma’am, is this your only child?”

    I thought she was asking if Khalid was my only child in the play area, so I said yes.

    “Oh,” she nodded. “No wonder he is so spoiled.”

    I think if this had been last year, and I had been more raw and less experienced, then I would have been seething. If this had been two years ago, I would have been in tears. But this was 2010, and I’ve been an ‘autism mom’ for long enough so that I don’t see peoples’ ignorance as insensitivity, or their criticism of Khalid’s behavior as a scathing judgment of my parenting skills or the lack thereof. As it is, I was warily amused. And, I felt a sorry for her. Khalid does pinch really hard.

    “He’s not spoiled actually, he’s autistic. You know autism?”

    She looked blank. And then looked at Khalid.

    “He didn’t understand what you were saying.”

    And then she looked really, really embarrassed.

    “But, but he looks so normal. He looks ok!”

    “Most children with autism look completely normal.”

    Khalid was holding my hand now, and as he bounced in place, his dog tags- engraved with his name, nationality, contact info, and AUTISM in capital letters- jingled a happy tune.

    “I’m sorry, I didn’t know…”

    “It’s ok,” I said. And really, it was.

    I think the next time I go down I’ll say hi and strike up a conversation. She could use some pointers on addressing children directly and in an authoritative tone of voice. All kids, even the autistic ones and especially the normal ones, can tell who means business just by the tone of voice used. And it’s not about intimidating the kids into good behavior, but if your ‘don’t do that’ voice can be mistaken for a brief rendition of ‘twinkle twinkle little star,’ then there’s a good chance that you’re not getting much compliance out of any of them.

  • The Warmest Fuzzies Ever 🙂

    Very typical of a person with autism, Khalid is much better able to understand written and visual instructions than he is spoken instructions, and so when it comes to difficult transition times, we use written instruction to help Khalid prepare for what’s coming up. Usually, his written schedule for the evening looks like this:

    1. Dinner
    2. Bath Time
    3. Read Stories with Baba
    4. Sleep with Baba

    Today, our evening schedule was a little different, because HF had to go pick up some friends who were only in town for two more days and without transportation. Because Baba was unavailable for bed-time, and Joy would be putting Khalid to bed (Yes, she’s back!) the written schedule said only this:

    1. Video
    2. Sleep

    So Khalid found a pen and made some corrections.

    With ‘bAbA’. SubhanAllah. 🙂

  • *rimshot*

    *rimshot*

    One of HF’s coworkers came over for lunch today, and as per tradition, Iman decided that the new person in the house must absolutely be her new best friend forever in the entire world. So she climbed in his lap, fawned over him told him everything that she knew about everything, which is something she does to newly introduced people all the time. Iman doesn’t require any warm-up time for new people. In fact, the newer the person the better- she’ll adore them all the more.

    So, as Uncle BFF was getting his own son ready to go by helping him with his socks, Iman decided that was the perfect time to plop down into his lap (between his busy hands) and poke him in the nose. And then she poked herself in the nose and initiated the following conversation. And I quote:

    Iman: I bonked my nose! I got it an ow!

    Uncle BFF: Oh, you bonked your nose? Did it hurt?

    Iman: Iss pain-fo. I go to the doctor.

    Uncle BFF: You took your nose to the doctor? What did the doctor say?

    Iman: No more monkeys jumping on the bed.

    End quote.

  • Kill all Kafirs, 72 Virgins in Paradise

    While an agnostic Jewish author doesn’t fit in the same category as Abu Huraira, this video shared by one of the MM writers is definitely worth watching.  Lesley Hazelton has an appreciation and understanding of the Qur’an that, I am sad to say, many Muslims don’t even have.  She talks about her attempt  to ‘really, properly read the Qur’an in research for an upcoming book, and the hubris of allotting herself three weeks for a task that ended up taking her three months. May Allah guide her.

    Definitely worth watching, and addresses two major myths about the Qur’an- permission to kill all kafirs and 72 virgins in Paradise.

  • Lessons from Abu Huraira’s fingers 🙂

    May Allah be pleased with Abu Huraira, he was an amazing man and I love his kuniya.  Abu Huraira means father of the kitten-you see, he used to have a pet kitten. 🙂  And I know I just updated yesterday, and I wouldn’t want to overwhelm my *vast* readership with such excesses as *daily* posting, but I found this gem in my email while cleaning out my inbox just now, and I want to put it somewhere where I will see it again.  So here it is- Lessons from Abu Huraira’s fingers. 🙂

    “I, ya Rasulullah!” Such were the words of the great Companion, Abu Hurayrah (radhiAllahu anhu) in acceptance of the request of his beloved, when he asked, “Who among you will accept of me the following words and adopt and execute their meaning or teach someone to adopt them and act according to them?”

    Then, as Abu Hurayrah recalls; “So he held my hand and counted five things according to my five fingers as follows.” Upon pondering over this sentence, one can rightfully assume that this act of the Prophet (sallaAllahu alayhe wasallam) of teaching Abu Hurayrah in such a personal manner – one by one, on the fingers of his hand – was a significant step in the effort to keep these words etched in his heart. In fact, it was a method of aiding him in fulfilling the responsibility to which he agreed to moments earlier.

    So, what were these teachings that numbered the fingers of Abu Hurayrah’s hand?

    عن أَبِي هُرَيْرَةَ رضي الله عنه ، قَالَ : قَالَ رَسُولُ اللهِ صَلَّى اللَّهُ عَلَيْهِ وَسَلَّمَ :
    ( مَنْ يَأْخُذُ عَنِّي هَؤُلاَءِ الكَلِمَاتِ فَيَعْمَلُ بِهِنَّ أَوْ يُعَلِّمُ مَنْ يَعْمَلُ بِهِنَّ ؟ فَقَالَ أَبُو هُرَيْرَةَ : فَقُلْتُ : أَنَا يَا رَسُولَ اللهِ !
    فَأَخَذَ بِيَدِي فَعَدَّ خَمْسًا وَقَالَ :
    اتَّقِ الْمَحَارِمَ تَكُنْ أَعْبَدَ النَّاسِ ، وَارْضَ بِمَا قَسَمَ اللَّهُ لَكَ تَكُنْ أَغْنَى النَّاسِ ، وَأَحْسِنْ إِلَى جَارِكَ تَكُنْ مُؤْمِنًا ، وَأَحِبَّ لِلنَّاسِ مَا تُحِبُّ لِنَفْسِكَ تَكُنْ مُسْلِمًا ، وَلاَ تُكْثِرِ الضَّحِكَ ، فَإِنَّ كَثْرَةَ الضَّحِكِ تُمِيتُ القَلْبَ ) .
    رواه أحمد والترمذي والطبراني في الأوسط

    Keep away from prohibited things and you will be the best of worshippers.
    Be content with what Allah has given you, and you will be the richest of people.
    Be good to your neighbor and you will be a true believer.
    Love for other people what you love for yourself and you will be a (perfect) Muslim.
    Do not laugh too much, for excessive laughter deadens the heart.

    (Recorded by Ahmad and al-Tirmidhi)

    The rest of the article is here, and a great read for anyone in need of a refresher of some fundamental standards of Muslim character. 🙂  And really, who doesn’t?

  • Momma’s Dinner Salad

    • One sliced tomato
    • One cucumber, but only half should be put into the salad because Iman will have walked away with the other half
    • One scrambled egg that Khalid didn’t want for breakfast
    • A handful of sunflower seeds, because they’re healthy or something like that
    • A handful of spicy roasted corn, because it’s tasty though definitely not healthy
    • Three sliced mushrooms, which neither of the children are interested in
    • Way too much full-fat ranch dressing
    • A huge dollop of yogurt
    • Oh, and some lettuce.  Somewhere.

    Salad is healthy, right?  *nodnodnod*

  • Because sometimes, you really need a hamster…

    (I am in bed falling asleep for a much-needed power nap when Iman lets herself in and stands at the head of my bed.)

    Iman:  Momma, I get it a wabbit?

    Me: (trying to talk and not wake up at the same time) A rabbit?  Honey, you don’t need to get a rabbit.

    Iman: I get it a ham-sto?

    Me: We’re not getting you a hamster.

    Iman: Momma, I need  it a ham-sto.

    Me: Ok, go get a hamster.

    She leaves the room and I start falling back asleep.  I am vaguely aware of Iman returning, putting something next to my chin, and then patting me.  And when I wake up half an hour later, I’m cuddling this:

    It’s Harry the Happy Hamster.  Lil Grey’s kids left him here once upon a time, and he’s been an important member of Iman’s ridiculously diverse collection of stuffed toys ever since.

