Abez sez Assalamualaikum!

Category Archives: Autismuae

Really Oughtta be a National Holiday…

February 18, 2014 8:27 AM ⋅ 5 Comments ⋅

Alhamdulillah, our office has finally been moved into the premises of the larger organisation that we are joining.  It’s a real office.  With real people.  And when you’re me, every day is Take Your Toddler to Work Day!

I think Musfira likes it so far.  We get up, have breakfast, get out of our pj’s, and pack our respective bags.  Mine has a laptop, a company stamp, a check book, and various reports.  Musfira’s has three diapers, powder, a box of cereal, and small LED flashlight from Daiso.  It is pink.

We wake up in the morning and leave the untidy house- the cereal bowls crusting over in the sink, the pile of folded laundry that’s been on the coffee table for three days, and we drive.  We listen to Qur’an or Nasheeds.  We point out birds. Sometimes, Musfira likes to point out trees.

Momma, twee! oh, twee! twee!  twee, twee, twee, twee…. ah twee!

We get to the new office and Musfira is immediately welcomed by any number of bouncy, energetic, ABA therapists with exactly the right sort of personality to be a toddler’s best friend.  She sees who’ll be working with her today while I’m working with admin.  She gets happy.

SHELL!  (Hanshell)

EYES! (Aiza)

JOY! (Joy)

She plays with puzzles, and climbs up and down the stairs, and when no one’s looking, she hides in a corner and poops in her diaper because she’s too afraid to use the toilet at the office.  So then I close my reports and wash her little bottom in the bathroom without a changing table, and she runs back outside to climb the stairs again and all is right with her little world. Sometimes, we have impromptu teleconferences.  I’ll be talking to one person on the phone.  And Musfira will either talk to me, or start talking to them too.  She comes with me on lunch meetings, and the day before yesterday, she demanded- and got- the Clinical Supervisor’s apple juice.

Today we’re going to be taking our lunch from home, because I cannot and will not eat out every day- it’s too expensive, too unhealthy, and too hectic trying to pack a two a half year old out to lunch and back again within any given timeframe.  She likes to chase birds, linger over her chicken strips, and ask loud questions about other lunch-hour patrons.

Musfira: “momma, wha happinid to a lady’s nose?”

“It’s pierced dear. Some cultures wear earrings in their noses. Isn’t it lovely?”

Musfira is unconvinced. She continues to stare fixedly at the nice Indian lady in the power suit.

It’s 8:30 right now, and my company toddler has overslept, which is why I’m blogging instead of driving to work.  But it’s time to wake her up now, change her into her best corporate diaper, and hand her to her adoring fans while I attempt to get some work done.  Alhamdulillah.  Off to work we go.

Posted in: AutismUAE, Momma-ism, Musfira

The Mother of All Mommaisms

December 11, 2013 9:46 PM ⋅ 3 Comments ⋅

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. 🙂

 

 

Posted in: Autism, AutismUAE, Medical Misadventures, Momma-ism

Gofundme, please?

December 8, 2013 2:33 AM ⋅ Leave a Comment ⋅

Well, we now officially have a GoFundMe page.  JazakAllahuKheiran to Mariam for setting it up. 🙂

I feel nervous and excited.  But nervous.  But hey, what have I got to lose?

Apart from the not for profit autism intervention service that I’ve invested the last three years of my life on but Hey!

Let the spamming of everyone you know with this link, BEGIN!

http://www.gofundme.com/AutismUAE

Posted in: AutismUAE

A lovely update :)

December 5, 2013 10:17 PM ⋅ 2 Comments ⋅

AssalamuAlaikum all of you really awesome peoples.  🙂

smiley-happy-face-yellow Through the grace and mercy of Allah, which facilitates the kindness and generosity of people like you, things are looking better for AutismUAE.  Not only have the comments in my last post reached almost a third of what we need (JazakAllahuKheiran, really) but Muslim Matters has also offered to run a post for AutismUAE too.  I don’t know exactly when that will be, but I’ve had a chat with the licensing department and they’ve given us a date for the 20th of December to bring the funds in.

So now, I have a little room to breathe, and a lotta reasons to smile. 🙂

Truly, after hardship comes ease.  Alhamdulillah 🙂

Everyone who left a comment offering to help should have received an email from myself by now, as well as HF, who’s my pro-bono Director of Finance.  He’s the man with the plan (as well as the bank account information!) so if you haven’t heard from him yet, or haven’t received an email from me, please check your spam and try again.

