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Category Archives: Autism

Are you my daughter-in-law?

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A young woman with Down’s Syndrome (who has been baking for a long ole time already) gets rejected from too many bakery jobs. So she opens her own bakery.

This video made me cry for so many reasons. I’m scared of what my son’s future will hold. I know that him being rejected over and over and over again is not a possibility, it’s a given because he has autism.

We’ve been taking the rejections for him and until now they’ve always been from schools. Who rejects a child from a KG or a Hifz program? Lots of people, apparently. It’s a given because he has autism.

A time will come when we can no longer protect him from rejection. Already he struggles with school and with friends. Soon he will struggle with employment and – this hurts my heart most – loneliness.

My son will want to get married. He’s barely 11, but he’s already told my husband and I as much. And why shouldn’t he? He’s kind, he adores babies, he’s super-intelligent, and would make an affectionate, doting husband and father. A time will come when he will work the courage up to ask some sweet young girl to spend her life with him- and he will be rejected because he has autism.

Not because he will be too mean, or too uneducated, or too poor, or too ugly, or too anything at all- even if he is financially supported and gainfully employed, and surrounded by a family and safety net that any young married couple would be grateful to have, no- he will be rejected because he has autism.

I would like to believe that somewhere out there, there is a little girl currently growing up into the woman who will be my son’s partner, protector, and friend. I want to believe that she’s the bubbly, confident, and to-hell-with-the-rest-of-yall type when it comes to what’s cool and what’s not. She can see the system well enough to buck it and marry a young man who has so much going for him even though the whole system may be against him.

Wherever you are sweetheart, may Allah introduce us soon.

News

I’ve got news and you get to decide which category you want to put it in.

See, if you live in Dubai, then you’ll consider that we’re moving to be bad news.  If you live in Dallas though, then you’ll think it’s pretty good news, because that’s where we’re headed InshaAllah.  It is official.  I am trading my yalla for a y’all, and that is news.

I am tentatively excited, reservedly optimistic, and trepidatiously wary of how green the grass on the other side of autism services will or won’t be. We’ve had an equal measure of people telling us that Texas is the worst place for autism services, or the best place for autism services, but it all boils down to this: Texas is a place where autism services in mainstream schools exists, and Dubai is not.

wild wadiSorry Dubai.  I really am.  Sorry for every date palm, every ladies-only beach, every niqab-friendly ice-cream bar, mall prayer room, and halal international chain restaurant I leave behind.  Goodbye five-star hotel buffet dates with husband, hello tuna sandwiches and veggie patties, and packing our own PB&J for the road.

Goodbye beautiful domed masajid on every corner, and the ability to travel without planning the entire day around where one can (and overwhelmingly can’t) do wudu in public and then pray in secret so people don’t freak out and call in the national guard.

Jumeirah_Grand_Mosque-Jumeirah_Mosque-3000000013365-500x375I’m not ‘Murica bashing, I promise.  But there is a certain effortlessness in practicing Islam in a country full of masjids, regardless of whether they stand within a block of a nightclub or not.  I can – and d0! – go everywhere in an abaya and I am appropriately dressed every single time.  At the beach, to a wedding, speaking in a conference or the board room- me and my abayas go everywhere without getting second glances or side-eye.  I will miss that.

Dubai is not perfect.  No place in the world is, but it is comfortable and safe, and for the last ten years it’s been our home.  I was married here.  My children were born here.  My parents and all but one sibling live here.  We have a happy slew of well-loved cousins who will be terribly missed.  I have a circle of friends who feed me, entertain my children and my neurosis while reminding me of Allah every time we meet over coffee, lunch, and more coffee.  It is a beautiful bond, and one not easily replaced.

I started my first company here and found my voice and my professional confidence in a culture where the way I dress has never been an issue.  I have stood side-by-side with women in pencil skirts, stilettos, and fascinators  and not felt any bit of self-consciousness or otherness.

The most fascinating thing about fascinators is that women choose to wear them.  Seriously.

The most fascinating thing about fascinators is that women choose to wear them. Seriously.

Where I once shied away from public scrutiny, I learned here how to stand in the limelight and own it, from the bottom of my sneakers to the top of my sheila.

I will miss Dubai, but I am going to Dallas willingly because somewhere in the great, wide world of IEPs and Special Education services, we’re looking for whatever it is that Khalid needs to grow as a functional, independent little man.  Dallas may not be our place in this world, but we’re going there so Khalid can, InshaAllah, find his.

So swap my basboosa for a brisket and call me Texan.  We’ve got 13 weeks left in the UAE and we’re packing, sorting, and selling off whatever doesn’t fit into our luggage allowance.

Yeehaw.

April is autism awareness month!

Alhamdulillah, very excited to be on the GreedforIlm podcast for World Autism Day talking social stigma in the Muslim community and spiritual coping for special needs parents. 🙂

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So I did actually update

It just wasn’t here. 🙂

Read it here

The Tale of Peter Rabbit

As part of our homeschooling exercises, I give Khalid written questions to answer about stories we’ve read.  This was his terse, and entirely pragmatic response to the epic tale of Peter Rabbit. 🙂

328010-Peter_Rabbit

Who is Peter Rabbit?

He was the rabbit who robbed Mr.McGregor’s garden.

 

What did his mother tell Peter Rabbit and his sisters to go do?

To pick berries.

 

What did Peter do instead?

He snuck into a garden.

 

Why was going to the garden a bad idea?

He had to go home.

 

How did Peter get home again?

He escaped.

 

What advice would you give Peter?

Don’t go there again.

Caution: Rant Ahead

The mechanism of autism is unknown, and that’s ok. Research takes time, especially when you’re talking about complex neurological disorders. We- the people who have to manage autism behaviorally before it can either be prevented or effectively treated- find meaning in our role in making the lives of children better before we can make their brains better, and that’s ok.

But there is something that is not ok, and I am angry. This morning I did yet another intake meeting for an autistic child whose parents had been put through the wringer. They went to an established clinic in a fancy building for a better understanding of why their child wasn’t speaking, and they left with a big, steaming heap of BS, including but not limited to:

• Heavy metal testing
• A full food-allergy screening
• Recommendations for genetic testing
• Recommendations for CT scans & MRIs
• A shopping list of supplements, including FRIGGIN LITHIUM
• A prescription anti-fungal
• A prescription anti-psychotic
• A recommendation for Hyperbaric Oxygen Therapy
• Stool and urine testing
• Recommendations for a Gluten Free, Casein Free diet

The psychiatrist’s recommendations for therapy were pretty much anything that she could get away with legally and possible charge for. Oh, and somewhere on the side- they should check a website for an ABA program.

And now- some information about the child whose parents were just wrung dry- He’s 3.5 now. He’s been on anti-psychotic drugs for the past six months. He’s verbal, social, can sequence numbers from one to one hundred, can read, write, and spell words from memory. You know, simple words like e-l-e-p-h-a-n-t and p-o-m-e-g-r-a-n-a-t-e?

He has no behaviors of self injury, does not tantrum, no obsessions, and very little stimming- which is easily redirected. If this child were to be assessed by someone who knew what they were talking about and didn’t pass out antipsychotics like candy- he would probably be diagnosed with PDD-NOS, maybe mild autism. But this nice lady- she diagnosed him with moderate autism, ADHD, food allergies, heavy metal toxicity, a fungal infection, and vitamin deficiencies. Wow.

Now, I’ve seen a lot of shoddy autism services in the three years I’ve been working and the five years since my son was diagnosed with autism. I’ve seen centers that copy-pasted names onto other children’s assessments and charged parents thousands of dirhams for 16 pages of ctrl-v.

(Child has severe speech deficit, as he cannot/does not use his, her, and other gender-appropriate language. Yusuf- age 10 months.)

Because I work for a center, I see more than just my own son’s assessment- unlike other parents, who will probably only ever see their own child’s. I have seen assessments from many, many centers- and I know which ones actually provide accurate information about a child’s development and which ones are giving you a binder of fluff. But junk assessments are practically nothing compared to what the lady above has done. Because she has done it over, and over, and over again.

She’s been doing it for at least as long as Khalid has had autism- because we visited her clinic when we were first searching for answers, and HF and I smelled a rat then and never came back. But then, HF and I are both educated, highly-literate people who can- and do- unleash the full power of Google on our important decisions. Many parents don’t know that they’re allowed an opinion, multiple treatments, and the tools to research the hell out of a something before touching it with a ten foot pole.

Every child she sees gets practically the same report. They certainly all get the same recommendations. I’ve never seen her administer a CARS, GARS, ABLLS, VB MAPP, or the Vineland Adaptive Behavior Index. She assigns children an average score without showing their scores for the subdomains- which is like writing the answer to an algebra question without showing your work. No matter how old you are, how many words you know, or how mild your autism is- you’re all hyperactive, moderately autistic, and possibly bipolar little snots, so have some happy pills. Ok, bye!

I met a child who had been under her “treatment” for four years before his parents finally figured it out- that she had wasted four years of his life- drugging a six year old until he was a ten year old- and “treating” him with an unstructured, undocumented “program” of flashcards, scribbling in a binder, and sending him home to come back next week, thanks.

Am I ranting. Yes, I suppose I am.

Have you ever wondered how much money Candy Crush makes? At the moment, it’s $956,114.

That’s nine hundred fifty six thousand, one hundred and fourteen dollars.

A day.

Not a year, not a month- a day.

So $956,114 –a day- is going back into one company. I have to ask- why can’t they make Candy Crush for Syria? Or Candy Crush for Autism? Or Candy Crush for Cancer Research?