    It was a nice nap.  Alhamdulillah. 🙂

  • And now that the cat’s out of the bag…

    And now that the cat’s out of the bag…

    Phew! I can finally blog about what’s been on my mind!

    Ok, what’s up with the Nuchal Translucency screening? And why did my doctor ask me if I wanted one? I asked her what it was for, and she said that measuring the Nuchal fold in a developing fetus could help determine whether or not your baby has a chromosomal abnormality.

    *awkward silence*

    And then what?

    Well, if it’s positive, you can get further testing done to determine whether your baby has Down’s Syndrome.

    And then?

    Well, then about 90% of fetuses with Down’s Syndrome are aborted.

    You know, they’re working on a prenatal screening for autism. So that potentially, individuals who have autistic traits can be identified before they’re born.

    I wonder how high the abortion rate would be, and I think of how amazing, how silly, how sweet, how challenging and fulfilling it is to have Khalid as my son, and how awful it is that parents should choose to kill their children out of… what, fear? Laziness? A murderous need for the neurotypical? An overpowering revulsion to special children? If both of my children were normal then perhaps someone who supported prenatal screening (and subsequent abortion) could tell me to get off my high horse and that I shouldn’t judge a man until I’ve walked a mile in his moccasins, etcetera etcetera. But I don’t have a horse and I know for a fact that Allah does not test anyone more than they can bear. I’ve walked a few miles in special needs moccasins, thank you very much, and I think parents who kill their children out of fear should have their moccasins removed and thrown at them.

    And do not kill your children for fear of poverty. We provide for them and for you. Indeed, their killing is ever a great sin.  The Qur’an, Surah Al-Isra, 31

    Is fear of poverty the same thing as whatever it is people are fearing when they abort babies with Down’s Syndrome?  I’m not sure what exactly it is they’re afraid of- fear that their child will be made fun of?  So let’s screen for babies with really big ears.  Fear that their child won’t be able to hold a job?  Let’s screen for incompetency too then.  Oh, and blindness!  Don’t forget blindness!  Maybe it’s fear that their child will never lead a ‘normal’ life?  Well, I don’t know if they can develop a prenatal test for turning into an alcoholic or drug addict or someone with bipolar disorder, and I think humanity has yet to apply a standard for what a ‘normal’ life is, but let’s run with this, shall we?

    Let’s develop a prenatal test to screen for any and all conditions that cause children to face challenges throughout their lives while causing their parents to sweat blood and bleed tears to provide medical care, education, and adequate opportunities for their children in a world that doesn’t give a hoot.

    And then, let’s abort the entire human race.

    Because every child is hard work.  Every child costs money.  Every child is in danger of ‘not leading a normal life’ and no child, no matter how thick their Nuchal fold is or how low their amniotic testosterone rate is, comes with a guarantee for an easy upbringing, a bright future, and a normal life.  Being normal isn’t a guarantee of all things bright and beautiful  any more than being ‘abnormal’ means a life-sentence of misery, toil, and complete unhappiness for the entire family + the affected child.

    In all of this, I don’t feel sorry for the aborted children as much as I do the parents who chose to abort them.  The children got a one-way ticket to Paradise.  They were made for Jannah.  It’s the parents who have cheated themselves out of the most rewarding journey they could possibly have embarked on, the greatest test of their patience and the greatest blossoming of love they could feel for another human being.  On a side note, they’ll have some questions to answer in the next life.  But in this life even, they have cheated themselves.

    You’ll never know how amazing it is to stand on top of the mountain unless you’ve climbed all the way to the top.

    I told the doctor no thank you, I have one special needs child and I can have another one.  She nodded at me and smiled.

    “Good,” she said.  “I have a special needs child too.  And I would not have it any other way.”

    Me neither.  AllahuAkbar.

  • A Letter from HF

    Assalamalaikum wa rahmatullahe wa barakatuhu everyone-
    Alhamdulilah we have some very good news to share.  Allah (SWT) is  insha-Allah blessing us with another child. The current expected date is set 2nd/3rd week of June.
    We are very happy about this, especially since we can now justify the minivan with flame stickers and an “R-type” sticker in the back. The kids will love another companion, and we’re pleased that our extensive collection of car seats will provide more value.
    I would be grateful if you could keep us in your duas- duas for our children and for their Islamic character, duas that they may become a source of comfort to us and a sadaqa jaariya. May  Allah (SWT) give all our children a character that He loves. Ameen.
    I know you may already be asking: Waleed, in all of this, how are you doing? I’m doing great, thanks for asking! And yes, so is Abez. She is a fantastic trooper and thanks  Allah (SWT) every day for this blessing.
    Jazak Allah Khair,
    Waleed

  • Randomly Random Ramblings -or- Anything but open my work email, hunh?

    So we make plans, but Allah is the best of planners, so the visa for Joy’s replacement won’t be ready until Joy herself gets back. So Khalid will only start going to school once she’s back again, because as his Case Manager said, there was no point in him coming for snack + playground to drink his juice and play and then go home again, especially without a shadow, because we didn’t want him to be reinforced in negative behavior patterns that he would most likely develop in a trained shadow’s absence.

    So we’ll stay home and play PBSkids.org and practice our handwriting in the mean time 🙂 Alhamdulillah, I know there’s a reason for everything so I don’t feel annoyed at the time lost. And the last thing I want is Khalid running amok in the class (and me hobbling behind him) while the teachers look on warily and then give him the boot after his three week trial is up.

    Also, Iman is lately into negotiating. She asked me for a piece of cake after she had already had one, I told her no. So she asked if she could share a piece of cake. Then she asked if she could borrow a piece of cake. Then she asked if she could buy a piece of cake. When it all failed, she grinned at me and said, “Momma, chokit?”

    No sweetie, no chocolate.

    It’s strange being one hand short at home. On a daily basis, we’re usually a party of 5- Me, Cindy, Joy, Khalid, and Iman- and I remember once shopping in Lulu Al Barsha and turning to look at my entourage- it looked like I had one shopping cart and one nanny per child. And you know, here in Dubai, it wouldn’t be the first time I’ve seen it. I saw a woman with triplets and matching nannies last night. I used to scoff at mothers with nannies but now that I have two kids and limited mobility, I figure as long as they’re happy, well-paid, and earning a halal income, good for them. If a woman who lives in an extended family is allowed to have the grandma and aunties and cousins all pitch in and help without that making her less of a mother, then there’s no reason why hiring help (instead of just being related to it) should make you less of a mother either.

    (And besides, you don’t need a nanny to be a bad mother. There are lots of really bad mothers out there who do all the laundry and diapers and the emotional abuse themselves. Maybe if they had help they’d be less frazzled and more loving. AllahuAalim.)

    Heh- can you tell I still have a wee bit of existential egalitarian typically American guilt about needing help at home? Once upon a time, I was adamant about doing everything myself. My own mother refused to get help, even when we lived in Pakistan as children, and we only hired our first housekeeper when I was 20- long after my mother would have needed help with diapers and hair-pulling. This too was because both parents, as well as every single one of us siblings was working. Daddy and lil’Bro were running Chez Daddy, Momma (mine) was teaching English, I was teaching American accents to diplomats and Owlie was running a news agency. So a sweet young lady named Najma did the sweeping, mopping, and dusting, and because our Momma raised us right, she was a member of the family that my father still checks in on when he returns to Pakistan on an annual basis.

    But I digress. I used to feel guilty. Sometimes, I still do, but I’ve come to accept that help is a blessing from Allah as well as a test of my character as a Muslim, so I ask for help when I can’t get into the cabinets beneath the kitchen counter (you’d be amazed at how important a functioning knee is) but I don’t ask anyone to get me a glass of water. And my kids say please and thank you to Cindy and Joy and obey them- else suffer the Wrath of Momma.

    I never planned to have a housekeeper and a therapist on staff, but then I never planned to wreck my right knee and have a child with autism. And Allah is the best of planners.

  • The enemy within

    Rubaiyaat xx & xxi

    i-xix here

    He whispering, withdraws

    To divert you from your cause

    The snow-white lamb of ‘later’

    Has strangely wolf-like claws.

    ****

    He took the path of arrogance

    And insists you follow suit

    To plant the seed that grows the tree

    That blossoms rotten fruit.