<<<VIRTUAL INTERNET HUGS!>>>>

-Abez

Posted in: AutismUAE

2.0 is not a fan of ambiguity

November 30, 2013 10:10 PM ⋅ 18 Comments ⋅

To make a long story short, the not-for profit autism intervention service that I founded three years ago is in danger of going under.  Partly due to a long string of non-paying parents, and partly due to a chronically ill, depressed, and mentally spazztastic director.  That would be me.  I’m the chronically ill, currently a lil bit depressed, and often spazztastic director.

*waves*

And I’m going to hold the internet hostage until I can find twenty thousand dirhams to renew my business license next month.

And by hostage, I mean I’m on break from twitter, FB, and heavy blogging until I can keep my ship from going under.

No need to comment, unless you’re one of those rich UAE sheikhs who gives people cars as hostess gifts.  Or a person who wants to send me money for some strange reason.

So I’m really sorry, but I’m mentally in so many places that I haven’t the brain cells to be here as well as there.

And I’m sad and scared and praying that Allah saves AutismUAE as well as my sanity.  And I’d be grateful if you could too.

JazakAllahuKheiran.

Posted in: AutismUAE

If you can’t say anything nice…

November 13, 2012 11:28 PM ⋅ 5 Comments ⋅

The parents of a child who made gradual but consistent progress for the year and a half my therapists worked with him left the country with an unpaid bill of 16,000 aed (that’s roughly 4,000 dollars) after promising to pay.  They ignored my phone calls and emails for three months.  I caught the mother out by calling her from another number, and when I met her in person to discuss settling the unpaid bill, she said she didn’t want to pay the bill and if we insisted we pay then she would call the police and report my team for child abuse.

This, from a woman whose services were never stopped even when she was late to pay for months at a time, who was exempted from late fees because of the financial difficulty she said she was in, and who kept saying I had to trust her and that she would always pay and that she was not a cheat.

This, from a woman who said we were both mothers of special needs children and that we had to trust each other.

I run a zero-profit business and have not received a salary in two years.  I have licensing fees to pay this month and staff who have a right to their salaries.  It will most likely cost me more money to prosecute this woman than I will get back from her. So now what?

Humanity has hit a new low in my eyes.

Auzubillah.

 

Posted in: AutismUAE

Bronchitis, Business Licensing, Separation Anxiety, etcetera

November 19, 2011 5:17 AM ⋅ 10 Comments ⋅

So I’ve been sick, the kids have been sick, the business license renewal has been held up for the last two months and two of the therapists who were ready to fly down have now withdrawn.  Everything happens for a good reason.  I remind myself of this not only because it’s true, but because that’s the only way to stay sane in a dramatically insane world.  And now, back to our regularly scheduled program.  

So Khalid pinched Iman today, as he does roughly ten times a day or more.  And it was quite hard, and it was unwarranted given that Iman was trying to show him how a party hat could also look like an ice-cream cone and was being insistent but not offensive and definitely not deserving of a pinch.  I saw it happen from the living room window- she was holding a party hat in his face and try to show him- “Khalid look, it’s like an icecream!  See!  Look!  Like icecream!” and he had already had enough of Iman for the day, so he got off his bike, chased her (shrieking) to the front door, and then grabbed both of her arms in what we call a pinch, but actually involves his whole hand grabbing her arm and then digging in.  Iman’s arms are covered with nail marks, scratches, and bruises.  It doesn’t help that most of the time, she’s the instigator of the fight and will try something insane- like whacking Khalid on the head with a wooden fishing pole just because he’s not paying attention to her- and then running screaming in the other direction while he chases her down and pinches in retaliation.

It’s frustrating, really.  I feel guilty because Khalid resorts too easily to serious pinching and scratching that usually draws blood and Iman is on the receiving end of the pain.  I feel annoyed with Iman, because she deliberately provokes Khalid to get a reaction out of him, but she’s usually trying to play with him, and when it doesn’t work, she then opts to fight with him.  She doesn’t like to be ignored.  Khalid doesn’t like to interact.  She’s demanding.  He’s autistic.  Now what?

