(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.

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.

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!

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.

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.”

Khalid 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.

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.

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 leaves to drive his yellow school bus on the road carpet from Ikea)

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.