  • Preventing Low Iman

    Preventing Low Iman

    It’s sneaking up on me again- low Iman.  And I don’t mean my novelty-sized daughter.  I mean my levels of faith, how alive my heart feels, how easily I wake up for Fajr and how hard I work to keep my mental jukebox clean and my thoughts of other people charitable.  It’s predictable, really.  In my case the smooth, downhill path takes some routine turns.

    First, I stop making dua consciously.  I figure I need to be quick and so I make it short, sweet, and mentally absent.

    Rabbana aatina fiddunia hasanatuawn wa fil aakhirati hasanatauwn wa aqina ‘azhaban-naar.  Ameen.

    Our Lord, grant for us in this world Good and in the next world Good, and protect us from the fire of hell.  Ameen.   I make dua on auto-pilot and rush off to do something “more urgent” and soon, the loss of concentration in my prayers follows.  It starts with a bit of mental wandering and gets so bad that I raise my hands for takbeer and greet the angels for tasleem and wander off knowing I’ve prayed only because my head is covered and I left my chair in the middle of the floor.

    And then the time-wasting starts-  crappy internet sites with top ten lists of information that add zero value to my existence as a human being. (Seventy years of TV catch-phrases, anyone?)

    And then the video games sneak in and I turn my eyeballs to glue pitting the tiny forces of my massive army against the pathetic forces of some other tiny army waging epic battles that lead to nothing gained and hours lost.

    And if you ask me when I find the time to do this, it’s now- when the kids and even HF are sleeping- when I should be asleep too, or at least working to clear the backlog of email that’s threatening me with a virtual avalanche.  I stay up late for no reason, delay my salah until I no longer feel like skirmishing, pray late, wake up groggy, and every day find myself an few inches deeper into mental muck and a few inches farther away from wanting to get out of it.  Because the farther I let myself wander from Ihsan and Taqwa, the harder my heart becomes and the harder it is to come back to it.

    Other things follow too – hate.

    Yep.  Hate.  I could be soft on myself and call it negative sentiment override, which is defined as seeing what someone else does in a primarily negative light even when it is neutral or even positive.  But whatever you call it, it’s the jaundiced, shaitaan-powered frame of mind that tells you when a person doesn’t call, it’s not because they forgot to, but because they don’t care to because the entire history of your relationship is all take and no give.  If they seem busy it’s because they don’t care to make time for you even when they have time for everyone else in the entire world.  If they stepped on your toes and said sorry, they would only be apologizing because they were rubbing it in.  That’s negative sentiment override, and it’s pure poison.  The only way to get rid of it is to beg Allah for help, because allowing it to remain kills your heart.

    I think it was Marx who called religion an opiate for the masses- an addictive drug to stifle the brain and drowse your way through the harsh realities of life without having to open your eyes to see them through.  Other people have called religion a crutch for those too weak to handle reality.  I tell you- religion is an antibiotic, a vaccine, a super-vitamin, and the only way to ensure good heart health.  Without Islam on my compass, I would be wandering hell-bent on time wasting, hating my fellow man, playing video games all night and snapping at my children all day.  You don’t want to see me without Islam.  I never even want to be me without Islam.  I go off course pretty regularly, but I still have a compass and Islam is still true North and Allah is my destination, whether I go to Him willingly or not.  I just need a bit of help getting back on track.

    So here, dear everybodies, for me moreso than you- is my list of things to help soften my heart and put my Iman back on track.

    NOT SURFING THE INTERNET– This is in caps.  This is important.  Using the internet is one thing, but surfing is a matter of aimlessly clicking from one stupid black hole of time-loss to another.  Surfing is the devil.  You know what I mean.

    Making dua with my eyes open and my brain on- I always thought it was funny how the major phone service provider in the UAE was called Etisalat- it shares the same root word as Salah- prayer- why?  Because they are both words that imply connection.   I need to make my dua a connection, a one-on-one conversation with God where I call upon Him in humility, hope, fear, and sincerity enough to say what I mean and mean what I say.  That’s always a powerful heart-softener for me, because once I get started, it’s like the levy breaks and all the pent-up fear, frustration and need just pours out.  It’s hard to describe how wonderful it feels to really pray- to break down before your Lord and ask to be built again.  It’s humbling and calming and exhilarating and it makes me feel alive after having a half-dead heart for so long.

    Paying attention to Salah: The wonderful thing about actually paying attention to Salah is that it becomes some sort of… religious experience.  Irony intended.  How many of us could call our Salah a religious experience, and how many other things do we call religious experiences instead?  One thing that helps for me is not using the short surahs from the very end of the Qur’an that we’re all taught as kids.  I know that Surah Ikhlas represents something as immense as the Oneness of Allah and His right to be worshipped, but I start from the first Qul and stop at the last Ahad without ever feeling the weight of those verses.  For me, the verses that have the most meaning and hold my attention best are those I learned as an adult because my understanding and appreciation of their message is more mature.  I recite lines that are close to my heart, that I learned during times of difficulty and stress, that bring me relief and when I repeat them, I remember what a comfort and what a blessing it was just to read them.

    (Verily, We have created man in toil. Surah Balad 90:4)

    (There is no soul but that it has over it a protector. Surah At-Tariq 86:4)

    Reading Quran: It’s sad, but when my Iman is low I find this the hardest thing to do.  Why?  Because I still struggle with reading the Arabic, but I recognize that much of the experience is lost if I only read the English.  So doing the right thing is too hard but doing the next best thing is no fun, so I end up doing nothing.  What I ought to do is recognize that one of shaitaan’s most powerful tool is laziness, and hit myself over the head with the Qur’an (reverently, of course) and then just start reading.  Once I start, I love it.  It’s getting started that’s hard.

    Using YouTube: There are some people for whom YouTube is a huge Fitna.  Alhamdulillah, I’m not one of them.  It is a relief and blessing and an immense kindness from Allah that I, who can get addicted to anything and distracted by reading about bacon-flavored mouthwash- find no such allure in YouTube, and my playlist is filled with things that comfort and inspire me, my ultimate favorite being this beautiful recitation of Surah Mutaffifin by Mishary Rashid Al Afasy:

    And then this one,

    Because I love the last part of the Surah that describes how, when the call is sounded on the Day of Judgment, man will flee from his brother, and his father and his mother, and his wife and children out of fear of his own account. It gives me the God-fearing goosebumps, it does. What can I say, Haq ka khauf ajab ghum hay. I don’t know much in Urdu, but I know this line from my Arabic teacher, who taught Owl and I years ago one sentence to separate the Letters of the Sun (Haroof Shams) from the Letters of the Moon (Haruf Qamar), and it’s composed of only Letters of the Moon. Loosely (and badly) translated, it means that Fear of Truth/God/Justice is an amazing/wonderful sadness.  So yeah, YouTube, heh.

    Write Something: It’s fairly obvious that I use my blog for catharsis, but I also really need it for reinforcing my Iman.  It’s said that the best way to learn something is to try and teach it to someone else, and in my case, the best way of remembering something is for me to tell someone else about it.  Plus, I like to write/do/create/color/sew/Photoshop- arts and crafts was my favorite activity in summer camp and when Khalid and Iman and I sit down to color, I’m looking forward to 96 crayons and some glitter as much as they are.  I just like to make things.  So when I feel down and dead, I like doing things that are creative.   And blogging is easier than writing a poem, so hence, this blog entry. :p

    See? I’m sounding more positive already. 🙂  Alhamdulillah.  My Iman may be low (and my daughter is short, too) but I have control over which direction I let it go in.  And recognizing that shaitaan has tons of seemingly harmless distractions can help me avoid them.  I don’t really ever *need* video games.  If my head is full of steam then I need to vent to Allah or work on solving my problems instead of inflicting destruction upon fake civilizations.  No one really needs to know about bacon flavored mouthwash or seventy years of TV tag lines, and if I’m stressed out and need to unwind, I have a thousand ways of doing so that don’t look like banana peels on the gravelly path to perdition.  So take that, Sid Meyer. :p

  • Eid Mubarak!

    🙂

  • Out of the noses of babes

    Iman: momma, wook!   issa booger.

    Me: Yes dear, let’s get a tissue.

    Iman: I eat it?

    Me: No! Do not eat that!

    [Iman is startled by my reaction, and then understanding dawns on her]

    Iman: [nodding sagely] Iss berry spicy.

  • Sigh.

    Today is the end of day three without Khalid’s caregiver and therapist Joy, insert witty jokes about the lack of Joy in our lives here.

