Abez Is... 50% White,50 % Pakistani,Muslim Hijab-wearing type female, Daughter of Momma, Sister of OwlieWife of HF,Momma of Khalid, a special little boy with Autism, and Iman, a special little girl with especially big hair,Writer,Graphic Designer, Editor, Freelancer, Blogger, Inhaler of Chocolate
My Cousin-
really, he's my cousin. Wish he would update more.
Thursday, March 04, 2010
There's a monster under my bed, but don't worry, I think it's just me.
For the most part, I consider myself a fairly well put together person. Alhamdulillah, I’m not easily given to panic or woe-is-me-ism. Lately though, I find myself being ambushed by sudden, overwhelming feelings of hopelessness and futility. Am I depressed? Not nearly as much as I was last month or so. I think I’m just emotionally vulnerable. And here I am blogging about it, because sometimes the only way to conquer the monster under your bed is to put your head under there with a flashlight and see that it’s only an old pair of bunny slippers.
I haven’t been able to drag the monster out of the dark yet (and to date, I’ve never owned a pair of bunny slippers) but the first step towards a solution is admitting that there is a problem. So I am. And here it is. I, Abez, deliberate Muslim and earnest (if not part-time) seeker of The Straight Path, suddenly find myself face-down in a pot hole when I thought I had been doing a jaunty two-step on the road to spiritual completion and peace. We all hit speed-bumps, but sometimes I feel like someone has laid out a trip wire. And thumb tacks.
Yes, I know, the straight path is bumpy and uphill. It’s supposed to be that way. The easy path is the wrong one. It’s the one with the smooth, fluid, downhill descent into the pleasure of distraction. I could read books all day, I could numb reality with non-stop nonsense, I could fall face-first into the gooey decadence of self-indulgence and then I wouldn’t have to think about anything that stressed me out, because I wouldn’t have to *think*. And if I didn’t think, I wouldn’t worry.
It would seem that I worry a lot. I worry about Khalid, his future, his teeth, that funny rash on his back, whether his pants are too tight, his shoes too small, his hair too long... And Iman- SubhanAllah- I spend hours worrying about her, but not as a mutually exclusive activity. I worry about her while doing other things- like when brushing her hair- how can I teach her to do hijab with passion and eagerness and the certainty that you can only have when the decision comes from both the mind and the heart? Will she be intelligent? Will she be a compassionate person? If she’s not, how can I teach her? Will she pray? Will she resent me for trying to make her?
And then I worry about random people. I only have to step into the waiting room of my doctor’s office to have my mind suddenly awash with hopelessness- all these people waiting around me are worried too, they all need help, they all have something wrong, some things major, some things minor, all of them painful, many of them debilitating. Will they find purpose through their trials? Or will they think they were ok until they hit a speed bump, stepped on a thumb tack and then fell face first into a pot hole, where they then rolled over and found me laying next to them?
On a side-note, the view from the pot hole can be amazing. If you just turn over, you can see the stars. But maybe this isn’t the side-note, maybe this is the whole point. Maybe I lose track of the destination while plodding along, staring at nothing but my feet. Maybe I need to get knocked to the ground so I can turn to the sky. I don’t know if this is entirely true, but I do know that I am never closer to Allah than I am when in pain, in fear, and in need. And in the closeness is a sweetness that you can’t find anywhere else, and that closeness is the direct result of desperation.
I know I am suppose to stand up, thank Allah for the lesson, and keep on climbing, but sometimes I feel like my legs are giving out on me, or that there’s no way I’ll ever make it to the top. I lose hope, though Alhamdulillah, I have yet to lose purpose.
Correction: I refuse to lose purpose. I will not lose purpose. Even if I’m laying in the dirt without the will to get up again, I will still know why I’m there and what direction I’m going to go in once I can find my feet. I need to remember, and God, please help me remember, that if fate gives me a black eye it’s because Allah ordered it. And there is good in it, provided I am willing to see it and that I am humble enough to admit that I deserved it, and Lord knows I have enough sins to warrant some expiation. God give me the strength to admit that Allah knows best, and that losing hope in anything good ever lasting for too long is losing hope in Allah’s Mercy, His divine will, and His greater purpose in all things.
I can’t blame anyone but myself, even though sometimes my fits of hopelessness feel almost out of my control. One minute I’m ok, next minute I’m thinking about how hard all the day-laborers and construction workers have it, how they don’t see their families for years at a time and earn less money a year than most people earn in a month. And I’m thinking that it’s just not fair.