I know that Syria, autism, and cancer aren’t Candy Crush’s fault, but can you imagine if the people who made shiny, interesting, and successful things actually did so to the benefit of humanity? And considering the state of humanity at the present- autism services included- can you imagine how much it hurts the world when people act for their own financial gain? I mean really- if your company made $956,114-a day- would you not feel even just a teeny bit morally obliged to do something other than make yourself richer- like I dunno… cure cancer? End world hunger maybe?

My least favorite psychiatrist and Candy Crush have something in common- and I don’t know what to call it yet, but it’s a combination of profiteering and gross negligence. It’s what happens when people think about themselves first. It’s what happens when you’re living for this world alone- and your perspective on “success” doesn’t look past your own mortal lifespan.

Rassa. Frassa.

-end rant-

Sometimes, I love autism :)

Last week or so- HF decided that we were going to stay up super late (or some of us, nap super late) and then go out and watch the Geminid meteor shower with the Dubai Astronomy Club.  I thought it was a lovely idea.  The grand reveal to the children went something like this:

HF: Guys, Baba has something really special planned for you- tonight, we’re going to go to bed on time, and at ten thirty we’re going to wake up, drive out to the desert, and we’re going to see some meteors!

Iman: Yay!

Khalid: -silence-his eyes suddenly widen in fear-

Me: Oh no Khalid! Not like that! Not like the dinosaurs!

Khalid: -slow, uncertain blink- So, it will miss the earth?

Me: Yes, the meteors will miss the earth.

He must not have been completely convinced, because later when we woke and loaded our drowsy but excited children into the car, Khalid just needed to reconfirm.

Khalid: It’ll miss the earth momma?”

Me: Yes dear, it’ll miss the earth.

SubhanAllah. 🙂

stupid-asteroid-bunker

The Mother of All Mommaisms

So I went into the bathroom yesterday.  I picked up a kids toothbrush and I squirted some pink, raspberry flavored, fluoride-free toothpaste on it.  Then, I opened my own mouth, popped it in, and got halfway through brushing and humming the toothbrush song before I realized I was on autopilot.

I laughed so hard my face hurt.

It’s been an awesome and funny week.  Awesome, and amazing, and exciting because the AutismUAE GoFundMe campaign has made the 10K we needed for license renewal, and people still keep tipping coins into the hat.  Funny because my children have been more amusing than usual.

Khalid declared that Musfira could play with his trains only after she learned how to speak English.

I taught the children how to play I-Spy in the car.

Khalid: I spy, with my little eye, something that is that orange car.

-blink blink-

Iman: I spy, with my little eye, something that is yellow!

Musfira: SUN!

(it’s 8 pm)

Iman in patronizing big sister voice: No Musifra, it’s not the sun. Can you see the sun? It’s not in the sky right now.

Khalid: Its light is reflecting off the moon. The sun is in the sky.

Iman: Wha?

Khalid: It’s day time in the Western pole.

Khalid is recently into directions, and so last week when we heard a neighbor’s dog barking, Iman said, “Oh, I hear a dog!” And Khalid said, “Yes, it’s north-west.”

 

And Musfira, upon opening her eyes after nap-time and seeing Aunt Owlie for the first time after her two weeks in the US said,

Aunty, your cat food is spicy.

It’s also been a bit of a rough week, with all three kids sick with something or the other- Musfira’s nose threw up. Khalid’s had a three-day stomach ache.  I took Iman and her ears to see an ENT and he very politely informed us that both of her ears were full of fluid and that they both had negative pressure.  I don’t know enough about ears to know what negative pressure is, but by golly, I will google it.

So Iman has to take “‘skusting medicine” for the next ten days to see if the fluid can be cleared up.  If not, then we X-ray to see what kind of mechanical problem there could be.  I’ve told Iman not to worry, because it’s a win-win.  If Iman takes all of her medicine for all ten days, she is going to get the BIGGEST ICE CREAM SUNDAE IN THE WORLD.

Three whole scoops to be precise.

Then, if she has taken all of her medicine but the fluid hasn’t cleared, then she and I will have a special sleepover in the hospital and she will get to pick out a much-coveted, often longed-for, overpriced mylar balloon from the hospital gift shop.  Either way, we both get ice-cream, and one of us gets a balloon. Alhamdulillah.

So now it’s time for bed, my day started at six am and involved a two hour meeting, two good friends, and both HF’s and my parents unexpectedly showing up for dinner at the same time, without prior planning.  Alhamdulillah, its finally time for bed. Alhamdulillah. 🙂

 

 

This is NOT complaining

This is an elaborate status update that you didn’t ask for.  But it’s not complaining.

PrettyI’ve been cat-sitting for my sister’s cats for a week or so now, and they follow me from room to room mewling expectantly.   Whenever I sit down to work they loll all over the keyboard, chew the wires, yowl at me, and play with my mouse.  This would be cute if I didn’t have children who already follow me from room to room mewling expectantly.

And they loll all over my keyboard.

And they play with my mouse.

I’m behind in work and there’s a mom who’s mad at me.  She has every right to be- she asked for an urgent invoice copy (granted, it was an urgent request) and I said I would try to get back to her asap.  But Khalid recovering from Sunday’s dental surgery has been a two-day teetering on the verge of meltdown and dental sabotage.  If he is not kept distracted, he either rages about the new hardware installed in his mouth, or goes somewhere private to try and pull it out.  Were he to succeed, it would be the third time he has removed supposedly “unremovable” dental work- crowns, spacers, bridges… you name it and he’s ripped it out.  With the exception of fillings, anything that we pay a dentist to put into Khalid’s mouth is in perpetual danger of being removed.

Khalid OROh right- I didn’t update: Khalid broke a tooth on Saturday night. On Sunday morning he had dental surgery under general anaesthesia to remove an abscessed molar, fix the broken canine with a root canal, fill four cavities, and then install a lingual arch to maintain the spacing and position of Khalid’s teeth.  Since so many teeth have been removed at one point or another, they’re starting to shift around, and unless we keep them in place, his permanent teeth will be affected.

Coming out of anaesthesia is hard enough for adults- I’ve done it many times and it’s always horrible- but for Khalid, it makes him fighting mad.  Literally.  He actually hit me, and it’s been years since he did.  He was raging, kicking, screaming, fighting mad for around an hour, and no one from the clinic staff could so much as look at him without setting him off again.  He and I laid in the recovery room together, me holding his hands to the iPhone I wanted him to focus on, and him crying and periodically fighting to reach into his mouth and start pulling on whatever he could find.

We spent the rest of the day just watching him and trying to keep Iman and Musfira from getting too close to Khalid.  He was angry and irritable for two days- and today is Wednesday and he went off to school happily Alhamdulillah.  He remembers his teeth when he’s eating, but it’s gotten easier to redirect him or distract him.  The trick is to NOT talk about teeth.  At all.  ever.

We used to joke that Khalid’s teeth were worth a used Corolla. MashaAllah, they are now worth a used Lexus. 😉  Our insurance does not cover dental work, and on top of that, Khalid gets his dental work done in an operating theatre under general anaesthesia.  So that means we never just pay for fillings or a cleaning or a crown- we pay for the anaesthesiologist, his nurse, the operating theater, and THEN we pay for the dental work.

(And then, Khalid tears it out.)

Khalid Post OpIn parallel, HF is out of the country.  He’ll be back by Sunday, and when he returns, I will greet him with our traditional family salutation upon return from travels:  Welcome home. I’m burning your passport.

I’ve been sick. It’s nothing too terrible- a small bug going around from the change of weather here in the UAE.  Musfira had it and threw up.  I got it and was nauseated but still functional.  I’ve been operating solo for the past week and running on fumes, a whole lot of forgetfulness, and the stubborn determination to keep things afloat just until HF gets home and not a moment longer than that.  Then, once I’ve burned his passport, I’m going to collapse into a blubbering heap of housewife and demand cuddles and catering until it all feels better.

Do I sound tired? I am.  I’m not complaining though- because even in this there is a reward for patience as well as the opportunity for growth.  I have this crazy stress response sometimes- when I’m overwhelmed with work, the kids are whining, and my phone is buzzing with unreturned calls- I get domestic.  The last time I got put on steroids to recover from bronchitis it gave me a serious case of the Irrational Angries.  I couldn’t talk to my children without snapping at them.  Their tiny, sweet hands felt like grabby little claws, and their innocent requests sounded like the shrieking of baby banshees.  So what did I do?

I sewed a princess hat.

Really.  Iman and Musfira and I went into my office, dusted off my sewing machine, and started sewing.  We made a pointy princess hat with a veil and a strap, and it was a pink satin masterpiece.  And no one got yelled at and no one died.  Alhamdulillah.

BouganvilleaYesterday, when the kid/cat/work combination had me wanting to run away and hide in my bathroom until HF got home, I went and got the hedge clippers, a bucket of water, and some sponges.  We went outside where the weather was lovely- and in the cool winter breeze with warm late-afternoon sun, I enjoyed the simple, uncomplicated snip snip snip of the clippers as I trimmed back yards of thorny pink blossoms from our front entrance.  The girls giggled and threw soapy water at each other and sometimes even at the car.  Khalid chased the cats around inside the house, and I recited Qur’an and gardened until I felt better.  And really, I did.  Alhamdulillah.

So here I am with a mountain of work pending, groceries need to be bought, and some very hugely important excel files need to be created- and here I am writing.  Because it makes me feel better.

photo 2 (1)Also, I’ve decided that if Sleeping Beauty’s castle had been surrounded by bougainvillaea instead of plain ole enchanted thorns, Prince Charming would have given up before making it past the drawbridge.  Bougainvillaea is vicious, and the only reason why it has such pretty flowers is to lull you into a state of flowery pink security before tearing your skin off.

And now the cats have woken up and discovered this blog, even as I am typing it.  See?

Sometime between now and Saturday I need to de-fur the house before HF returns- he’s allergic to cats- and hand them over into the care of another person.