    Also, I don’t like email any more.  Or my phone.  Or the internet.  It all represents the constant inflow of work/requests/obligations that I am simply not equipped to handle without Joy on staff, and I am beginning to realize that in order to cope I may have to go partially AWOL from work.  Every time I open my inbox I see letters that needed urgent replies yesterday, work that’s overdue, follow-ups that I couldn’t make.  My RTM is an itemized list of so many pending tasks that the red flags are meaningless now.  I am frustrated, and the problem with being frustrated is that even if you do have five minutes to answer an email, you’re too frustrated to try.  It’s cyclical.

    And I’m tired.  And frustrated.

    And in the course of all this, my love, prayers, and admiration to all the autism mothers out there who DON’T have the benefit of trained caregivers, because you are braver, stronger, more patient women than I am.  You are also smarter than I am, because you’re probably not trying to launch a business and do consulting on the side.  You probably have your priorities straighter, and you might sleep better too.

    I know this entry is uncharacteristically depressing for me, but it’s been a tough three days.  Unless I put everything else on hold, I can’t give Khalid the attention he deserves.  But because business moves whether or not you do, I can’t.  But at the end of the day, I might as well, because I’m so far behind that things are becoming irrelevant.

    Sabr and Shukr.  Owl reminded me of Sabr and Shukr.  So I’ll take two of those.  And maybe, if I don’t hate my phone too much, you can call me in the morning.

  • Flying Solo: Khalid’s first day of school and other adventures

    Flying Solo: Khalid’s first day of school and other adventures

    So Joy- Khalid’s full-time caregiver and ABA therapist- is on vacation for a month as of yesterday, which was also Khalid’s first day of school, which was also the day that Iman fell down in the hallway and knocked loose and fractured one of her front teeth.

    This morning was our first day without Joy, as well as the first day that I attempted to run Khalid through his ABA program, as well as have a three-hour instructional design meeting for my ‘real’ job and then take Iman for an emergency dental appointment.

    The morning program was educational, in that I learned that it will take a whole lot more than her whiteboard markers to give me Joy’s superpowers.  The laminator chewed up my flash cards and spat them back out in a smelly, melted mess.  The kids got bored when I took too long to find the next program materials and Khalid knocked a cup of tea into a box of 96 crayons.  Why was the teacher drinking tea in class?  Because the teacher was a sleepy amateur, that’s why.

    The subsequent meeting was interesting, in that Iman sat in with the Business Development Manager and I to color and contribute her professional opinion on the course development- which was generally about butterflies, the beach, and where her marker went.  Also, she told the BDM that she was snotty.  And she was.

    The dental appointment went well in that there was little dentistry involved- Iman’s mouth needs three weeks to heal so that the tooth is no longer wobbly before they perform a root canal and remove the lower-half that is no longer viable.  (It cracked straight across)

    And now, Khalid’s first day of school.

    I think he may have had fun, but Joy and I were quite nervous, especially since Khalid is not really enrolled- he’s being observed for an hour a day, two to three times a week in the KG class to determine whether he can be there without causing massive disruption to the ‘normal’ kids.  I don’t remember kindergarten being that tense when I was a kid, but then the principal and school counselor probably weren’t both in the class to observe me.  And the teachers probably didn’t have the wary, anxious look of two women with 28 three and a half year olds who have just been handed the Unknown Special Needs Quantity X.  Khalid is a year older and a head taller than the other children.  His academic scores put him in second grade, but his verbal and social scores place him in nursery, so KG-1  is somewhere in the middle and our goal is to help bring his social and verbal scores up while maintaining his academic scores at home.

    He had to be interviewed to be let in.  We had to submit his psychological assessment, sign a legal disclaimer, take official responsibility to protect other students from him and answer questions about how loud, how often, how intensely and for what reasons he could freak out.  We spent three hours on the first day with the school counselor and the principal and the registrar, and while I am grateful, Alhamdulillah, and relieved that he’s being given a chance to go to a ‘normal’ school, my maternal hackles have been raised in indignation for Khalid.

    (He pinched Joy, will he pinch other children?)

    (The assessment mentions self-injury, can you tell us about that?)

    (Why are his academics so far ahead?  Why haven’t you been pushing his social and verbal instead?)

    [Gee, maybe he’s a classical case of autism?]

    (If you even think that he might be about to make noise, just take him out of the class.)

    I’m sure Khalid wasn’t offended, at least not by anything the staff said.  Instead, he was upset when he walked into the class and noticed that the letter C was missing from the alphabet lineup on the wall.  He asked where it was, noticed it on the center of the board, and attempted to put it back where it belonged.  We spent a few minutes gently distracting him away from the missing C (and some noise was involved) but then he noticed that the word Sunday was out of place in the days of the week lineup.  It was on another wall because it had a special schedule.  He tried to pull that down too.

    Other children were drinking juice, so he asked for one by writing out J- U- I- C- E with his finger in air-letters a foot tall.  You should have seen how fast Joy and I rushed to get him some.  He sat during snack-time eating his apple and drinking, reading every written word and chart on the wall from his seat at the Brown Bears table while other children chatted and fussed with their food and had the kind of conversations that kids in kindergarten do.  One little girl peed in her chair and was taken away crying.  One little boy got scolded by the teacher, and in turn, Khalid scolded the teacher.  I don’t think that went over well.

    The principal came in and asked Khalid how he was doing.  He answered ‘Fine!’ and Joy and I gave each other looks of desperate encouragement and relief.  When it was time to go out and play, he did a reasonable job of staying in line with the other kids as long as Joy and I were flanking him on both sides.  Khalid climbed and ran and went down the slides, Joy and I got a chance to relax.  But then it was time to go inside again, and Khalid has a hard time with transitions, so he sprinted down the hall out of protest and I had to chase him.

    When I finally caught him, we bumped into one of the staff members from the center that is managing his case, and to be honest, it was a breath of fresh air.  That lady, like other therapists and case managers, looked at Khalid like a miracle, a prodigy, a best-case scenario and the child that every mother is jealous of.  In the world of autism, this may be true- Khalid is making amazing progress, has manageable behavioural issues, and little to no aggression.  The director of the autism center calls him a star and a poster boy for ABA, but here in the world of normal kids, Khalid is a disruption, an anomaly, a little boy who can’t follow simple instructions and screams at adults if they press him for social interaction.   The teachers don’t beam at him and hug him and tickle him and engage with him, they sigh and keep a few feet back.

    This morning Khalid had a cough, so I texted the school counselor to let her know we would stay home.  She texted back saying let him stay home for the rest of week, and she would see him after the weekend.   I know she meant well.  I know there’s no law saying they have to take Khalid.  I know their teachers don’t get paid extra for having a unpredictable, neurologically challenged little boy in the midst of their crying, peeing, nose-picking kindergarteners.  They have enough to handle without throwing Khalid into the mix.  But they could, at least, smile.  Just a little.  And watch with patient kindness instead of stern observation, clipboards in hand.  And say things like ‘Don’t worry if he makes a little noise, the normal kids make quite a fuss too…’ instead of  ‘If you even think he’s going to make noise…’

    Even Joy, who’s  been doing school shadowing and ABA therapy for ten years, was put off by the attitude.  Or lack of warmth, rather.  There’s willingness, but not much warmth.  And I feel like saying ‘take your stupid school, Khalid doesn’t need it!’ but the truth is, he does.  And there are only a handful of schools in the entire country that are willing to consider letting him in, and I should be grateful that there’s one so close to our house and already working with his therapy center to help facilitate inclusion.  And plus, when the kids were supposed to be putting their heads down for some quiet time, and Khalid was doing some worksheets on his own to bide the time, one little boy raised his head, peeked over at Khalid’s work (Write the number twelve, then find which groups of pictures have twelve items in them, and circle them) and exclaimed, “How did you do that!?”  And Joy and I beamed with pride, but then it was time for the kids to go to their Arabic class and it was time for us to go home.  Because the management believes that Khalid would not be prepared to learn one Arabic letter and one color in Arabic per week, even though I told them he already knows the alphabet in Arabic.