Aha! I lose hope because it’s not fair. To them. Or to me.
Oh boy. I didn’t know my spiritual angst was still a teenager. I bet if my discord had tiny feet, it would be stomping them right now. I’m pretty sure I haven’t whined ‘It’s not fair!’ since I was a baby-faced teenager arguing over how my brother got to stay out late on the weekends but I always had to be home before dinner. At some point I grew up and learned things like:
God is just, but people can be cruel and small
This world is just a big board game with live pieces
Allah will even out all the imbalances on the Day of Judgment, so all ‘unfairness’ is just temporary
Setbacks, handicaps, physical flaws, mental deficiencies are a function of the hand you are dealt in a game we all play. And no one has all the aces anyway
And I also learned things like:
Allah has promised to not test anyone more than they can bear
All pain, worry, illness, stress, etc- when handled with patience and faith, simply erase previous sins in addition to make you stronger
Allah has promised refuge to those who seek refuge in Him
And if you go to Him walking, He comes to you at speed
So now I need to add some new lessons. And it may be a statement of the obvious, but I think it helps round off the previous lessons nicely. Here it is:
A heart so torn will bleed, and bleeding so congeals That a darkened outer covering will block the touch that heals A heart then stripped will bleed, and with bleeding fingers I Begin to mend again a heart that otherwise would die Because Allah has set no limit on how often I be broken And no promise, no oath, has yet to me been spoken To guarantee that strands of pain, twisted to a filament Won’t lacerate the tender heart around which they are bent But this guarantee, this oath, clearly has been made: My Guardian Lord has promised me gardens in the shade And promised me no burden greater than I may bear So with this thread of hope, I make my small repairs For a heart so torn will bleed, but mended so, no longer And the wounds that made me bleed, only make me stronger.
pimeeble –noun the edible, juicy, collective fruit of a tropical, bromeliaceous plant, Ananas comosus, that develops from a spike or head of flowers and is surmounted by a crown of leaves.
pima bubba –noun a paste made from ground roasted peanuts, used as a spread or in cookery.
escameeble –noun Also called moving staircase, moving stairway. a continuously moving stairway on an endless loop for carrying passengers up or down.
chawee (used interjectionally as a conventional apology or expression of regret): Chawee, you're misinformed. Did I bump you? Chawee.
kan-tee -verb to detach with or as if with a sharp-edged instrument; separate from the main body; lop off: to kan-tee a slice from a loaf of bread.
much-mum-mum –noun 1.a sweetened paste or confection made from the mucilaginous root of the marsh mallow. 2.a similar confection, usually soft and spongy, made from gum arabic or gelatin, sugar, corn syrup, and flavoring.
ocatiga -noun a polygon having eight angles and eight sides.
yego- adjective a color like that of egg yolk, ripe lemons, etc.; the primary color between green and orange in the visible spectrum, an effect of light with a wavelength between 570 and 590 nm.
sebabeen -noun a cardinal number, 10 plus 7.
kwi -noun also called Chinese gooseberry. the egg-sized, edible berry of the Chinese gooseberry, having fuzzy brownish skin and slightly tart green flesh.
What elephant in the room? I don't see any elephant.
So HF and I are hoping to move to Dubai soon, InshaAllah. Not only because our current house features four adults, two children, and only one bathroom, but because driving 120 miles before lunch time to get to Khalid's therapy center and back is taking its toll on me. And I don't mean Salik. Aching knee, aching back, steadily increasing inclination to road-rage- last week I actually passed someone in the fast lane by screaming past them on the hard shoulder. And I'm not an aggressive person, but I am quickly turning into a very frustrated driver as well as a very frazzled Momma.
And then there's the race to try to cram every possible errand into the limited amount of hours in town, because if you've driven sixty miles into the city you better make the most of it, and if you go grocery shopping you have to time it just right so that the chicken spends the least amount of time chickenly possible in the sauna of the car's trunk, thus minimizing the risk of giving everyone salmonella for dinner. But you also need to go look for a laminator, which is on the other side of town, so if you want to buy chicken, you should just buy it first so that you don't have to double back, but again, that means letting it stew in the trunk with the rest of the groceries, and the weather's cooling down, but it's still 100+ in the shade and poached eggs are nice but not a whole dozen of them. And if you have a physiotherapy appointment, then no errands are possible because physio starts at exactly the same time as Khalid's therapy, and you're always ten minutes late for it, and then you finish with just forty minutes before it's time to pick Khalid up again, and that's barely enough time to go to the grocery store let alone park and buy chicken, so there's no point in trying so you might as well just drive back to the center and wait for him to get out. And you can't really go shopping afterwards, because he is so tired that he's a three and a half year old wreck- crying because he doesn't want to go into the mall, screaming because he doesn't want to be in the cart, throwing groceries out of cart and kicking you as you try to push your way to the frozen foods aisle, wondering whether this whole eating thing isn't really overrated, and if chickens can fly, why can't they just be given directions to Abu Dhabi?