So Khalid pinched Iman, and I took him inside and put him on time-out.  And then, because we had accidentally left the kids’ new Leapter toys (thank you Aunty Owlie!) in the car outside, I put on a scarf and walked out to the van to retrieve them.  The automatic doors on the van aren’t working, so it was taking me a few minutes to get inside.  I was pulling ineffectually on the handle when I suddenly heard the loudest, most anguished screaming from inside the house.  I ran back inside to find Khalid shaking, in tears, mashing his face in his hands and crying so hard he could barely breathe.  This from a boy who busted his head open on the wall last month and didn’t shed a tear- and I realized- he thought I was leaving.  Because Iman had followed me outside of the house, Khalid was left alone on time-out, and he thought he was being walked away from.   He couldn’t see Musfira in her baby-gym from where he was sitting, and he did wait for a minute or so (as I struggled with the car door) before going into panic.  But he thought I was gone.  And he was terrified.

So Iman and I hugged him, and hugged him and hugged him and hugged him, and when Musfira started crying and I went to pick her up, Khalid followed behind me with his arms around my leg and wouldn’t not allow any distance to come in between us.  So I fed Musfira and Khalid hugged the parts of me that Musfira wasn’t taking up, and we talked.  I told him I was NOT leaving, that I was sorry he had gotten scared, that I would never leave him alone, that I loved him, that I would stay with him, that I would never abandon him- anything I could think of that he could understand.  Eventually he calmed down and wandered off to play his Leapster.  And then I remembered that he’d reacted similarly when we dropped HF off at the airport when he was leaving for Umrah.  And then I remembered that once upon a time, Khalid was my shadow, and the hardest thing (apart from closing the bathroom door, ever) was leaving him by himself in a room without me.  It was always a meltdown.  Khalid has, and has always had, separation anxiety.  Some children with autism are indifferent to the presence or proximity of other people.  Khalid was in panic without it.  And I forgot- I walked out of the house without him and gave him the scare of his life.

Guys, my mother of the year trophy is so big I’m going to put it next to the house and rent it out as a studio.

I’m not done feeling guilty yet, but I do have other things to blog about.  Like Iman- who is lovely in addition to her aforementioned deviousness.

“Momma, you have three babies! Khalid, Iman, and Musfira!”

“Yes, and Khalid got bigger and now he’s a little boy.  Iman got bigger and now she’s a little girl, and every day Musfira gets a little bigger but right now she’s still a small baby.”

“Yes, a gift from Allah!  Inna gift box!”

🙂

Makes sense.  Gifts do come in gift boxes, do they not?  :p And then a few weeks ago I was driving Iman to the beauty salon to have her bangs trimmed, and I said:

“Iman, thank you for coming with me to the beauty salon.  I love it when come for a drive with me.”

Iman replies: “And Momma, I love it when you drive, and when you sit with me, and also, when you talk to me, and go shopping, and when you hug me, and when you laugh, and when we go to the beauty salon, and also?  The park!”

And then yesterday: “Momma, I love you. *happy smile* Can I have gummy bears?”

Oh, and Musfira.  She’s developing the grab-and-cram reflex.  She’s still kind of slow about it, because she looks like someone trying to operate their arms underwater and through beer-goggles, but if you try to drink tea anywhere near her, her little arms will stretch out and she exerts the most adorable, wobbly sort of concentration to grab the cup and ideally cram as much of it into her mouth as possible.  Obviously, this does not work for tea cups.  This does work for toys though, and her blanket, and my scarf, and often, the corner of my skirt if I’ve been standing in her vicinity long enough.   Yesterday she grabbed two big handfuls of my face and -plop!- landed her open mouth on it and attempted to chew my cheek, chin, and jaw in a surprisingly high-speed attack.  It’s the cutest sort of ambush, and the only downside is that at any given time, most corners of whatever I am wearing will be damp and lovingly chewed.  I feel like a walking hors d’oeuvres.  It’s very validating. I may not be yummy mummy, but I am a tasty one. 😀

Oh, and on Thursday Khalid’s shadow teacher was unable to make it to school, so I shadowed Khalid in school for the first time ever.  But that’s another post for another day, and it’s 5am right now. Alhamdulillah 🙂

 

Posted in: AutismUAE, Momma-ism

Because I’m the boss, applesauce.