But here’s why this is not complaining.  I sent the mom the invoice and I apologized.  I didn’t say “I’m so sorry, I’m sick and my son had emergency dental surgery and my sisters cats are bothering me because she’s in the US looking for a neurosurgeon because HER BRAIN IS GOING TO EXPLODE and my husband is out of town and I am chronically ill and we don’t have groceries right now” because you know what? It sounds so… prima donna.  I’m sure she has her own problems, and she has her own stresses- her own work and her own son with autism, so what difference does it make if I’m sick or my sister’s sick or my husband’s out of town?  It isn’t about oneupmanship.  It’s about taking responsibility.  So the invoice is late, and I’m sorry.

By Abez, the end. 

 

By the steeds, choo choo!

Autism has its pros and cons- and boy does it ever have its cons- but SubhanAllah, it really has its pros. Khalid doesn’t just like dinosaurs, he likes reading about them, and he doesn’t just read stories, he reads encyclopedias.  And he’s not just reading encyclopedias, he is memorizing them- word for word, page by page, and he’s on his fourth dinosaur encyclopedia now.

camarasaurus

Roar.

If you ask him about the Camarasaurus, he won’t just tell you it had four legs and went roar.  It was a four legged herbivore with a bony crest on its head, and it was between 15 and 23 meters long.  It had hollow vertebrae and was one of the larger sauropods.

And it went roar.

And here’s a picture.

And it was also known as the morosaurus.

So when Khalid starts getting interested in something, he doesn’t just dip his feet into the water, he dives in-head first, and forgets that there are any other things in the world that could ever be as interesting.  When he was into maps, he would wake up in the morning and read the Dubai Street Atlas.  He would carry it to and from school, and often kept mini-maps in his backpack.  To this day, he can still give me road directions off the top of his head, and will often point out when I’m taking a wrong exit. MashaAllah, he doesn’t need a GPS.  He is a GPS.

He is also a walking dinosaur encyclopedia, and now, InshaAllah, I hope he’ll become a walking Qur’an. Khalid immersed himself in the waters of Qur’an on the iPhone shortly after trains, and slightly before dinosaurs. He memorized a good half of Juz ‘Amma on his own and without us really knowing.  We didn’t realize how many surahs he knew until we heard him driving trains up and down the hallway and reciting to himself, “Wal ‘adiyati dhub-haa! Fal moori’yaati qad-haa, Fal mughiraati sub-haa!”

Even now he surprises us- the other day I was in the kitchen cooking and randomly reciting Qur’an, and when I paused to make a distinction between the black pepper and the coriander powder in my hands- he called out the next verse for me while passing up the hall.  It was in Surah An-Nabaa, which he already knew, MashaAllah, MashaAllah, MashaAllah.

And now, Alhamdulillah- with me sitting halfway across the world in Chicago and HF managing all three kids with the help of his parents, Khalid and Iman have started Qur’an class, and I am tremendously excited about what will be coming next.  Of course, Alhamdulillah, I’m excited for Iman too- she’s a bright little star and she can carry a tune and stay on pitch like nobody’s business.  But it’s Khalid- my little memorization machine, that I’m especially excited about.  I could actually, really, InshaAllah, possibly even maybe become the mother of a haafiz.   

It was narrated from Ali ibn Abu Talib (May Allah Be Pleased With Him) that the Prophet (Peace Be Upon Him) said : “If anyone recites the Qur’an, learns it by heart, declares what is lawful in it to be lawful and what is unlawful in it to be unlawful, Allah will bring him into Paradise and make him the intercessor for ten of his family all of whom have deserved Hell.” [Al-Tirmidhi 653]

I know we’re still a long way off from memorizing the entire Qur’an, but I’m excited. For Khalid, this could be an amazing use of his autism pros (laser-like focus, amazing memorization) and for me, this could be the next cool goal in my legacy project. Did I forget to capitalize that? My Legacy. There. If Khalid memorizes the Qur’an and keeps the halal halal and the haram haram, he can give his lil ole momma a leg up into Jannah, InshaAllah.

So duas would be nice, but don’t limit them to Khalid only. Include Iman in them too, because the only thing better than one righteous hafiz is two. 😉

Hifz Class

Sweetness.

At nine in the morning, Khalid came and asked if he could borrow my phone.

I told him yes, but he HAD to wake me up at 9:40, because I had a doctor’s appointment to get to. I have bronchitis so I’ve been stealing some extra snoozes in the morning.

Khalid agreed, took my phone, and then left.

What felt like five seconds later, he came back and said, “Momma, wake up! It’s 9:40 am!”

I opened my eyes groggily and said, “Khalid, I don’t think it’s 9:40 yet, can you please check again?”

Khalid studied the wall clock for a moment and said “Oh, sorry- it’s 9:21.”

“Come back in twenty minutes please, Khalid.”

“Okay!” he chirped, and then skipped out of my room.

Ten minutes later I was still awake and figured that staying in bed any longer was pointless, so I got up. I went into the living room to relieve Khalid of alarm clock duty and this is what I saw:

Khalid- stock still, sitting on the sofa, intently staring.

At the clock.

Watching the minute hand.

Waiting for 9:40.

“Khalid! Have you been staring at the clock since nine???’

Khalid turned and blinked a few times, thinking. Then he simply said, “Yes.”

I was so touched, and so shocked, and so humbled by the methodical devotion required to stare at a clock for thirty minutes that I smothered him in kisses. He seemed embarrassed but tolerated my affection briefly, then breaking free to leave and play with his dinosaurs.

SubhanAllah, it’s times like this that make me marvel at how amazing a little person he is, and how grateful I am to Allah for making him that way. Whether it’s because of autism or in spite of it, Allah has blessed us both. AllahuAkbar.

Some milestones are funnier than others

And Khalid hit a new one this week, all by himself.  He wrote, directed, and narrated his first independent documentary film.  And he did it on my phone without telling me, and it almost got deleted because I had no idea what it was.  But here it is.  Khalid’s first documentary ever.  Transcript available in youtube description.

A happy dance

Coming home, coming home! HF is coming home!

After roughly two weeks abroad for work, HF is coming home in three hours.  I told Khalid that Baba would be home by the next morning.  Khalid’s response was:

“Oh, I think I will jump all day at school!”

“Does that mean you’re excited?”

“Yeah!”

Me too kid, me too. 🙂

Today the barber, tomorrow- the moon!

This video offers advice for hairstylists to help give children with autism less traumatising haircuts.  I really wish it had been produced four years ago.  Getting Khalid’s hair cut used to be as terrible for the stylist as it was for him, and he’d cry so hard he would vomit and/or soil himself.  Khalid would end up with an obviously crooked haircut, the barber would end up a shaky, anxious mess, and HF and I would be almost equally plastered in snot, tears, vomit and hair.

So what changed? Alhamdulillah, the older Khalid grew the more we could use reasoning to help him, but we also had a few other really helpful strategies that this video didn’t include, and that’s why I am writing this.

So, here are some of the things that made a significant difference in getting Khalid’s hair cut with less stress for everyone.

We went to the barber more often, and it wasn’t for his haircuts.  When HF went for a beard trim, we started sending Khalid along with him, and we made sure there were reinforcers involved.  Chips, gummy bears, using Baba’s iPhone… we wanted Khalid to be in the barbershop without being in a state of terrible anxiety and fear.  Over time, he was able to enjoy being there, where previously he would freak out simply being in a salon, even if he wasn’t the one getting a haircut at all.

We brought a hairstylist home.  This was an amazing turning point for Khalid, even before we starting sending him to the barbershop.  A lady with scissors, a comb, and an hour and a half to spare came over, sat next to Khalid at the dining table and let him look at her tools.  Khalid combed my hair.  We played with plastic (TOY!) scissors and both Khalid and Iman “cut” my hair too.  Then, at the dining table and with no real rush, the hairdresser took a few little snips here and a few little snips there with lots of small breaks and Khalid’s favorite cartoons on the laptop.  That was the easiest haircut we ever had, and it gave Khalid his first experience with a non-aversive haircutting.

We used some good old fashioned ABA strategies!

We used a reinforcement schedule so that after every X-seconds of motion-free sitting (while his hair was cut) Khalid would get the next chip/tic-tact/reward.  We counted down (not up!) so that Khalid would know exactly when the snipping would stop.  We started from five, and gradually built up to counting down from ten   if he figited, the count was reset.  Once we got to zero, we’d stop, clean off the hair from his face and neck and arms, and he would have a break and a treat.  A few seconds later, we’d start another countdown.

As it became easier for Khalid, we started counting more slowly.  The next step was to start counting up instead of down- we’d start from one and see how far Khalid could go before asking us to stop. By the time we reached the counting-up point, Khalid was given the option of saying “Stop please,” when he had enough.

We used D.R.I.– differential reinforcement of an incompatible behaviour- we filled Khalid’s hands with the iPhone (which required two tiny hands to play) so that he could not use his hands to push the scissors or comb away.  I also held the iPhone at a level that was higher than he would have held it in his lap, that way he had to keep his chin up in order to play and not duck away from the scissors. If the stylist wanted his chin down, then I held the phone down in his lap so that he couldn’t lean back to push the scissors away from the back of his neck. If Khalid took his hands off the iPhone, I took the iPhone back.

We used D.R.O.– differential reinforcement of other behaviour, so that if Khalid was angry and irritated by the hair falling on to his skin and clothes, he could use the barber’s little brush to clean it up himself instead of yelling or slapping at his arms and clothes.  We also told him that instead of crying, he could ask for a break, and that we would then grant one to him.