And in the spirit of ongoing medical misadventures, my Ramadan was punctuated with two trips to the ER for what turned out to be severe gastritis from a H. Pylori infection, and I missed five fasts being unable to eat and needing to take a slew of medication to help eradicate the invaders. And then there was Khalid's dental surgery- he's had four of his front teeth removed, about ten fillings, and two silver crowns installed, all under general anesthesia, for which he spent three and a half hours in surgery and eight hours in the hospital with. Alhamdulillah, it went well- he did fight the anesthetist, but his tantrum was gassed out in about ten seconds. When he woke up, he vomited blood, fought me blindly without knowing what was going on, pulled on his canula until we took it out, and then passed out again. He woke up a few minutes later and did the same, and then slept for a few hours, then drank some apple juice slowly and groggily, and then fell asleep again. We headed home at about 8 pm. And of course, he vomited in the car a few times, but Alhamdulillah it was just the apple juice- no more blood. We're waiting for his new teeth to be ready- and we're going to make another visit to the dentist for them to be cemented to his molars, and his four-tooth bridge will, InshaAllah, remain until his permanent teeth come in.
*taps fingers on keyboard*
Ok, I'm trying to write a nice, comprehensive update but I really have something else on my mind. I had a lovely time hanging out with two friends this evening, that is, until one of them asked me about Khalid's autism. It had been fun up until that point, and once she brought the topic up, I wanted to leave. I'm not comfortable talking about it. Talking about autism in general isn't that hard, it's Khalid's autism that presents a problem. I don't want to have to explain why I don't think it had anything to do with vaccines, how he had been slow and strange and distant from the very beginning, and how there are doctors and scam artists out there whose full-time job it is to take advantage of my desperation and sell me Miracle Cure Number #43, and how hard I have to work to not seek out and inflict bodily harm on people who put autistic toddlers on anti-psychotics. She asked me, as many other people have asked me, when I first realized Khalid was autistic. I don't think there was any shocking epiphany- only the dawning of a very unpleasant truth- of milestones delayed, even entirely missed, and worrying behaviors and repeated visits to pediatricians, of finally getting him assessed by a pediatric therapy team, and then a clinical psychologist, etc
But like I said, there was no instantaneous epiphany, only the heart-breaking realization that my foray into motherhood had been a nearly complete failure- that at the age of two and half, my son didn't talk, play, feed himself, respond to his name, seek affection, or handle disappointment or tiredness well. Also, he banged his head against the floor and kicked walls and started screaming if anyone laughed in his vicinity.
And I can talk about Khalid's autism here, because I'm sharing non-spoken thoughts with a word processing software. I'm not talking to anyone about this, I'm just thinking on paper. But I have a hard time talking about this, and it's always hard to hold myself together- to be informative and cheerful instead of depressed and terrified for my son's future. And then there are the well-meaning but infuriating questions like- have you tried making dua? I realize that people are simply offering what they feel as helpful solutions, but I am gobsmacked, utterly gobsmacked, that they would think that I haven't prayed, cried, pleaded, begged, and petitioned God with insane love and desperation for my son to be healed/cured/enabled to lead a normal life after I die, and dear Lord, please let me live long enough to see my children become independent. I have gone through some crazy things in my life, but nothing has tried my faith like this and forced me to have faith, really, to have faith that Allah does nothing without reason, gives no one a burden greater than they can bear, will reward me for my patience, and will take care of Khalid the same way He takes care of all of His creations. It's easy to slip up- not in the "Why Me?" sense, but "Why Khalid?"and "Why Autism?" And I must remind myself that Khalid is my test, and autism is Khalid's test. And it's just a test. And after it's all over, and the believers and the righteous are finally in Jannah, it will be asked of them whether they had ever suffered in this life. And they will swear that they never had, because the suffering we feel in this life is so minute, and so brief, compared to the reward and the contentment and peace and the perfection and resolution of Jannah. I desperately hope I'm included in that group, and I desperately hope that Khalid is as well.