October 23, 2011 8:23 PM ⋅ 9 Comments ⋅

One day, when I have a desk, I’m going to have a plaque on it, but it’s not going to say ‘Director,’ it’s going to say ‘Humanitarian Misanthropist,’ and that way they’ll know that I’m there to help kids get treatment for a fraction of the normal cost, but if they argue with me about 200 dirhams a month for transportation, then I’m going to show them the door. With my foot.

Posted in: AutismUAE

I *heart* Islam

September 20, 2011 10:26 PM ⋅ 2 Comments ⋅

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 🙂

Posted in: Autism, AutismUAE, Islam

The business license should say ‘Frustrated Incorporated’

June 3, 2011 5:17 PM ⋅ 9 Comments ⋅

I have a day off today, Alhamdulillah.  I got out of bed at noon, had two showers- one accidentally with a cup of tea, the other with the standard water- another cup of tea, a bagel, watched a Japanamation movie that I don’t know if I could ever sit through again, and I have studiously avoided doing anything useful, house, or work-related.  Having spent fourteen hours in bed asleep (or something close to it) my feet are almost feet shaped again.  Almost.  Alhamdulillah.  They’re not entirely unpuffy, but I have ankles for the first time in weeks- two of them!  Thank you HF, for taking the kids to their grandparents’.  You are the awesomest.  I couldn’t have been happier if I had woken up to brand-new chocolate-covered minivan in the driveway.  Really.  This is too good.  🙂 And now, another luxury- to the blog!

So AutismUAE has been licensed and operational since late September of last year.  We have only one more quarter left on the business license before it’s time to pay up the renewal fees, and in the mean time, we’re operating at…drumroll please… 2/5th of our capacity.  Why?  Because I issue visas for therapists and they sit for SO LONG in the Philippines consulate that I’ve had one visa expire before the employee could even get here and two more in limbo for over a month and a half.  If I don’t get them in the country within the next two weeks their visas will expire AGAIN and the whole four-month process will have to start all over again.

Between these three and one more therapist who’s been stuck in Iran for the past week waiting for her employment visa to be issued (already, it’s a week late) I have had months and months of lost revenue, and for a business that operates at cost, that’s a kick in the teeth.  How am I maintaining expenses?  Loans.  How long is our waiting list to get a therapist? Six to eight months, optimistically speaking.  How am I coping with the 30+ parents on the waiting list?  Not so well.  One parent called me the other day (she’s been on the waiting list since January) for what is, I am sure, the tenth time despite being politely told, please don’t trouble yourself to call, when I have a therapist, I’ll call you.

(Yes, I know, time is of the essence when it comes to autism therapy for child.  Yes, I know the early intervention window is running out.  Yes, I know you’re desperate.  No, I can’t do anything to make the therapists come faster.)

The conversation concluded with: These are our children, we need to get our act together.  And I sympathize with the mother, I really do, but the presupposition that I’ve been sitting on my hands since January  is what set my teeth on edge.  I’m 9 1/2 months pregnant.  I have a child with autism myself.  I have a paying job in addition to this completely non-paying job, and between pulling my hair out as well as one can from beneath a hijab and running after visas, agents, freezone people, and documentation- and still meeting with parents individually as well as for the monthly support group meetings, I think I could redefine the word ‘overworked.’  Just maybe.

Then there are the parents who call every other week, despite being on the waiting list for only a month or so.  And then there are the parents who want to know who they should follow-up with weekly once I am on maternity leave, and I say ‘just email me.’ And- here’s the hardest one- there are the parents who ask me for help.  I know I would do anything for my child, and so I don’t expect other parents to try less.  I get emails, I get parents on the phone begging, crying to me even, about how they cannot afford any treatment for their children, and is there no chance for any sponsorship or discount?  Forget the mothers, the fathers cry.  And I bite my lip and tell them I’ll put them on the waiting list for a service that is already marked down 60% from other centers, but that’s all I can do.  And I hate myself for saying what it basically No, I cannot subsidize a service that is already provided at cost  and when they finally hang up, I cry too.