Alhamdulillah, Khalid had a haircut just a month ago, and it was actually the first time the barber was able to use the electric trimmer instead of the time-consuming scissors.  Khalid was terrified of the trimmer when he was younger- I don’t know whether it was the noise or the vibration, but it put him into a state of panic and we avoided using it for years.  The last time though, when the barber asked if he could use a trimmer, I asked Khalid’s permission first.

“Khalid, the barber wants to know if he can use this on your hair.”

“What is it?”

“It’s a trimmer.  It’s like a tiny hair-cutting robot.  You like robots?”

“Yeah.”

“Want to turn it on?”

Khalid turned the trimmer on and giggled at the funny feeling in his hands.  Then it was the barber’s turn, and although he wasn’t as comfortable with it as he would have been with scissors, Khalid sat stoically through his tiny robot haircut and more than earned the icy-lolly that was waiting for him at the end of it.

Alhamdulillah, Khalid has made an amazing amount of progress in the past two years and it has been such a blessing.  Sometimes I feel like I can’t wait to see where the next two years takes us- today the barber, tomorrow- the moon. 🙂

How to melt momma with happiness

Khalid: Momma, what does the word “hang out” mean?

Me: To hang out? That means to spend time together talking and enjoying someone’s company.

Khalid: Okay, right. Can we hang out?

Me: I’d love to. 🙂

Alhamdulillah, Alhamdulillah, Alhamdulillah.

And I quote

Khalid: Momma, when I die…?

Me: (putting my drink down slowly) Yes Khalid?

Khalid: And my body goes into the earth…?

Me: Yes?

Khalid: Will people remove my fossils and put them in a museum?

Me: No dear, they won’t.

Khalid: Why not?

Me: Because you’re not a dinosaur dear.

_____

Iman: (is looking through rows of flavored vitamins as we’re waiting in line at a pharmacy) Momma, why does this have a picture of icecream?

Me: Hmm? Because those vitamins supposedly taste like icecream.

Iman: Why?

Me: So that kids will like taking them.

Iman: This one has cherries.

Me: It’s probably cherry flavored.

Iman: This one has fairies on it. Is it fairy-flavored?

Me: I don’t think so, I’m not sure what fairies would taste like.

Iman: I know. Meat.

Me: Meat?

Iman: Yeah, because that’s what bodies are made out of. Meat.

Me: You’re a very sensible girl.

Iman: I know.

Enunciation, The Sequel

Khalid and I are in his doctor’s office for a visit, and we make a bathroom stop.  I carefully hand Khalid my purse and a folder of papers. I’m a little nervous, but I want Khalid to get this right.

Me: Khalid, I am going to use the bathroom.  I would like you to please hold my things.  Please watch them carefully.  Don’t let anyone take them.

Khalid: Watch them?

Me: Yes.

He smiles mischievously.

Khalid: Not wash?

Me: No, not wash! Don’t wash anything you silly boy!

Khalid: Momma, remember in RAK, I washed your things?

Me: I remember. I asked you to watch them, but you washed them.  That was a misunderstanding.

Khalid: Misunderstanding?

Me: That’s when someone says one thing, but you understand it to mean something else.

Khalid: (grinning) And then you wash their things?

Me: Yes.  Apparently you do.

Cheeky monkey.

Next time I’ll enunciate?

Khalid, Iman and I stop in to use the restroom before I swing by a legal office to pick up some papers for work. I am holding a large, black leather document binder with fancy official paperwork inside.

Me: Khalid, I would like to use the bathroom, would you watch this for me please?

Khalid: (Looking uncharacteristically blank) What?

Me: Watch this for me please? Here, take it.

Khalid: (Cheerfully) Ok!

I use the bathroom and return to Khalid.  He hands me my folder- dripping wet.

Me: Khalid, what happened?

Khalid: I washed it for you!

Me: You washed it?

Khalid: Yes.  With soap and water.

Me: *blink blink*

Khalid: *proud smile*

Me: Good job sweetheart.  Thank you.

 

Gorgeously *Normal*

Me: Khalid, can you give Musfira one of your chips please?

-Khalid looks into bag-

Khalid: I’m sorry, I don’t have any more.

Me: (Sappy happy grin)

****

Khalid: Did you know, the trains in Train Conductor 2 run in New York!

Me: New York?

Khalid: Yeah, not old York, New York.  That’s funny!

Me: -swoon-

***

Me: Khalid, did you take a shower?

Khalid: Yes

Me: When? You already showered today?

Khalid: No.

Me: You need to go shower Khalid.

Khalid: -whining and getting off of computer- But I took a shower last week!

I put on a ‘stern’ face and lead Khalid to the shower, laughing with joy on the inside.  SubhanAllahi Wabihamdihi- Khalid is still far from neurotypical, but he’s so far from where he’s come that sometimes I can’t believe there’s anything wrong with him.  There’s nothing wrong with him, really.  It’s everyone else who has the problem adjusting to his innocent oddness.  I adore him, I really do.  Alhamdulillah.

 

Homeschooling: We are now.

I’m worried about Khalid.  He hasn’t been feeling well these past few days, and his tolerance for things has been reduced to almost zero. Can’t find train? Sob. Don’t like color of cereal? Sob. Don’t want to greet guest? Sob. Thomas the Tank engine dubbed in Arabic? MELTDOWN.

When we ask him questions, he doesn’t respond- he seems zoned out and lost somewhere out in outer space.  There are times when his eyes seem almost empty.  I don’t mean to be melodramatic- there are plenty of times when Khalid is mentally present and accounted for, it’s just that we’ve been so blessed to have Khalid doing so well for so long that it’s been a while since I’ve been genuinely worried about his development.  

But I am now- and I am coming to realize that although Khalid’s funny soliloquies about trains delight me, they are almost unintelligible to anyone who doesn’t speak Khalidese. So, he really needs to start Speech Therapy.  And I love watching him run, but his running is more of a flapping bounce with a vague windmilling action of the left arm.  His fine motor skills are lacking too- he hates writing or even holding a pen- his handwriting is worse than Iman’s, and she’s four.  So yes- I am worried about Khalid more so than usual, and trust me- mothers worry a LOT.

The really great thing about worry though is that you make such awesome dua after salah.  There’s nothing like fear and desperation to give you sincerity in your prayer.  Try it- next time you’re about to make dua, think about something that you are afraid of.  Think of something that gnaws away at your mental peace- of a situation whose realization is a worst-case scenario in your mind- and then pray. You’d be surprised at how much more so your prayer is actually a prayer as compared to a verbatim rehearsal of Hisnul Muslim.

School will be starting soon.  Rather- school will NOT be starting soon.  Khalid and Iman will, InshaAllah, be homeschooled this year.  HF and I came to this decision after lots and research, soul-searching, and being rejected from other schools. :p  

For the second year in a row, Khalid has been guaranteed placement in the less-than-mediocre private school that he has been biding his time in but denied admission into every other school we’ve applied to.  As usual, he scored perfectly on the assessments, impressed the teachers and unintentionally charmed the heads of primary, but was then rejected after weeks of meetings by administration staff who have never met him.  So for the second year in a row, we’re being told- “So sorry, better luck next year?”

We could take Khalid back to the school he just finished 1st grade in, but the education quality was awful, the kids were without teachers for weeks at a time due to staff quitting, the Arabic program was ATROCIOUS and there was severely limited opportunities for social engagement.  Our top priority for Khalid in school was actually socializing, but due to the old world educational philosophy of good old education through intimidation, there was very little of that happening for any of the students.  BE QUIET! NO TALKING! GET IN LINE! EYES IN FRONT! HANDS TO YOURSELF!

I may be expecting too much, but I was blessed to have had the opportunity to be in a school program where we were given problems and then sent to work on them in teams independently.  Once we had worked out a solution, we presented it to the class.  We didn’t just solve, we thought.  We learned how to research, to think critically, and to develop social skills through meaningful interaction.  None of these things are happening in the current school.  Not a single one.  The desks face forward.  The kids stay silent out of fear of being yelled at.  The teacher writes something down.  You copy it. Then you go home. Lather, rinse, repeat.

Because Khalid is academically advanced, mainstream school is a waste of time unless he’s being socially and verbally challenged.  And since he’s not, he’ll be doing his academics at his own pace at home, and then we’re adding soccer and other extra-curriculars to give him some quality socialization afterwards.  Iman will be getting the same- she’s a bright sparkly pink star (Alhamdulillah) who has wasted a year in KG learning her alphabets when she can already sight read.

I am, to be perfectly frank- petrified.  Homeschooling? With work? And aaaaaaargh I don’t even want to start on work- there’s not a post window big enough to contain all of my anxiety about work.  I have twelve staff, over 25 kids, and no accountant, no admin- only me to handle everything related to administration, operations, finance- it makes my head spin.  

And on top of this, I’m homeschooling?

Yes, I’ll be hiring a teacher to go over the academic material with the kids, but I’m going to be taxiing the kids to and from their extracurriculars as well as overseeing everything, and I’m nervous.

But you know what? AllahuAkbar.  Allah is the Greatest, and if we bent over backwards trying to get the kids into a school but found we were left with no choice but homeschooling, then there is good in it, InshaAllah.  Allah is the best of planners, and perhaps- like having a child with autism- homeschooling Khalid and Iman will be an enriching and life-changing experience that takes my patience, time-management, and parenting skills to the next level. InshaAllah.

Please remember us in your duas, that we’ve made the decision that is best for Khalid and Iman’s education and development as little humans and little Muslims, and that Allah blesses me with the time, patience, and ability to manage home, work, and homeschool without compromising the quality of any of the above.

Ameen, Ameen, Ameen.

One of the upsides to autism

KhalidLast week over breakfast, Khalid sneezed and then said: “Alhamdulillah.  Momma, now you say- Yarhamakullah, and then I say yahdeekumAllahu wa yuslihu balakum.”