HF says that I blame myself too much, that I blame myself for everything that goes wrong. He may be right, but I think all mothers consider themselves responsible for their children's welfare. Yes, I feel like Khalid's autism is my failure. No, it's not logical. No, telling me it's not my fault doesn't make me feel magically better. Yes, I know I can't cause autism. No, I don't care if you think I'm special-needs parent superhero. It's BS. I'm barely coping, I'm stressed out, I'm exhausted, and I'm scared of what the world will inflict upon my son when I can no longer protect him from it.
What's the moral of this story? Well, I guess if you are one of the many lovely, amazing, indispensable friends that I have who read this blog and may have asked me recently about Khalid's autism, please don't be offended. I have a hard time socializing with people, because going places with Khalid must be tightly managed, closely watched, and minutely scheduled to prevent meltdowns, but when I finally do get a chance to get out of the house without Khalid or Iman with me, please let me talk about nonsense. And please don't ask me about Khalid's autism.
It's a bit frustrating, but at the same time, still wonderful to finally hear what Khalid is thinking. He doesn't want milk, he wants Joo. (juice)
He wants the computer On! but his shirt Off! and he emerged from therapy this afternoon without a one. The nice therapist packed it in his lunchbox for us.
We got him dressed this morning, and within minutes he came back to me and took my hand and said Off! Shoes! So we took them off. Then he whined and said no no nooo! And so I took the socks off too. And then he was happy.
He wanders around the house calling out Ruuuuuuth! because he's not sure where she's gone. Ruth is working with another family, and Cindy, who has been us for two weeks now, is patiently teaching Khalid to say her name instead. ('Indy!)
Some of Khalid's vocabulary can be a little difficult to translate though. Kim is milk, buhjo is puzzle, and tay-tow is lay down.
And then there are the words that are clear enough, but adorably confusing. Like SheeEEEep. According to Word World,SheeEEEeep? is what you call out when you are looking for someone. Like your mother. You knock on the bathroom door, and you call out 'SheeEEep?' and your momma says 'Yes Khalid, I'm in here.' It also works in the kitchen.
SheeEEep? (Yes, Khalid. I'm in the kitchen.)
The best way to get Khalid talking is to entice him with what, in ABA terms, we call a reinforcer. In the real word, we call this bribery. :) Today, I got Khalid to jump through verbal hoops for some peeta-butta. Yep, the kid loves his peanut butter.
He knows the words blow and blue, but will sometimes confuse them. Last month his therapist asked him to repeat the name of the colored card he was holding. Khalid paused a second, leaned forward, and then blew on it very gently. Blow, blue- same difference, right? And he also blows on his drink because that's what grownups do. But then he also tried to blow on the surface of the water in the toilet, and I'm pretty sure he's never seen us do that.
Khalid's requests are all still one-worded, unless they involve the word No, in which case they can be up to six words, all of them the same and all of them all mashed together- No no no no no no nooooo! But still, Alhamdulillah, these are amazing and exciting times. :)
Something amazing has happened almost every day this week, and I need to blog about it before I forget and lose the utter beauty and wonder of it all-
Khalid is talking.
If someone leaves a room, he says Bye-Bye. If he wants food, he opens the fridge and says Eat. When he wants a drink, he announces 'Juice!' until he gets some. He woke Ruth up the other day by poking her and saying "On!" and two days ago, when Khalid wasn't very keen on the beef stir-fry we had for lunch, he turned his head and very clearly said "No!"
All of this progress is just since the May 26th post, The Sweetest ROI. It's almost like Khalid has had his Hellen Keller moment, and now that he understands what words are for, he's using them whenever he can. He knocks on the door and says "Open!"and when someone honked in traffic the other day, Khalid answered with "Beep Beep!"
Yesterday, he walked into the kitchen and loudly called out Sheeeeeeep! He's copying words he hears in WordWorld. And that's not even the best part. Today, Ruth and the kids went one way in the mall while I went to the other to buy groceries. After I had checked out, I pulled my phone out to call Ruth and the kids back, but before I could dial the number, I heard a distant and chirpy little voice call out Mamaa! I turned around incredulously, and there, a few shops down, was Khalid, running gleefully in my direction. He's never called me before. And now, he called out to me and ran into my arms.
Alhamdulillah, Alhamdulillah, Alhamdulillah.
And later today, during the long drive back home, Ruth had been tickling Khalid by saying 'Buzzzzz!' and then poking him in the stomach. We call this electric fingers. Well, this same evening, Khalid walked up to me and poked his fingers into my stomach and shouted Buzz! looking at me with delighted anticipation. It took him two times to get the message across (Buzz, Buzz!!) but onceI got it, we had a hysterical laugh and I let him tickle me.