    (And he can count to one hundred)

    (And he knows his shapes and colors)

    (And he can add numbers from 1 to 10)

    (And he can read using phonics)

    (And he is computer literate, knows how to type, operate a DVD player, use Google Chrome, YouTube, Starfall.com, and PBSkids.org)

    It took me some time to accept Khalid’s autism, so I should cut other people slack too.  I know.  I need to remind myself that they don’t know where he’s been to appreciate how far he’s come.  And there’s nothing amazing about a him defending himself from interacting with the teachers or not yet speaking in full sentences.   And yelling at anyone who raises their voice in his vicinity is rather disruptive to class.  I’ll admit that too.  But he’s my son- my amazing, unusual, awkward, shy, silly, academically brilliant but socially disabled son and I think he’s the most miraculous child in the world- and anyone who thinks poorly of him because of his disability is going to have a very hard time getting out of my bad books.

    But I’m a grown up, so I can’t be defensive, I have to be the most outgoing, outspoken, cheerful, useful, special-needs shadow mom that KG has ever seen, and I have to support these two overworked young ladies and help teach them how to manage my ABA poster-boy.

    (And if the thumb tacks should go missing and unexpectedly end up on someone’s chair, I’ll try to keep Khalid from reacting to the noise of their satisfyingly shrill surprise.)

    By Momma, the end.

  • An Abaya Built for Two

    So Iman has this routine that’s specific to us praying at home, which generally involves getting on all fours, crawling between my feet and then standing up inside of my Abaya.  Because I use a chair for half of my salah (for sajda, specifically) the space between my feet exists for the entire prayer, although previously, Iman has thought of better things to do halfway through salah and crawled out from underneath of my clothes and then run away to do something really worthwhile, like pinch her brother.

    Today though, she almost made it through all four rakat of Isha.

    Because she brought a book with her.

    About dinosaurs.

    And she read it.

    From beneath my Abaya.

    Alhamdulillillahi Rabbil ‘Alameen….

    Momma, di-no-sho!

  • Where’s my lawyer, waaaaaanh!

    (Iman, laying in her bed and protesting the gross injustices that are forcing her to be subjected to an obvious violation of her civil rights – a nap – resorts to bargaining.)

    Mommmaaaaa!

    — (no response from Momma)

    I want coffee!

    —

    I want milk!

    —

    I want water!

    (I offer her a sippy cup of water, she refuses it)

    —

    I want masjid!

    —

    My nose hurts, ow!

    —

    I want wake up!

    —

    (Iman falls asleep)

  • *urp*

    I don’t know why I’m even blogging right now, except that occupying my mind helps distract me from the state my body is in right now. I slept until 1pm today. Straight- or nearly straight- through from ten pm the night before. And I woke up in a pile of toys and books and vaguely remember Khalid and Iman coming to jump on me and kiss me and yell MOMMA YAKE UP! enthusiastically, but then Joy and Cindy very kindly removed them from my dream and sleep continued.

    And here I am at 8:45 pm, HF is putting Khalid to bed, Iman is already asleep, and my stomach is churning itself in bright green waves of turbulence. On the plus side though, I did manage to get out of the house today and met not one, but two nice people.

    Nice Lady No. 1 gently tapped me on the shoulder while I was morosely nursing a cup of coffee outside of the Ikea in Festival City. She had a free spot at her table, and invited me to join her and her adorable hot-dog eating six year old. May Allah bless her for her kindness, we chatted for about twenty minutes and I even almost forgot how sick I was feeling.

    Nice Lady No. 2 is, apparently, a neighbor from up the street who Joy introduced me to, and she sat with me in the park this afternoon while we let the kids have their daily run-amok. Warm late-afternoon sun, sounds of children laughing, nice conversation- it was another mini-vacation from being sick and exhausted, and I think I may be beginning to understand why it is such a blessed act in Islam to visit the sick. Conversation helps. Thinking about something other than how toxic you feel helps take your mind off how toxic you feel. I need to remember how good it felt to talk to someone and why I must remember to pass this on to someone else if I get the chance.

    And of course, there’s HF- who helped me make dinner, and yesterday ordered lunch, and is putting Khalid to sleep right now, and who gently wakes me up for Fajr after having turned the water heater on first, who covers me up when I fall asleep in an arm chair and goes out of his way after work to buy Khalid’s hypo-allergenic breakfast cereal.

    May Allah bless you, HF, and Nice Ladies No. 1 and No. 2. May the kindness you’ve shown me be returned to you a hundred fold in this life and the next.

  • Beware of Panda Chinese in the Sharjah City Center

    Day four of noodle-induced food poisoning. Being brave and having an egg for breakfast. If anyone needs me, I’ll be laying down on this soft, soft keyboard.

    *urp*

  • Why I feel sorry for Spiderman

    Why I feel sorry for Spiderman

    So there are special needs school in Bahrain that do a wonderful job of catering to children with Down’s Syndrome and CP, but not a single ABA therapy center for children with autism on the whole island. There is one doctor qualified to diagnose for autism, but he doesn’t, because he feels he is cheating parents by presenting their children with a plan of action that no one in the entire country can implement. We met over forty parents desperate for a diagnosis, and people begging us to open up as soon as possible because there were no treatment options for their children and time was ticking. Bahrain was eye-opening, welcoming, depressing, and amazing in so many ways.

    And Pakistan- wow, I didn’t even talk about Pakistan. People are pretty much in the same boat. It doesn’t matter whether you’re rich or poor, if you have a child with autism, you’re on your own.

    I go to sleep at night with half-baked ideas churning in my head for how the heck ABA therapy can be brought to Pakistan and Bahrain. We have someone in Bahrain who is well-placed to become a local partner, but no one in Pakistan yet. And when I think of the thousands and thousands of children never getting diagnosis or help, and the stress their parents are in, and the paralyzing fear of watching a non-verbal, completely dependent child grow into a non-verbal, completely dependent adults with no way of earning a living, caring for themselves, or even being able to feed themselves- I get really, really overwhelmed.

    And being unable to separate my professional self from the parental self, it just makes me want to cry. I can’t help everyone. I can’t save the world. I’m one single parent and I’m starting with four ABA therapists and I’m starting in Dubai and it may be a very, very long time before I can do anything in Pakistan. The only thing I can think of is appealing to wealthy overseas Pakistanis to help sponsor the training of Pakistanis so that we begin to grow a community of local therapists, because the cost of importing therapists to Pakistan (as well as Bahrain, btw) is well beyond unsustainable. The distance between a Dubai salary and a Pakistan salary can be measured in light years. People spend, for a nice family dinner one night in Dubai, the amount that a middle class family in Pakistan will earn in a whole month.

    I feel sorry for superheroes sometimes. If he were real, I’m sure Spiderman would lie awake at night (when, and if he attempted to sleep) beating himself up about crimes that happened two blocks away from another crime that he was busy preventing, because he can only be in one place in one time, and he can’t save everyone from everything.

    But here is where I have an advantage over Spiderman. I believe in Allah. And I know that he will only ask me about what I was capable of doing, and that the ultimate responsibility and care and guardianship of every one of those non-verbal, completely dependent children is with Allah. Whatever their situation is, whatever their parents and families are going through, Allah has promised that it isn’t more than they can handle, and the entire purpose of hardship is purification, fortification, and evolution of the soul. And I remember how proud one mother in Bahrain was as she told me that her blind, autistic, non-verbal daughter was inventing her own sign language. She was beaming, and I could tell from the look in her eyes that there was joy, not bitterness.

    If Spiderman were real, he would have to believe in God, and he would have to believe in a Day of Judgment where all the muggers, murderers, rapists, child molesters who managed to get away with crimes while he slept were given their due. If he didn’t, he would have gone mad out of the sheer frustration and futility. He would be a man with his back against a tidal wave, being able to protect only the sand under his feet, if at all.

    I am so, so grateful, SubhanAllahi wabihamdihi!- to know that the world has a Caretaker, and He’s not expecting me to do His job. I can help my fellow man, my fellow autism parents, the children that I think of like my own beautiful and silly son, and it is a benefit to myself and a purpose for my life, but it is not the filling in of any sort of gap. Allah leaves no gaps. Everything happens for a reason, and His reasons are always good ones.

    So, if you happen to a rich Pakistani or Bahraini, or a human being who loves other human beings, and you’re interested in helping train ABA therapists for families who would otherwise not have access to ABA therapy for Allah knows how long, email me. Or leave a comment. Or just make dua. We can’t save the world, but there’s a little bit of sand in the palm of my hand, and if you can help me, we can try to keep it from getting washed away.

  • Fox Host: All Terrorists are Muslim

    Source

    Rick Sanchez was fired by CNN this month within 24 hours of his sort-of suggesting that Jews run the media.