You can stare blankly for a moment.  That’s what I did, and then I realized- he’s been reading through every page of the Dua Kids application on my iPhone, and as usual- he’s not just reading it- he’s memorizing it.  It’s not a fast process by any means, Khalid is like a slow, logical locomotive.  Or rather- an intellectual iceberg- most of Khalid goes on way below the surface, and we only occasionally get an idea of how deep he goes.

A few days ago, from the dining table over dinner- he gave me precise road directions to reach Ski Dubai from Abu Dhabi.  Then he ate a french fry.  He asks me the names of the roads we’re driving on, and when I’m wrong he corrects me.  He tells me the interchanges we’ll be driving past before we’ve passed them.  Of course, he still can’t answer simple questions like- Khalid, why aren’t you wearing pants yet?- but he is storing massive amounts of interesting information in his beautiful little head and it comes out in the most hilariously brilliant ways.

And that hilarious brilliance is why I am blogging right now- because I end up forgetting too many of Khalid’s pearls of wisdom, and ten minutes ago, he said one that I want to remember forever.

For a job well done, Khalid and Iman were both awarded two mini marshmallows. Iman, in typical teasing fashion, said: Khalid, I can squash your marshmallows!

Khalid, without even looking up from his trains said, and I quote:

“The Messenger of Allah, salAllahu Alaiha wa sallim said ‘Do not squash marshmallows.”

-end quote-

AllahuAkbar

 

 

Alhamdulillah for ABA

One of the reasons why I am so grateful for Khalid’s autism is ABA- Applied Behavior Analysis.  In the context of teaching a child with autism, ABA can be broken down in to two core concepts:

1)      The teaching of tasks from simple to complex

2)      The reinforcement of correct behavior and extinction of incorrect (or maladaptive) behavior

This seems simple enough, but let’s talk about what happened yesterday at Jummah.

A three year old boy was entertaining himself during the Jummah khutba by loudly and aggressively kicking a box of drinking water. The noise (as well as the imminent danger of being hit by a fast-moving box of water bottles) was tremendously distracting to the ladies in masjid.   Because no one was asking the boy to stop, I am going to assume that either his mother was too embarrassed or frustrated to do anything about it, or that he was an orphan who drove himself to the masjid expressly to kick the box around.

I didn’t get to see whether anyone asked him to stop, because Khalid- being overwhelmed by khateeb’s voice over the loudspeaker- actually ran out of the masjid in a panic- barefoot onto the hot tiles, and I had to run after him with Musfira tucked under my arm like a football.  I got him to come back and come into the masjid as far as the foyer, since it was only 114 degrees outside, and we waited there together for the prayer to be over.  I held Musfira, Khalid held his ears closed.

The khutba ended, the jamaat was prayed, and as soon as the salah was finished- the door burst open and that same little boy emerged whining and yelling as his mother dragged him angrily through the doors.

She turned to him, as soon as the door was closed and slapped him across the face- five times, very hard. “Why do you make so much noise! What’s wrong with you!”

Khalid was horrified, he grabbed my arm and said “Momma, why is she hitting him? That’s bad! It’s not good to hit!”

And the little boy bawled and the mother continued to scold him as she searched for him shoes and tried to cram his feet into them.  The little boy’s wailing was echoing off the marble walls in the close, high-ceiling foyer and Khalid was becoming distressed.  The mother was obviously embarrassed and wanted the noise to stop, so she suddenly hugged and kissed the boy and said “There there- good boy- don’t cry- shhh shh…”

And what did the boy do?  He smacked her face.  Several times, and he was swatting at her with both hands, so she hugged him more- and other ladies came into the foyer and tried to soothe him- it’s ok, good boy- don’t cry- there there-

Khalid and I were less than three feet away from the situation the entire time, and I think he and I shared the same sort of confusion.  Wait- I thought he was in trouble for making noise? So she smacked him, but then she said he was a good boy, so he smacked her? But he’s still a good boy? But actually- he’s making even more noise now…

I feel very sorry for that mother- she was embarrassed, frustrated, guilty, and I’m pretty sure she was doing the best she knew how to.  I wished I could have sat down with her and shared what little I’ve picked up about ABA, because from a behavioral point of view, her intervention was a disaster.

First, the boy’s bad behavior is ignored, and since the mother said nothing, kicking the box must’ve been perfectly acceptable masjid behavior, right? All of a sudden, the boy is jerked out of the mosque and given quite a smacking.  So he’s in trouble, but does he know why? Then, his mother apologizes for disciplining him, and in return, he smacks her.  So she hugs him more, and other ladies tell him he’s a good boy for crying loudly and smacking his mother’s face.

How is this connected to the two main principles of ABA?  Point two: The reinforcement of correct behavior and extinction of incorrect (or maladaptive) behavior. Reinforcement is a reward- it’s a thumbs up or a nod or a gold star- it is a response that contributes to an increase of behavior.  It’s not always positive- if a child is bugging you for attention, and you turn and yell at them- then you attended to them in response to being bugged.  You reinforced their behavior.

If a child is screaming for a cookie, and you give them a cookie, then the cookie is reinforcing the cookie.  If a child screams and slaps you, and you give them a hug, then you are reinforcing being slapped and screamed at.

There are, in a nutshell, really only four reasons why people do things.  Seriously- I love this about ABA- only four major ones anyway- and they work for kids, adults, and children with autism as well.  They are:

Escape: I don’t wanna ______________, so I’m gonna _________________. 

Kid: I don’t want to do my homework, so I’m going to cry.

Adult: I don’t want to go to pay taxes, so I’m going to cheat on my forms.

Child with autism: I don’t want to do my flashcards, so I’m going to bang my head on the table.

Access to tangible: I want ________________, so I’m going to _______________ until I get it.

Kid: I want a new toy, so I’m going to whine until I get it.

Adult: I want a new car, so I’m going to steal one off the lot.

Child with autism: I want to go to the park, so I’m going to kick the door until you let me out.

Attention: You’re not looking at me, so I’m going to _______________________ until you do.

Kid: You’re not listening to me, so I’m going to talk incessantly until you do.

Adult: You’re not noticing me, so I’m going to dye my hair green, pierce both nostrils and wear a feather boa to work.

Child with autism: You’re not laughing with me, so if you laugh with someone else, I will cry until you stop laughing and come cheer me up instead.

(True story- Khalid used to sob and bang his head on the floor if we laughed.  So we stopped laughing and would soothe him until his Case Manager told us it was likely to be attention seeking behavior, and instead of not laughing, we should laugh harder.  It worked, Alhamdulillah.)

Automatic: I don’t care what’s going on, I just gotta ____________________.

Kid: It doesn’t matter whether or not anyone can see me, I just gotta pick my nose!

Adult: I don’t care whether you mind, my butt itches.

Child with autism: I don’t care whether or not anyone is watching, I just need to spin in circles.

The appropriate way to respond to behavior is based entirely on its function- or purpose.  Attention seeking behavior is ignored or stopped with as minimal reinforcement possible, and then the child is taught to seek attention in more appropriate ways, and you make sure that child receives all the attention for good behavior and none of the attention for inappropriate attention-seeking behavior.

Escape-motivated behavior is ignored or blocked, and the child is made to follow through with the task that they were initially trying to escape from, and then rewarded for completion and moved on to a more reinforcing task.  You can shorten the demand, but never give up on the demand.

Inappropriate access-oriented behavior is met with blocking access to the desired item, redirecting to calm the child if necessary, modeling of appropriate manding technique (if you want a cookie, say “May I have a cookie please?) and then reinforcement of appropriate manding.  (Good asking, here’s your cookie!)

Automatic behaviors are more complicated to address, and how you respond depends on whether or not the behavior is harmful, destructive, or disruptive- whether it fulfills a vital sensory need, or whether it may be a response to pain or some other internal stimulus.  It also depends on the frequency and intensity, and whether it can be reshaped, replaced, or even successfully eliminated.  This depends on the individual behavior as well as the individual child.

But yeah.  That’s ABA 101- and sometimes I wish all parents were taught ABA, because knowing it has made me a far, far better parent to Khalid (as well as Iman and Musfira) as well as a less frustrated person in general.  I would also like to think that it makes my childrens’ lives easier as well, because the lines are clearly drawn.  If it’s bad, you will know it’s bad- if it’s good, you’ll gets hugs and cookies and hearts and rainbows.  The rest of the world may be confusing and ambiguous and complicated, but Momma is simple.  She doesn’t ignore you for being bad, give you a slap ambush, apologize for punishing you, and then kiss you for smacking her back.

So yeah, I’m not a parenting genius, but I am grateful to Allah that people have sat down and put their big heads together to make a flowchart that any person can understand, and I am grateful to Allah for making me have to understand it.

Please make dua for all parents and all frustrated mothers everywhere.  May that lady’s son grow to be a righteous, well-mannered, loving man who is a comfort to his parents, and coolness to their eyes and a sadqa jaariya for them after their deaths.  Ameen.

Khalid’s first photo blog

Khalid:Momma, I want to take a picture of my things, this is my vitamins and this is my hat. Did you know tadpoles turn in to frogs?

20120522-095242.jpg

A parenthetical sigh

I don’t know if I’m cut out for this whole autism advocacy thing.  For all the bright, informative, grinning I do, I still go home and feel absolutely hopeless about autism and what it’s doing to an entire generation of children, their families, their siblings.  This isn’t an issue of faith to me- but of empathy.  Maybe sometimes it’s better to leave autism to the professionals, who can be bright and informative about a debilitating neurological disorder and then go home and put on their dancing shoes.  They don’t ‘bring their work home,’ so to speak.  Me, I live in it. I love my son, and I have reached a point where I can happily accept Allah’s decree for him.  I just can’t shut myself off from other parents, other children, and from actively taking my work home in the form of worry, pain, and sadness for other people’s children.