He tickled me.
And then he ran off to go bounce on his bed, and I IM'ed my sister, called my husband, and danced around the house out of joy. And I'm still walking on air. It's midnight right now, but if I could call anyone else I would. But I can't, so I'm blogging about it instead because I want to remember this forever and share it with everyone within earshot. Khalid tickled me!!!
Six months ago, Khalid was non-verbal, aversive to being cuddled, almost impossible to interact with, threw tantrums constantly and was physically aggressive to the point that I used to keep him at arm's length- literally. If Khalid ran up to me then, it was because he was going to scratch or pinch or hit me, so before he got there, I redirected him and moved away. He kicked doors and cabinets and banged his head against walls and mirrors and the floor. He would cry so hard he'd get a nose bleed, wake up in the night screaming, and was so in his own world that it was hard to believe he wasn't deaf. That, in case I've never spelled it out before, is the tip of the autism iceberg.
It may be false hope, or euphoria from the electric fingers talking, but this is the first time that I have an image in my mind of Khalid's future as a normal, independent, young man- going to school, getting a degree, having friends, holding a job, getting married... Compare this to the image I've been trying to block out for months- Khalid needing constant care, feeding, diapering- even into adulthood. And I don't want to talk about how it feels, as a parent, to wonder what will happen to your special needs child after you die. The world is a cruel place. They're only special to you. To everyone else, they're just freaks, and it's easier to forget about them than to care for them.
But that's depressing, and right now, I want to luxuriate in this wonder and absolute joy. And while I can't say I've reached a point where I'm happy that Khalid has autism, I am definitely at a point where I understand that if Khalid never had autism, then I would never know this kind of happiness. I would never have had to develop such patience, or experience how rewarding it is to see progress in a labor of love.
Fa inna ma'al usri yusraa Inna ma'al usri yusraa.
Therefore, after hardship will always come ease. Verily, after hardship will always come ease.
Khalid and I have entered a slideshow about Autism into powerpoint competition on Slideshare.net. The judges will only view the presentations with the most votes, so basically- you could have an award-winning presentation, but if no one votes for it, it's not even in the running.
So yes, we need votes, and we need your mother's votes, and your sister's votes, and your uncle-in-law's votes, so if you wanna support Autism awareness, or if you would like to see blurry photos of Khalid and I in a slideshow, please watch our entry! And share the link with your uncle-in-law!
Khalid said Momma. And then he said hug. And then I gave him the squeeziest of all Momma Squeezes and asked him to say it again. And he did. And then I hugged him again and sent him on his merry way to play with a puzzle, because if you hug him too much he just gets irritated. But still. He called me Momma. And he hugged me. And because I've waited three years to be called Momma, I think I'm entitled to some tears of joy.
As everyone and their mother must know already, my son Khalid is autistic, and Alhamdulillah, with treatment we've seen really amazing progress. He has started to talk- he has five or six words in his vocabulary now and we are overjoyed. Alhamdulillah, we've been able to pay for this therapy he needs, but there are eight families here who can't afford to have their children treated.
The Red Crescent of the UAE and the Child Early Intervention Medical Center are hosting a walk to raise funds for them. I am posting the invite here, and would be grateful if people could attend or spread the word to anyone and everyone in the UAE.
The walk is at Zaabeel Park, at 5pm, Thursday the 30th of April. There will be fun activities for children and the chance to meet and learn from people whose lives are affected by Autism.
I never thought I'd be so happy to report that my son will just NOT stop babbling. Although his vocabulary has yet to cross the ten-word mark, he has begun to mimic sounds and start conversations with people other than me- the most amusing of which is generally Iman. Khalid will grin excitedly at her, and say 'Okay?' and Iman will beam and reply 'Hat!' Of course, it's much more than just 'hat,' to Iman, it's a prolonged, ecstatic exclamation of haaaaAAAAAAt! in a high-pitched squeak bordering on baby giddiness.
Yes, Iman says hat, and she says it loud, and she says it clear, and it is as meaningful to her as 'Okay' is to Khalid. They had a three-way conversation yesterday with the Imam of the masjid during Isha prayer. It went like this.
Imam: (over loud speaker) Allahu Akbar
Khalid: Okay?
Iman: Haaaaaaaat!
Imam: Sami'Allahu liman Hamida
Khalid: Okay!
Iman: haaaaAAAAAAAAAAT!