    Compare the response to that episode to the non-reaction of the media today after Fox & Friends co-host Brian Kilmeade said, “Not all Muslims are terrorists, all terrorists are Muslim.”

    Kilmeade’s statement is both inaccurate and prejudiced, in a way that’s more clear-cut than Sanchez’s semi-coherent rant.

    But it’s been instructive to watch how Kilmeade’s comments haven’t created much of a stir at all. Maybe it’s because this sort of thing is expected from Fox. Or maybe it’s because you can say a lot of bad stuff about Muslims with impunity.

    Just in case we’re wrong about this, we’ve put in a request with Fox (and reached out to Kilmeade on Twitter) to see if the network has any comment about the appropriateness of his rhetoric.

    Abez sez sigh.

  • Look out, Bahrain!

    Leaving tomorrow morning for Bahrain. Here’s why- Alhamdulillah. 🙂

  • Would you like fries with that?

    Me: Iman, what would you like for breakfast?

    Iman: Hmm?

    Me: What would you like for breakfast? Would you like some cereal?

    Iman: No. I wanna helicopter.

    Khalid: Hummus!

  • And later he told me that he had a race car bed, but I don’t think I believe him.

    Sometimes your eyes are sleepy but your brain is awake. And that’s why it’s past midnight and I’m on the computer. (Sorry HF, I tried!) And I will probably just put in half an hour of trying to figure out my shiny new wordpress theme at AutismUAE.com, but first, something I want to remember.

    Khalid and I went to Ace Hardware today. We were browsing through the garden section, and Khalid found a swing and sat down. So I sat down next to him and we starting swinging. Then he laid down and put his head in my lap. And I looked and him and said “Hey, what’s your name?”

    And he said Khalid.

    And I pointed to myself and asked, “What’s my name?”

    And he answered the same- Khalid.

    And I said “No, my name is Momma!”

    And he looked at me and said “Momma. I know.”

    And that was amazing. You may not understand why. And I don’t think I can explain it. But I don’t want to forget it. SubhanAllahi wa bihamdihi.

  • 4am: What, us? Nocturnal?

    On the bright side, if Khalid didn’t wake up in the middle of the night, I might never blog. On the annoying side, it’s 4 in the morning and he’s been up since 1:30, jumping, rolling, climbing, and lavishing WWF-style affection (half-nelsons, not pandas) on his stubborn “WE ARE STAYING IN BED!” momma.

    This is how it works. Joy puts Khalid to bed by eight o’clock. HF and I get to bed by around 11, realistically speaking. Khalid starts thrashing and kicking and whining by around midnight, and I wake up and pat him and he goes back to sleep. I fall asleep again and am woken abruptly an hour or so later by a 45 pounds of kisses and head-butts and elbows and knees and pinching- he likes pinching. He doesn’t do it out of malice, he does it out of love, and if I’m asleep (or not awake enough to defend myself) he goes to town with it and so in addition to being lovingly jumped on, I’m also adoringly subjected to severe irritation. I wish I was more patient in my sleep. Also, that someone made pinch-proof pajamas. I have ideas- a single head-to foot suit made out of two layers of quilted flannel. Like a giant potholder. *nodnodnodyawn*

    But I’m up, Alhamdulillah, so I might as well make the most of it and do a proper update. We picked our first therapist, but we couldn’t hire him because he had an immigration ban due to having had Hep B in 1992 (immigration can be rather strict about this) so he’s going back home on Saturday, poor guy. We’re screening other therapists and need to pick at least four by… wow. I just forgot what I was doing and answered work email for forty minutes. Right. By next week. We need to have two picked immediately and all four picked asap. Hiring the fifth would be good, but should wait just to make sure we have that many parents ready to go as soon as we can provide them. Because I’m operating as close to cost as I can in the pursuit of making things affordable, we have to be very precise about scheduling. I can’t afford to hire therapists who haven’t been placed yet, so inevitably, the parents say yes, and then they wait a few weeks while I get the therapist. I wish the process was quicker, but I’m a startup and let’s see how this works, InshaAllah.

    But I don’t want to talk work. I live, eat, even sleep in AutismUAE right now. The other day, when Khalid was awake all night (again) my half-asleep brain was angry at him because every time he climbed in and out of my bed, he was using up one of my employee visas! And then a few nights later, I invited him into my bed because I thought we needed a receptionist for the office. :s

    But right, NO WORK!

    So, I was stealing a few minutes to relax in bed this evening when Iman discovered me laying down in the dark. She climbed up next to me and said Momma, I wanna story!

    So I told her to bring me a book, and I covered my eyes with my arm and hoped she would forget what she went to go get. But she came back with The Hungry Caterpillar, and instead of handing it to me, opened it up and started to read to me.

    Momma wook, a strawberry!
    Turnna page!
    Whereza strawberry milkshake?
    All gone, a butterfwy!
    The End!

    And then she looked at the wall and said Momma, it’s a eight o nine o cwock!
    (It was six)
    Momma sleep! Close eyes!
    (she poked me in the eyes to make sure they were closed)
    Then, she gently stroked my face and hummed, and after a few seconds, kissed me gently on the forehead.
    Then she whispered night-night and slipped off the bed and tip-toed out of the room.

    Sometimes you don’t know whether to laugh or cry, but in this case, I could happily have done both, Alhamdulillah. 🙂 I burst out laughing and Iman, realizing that something fun was happening, ran back into the room and jumped on the bed and we had a hug and a nice roll-about in bed. Khalid heard the fun and joined us, and I ended up feeling refreshed and awake and happy without even having snuck in a nap. 🙂 Children are such a blessing, SubhanAllah, and I would call it magic except that magic does not explain the thousands of mercies that Allah gives us through our offspring, their ability to make us feel alive and loved being just one of them.

    I’m also amazed by how quickly Iman and Khalid pick up my behavior and speech patterns, with Iman putting me to sleep and Khalid opening up the refrigerator and parroting the “Hmm, let’s see…” that I didn’t even realize I said until both children started saying it too!

    Ah, it’s 5:22 and time to pray Fajr. Maybe we’ll even go to sleep. One things we’re definitely not doing today though, is going to work. Again. But on the plus side, the other guy cancelled the meeting first, and I’m not happy that an already overdue project will be further delayed, but I am relieved that I’ll be able to get some sleep before my second meeting in the afternoon. Now if only the car hadn’t died and was being towed to the mechanic, I might be able to make it to that one too. SubhanAllah. 🙂

  • Letter to my boss

    Hi D, R-

    Am sorry to say that Khalid has been up all night for reasons known only unto him, so I will be unable to accompany HF into work today, howsoever much I was looking forward to a producitve and focused day of work that didn’t involve legos or people under the age of 23.

    -Abez

  • Choo-choo?

    Once upon a time there was a little engine who thought it could. And one day it decided to take on a few extra cars and take them over a big hill. It started out nice and slow and was chugging along (I think I can, I think I can!) and it slid back a few times but was still chugging away, and then one day, a powerful locomotive train appeared behind it and said ‘Hey, are you taking those cars over the hill?’ and the little engine said ‘Well, I’m trying to!’

    And so the locomotive hitched itself to the little choo choo and floored the engine and the little engine suddenly found itself screaming up the hill with it’s cars practically streaming behind it, and the little engine went ‘AAAAAAAAAAAAAAAH!’

    And that is the story of how AutismUAE, with business license barely applied for and website not yet updated, is receiving phone calls from parents who want their therapists yesterday and finalizing the itinerary for a tour of the GCC, the first trip of which will be in just two weeks. :s

    My little choo-choo is being helped along by Stepping Stones Center for Autistic Spectrum Disorders, an organisation with four offices in three countries and a wonderful director who is excited about making ABA treatment affordable for kids in the entire GCC. And Pakistan. And any other country where the parents are willing to come to Dubai once a month for case management meetings. That’s all that’s required. AutismUAE will give you a therapist, Stepping Stones will give you a program and put a psychologist in charge of your child’s case, and you check back in with us once a month to make sure that everyone- child, therapist, parents- is doing well.

    And the little engine that could looked at the proposal, and the fact that it had the word ‘Global’ written on it, and then it felt the sudden urge for a warm fluffy blanket and a cup of soup and a tiny cottage somewhere to enjoy them in.