Sometimes I worry about what would happen if one of my clients found this blog and started reading through all the AutismUAE posts- they would see past the shiny Director mask and into the world of a tired, complaining, pregnant, director and I think they would lose faith in me.  Well, the good news is, I don’t have any faith in me.  It’s all in God, and I need to stop beating myself up for not being able to save the world.  I have tried my best to get five therapists on the ground running within my first year of business, but with three quarters gone I have two.  We had to fire one already, and that was an amazing lesson, though I would have preferred to learn it when I was more financially stable and less in debt.

Sometimes I wonder whether all humanitarians eventually become misanthropes.  Not that I’m much of a humanitarian, but already I dream in dirhams, and I calculate expenses by how many months of therapy such and such an item costs.  I see a woman with a designer handbag  and I want to beat her with it.  Thirteen thousand dirhams for a small YSL bag is two months of help for someone’s child- two months of skills and hard lessons learned toward independence, maybe even speech.  Two less months of fathers worrying themselves sick and mothers crying themselves to sleep because every day they watch their children drift farther and farther away from the outside world.  Is that dramatic? No, it’s realistic.  We waited only 3 or 4 months to start Khalid’s therapy, and every day was agonizing.  It felt like watching Khalid die a little bit more every day as he became more silent, more withdrawn, and less and less likely to interact with us an any level whatsoever.

I’m starting to hate men in sports cars.  I don’t want to start on what I could accomplish if some rich sheikh dropped a Maserati’s worth of money into my lap.  Forget a Maserati- even a new corolla could set me up with an additional business license and five more therapists, bringing the waiting list down from thirty children to twenty, and although new children are added to the list every day, every therapist we employ makes a small financial margin that goes towards expansion, and the more therapists we have working the faster we can hire more therapists.  It’s a catch-22 of sorts, and although we could expand faster if we charged more for services, if we charged more for services it would defeat the intention of making services affordable.

HF keeps reminding me that Allah knows and plans best, and the fact that there’ve been months and months of delays due to unforseen, uncontrollable, non-deliberate circumstances should only reinforce that.  We’re not slacking off, we’re just being held back and Allah knows the reason.  He’s the best of planners, and while I can’t really say that to a crying parent on the phone from an emirate that I can’t foresee sending therapists to for the next two years, remembering that will at least help me retain my sanity.  Or at least my humanity.  I don’t know, I feel tremendously disconnected from the people and world around me.  No one else I know, no other friend of mine is pregnant, trying to run a business, trying to successfully parent two children- one of whom has autism- and is also an annoyed corporate communications consultant on the side.  While there are overlaps of interest, as well as a few really lovely people who will listen to me no matter what I’m talking about, I have so little time for destressing, socializing, or even holding still for very long that I’m starting to wondering if I shouldn’t come with a warning label: Contents under pressure.

(The sticker should be big and orange, and it should be stuck to my feet- they’re generally so swollen they look like they could explode.)

Maybe I should write out a list of topics that one should avoid in talking to me: Khalid’s apparent ‘lack of autism’ being one of them.  Another mother at the school was accusing Joy of looking too much into Khalid’s ‘disability’- “There’s nothing wrong with him! Are you sure he has a problem? Look, he’s fine!” and while it’s a relief that Khalid can ‘pass’ for normal to a casual observer, it’s a slap in the face to be told ‘You’re so wrong, you’ve been making it up and imagining a cause to spend so much money on therapy you’re in debt and so much time worrying that it’s made you see ‘special needs’ everywhere you look!’

The insinuation is either that we worry for no reason or we’re making it up to get special treatment.  Joy is more patient than I am, and she just said thank you we know he has autism and he’s made wonderful progress.  But then the mother pushes, because she’s a doctor, and demands to know who stuck the autism label on Khalid and how they went about doing so.  Because you know, as a dermatologist, she’s qualified to judge these things.

Excuse me, I think my misanthropy is showing.

I digress.  Sometimes it feels like my world is divided between people drowning in autism and people refusing to believe in it. On one hand you have people write off the years of blood, sweat and tears with a wave of their hand- Oh no, he’s fine.  I’m sure you were just imagining it all along. On the other hand, you have parents who are trapped living the same nightmare we were less than three years ago, and my inability to do anything for them puts an additional heaping of misery on top of my frustration.