I’m conducting another workshop this weekend, and putting together my notes is hard for reasons entirely emotional.  So now I’m done.  I’m closing the computer down even if my notes aren’t ready, because I am feeling so down and so sad from all the ‘informative’ reading I’ve just done that I’m just going to pray and crawl in to bed.

The End.

 

Water and Oil. Autism and Iron.

So it’s been a little over two month’s since I’ve updated, which may be the longest I’ve ever gone in the history of this blog.  Ever.  I have an excuse. Well, I have a whole bunch of excuses, so let’s throw some at the wall and see if any of them stick.

The dog ate my blog?

-SPLAT-

Yep, that one looks credible.  Next!

I was scaling a mountain of work when I fell into the crevasse of mommy-related responsibilities and my backpack of bloggingness fell into the bottomless abyss of nonpriority?

Ooh, that was dramatic.  Next!

I haven’t had a housekeeper/nanny for the last month.

Hmmm, that one doesn’t actually sound very credible.  The thing is though- and I know that it’s hard to believe- this is the closest thing I have to a real reason.  It sounds like such a Diva-esque complaint- a great majority of womankind copes without housekeepers- but I have three kids- one with autism, one with a Napoleon complex, and one with only three teeth and cruising- related deathwish.  I have ten employees, a CSR proposal underway, page 31 in Iman’s math book to work her through, and an intake for new parents this Saturday.  But that sounds like whining, so let’s go back to my other excuse.

You should have seen the size of its teeth.  I was running, but then it caught up with me, and I was all like- “Oh no dog, don’t eat my blog!” but the dog was all like “Woof woof. Om nom nom.” And then HF jumped in with his cape and tie blowing dramatically in a gust of hero-related breeze, but then he remembered that he’s weirded out by dogs, so he leapt off-camera and cleaned the house and put the kids to sleep instead.  And that’s been amazing and surprising and lovely and the catalyst for falling in love with him all over again, but it hasn’t been enough to save the blog.

Sorry blog.

But enough with excuses.  I could go on making… err… recounting completely true and valid excuses until the cows came home, but then I would have to stop typing to go milk them because cows don’t milk themselves any more than Musfira changes her own diapers.

The funny thing about being stretched thin is that you become easier to tear- more fragile than usual.  I’m cheerful and productive and maybe only half-frazzled to the point of insanity (see, only half!) but this video made me cry.  And then this video made me laugh out loud with with joy. Wait until they show planets crashing in to each other- that was perfect, amazing- and just mind blowing.  SubhanAllah!

I think these two videos kind of form the bookends of my life right now: Islam and autism.  Being mom fits somewhere in the middle and is an extension of both sides.  You know, like a sort of… spectrum? *rimshot*  I feel rubbed raw on both ends- my own son is doing well by the Grace and Kindness and Greatness of God, but then every new parent I meet renews a sense of desperation, urgency, panic, and fear for the future of a child and I don’t think I ever get very far from the despair of a new diagnosis.  On the other side, I am so, so, so, so, overwhelmingly grateful to be Muslim, to have the small amount of faith I can hold in my heart, and to be able to put the burden of autism and fear down on the floor and whisper Subhana Rabbi Al-Aa’la- Glory to my Lord, Most High.  Allah created autism, He created despair so we could have hope, and darkness so that light could be apparent.  If there is imbalance in this life, it is only allowed to exist for us to learn, and then it will be re-balanced as soon as we die.  I’d happily live without a thumb if I knew I would get both of them back plus a cosmos of eternal gold stars for it in paradise.

I haven’t been feeling very well lately, and being sick while being stressed, over-worked, and overwhelmed has been an additional challenge, but as strange as this is- I’m liking it.  I’m loving it.  I think I may be losing my mind, but there is a sweetness and a closeness in prayer that I have never been able to find or taste except when I am on the verge of a nervous breakdown.  Like how water tastes like life itself- only when you’re dying.

Take a mayonnaise jar. Add oil.  Add water.  Add autism, Islam, Iron, motherhood, diapers, school lunches, and human responsibilities and shake the living daylights out of it. You’ll get a jar of disoriented salad dressing- that label will say:  Abez.

Tadaa!

That’s my update and I’m sticking to it.

By Abez, The End.

 

 

 

And I quote…

(I’m in my room making dua after maghrib prayers, and Khalid discovers me)

Khalid: Momma, are you hiding?

Me: No, I’m just making dua.

(He smiles at me)

Me: Hey Khalid, I love you.

Khalid: I know.

(I kiss Khalid’s head)

Khalid: Oh, you’re being good!

Me: Thank you.

Om-Nom!

Well, Khalid is back at his old school and Iman is happy to be going along with him. I’ve yet to visit the old school and formalize their removal, but I’ll definitely be doing so- especially since we paid half the fees in advance!

Khalid was immediately happier back in familiar settings- the first day on the playground was a mini-reunion. His KG-1 friends who were now spread through various KG-2’s found him and welcomed him back, even telling their parents about his return. Khalid is a bit of a celebrity in the school, not because he’s famous in any respect, but because he will greet every person he sees warmly. The janitors, the school nurse, the lunch room guy- they all love him and I feel like I’m walking in Khalid’s shadow when I pass through the halls with him. Everyone knows Khalid, almost no one knows me to be his mother. 🙂 Alhamdulillah, Alhamdulillah, Alhamdulillah. Of course, it’s a completely different issue that Khalid’s class hasn’t had an English teacher for the entire week, but for the moment, Khalid is happy.  And, as is to be expected- SubhanAllah- his spontaneous verbal skills are taking off again.  He was becoming less talkative over the summer with no one but the immediate family around, but now that he’s back in school there’s an immediate difference.  Take, for example, this overhead conversation.

Khalid: Musfira, look! It’s the cut the rope.  I will show you.

Musfira: Pbbbbt?

Khalid: You feed the frog the candy.  It’s Om-Nom. Collect the stars.

Musfira: Eeeee!

Khalid: I’ll show you.  Oops, two stars. You need three stars.  Not four stars.  Like this.

Compare this to conversations that I have with Khalid where he gives me one-word replies for the most part.  Khalid isn’t interested in talking to adults, but he’ll give a 4-month baby an iPhone game tutorial.

Speaking of 4-month old babies, Alhamdulillah, Musfira rolled over about two days ago.  Soon she’ll be crawling.  Shortly thereafter, driving.  Where does the time go? And where did she learn to generate such ear-piercing shrieks of joy? It was my hope that her personality as a child would be an extension of her personality as a baby.  Iman is an intense little girl, and she was an intense baby as well.  Musfira has, so far, been a happy and social baby, and I was hoping that would continue indefinitely.  She’s turning up the volume though lately, and twisting mini-teddy into half-nelsons while chomping his mini-teddy head, and squealing so loud, so long, and so non-stop that a staff meeting had to be put on hold yesterday- three therapists, one senior, one driver, and HF and I- because no one could hear each other over Musfira’s personal opera.

SubhanAllah.

Fifth Time’s the Charm?

School number four says they cannot offer Khalid the learning support he needs.

I say I already provide the support he needs, he comes with not just a shadow, but an ABA therapist.

They say their decision is final.

I wonder how they decided they couldn’t provide Khalid with the support he needs without ever having evaluated him to see what he needs in the first place!

Sheesh, at least give the kid a chance!

Ouch

Dear Ms. Khalid’s Mom,

Unfortunately we are not able to accommodate Khalid this year, academically he fits in for Foundation Stage 2 but will require learning support assistance due to behavior and concentration age related expectations.  According to the age related assessment Khalid understood the questions that were asked by the teacher however did not answer and was constantly distracted by other things.

For your information admissions will re-open next year February, wishing Khaled all the best.

I have to wonder how the teacher can maintain that Khalid understood the teacher’s questions if he was not answering them? And whether all children distracted by a colorful and visually engaging rooms are denied admission.

On to school number four.

(Too cool for school)

The hunt continues to find Khalid a suitable English-speaking school that is autism-friendly, uses sound behavior reinforcement principles (rather than education through intimidation) and doesn’t cost an arm, a leg, two kidneys and your left earlobe.  I’ve been to three schools just today, dragging Khalid and Joy along for the ride and leaving a trail of bemused registrars in our wake.

“Does he know his colors?’

“Yes.”

“Can he recognize letters?”

“Khalid, what does this bag say?”

“Best Salted Cashews.”

People are generally confused by Khalid.  When we go into visually exciting new places, like schools, his attention is all over the place taking in the new surroundings, and the outsider’s first assumption is that the lights are on but no one’s home.  He has to read every written word on every wall and visually digest every shape lovingly cut and unsteadily decorated in glitter glue.   The various registrars and social workers who try to probe him ask him questions without first getting his attention, and as the seconds tick by in silence, I can see exasperation come over their faces as they assume I am exaggerating Khalid’s cognitive abilities just to get him into school.

“So Khalid, how are you?”

-tick-

-tock-

-tick-

“Big, big giant school.”

(The social worker looks amused)

“Stairs going up.”

(The school has an impressive staircase leading from the reception to the second floor.)

“Do you have any friends?”

(I want to kick her for asking this)

-tick-

-tock-

-tick-

“Boys.”

(Now she looks confused.)

I earnestly explain that he’s telling her about his friends- that they’re boys.

“And girls.” Khalid adds after another second.  “And kids.”

“Khalid,” I say nervously, “Can you tell me about your friend Omar?”

“He’s not here.”

“Omar transferred from the school,” I explain again.  “None of the children in his current school speak English, so he hasn’t made any new friends yet.”

“Khalid,” the social worker continues, “What shape is this?”