    Not that I’m not excited, I’m very excited. But I am nervous, over-busy, missing deadlines, behind in my “real job,” and learning much more about time management than I ever wanted to. Case in point: When was the last time my blog was updated? If I were to create a list of ‘work’ that I enjoy, I would put my blog at the top and the real job at the bottom. AutismUAE would be second and third would be Muslim Matters, though they could easily tie for second place. It would look like this:

    1. Blog
    2. AutismUAE
    3. Muslim Matters
    4. Real Job

    Compare that to the list of things that are receiving top priority, which looks like this:

    1. AutismUAE
    2. Real Job
    3. Muslim Matters
    4. Blog

    Even blogging right now makes me feel guilty, because I can see the number of unread messages in my gmail tab and I know that none of them are fluff and all of them are important. But I have to stop and breathe and think. And sometimes, I even have to write. Right now, as I sit here, Iman is determinedly putting one-dirham coins into my pockets, and with each one, singing out, “Here you go Momma!” And yesterday, when we asked Khalid what he wanted for lunch, he thought about it and said ‘Big burger!’ and we asked him how many and he said “-one- uh- ten burger!” and we had a beautiful laugh, and for lunch, Khalid had many tiny burgers instead of one big one.

    And Iman’s back with a 25 fil coin and one US penny, and I should probably check where my purse is and where my two and a half year old is getting loose change. And Khalid and Iman have started to have arguments, which is amazing in terms of Khalid’s development, though infuriating from a parenting perspective. Iman and Khalid can be strapped into their individual car seats, sitting in silence, and Khalid will point to Iman and say, Iman! Stop Crying!

    And Iman will defensively reply Iman not crying! Iman talking!

    And Khalid will insist, Iman crying! Iman stop crying!

    And then Iman will escalate and yell back- Iman not crying! Iman talking!

    And Khalid will say No crying! No crying!

    And of course, Iman will reply Iman not crying! but by this point, she will be crying.

    One day passes beautifully, chaotically, unexpectedly and predictably into another, and before I know it I have 37 unread emails and a tour of the GCC. And I haven’t even printed my business cards.

    And before you think I’m in over my head or I’m complaining (yes, I’m talking to myself) I am not complaining, I do not need to be rescued, and I am not going to give up without a fight. The express train of Stepping Stones is a blessing, because once upon a time my client base was zero, and now, in a space of three weeks, it’s international. I asked Allah, I prayed and said Dear God, if AutismUAE is the right thing to do then make it easy for me, and lo and behold, I’ve skipped over the problem of too few clients and jumped right into too many. I’ve been partnered with an international service provider before I’m even a licensed business, and just last night I had a phone call from a mother who said “We’re waiting please, when will the therapist get here?”

    And none of this is from me, all of this is a blessing from Allah. Opportunities have appeared out of nowhere to land neatly in my hands. Now all I have to do is say Alhamdulillah, roll up my sleeves, and get to work.

    I think I can, I think I can.

    Choo-choo!

  • The Repetition of History? God Forbid.

    A short, amazing little video.

  • Today is not that day.

    One day, when I’m a grown up, I’m going to go to sleep at night at wake up in the morning.

    Khalid woke up at 3:45. And Iman woke up at four. So it’s a party. Hooray! 😀

  • 2am again, or, Why blogging in stream of consciousness should be done in full consciousness

    SubhanAllah.  It’s 2 am again.   It turns out that the reason why Khalid has been cranky, fevery, and screamy all night for the past four nights is because he has a throat infection.

    This is the fourth all-nighter that Khalid and I are pulling in the past four days.  And I think I neglected to mention that he got his hand caught in an elevator earlier this week.  An area of skin about the size of a quarter was scraped off from his right hand, and despite our attempts to keep it clean and well-bandaged, it turned gooey and yellow by the next day, and the fever immediately followed.  So that’s when we took him to the ER at 2 in the morning.

    Did I mention that we were in the ER earlier this week.  It was at 2 in the morning.  The doctor looked at his finger.  But apparently, not at Khalid’s throat.

    Today we saw the doctor again, because the finger was getting better but the fever was getting worse.  The doctor took a look at Khalid’s finger as well as Khalid’s throat, and prescribed antibiotics.

    Now, I’m pretty sure that even parents with neurotypical children have to battle their kids into taking the antibiotics, otherwise they wouldn’t be camouflaged with strawberry flavor and a pleasant fruity smell.  With our collective powers combined, Joy, HF, and I begged, cajoled, bribed, attempted to coerce, and then eventually forced the antibiotics into Khalid’s mouth for two of his three doses for the day.  You can guess how that went.  By the time we had all had enough, Khalid needed hosing down, the sofas needed wiping off, and HF’s beard had a pleasant fruity smell.   I sincerely hope that of the 10ml we put into Khalid’s mouth, at least 5 made it down.

    I hope, InshaAllah, that Khalid is feeling better by tomorrow.  My work productivity is zero, my email response time has shot up to one week , my brain feels like tofu, and I’m sure Khalid’s tired of waking up and screaming in the middle of the night.  Poor thing.  When he woke up two hours ago (midnight) HF and I had just gone to bed, and neither of us had fallen asleep yet.  HF and I calmed him down and lay in bed hoping he would fall back asleep.  HF eventually dozed off, but Khalid’s eyes remained open.  I tried to fall asleep, and Khalid did a commendable job of staying in bed for over an hour, but after that, he’d had enough.

    He got into my bed and took the pillow out from under my head.  Then, he threw it.  Then, he unwrapped the blanket from around me and threw that off as well.  Next, he took me by the hand and started to pull.  When that failed to get a response (I was pretending to be asleep) he took my head in both hands and began pulling.  And then he said…

    Wemonade.

    So here we are.  Khalid is drinking wemonade and watching Super Why.  There’s an hour and half before it’s time for me to wake up (heh) and make suhoor, so I’m attempting to fill it with productivity.  After I’m done typing this mishmash of an update, I’ll answer some work email, attempt to finish a presentation on customer pyramids (BLAH!), and maybe sneak some of the cold pizza in the refrigerator.  Don’t ask me about the cold breadsticks.  They didn’t make it past 2:15.

    It’s amazing how little we control our own lives.  I mean this in a good way.  No matter how much I intend, attempt, and fight for going to bed on time so I can wake up and stay up from Fajr, Allah has other plans for me. 🙂  This week, we’re on the night shift.  Maybe when Khalid feels better our schedule will return to normal, but for now I can’t be sore about being nocturnal, despite how much it exhausts me and hamstrings my productivity.  There are far worse things in the world.  Alhamdulillah. 🙂

    Cold pizza, anyone?

  • It finally happened…

    It was bound to happen at least once this Ramadan, though I was hoping it wouldn’t happen at all- HF and I did it this morning- we slept through suhoor and Fajr both.  Not only did we miss Fajr prayer, we also missed the pre-dawn food and water that we’ve been heavily relying on for these 15 hour fasts in 40+ C heat.  That’s 104 F for those of you who don’t think in Celcius.  Yesterday that car told me it was 48.  Then, I burned my fingers on the steering wheel.   I believe the car.

    SubhanAllah, what a blessing suhoor is.  For this Ramadan, HF and I have been starting our day with suhoor- not just waking up, eating, and praying, but getting dressed and going to work.  HF goes to his office, I open my laptop and clock in- I work from home- and then we stay up until the afternoon.  I take a nap at around 1 pm, HF naps when he gets back from the office at around 3.  Then we break our fast with dinner, pray, hang out a bit, pray again, and then go to bed.

    When HF suggested this schedule before Ramadan, I was reluctant to try it.  In fact, he’s been suggesting we wake up at Fajr, nap in the day, and  go to bed after Isha for quite a while, but I resisted because I believed that it wouldn’t be enough sleep for me and I would be exhausted.  In actuality, I’m loving the Fajr to Isha schedule.  Yes, it puts a bit of a dent in my social life, but I don’t have much of one anyone anyway, and I don’t want much of one in Ramadan.  I’m not big on social iftars.  The variety of foods tricks me into overeating through curiosity, and then we don’t get home until 11, which makes waking up again at 3:45 quite a challenge.  That’s exactly what happened yesterday.  We had a lovely time, but we ate too much, stayed up too late, and messed up our schedules for the next day.  Considering that Ramadan only comes once a year, I can’t say it was worth it.  Even if there was caramel custard.  :p

    So today, I’m hungry.  SubhanAllah, I’m not complaining. I’m reminding myself what a blessing food and drink are, and how kind of Allah it was to make suhoor part of the fast.  I’m also reminding us all that there are people in Pakistan right now who are fasting without suhoor and breaking their fasts without food.