I tell the parents- I know what you’re going through, I’ve been there myself and I’m working as fast as I can- but I know that when you’re at that stage you can’t believe anyone has it as badly as you do.  I remember talking to another mother- she was crying of course- about how she was so exhausted because her child wouldn’t go to sleep for two hours the other night, and then woke up again.  When I told her I could sympathize, she said really it’s so hard and I said yes, I know- Khalid fought going to sleep every single night of his life until he was almost three, and even then he would wake up every two hours kicking and crying.  Every night.  So yes, I know.  And I’m still trying to get you a therapist as quickly as I can.  And one father told me with tears in his eyes- you don’t understand- my son hits and kicks and pinches his mother and she’s nine months pregnant! And my mind went back to life with Khalid just before Iman was born- I’ve been nine months pregnant with busted lips, scratched face, and bruises from the daily battle of the daily everything involved with a child who has no idea what you’re trying to do and no idea what he’s doing to you.  It got so bad that I would have to keep Khalid at arm’s length.  If I saw him coming towards me I would have to deflect him and move away, because his only way of communicating pain, frustration, or want was to pull, hit, or fight until I understood what he needed.  And I know there are cases more severe than ours, much much more, SubhanAllah, but I get so tired of trying to convince people that the delays we’re facing in getting them a therapist have nothing to do with me not caring, not trying, and not putting everything I have into AutismUAE.

SubhanAllah.  I do have some happy thoughts, really.

Happy Thought Number One: I got the nicest SMS from a father making dua for our success and that Allah grant us Jannatul Firdaus.  And that made my week, and it still brings a smile to my face, because AutismUAE has two goals, one of which is a halal, sustainable operations and the other is Sadqa-e-Jaariya.  Charity that keeps on giving.  We may be really, really struggling, but at least we’re not in danger of having to close up shop -yet- and I can’t think of better business ROI than duas or better KPI’s than your customers praying for you. 🙂

Happy Thought Number Two: The Al Noor Training Center for Special Needs opened in 1981 with eight employees.  When I popped in for my first visit last week to their huge facility in Barsha, I saw an entire fleet of school buses.  And they started with eight people when I was a one year old!  It takes time, it takes patience, and according to the logos on the back of the buses, it may also take corporate sponsorship from HSBC.  Hey, a fleet of buses doesn’t pay for itself!  Or, maybe, it could. 🙂

Happy Thought Number Three: Hey, InshaAllah we’re having a baby! 🙂  Not yet though, but soon InshaAllah.  Any day now.  For Iman it’s not soon enough.  The other day she climbed into my bed, first thing in the morning, and poutingly demanded “Momma, where’s my baby ___________?” (gender-specific designation censored 😛 )

Happy Thought Number Four: Khalid has started to hug and kiss me of his own imitative, gently and without any of the ‘peck and go’ of a little boy who’s just kissing his mother because his therapist told him to.  It’s become a natural behavior to him, and I’m still bowled over every time he climbs through the car before going to school to put a kiss on my cheek that I didn’t ask for.  I absolutely love it.  He climbs in bed with me and puts his head on my shoulder and lays there happily, not wrestling or bouncing or looking for my phone, he’s just cuddling with me.  And I lay there with him feeling melted and happy, and when Iman comes in she kisses me sweetly and cuddles up on the other side and we have silly conversations and the two of them tell me all the things they’ve been waiting to tell me since they woke up a WHOLE TEN MINUTES before me and they’re still in their pajamas but they have things to tell me that just cannot wait.

Hmm, this post has gotten really long.  I suppose that’s alright considering that I don’t know when I’ll have another opportunity to sit uninterrupted at a computer while simultaneously ignoring work email. I’m on maternity leave, gosh darnit!  I am leaving my phone on silent and my pajamas on the bed, because two hours from now I’m going to put them back on and not get out of them until we run out of groceries!

Though if you happen to be a rich sheikh and you feel like dropping any amount of money in my lap, I promise I will answer your email right away.  Everyone who isn’t a rich sheikh, please just remember us in your duas for an easy delivery, a healthy baby, and successful operations for AutismUAE.  JazakAllahuKheiran!

Posted in: AutismUAE, Momma-ism

How’s this for an update?

April 13, 2011 9:09 AM ⋅ 8 Comments ⋅

I’m sitting here waiting for the next interview to begin and thought I’d actually post something.  Alhamdulillah, the trip is going well.  Yesterday we held a 2 1/2 hour orientation for therapists and some seniors from a local center.  After that we interviewed four of them, hopped into a taxi, and then went to the other side of town to meet with the Executive Director of the Autism Society of the Philippines (ASP).  He was such a lovely person to talk to,he was very helpful and gave us the inside-out of how ASP works, what the structure is, how they’re funded (or not!) what their projects are, etc.