Khalid looks down at the iPad that she’s pointing to. He’s been using it to play Cut the Rope, and also, to search for walk-throughs on YouTube when he’s stuck on a certain level.

-tick-

-tock-

-tick-

“Rectangle.”

“Very good!” the social worker says, genuinely surprised. “And this?”

Khalid looks to the coffee table.

“It’s a circle.  Like the sun.” He uses his finger to squiggle, in the air, what he means to be the rays of the sun. The he goes back to his own world, reading the walls.  Do not enter.  Push.  Pull.  In case of fire.  I remember- once we were driving back home from Ajman, and the sun was setting in an electric orange ball to the west of Emirates Road.

“Look Khalid, Iman- the sun is going down! SubhanAllah, it’s so big and round!”

Iman says: “Ooooh!”  Khalid says: “Sun is a planet?”

-blinkblink-

Owlie and I took the kids to the children’s museum once, where watched a half an hour presentation on the solar system- once.   This was before Musfira was born, and she’s almost four months old now.

“Actually, the sun is a star.”

“Not a planet?”

“No, because planets don’t give off light. The sun is a star, I think.”

Khalid disagrees.

“Not a star, planet.”

In Khalid’s big-city world view, stars are shapes with five points that exist primarily to be colored yellow.  Dubai has way too much light pollution to see anything other than the moon and the air traffic.  I can see his point of view.  So I offer a compromise.

“Ok Khalid, maybe it’s a little bit like both.”

The social worker says she’ll get back to us.

We pack up and drive off to the next school.  The principal, who I met last Thursday to appeal for Khalid’s admission, is out sick.

“I’ll leave a message please,” I say to the front-desk secretary.  As I’m scribbling what I hope is a friendly, optimistic, and not too desperate-sounding request for a call back, Khalid is taking in the student-made exhibits on traffic safety week.  I borrow the receptionist’s stapler and use it to make sure my business card makes it along with the message.  Khalid’s last school admitted him on the strength of my position in exchange for training their KG department, and I’m willing to make whatever sort of bargains I have to and pull whatever strings I can reach to get him into a school.  I’ve spent hours camped outside of school offices waiting to hound, guilt, impress, and emotionally blackmail whoever I need to in order to get Khalid a fair chance.  I think I’m getting used to it now.  I think I need to order more business cards.

“Khalid, it’s time to go now.”

“I need to fix.”

He’s trying to put the hat back onto the lego victim of a car crash who’s laying on lego street waiting for the lego ambulance to come to his aid.

“It’s alright, I think that’s how they meant the exhibit to look.”

“I like legos.”

Iman goes to school every day and Khalid gets left behind, asking me when we’re going to pick her back up.  Iman’s teacher is delighted that she’s the youngest child in the class and the only one who can already write her own name.  Khalid’s teacher, on the other hand, was openly angry about having to deal with “these kinds of children” when she already has twenty six other children in class she’s supposed to be teaching instead.  The atmosphere on the first day of teacher training for that school was bordering on mutinous, and what was intended to be a workshop on using reinforcement within the framework of ABA quickly deteriorated into an angry argument between the pro-inclusion principal and Khalid’s anti-inclusion (and openly anti-Khalid) teacher.  She walked out of the workshop, returned to argue with the principal in Arabic, and then walked out again.

To her credit, she did come on the second day and exhibited much less eye-rolling.  Today was the third day, and she looked almost civil.  Of course, she has no reason to be mad anymore, because Khalid is no longer attending her class.

He’s been home from school for three days now.  He owns uniforms from two different schools, and when Iman came home in her PE uniform yesterday, Khalid walked silently to his bedroom and came back dressed in his.   He’s honest to a fault, and so sensitive to the world around him but so limited in expressing how much it affects him.  I look at him, with his enormous beautiful eyes and his profoundly hidden profound intelligence, and my heart aches.

“You like legos my Jaan?”

“Yeah. I like it.”

He smiles at me.

“Then I think it’s time to buy you some.”

In a nutshell

KhalidHeadKhalid fell down and busted his head on the corner of the wall.  Stood him up and said Khalid, did you hit your head?  With blood pouring down his face he answers: No.   No tears, no crying.  Rocking in pain, but outright denial because he refuses to acknowledge things he finds uncomfortable.  He’s an amazing little man, SubhanAllah.

Mashed a kitchen towel against the side of his head and took him to the ER where everybody already knew his name. A two-inch long gash, Alhamdulillah, not too deep.  He played iPhone while getting stitches.  I asked him how his head felt, he said “sick.”

The kids started school last week, and Khalid is finishing this week- his current school does not have a high enough percentage of English speaking children in it for him to be able to use the words we’ve spent the last two and a half years teaching him.  Bad behaviors are being reinforced, and I am running amok this week trying to find another school that will take him.

Incidentally, I am also training the KG department of the current school, because that was an agreement made with the school in exchange for accepting him in the first place.  Wonder how many KG departments I’ll have to train before we can find one that sticks. :s

Alhamdulillah, very very busy.  Hiring a personal assistant this week, InshaAllah. As well as TEN more therapists.  Alhamdulillah.  Alhamdulillah.  AllahuAkbar.

I *heart* Islam

One of the most difficult things for me, in running AutismUAE, is trying to escape from being thanked or praised by the parents of children we help via our therapists.  I don’t mind being cried on, but once people start telling me how great/awesome/cosmic I am, I really start to squirm.  I feel guilty, because on one hand, everyone loves hearing how much they’re appreciated, but when you’re making your intention for the sake of Allah, and seeking your reward with Him and Him alone, then how do you reconcile when peoples’ praise makes you feel warm and fuzzy on the inside?

Islam has the answer!  Hence, the title of this post, and the link to this video, which I’ve actually linked before.  This link goes to the exact moment when Yasiq Qadhi talks about the same challenge that I face on a near daily basis- praise.  A man went to the Prophet Muhammad, peace and blessings of Allah be upon him, and shared his concern that sometimes, when he did something for the sake of Allah, people would later praise him.  The Prophet’s response must have felt as liberating to him as it does to me- the Prophet- salAahu alaihi wasallim- said that these praises are the heralds, the forerunners, the preliminary blessings for believers.  They are an advance of the good that is coming in the next life.

When I first heard this, I had to sigh with relief.  Alhamdulillah.  Up until hearing that hadith, I was beating myself up for being thanked, and while that doesn’t mean I can start my own We *heart* Abez club, that means that the happiness felt in my heart when a father tells me that his whole family makes dua for me every day is not a guilty pleasure anymore.  It’s good tidings of good things to come, InshaAllah.  Provided, of course, that I keep my intentions sincere and my actions halal.

InshaAllah.  🙂

Alhamdulillah 🙂

AllahuAkbar 🙂

Darn you, Pixar

Khalid has a hard time expressing himself, which is very common for a person with autism.  We’ve learned to keep a closer eye on him, to looks for signs of things that he may not be able to tell us.  Today, for example, when Iman started bawling and saying that Khalid bit her, I checked Khalid’s arm first.  Sure enough, I found teeth marks and a nasty purple bruise that far exceeded the dent that Iman dramatically showed me in her finger.  Khalid bit Iman because Iman bit him first, but he would never tell us that.

It’s not as if Khalid doesn’t talk- sometimes we can’t get him to stop talking- about trains, about Amtrak and Metrolink and Thomas.  It’s just that he won’t talk about himself.  He won’t even tell us when he needs to use the bathroom, and we have a roughly 90% rate of Khalid peeing in his pants if we don’t insist that he goes to the bathroom when we think he’s looking a little fidgety.  So you can see how hard it is to get an idea of what goes on inside of his head, and how easy it is to miss what a sensitive little boy he is.

In addition to Khalid’s self-inflicted belief that HF has abandoned him due to bad behavior (see yesterday’s Umrah post) Khalid is also suffering from severe haircut regret.  One of HF’s personal traditions is to have his head shaved whenever one of our new babies has their head shaved.  This, he says, is so that the baby doesn’t feel alone.  🙂   This time, when HF went to the barber to match his hairdo to Musfira’s, Khalid got excited by seeing the ‘paint’  (shaving cream) on baba’s head, and said he wanted his head painted too.  HF was skeptical, and he called me.  I asked Khalid, Khalid said he wanted to have his head shaved.  So we let him.

Khalid came home happy and we took some pictures of his and HF’s shiny new heads together.  The next morning the honeymoon ended.  Khalid woke me up by climbing into my bed with his hands on his head exclaiming ‘Oh no! Where is it? We need to find the hair!’ and since then, he has worn a hat, 24/7.  He even goes to bed in one.  He will run naked from one end of the house to the other (if he gets distracted while getting dressed) but he will be naked with a hat on.  We’ve tried to separate him from the hat, but he will cry and cover his head with his hands out of shame.  He will skulk around miserably with his head hanging, both hands covering his lack of hair.   We’ve decided that him not feeling humiliated is more important than us following vintage Western social norms out here in the Middle East where we have no such hangups about headgear, so Khalid gets to wear his hat.

This evening, the kids ate dinner without a fuss, bathed without any protest, and earned a brief cartoon interlude before bedtime.  We had ten minutes to go before lights-out, so I opened my computer and turned on a Pixar short film- Boundin’.  It’s here, and in case you’ve forgotten, tells the story of a happy, fluffy sheep who shares his joy by dancing for the other animals until one day- insert ominous music here- he is unexpectedly hauled away and sheared.  He is returned- naked and ridiculed by the other animals.  Are you picking this up yet?  Thunder rolls.  The sky darkens.  The sheep is crying in the rain.  By the time it dawns on me that this might not be a good cartoon for Khalid just at this point in his dramatic life, he has pulled his hat over his face, and I can see tears rolling out from underneath of it.  I ask him what’s wrong and he tries to run away.  I gently pull him back because I want him to see that the sheep can be happy even without his hair, which is what his friend the Jackalope teaches him.  Khalid sniffs and perks up a bit.  The sheep’s hair grows back and Khalid is happy.  But then that darn truck comes back AGAIN and the sheep is sheared and Khalid looks like the rug’s been pulled out from under him again.