    There are 35 minutes left until iftar, and the kitchen is exuding the fragrances of haleem and biryani- I do batch-cooking in Ramadan so that I don’t have to cook every day.  My stomach is turning itself in knots, and my mouth has that gluey feeling.  May Allah increase us all in patience, and help us gain control over our physical urges to put our spiritual selves first.  May Allah feed those who are hungry, give drink to those who are thirsty, and increase us all in gratitude for His favors.  Ameen. 🙂

    So, who wants some pizza in their pocket?  :p

  • A culmination of hope and fear- AutismUAE.com

    A culmination of hope and fear- AutismUAE.com

    I’m about to do one of the scariest things I have done in my entire life.  On purpose I mean.   I’m scraping together all my savings, which isn’t much and is quite slow to recover, and I am buying a business license.  I am opening a business to help provide affordable autism therapy and case management support for children in the GCC, and maybe even Pakistan if anyone from there asks.

    I feel nervous just writing this, because making it public means I can’t go back.  As if it isn’t public already, I had my first meeting today with an autism center here in Dubai to draft an agreement so we can work together.  They will provide case management services and I will provide live-in therapists for families whose children need ABA therapy, school shadowing, or full-time care.   I began laying the groundwork for this almost a year ago when I bought the domain- AutismUAE.com.  Since then I’ve only managed to occasionally populate it with autism news, because I’ve been afraid to carry it forward as well too busy with work to pursue the business plan seriously.  Basically, I had been waiting to have the time for AutismUAE.  Now, I understand that I have to make the time, and I will have to quit some of my design clients in order to focus on its development.

    I’ll be losing a source of income as well as digging a huge hole to pour money into.  I’m hoping that money will be the seed for something that grows into something great, but I’m a bit of a timid gardener.  I’m worried- not only because I will be financially bound to maintain the cost of my business license, but I will also be responsible for the health, welfare, safety and security of ABA therapists who could be dispatched anywhere, depending on where there is a family in need.   As an employer and a Muslim, I need to make sure their contracts are equitable, that their working conditions are safe, that they are treated with dignity and respect when so many ‘domestic employees’ in the world are treated like animals.  I have to make very, very sure that these therapists- who hold bachelors degrees in psychology and special education and occupational therapy are treated with the importance that they maintain in the child’s future.  I have lots of faith in God but little faith in mankind in general.  Even Joy, Khalid’s therapist, has spent over two months in the low-budget prison that is deportation because her previous employer was unhappy with her decision to move to another family (us) and dropped her off at the police station a day before her flight to Dubai with nothing but the clothes on her back.

    She basically disappeared- her phone was taken away, we had no idea where she was, even her clothes were stolen.  She lived in a crowded penal facility with almost a hundred other women who ate meager rations and divided themselves along racial lines, forming violent gangs in the desperate bid for self-preservation.  And this isn’t prison, it’s deportation.  Think Mad Max and anarchy, but with women crying themselves to sleep each night and living like ghosts because some official forgot their case and they have no way of contacting their families or reminding the world that they’re still in there.

    And that is exactly what I don’t want to happen to my therapists, my people.  I haven’t even hired them yet, but already I’m shaking at the thought of being asked by Allah what I did to protect them, whether I made sure they were going to families that were safe.  I am relieved, extremely relieved, that at the meeting with the other autism center the director agreed to the term that I felt was most important- that if the families should mistreat or neglect my therapists, that all services with the family, from both my organisation and hers, would be terminated, and the family would be blacklisted.  There are limited resources in the UAE- the other center is one of only two credible ABA therapy providers in the UAE, and if you want your child to have a future, then you better make sure you treat your therapist with respect and honor your contract.

    In an autism therapy center where the visas are with the company and the therapists live in their own homes, there is very little danger of abuse.  They go home when their hours are over and if they have problems, the company is legally bound to honor all exit clauses.  In the case of a private visa, the sponsor is unaccountable, and the employees are strangers in a strange land, with no shelter except in the house of their employer.  Which is why domestic workers the world over are so badly abused- there is no government authority to protect them, and they become prisoners in their employer’s homes without phone or internet access, and often without wages for months at a time.  Sometimes even without food.

    May Allah protect us all from such evil, such injustice from one human to another, and hear the prayers of the oppressed against their oppressors.

    Scary.  It’s so scary that I convince myself to abandon the entire business idea at least twice a week.  I tell myself that I don’t need this accountability, this terror of being responsible for people that I can’t see, this nagging fear that something will happen to someone that I was responsible for, and they’ll be hurt or abused, or thrown into deportation where people lose their mind.  But then Khalid climbs into my lap and gives me a kiss.  Or asks to hold my hand.  Or smiles proudly because he can add two plus three and he knows he got the answer right.  And the cause of this progress is Allah, the Most Merciful, but the catalyst for this progress is Joy.  She is there in the background, prompting, teaching, guiding Khalid through his program, working with him twelve hours a day with patience and epic perseverance- when Khalid is having a melt-down, it’s her he pinches and hits, because the principles of our behavioral intervention say I should walk away, and Joy should walk Khalid to the corner until he calms down.

    I thank Allah for Joy, and I wish every family who needed someone like her could afford to have her in their lives.  And when I have the ability to make that possible for children throughout the Gulf, it’s selfish of me to not to.  I want for other families what I have myself- I want for their children what I want for mine- a future.

    And I know what I don’t want- I don’t want children to be left behind because their parents don’t make more than twenty thousand dirhams a month, which is around 5,500 US dollars- and that’s how much families spend on average for a moderate ABA therapy regime.  That’s moderate.  Therapy starts at 50 dollars an hour, because it’s a highly specialized, one-on-one teaching model that requires repetition, repetition, repetition.  A good ABA program is 40 hours a week.

    Forty hours a week, a fifty dollars an hour.  You do the math.  You tell me whether only rich people have autistic children.  And then tell me whether only their kids deserve a chance to learn their own names.

    We switched autism centers recently, and it wasn’t actually by choice.  We were failing to meet a ten-hour a week minimum for ABA therapy, and were only going for an hour a week for Joy to check-in with a senior therapist for any questions she may have had.  We also saw the Case Manager- a behavioral psychologist- only on a quarterly basis- but because we had Joy at home giving Khalid ten hours a day, we were making phenomenal progress.   Khalid didn’t need any more center-based therapy because he was getting all the intensive therapy he needed at home.  And to be honest, we couldn’t afford to pay both Joy and the center’s ten hours.  And I told the director very flatly- that if it came to a choice between Joy or the center, I would pick Joy, because my obligation as a parent was to Khalid, and to getting the most treatment for him possible with the limited resources I have.  And I asked if they would keep us anyway.

    And they said no.

    And I asked what parents did if they couldn’t afford the ten hour minimum.

    And the director said “They never begin services with us.”

    I wrote her and the case manager an email asking her whether the center was there to support the children or the children were there to support the center.  She has yet to reply.  It’s been well over two months.

    So we left.  And we walked to the other center, right up the hall, and started with them instead.  And I don’t like to name names, but I do want to talk about Stepping Stones Center for Autistic Spectrum Disorders.  They have no hourly minimum, and if you tell them your budget, they’ll work very hard to make sure they can help you help your child in whatever way they can.  And that’s why I will be partnering with them to provide home therapists to families who don’t have access to center-based therapy, either because there isn’t a center in their country- like Oman, Kuwait, or Bahrain, or because their center is so prohibitively expensive that it may as well not be there- like Dubai.

    On a side note, insurance companies refuse to give a bent nickel for autism therapy.  If Khalid got hurt and sustained brain damage, they would have to pay for his hospitalization.  But he was born with brain damage, so we’re left on our own with no financial support whatsoever.

    So, my name is Abez and welcome to my soap box.  Give me a hand up, will you?

    -ahem-

    I believe that all children on the autism spectrum deserve a fighting chance at recovery, and neither financial status nor location should be a barrier to a child’s potential.  If there is a limit to what a child can learn, let it be set by God, who created his or her brain and knows what it is capable of.

    Please make dua for me, that Allah purify my intentions and make this endeavor a halal source of income, a good deed, and a sadqa jaariya for me.  I seek refuge in Allah from shaitaan, and from the paralysis of fear, and from the lure of profit and greed, and I ask Allah to let this business be a help for children and parents in need.  Allah, please protect my therapists, keep them safe and well-cared for, and let their experience in Muslim households be a beautiful introduction to Islam and the high standard of human ethics that You have set for Your slaves.

    Ameen, Ameen, Ameen.