Joy renewed her membership, and I signed AutismUAE up as a member as well and we’re very happy to support them in any way we can.  The ASP reminds me of us, really.  The Executive Director- Ranil- sits in a one-room office with a total staff of four- there are fifty national chapters, but he’s still the one driving around, making phone calls, running errands- the fancy titles don’t mean much and everyone does whatever is required regardless of the job description.

It felt a bit strange introducing myself to a board room (eep!) full of therapists yesterday as the Director (eep!) and I felt like I had to specify that I was also the driver, the clerk, the web designer, and the office boy- but after having met Ranil, I feel less self-conscious.  I feel less like I’m ‘pretending’ to be a director and more like making coffee and copies is actually part of the directorial job description.

Yes, I’m sure there are people in managerial positions out there who pay other people to wipe their noses for them, but I don’t see that as anything I aspire to.  And I feel better now that it doesn’t seem like that would be expected of me, either.  *phew*

The interviews that I mentioned in the first paragraph actually happened some time between the second and third paragraph, and now that they’re over, I can talk about them.  We have two potential therapists who both have their Bachelors degrees in Child Psychology, are in their final year of Masters in Special Education, and have four years of ABA experience with two very reputable centers.  We’re not hiring them yet though, we’re giving them three months to develop… the powers of speech. :p  They’re too shy, too quiet, too polite, not loud enough, not verbal enough, and not confident enough to swim with the sharks in Dubai, the sharks being the demanding, inquiring, and highly verbal parents that they’ll be working with.

Unlike center-based therapy, where contact between therapist and parent is very limited, home-based therapy involves complete immersion of the therapist into the child’s home environment.  There is no middle-man to mediate, and since therapists and parents together form the team that is responsible for the materials, the learning environment, and the consistency of the behavior modification plan from each family member, the therapist needs to go in wearing their own pair of bossy boots.

Yes.  Bossy boots.  Big, steel-toed, bossy boots.  You grow them after developing the confidence that you know what you’re talking about and it’s more important that the child be taught correctly than to be mis-taught because you’re afraid of offending a ‘senior’ therapist or parent.

These two therapists were not wearing bossy boots.  They were wearing what we call the too-nice loafers of Pinoy Politeness, where the cultural norm is that it’s more important to be polite than honest, and rather than say ‘no’ to anything (because it could potentially offend someone) it’s better to say yes and then disappear.  I’ve been in this situation twice or thrice already, and twice (TWO TIMES!) this has involved people accepting jobs and then being nowhere to be found when it comes time to sign the contract.  They don’t answer email, they don’t answer phones- they just disappear.  And weeks later we find out from other therapists that, in one case, the therapist’s significant other didn’t want her working abroad, and in the other case, the therapist changed her own mind about working abroad but at no point whatsoever decided to inform me.

We’ve even had one candidate cut and run- literally- from the car of a family we set up an interview with, and disappear.  After making a few phone calls, we discovered that her aunt had worked for the same family before, and reported that the mother could be verbally abusive.  Why she couldn’t have told us this before we set up the interview, before she got on the bus, before she traveled for two hours and then gotten into the mother’s car only to jump out again a few minutes later- I don’t know.

I digress.  Alhamdulillah, we have finalized and approved of our next three therapists, all of whom are wearing BIG OLE BOSSY BOOTS because they’re all senior-level therapists with years of experience managing other therapists in addition to their children, and they have the presence to prove it.  Among them, even the quietest senior- who has been an ABA therapist for seven years- makes up in content what she lacks in volume.  She reminds me of a neighbor that Erma Bombeck once wrote about in one of her many gems as a humor columnist.  Erma described herself as a mother who screamed and yelled her kids into obedience (or some semblance thereof) and bitterly resented the demure Southern Belle who lived next door and never raised her voice above a whisper.  Imagine her surprise one day when her kids came back home and reported that they had been gently told, in the most feminine whisper, that if they played ball on that lawn again they’d have their gizzards ripped out.  0_0