It’s hard to tell how socially aware Khalid is or isn’t, but we’re learning.  When I introduced Khalid to my physiotherapist two weeks ago, she very casually asked Khalid where his front teeth had gone.  Khalid looked away from her and mumbled ‘nothing’ and then walked out of her office.  ‘Nothing’ is Khalid’s response to any question with an unpleasant answer.  She apologized to me profusely for embarrassing him, but I can’t fault her.  She’s not the first person who has asked and she won’t be the last, and as desperately as I wish I could, I can’t protect him from the world.

Ya Allah, please protect Khalid from hurt and harm, whether it come from friends or enemies, and protect him and sustain him, and please keep him in Your shelter in this life and the next.  Ameen.

A First, but Probably not a Last

This afternoon Khalid requested ‘momma’s kemtooter,’ so as I was heading out for a meeting, I came to turn my laptop on and log in for him so he can play games.  My computer has been password protected for a few months now, roughly since Iman realized she could drag, drop, and delete icons from the desktop.  Today, I turned on the computer and Khalid, instead of waiting for me to log in, plopped down in my chair.

“Oh, it’s password! It’s happy!  123! Let’s counting!”

I freeze.

“Khalid, you know my password?”

“Um, yeah!”

His chubby finger slowly types 1-2-3. And then instead of hitting enter, he accidentally hits backspace.

“Oops!”

He hits 3 again, presses enter, and officially becomes the youngest and most adorable little hacker in the history of both adorableness and hacking.  No one told him what the password is, but it’s safe to assume that he’s just watching me type 1-2-3 enough times to figure out what I’m doing.

I am so proud.  And I am so changing my password.

Khalid’s first blog: Dictated by Khalid himself.

My name is Khalid.
I am five years old.
I like strawberry milk juice.
My sister is Iman.
My baba is sitting.
My momma is sitting on the sofa.
Miss Taleen is big.
Miss Hind is big.
Swish milk.
Joy and Iman are in the house.
Iman is late.
Couting 123! 1 2 3 4 5 6 7 8 9 10!
2 4 6 8 10 12 14 16 18 20!
A chocolate cookie is eating the brown cookie.
Where is my two hats?
Khalid is so hungry!
Eating the Khalid!
School bus is yellow.  The school bus is going to the Arabian Center.
Khalid is big! Iman is small!
Wow! Wow! It’s something! Wow! It’s something yellow!
Ikea Carpet?
(Khalid leaves to drive his yellow school bus on the road carpet from Ikea)
By Khalid, the end.

Last Day of April

It’s been over two and a half years since I was thrown into the deep end of autism parenting and just over six months since I started AutismUAE, and while it’s impossible to say that you’ve heard it all, one can assume that they’ve heard a fair amount.  But nothing I had ever heard before affected me like what I heard last night, first hand, from a behavioral consultant visiting from abroad.

She went to visit a family to assess their child.  She entered and made small talk, and asked where the young boy was.  They pointed her towards a room.

There she found, in an empty room, a little boy restrained and with his hands bound.

And that was how he lived.

Every day.

I’m not done crying about it yet.

Knee-high Theology

So I’m home again in Dubai, 32 weeks pregnant and horribly sick- I’ve spent the last four days more asleep than awake, if you can count passing out punctuated by coughing myself silly as sleeping.  Today I get to see an ENT finally, Alhamdulillah.  We’re getting ready to pack the kids into the car and make a family trip to the hospital.  In the background, onions are frying.  Tonight, HF is making biryani. 🙂

A few days ago we sat down and watched an adorable anime called Summer Wars, which has a nice, non-violent, non-romantic story line that the kids enjoyed.  There was only one problem though- Obacha dies.  The old grandmother, who is the matriarch of the extended family, passes away in her sleep and animourning ensues.  And of course, Iman fixates on this, and a full two days after having watched the cartoon, she pipes up at dinner:

“Momma, what happened to the gwamma?”

-pause-

(HF looks at me expectantly)

“The grandma died and InshaAllah she went to Jannah.  Do you remember the story about Jannah?  Jannah is the most beautiful place ever, with castles and lovely clothes and yummy food!”

“Werizit?”

“With Allah!  Allah is up!”

“Up onna house?”

“No, higher than that.  Up past the sky.”

“Up inna stars?”

“Even higher than the stars.”

Khalid swallows his rice and says, “Moon.”

“Very good Khalid!  But Allah is past the moon too.  He’s higher than that.  And that’s where Jannah is.”

“Angel.”

-HF and I are collectively flabbergasted-

“Yes, the angels are in Jannah…”

“Angel fell down.”

*blinkblink*

“Shaitan wasn’t an angel, but he fell down to earth. You’re right.”

“Angels onna earth.  Angel is there.  Jumping.”

We turn and look towards the front door, where Khalid is gesturing.

“If you say so sweetie.”

The End. 🙂

Y’all are invited!

You're invited! April 9th, Zaabeel Park, 12pm Gate 1. BBQ & Fun for Autism Awareness!

April is Autism Awareness Month!

Because it wouldn’t be right if I didn’t slather my blog in as much autism as my daily life is slathered in, this month, I intend to post as much as possible about autism.  Whether you want me to or not. :p  So here I go. 🙂

First of all, there’s this picture gallery of individuals with autism from around the world. Many thanks to  Hemlock who mailed me the link today.  I like to think that I’m seasoned enough to keep it together when talking/looking/dealing/interacting with autism, since not only do I do that at home with my own son, but also with the children and families that our therapists take care of, but I cried anyway.  Maybe it’s because I’m pregnant and slightly more emotional than usual, or maybe it’s because I feel for each of the families in the pictures.  I’m not sure, it’s a combination of both, most likely.  But I know I’m not the only one who gets hit by this unexpectedly sometimes.  A certain nice man who just happens to live with me (though I won’t say who) was once reduced to silent, manly tears by this Arabic nasheed about autism.   Me?  I bawled.  And I don’t even think I was pregnant when I saw the video so that kind of shoots down the hormones excuse.

Second of all, Khalid turned five this March, Alhamdulillah. 🙂  And Iman turned three.  Alhamdulillah.  My amazingly beautiful, vicious, unexpected little savages- who are studying Arabic in anticipation for their entrance exam to a bilingual KG program- are busy running, jumping, arguing, and whacking each other out of babyhood and into young childhood.  We’re praying that InshaAllah, come KG-2 in September, Khalid won’t need a shadow in school.  At the moment, Joy goes to school with him every day to help him, basically, learn how to learn.  He will always need some extra support, but if he can function independently in a school setting, then that’s a huge step towards independence in the real world.  Please make dua that Khalid can take that step, because the sooner he can pass for ‘normal,’ the sooner teachers stop handling him with kid gloves- an educational tactic which is the frustrating equivalent of ‘give the kid what he wants, don’t make the retard cry.’

I know they mean well, but when Khalid is asked to do something by the teacher that he doesn’t want to do and Joy is working hard to teach Khalid to listen for the teacher’s instructions and follow through, it’s utterly useless for the teacher to backtrack as soon as she sees expectations being placed on Khalid and say “Oh no, it’s ok! He can lay in the middle of the floor while everyone else sits nicely on the mat!” or “Look class, Khalid is helping us choose a song!” as Khalid is gleefully pushing buttons on the CD player in the middle of the lesson.

The teacher is, in essence, undermining her own authority as well as Joy’s, and un-teaching the compliance skills that we’ve spent over two years building.  Khalid’s motto is, and has been since birth, “You And What Army?”  When other kids in the center got over their initial resistance to therapy within the first few sessions, Khalid insisted on crying himself silly for over three weeks.  I would peek through the window in the therapy room to see him blowing bubbles- and sobbing.  Putting coins in the piggy bank- and sobbing.  Cutting toy fruit with a novelty-sized plastic kitchen knife- and yes, sobbing.  He is still remarkably stubborn, strong-willed, and very determined in very nearly everything he does.  He does not suggest, he insists.  His train does not say choo-choo, it says beep beep, and if you suggest otherwise, he will get angry.  RTA is not an acronym for Roads and Transport Authority, it is a word in itself and it is pronounced ‘ri-taa’ every time an RTA taxi, bus, or metro train pass by.

I digress.  Compliance has been one of our toughest battles, and I get really, really annoyed when I pick Joy and Khalid up from school and Joy is sighing from exasperation because the teacher let Khalid lay at her feet as she stroked his hair while the other children sat nicely on the circle and listened to the story.  (Teacher’s pet, literally?)  Joy has taken to simply removing Khalid from these situations by walking him out of the classroom, much to the teacher’s confusion, as Joy basically has to step in and interrupt the lesson in order to reinforce such simple requests as ‘we sit in a circle during circle time’ which the teacher neglects because she ‘doesn’t want to make Khalid upset.’

SubhanAllah.  Right.  I think I’m supposed to be talking about autism.  I am, really, but in a way specific to how people perceive a child with autism.  I realize that people are trying to be sensitive, but my maternal hackles are raised (and teeth bared, too) every time people treat Khalid as something pitiable.  Yes, fifty years ago they would have written him off as ‘retarded,’ because they didn’t realize what they are only slowly realizing now- that there is intelligence locked inside of body that fails the mind.  Many non-verbal individuals still have 100% comprehension of what is being said around them, or have remarkable analytical, spatial, mathematical, or artistic abilities that go un-noticed for decades because they cannot be accessed, but not because they don’t exist.

So there.

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. 🙂