So yes, volume.  You don’t always need it.  🙂

Alhamdulillah, Alhamdulillah, by the time we’re done processing papers (which could take two months) our team will be comprised of:

  • Joy: My lead therapist and Khalid’s ABA therapist who commands such authority that if she weren’t handling kids she’d be bossing around a naval fleet somewhere.  She’s been with us for a year and a half now.
  • Jel: A superstar Physical Therapist turned ABA therapist who earns rave reviews from the parents as well as the visiting case managers and psychologists. She’s been with us since the beginning of this year.
  • Grace: An English teacher turned ABA therapist who is four and a half feet tall but manages older, more severe children two feet taller and double her weight.  She’s been with us for two weeks and is already garnering good feedback from parents.
  • Cheng: She’s the senior therapist with seven years of experience, a degree in Child Psychology and the authoritative whisper. We hope to have her in Dubai within the next two weeks, max.
  • Adrian: A broad, tall Physical Therapist and senior ABA therapist who handles the 16 year olds and physically demanding children.  He is scheduled to be down by mid-May of this year at the latest, InshaAllah.  He will be joined by:
  • Sherry: His wife, who is also a senior therapist, possibly even smaller than Grace but with no less command in her personality.
  • Jan-Jan: A senior therapist, Physical Therapy graduate with a Masters degree in Special Education who has also been giving speech therapy to deaf children for the last three years.
  • GNet: Another triple-header- A Physical Therapist, Special Ed Masters, and senior ABA therapist- GNet also taught high school for four years, so she’s got the kind of bossy-boots that you come to expect from someone who has taught teenagers.

After that, we have our two too-nice Pinoy Polite aba therapists with Child Psych degrees.  They’ve been given three months to take up public speaking, debate, or just arguing with people around them :p and then they’ll come back for a reevaluation.  Not for their ABA skills, but for their confidence and ability to communicate effectively.

And now that we’ve wrapped up three intense days of work, Joy and I are heading to Qiapo- the Muslim part of town to visit the only Mosque in Manila and maybe find a halal lunch, InshaAllah.

Ma’Assalam!

Posted in: Adventures, AutismUAE

Live from Manila…

April 12, 2011 5:50 PM ⋅ 1 Comment ⋅

Wow, the Philippines looks a lot like Karachi- but with more shorts and flipflops and no donkeys. 🙂  And no one even stares.  Which I am amazed and impressed by.  Am here for one and a half more days of interviews and meetings, but I’ll try to update tomorrow if I can. 🙂

A Jeepny- a bit like a stretch-limo rickshaw, lol

I did a double-take when I first saw this- Yes, 7-11 is here, and apparently, they're here on every single block!

Posted in: Adventures, AutismUAE

Y’all are invited!

April 4, 2011 10:44 AM ⋅ 2 Comments ⋅

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

Posted in: Autism, AutismUAE

Treading water, I think

January 25, 2011 10:37 PM ⋅ 7 Comments ⋅

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

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

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

*sigh*

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

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

By Abez, the end.

Posted in: AutismUAE

Busy in wonderful ways :)

January 7, 2011 11:06 PM ⋅ 8 Comments ⋅

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

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

Ameen

Posted in: AutismUAE

Why I feel sorry for Spiderman

October 17, 2010 4:27 PM ⋅ 10 Comments ⋅

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

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

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

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

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

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

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

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

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

Posted in: AutismUAE

Look out, Bahrain!

October 9, 2010 10:48 PM ⋅ 1 Comment ⋅

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

Posted in: AutismUAE

4am: What, us? Nocturnal?

September 29, 2010 5:25 AM ⋅ 4 Comments ⋅

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

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

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

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

But right, NO WORK!

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

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

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

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

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

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

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

Posted in: AutismUAE, Momma-ism

Choo-choo?

September 21, 2010 1:40 PM ⋅ 6 Comments ⋅

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And Khalid will say No crying! No crying!

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

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

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

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

I think I can, I think I can.

Choo-choo!

Posted in: AutismUAE

A culmination of hope and fear- AutismUAE.com

August 19, 2010 10:47 PM ⋅ 17 Comments ⋅

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

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

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

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

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

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

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

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

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

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

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

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

And they said no.

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

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

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

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

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

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

-ahem-

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

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

Ameen, Ameen, Ameen.

Posted in: Autism, AutismUAE