Imam: Allu Akbar
Iman: HAAAAAAT! HAAAAAAAAAAAAT!
Khalid: Okay!
Iman: haaaaaAAAAAAAAT!
Of course, right after the jamaat finished, someone came over and banged angrily onto the divider between the men's and women's sections, and frankly speaking, I was seriously offended. Yeah, my kids were making noise, but children make noise in the masjid all the time. I was still praying though, and so my rugrats continued to fill the large, echoing dome of the masjid with hats and okays until the Imam came and knocked on the door (gently) of the women's section and asked Ruth (who opened the door) to please bring the children outside.
When I finished praying I walked out and outside the women's side entrance, saw HF talking to two men, presumably the Imam and one other local. Khalid, upon seeing HF, ran and flung himself into his arms and unleashed a series of happy Okays! According to HF, as soon as Khalid did this, both the men changed their stances from stern to understanding. It's easier to be mad about someone's bratty kids when 1. you can't see them and 2. they're not autistic.
Ruth and the kids & I waited in the car while HF talked with the Imam & Co for about ten minutes. Alhamdulillah, this is one wonderful thing about HF, if a situation gets tense, he doesn't get mad, he gets charming. I told this to Ruth, and she laughed. "You'll see," I said, "By the time he finishes talking to them he'll have made some new friends."
And of course, he had. After an explanation of autism and Khalid's understanding (or the lack thereof) the Imam invited him over for tea repeatedly and was disappointed when HF politely deferred. The second man then plied HF for his life story and then asked him to come over and fix his computer. Numbers were exchanged. We went back home.
Ruth took the kids in and threw them into their respective tubs, and then I had a good cry about things with HF outside. True, the matter isn't black and white- kids need to be taught how to behave in a place of worship, adults need to manage their problems more tactfully than by banging on the walls of the woman's section- but it all boiled down to this- I'm not allowed to complain about having an autistic child, so neither is anyone else.
I went to the salon last week for a quick trim, and Khalid, misunderstanding the situation and thinking it was his head on the chopping block, went into red-alert tantrum mode and ended up crammed under a chair while kicking the wall and screaming. Calming him down failed, and so I told the woman to just finish as soon as possible so I could pay and take Khalid home.
The sweet receptionist tried (to no avail) to distract Khalid- to offer him sweets, to engage him while he was busy screaming. This lasted around ten minutes. The other ladies stared disapprovingly at me while Khalid raged and the hairdresser snipped. When it was done and I had paid, I collected Khalid from his well-kicked corner, and said to one of the other hairdressers, "Sorry about the noise, he thought he was going to have his hair cut, and he doesn't understand."
They stared blankly and I told them he was autistic. They didn't know what that meant, I told them he was mentally around 1 years old and had little idea what was going on. Ooooooh....now they got it, he had some problem with his brain? They asked polite nervous questions and the air changed from frigid to embarrassed.
I don't know whether there's a crash course somewhere for being a 'special needs mom,' but I think I'm doing as well I can with the amount of training I got. :p I adore Khalid, he is the most beautiful, crazy, energetic, loving little man, and that other people don't understand him is not his fault. Nor is it theirs, but I'm not about to start apologizing for him being the way he is. Allah allows everything to happen for a reason, and even if it's just to teach everyone around him a little more patience, that's a good enough reason for me.
This is how it's used. Locate a random item. Find your mother. Hand it to her. Grin expectantly. Mom sez Thank You! and Khalid sez OKAY! and wanders off to find another item.
(Last week I ended up with a pile of shoes in my arms, six or seven pairs deep, each one of which was delivered to me, individually, with an expectant smile and Khalid's squeaky little Okay!)
Khalid has started to copy words pretty consistently in therapy- like Up, and On, and Cup, but the only word he's using of his own volition (and within his own personal context) is Okay!
Alhamdulillah, Alhamdulillah, Alhamdulillah.
Also, there's another use for the word 'Okay!' Khalid and I, during our hour-long drive to therapy in the morning, have conversations that go like this:
Khalid (watching me expectantly from his car seat): Ah, ah, Okay!
Me: Okay!
(Khalid beams and wait a few seconds while basking in the glow of successful conversation. Then he looks to me again and says...)
Khalid: Ah, ah- Okay?
Me: Okay!
And we continue like this, through Abu Dhabi territory, past Jebel Ali, cruising into Dubai, zipping through our morning commute and sharing deep and meaningful and beautiful words like Okay.
This must be what it's like when your kid graduates from med school
My little boy, my handsome little son, is painting. A blue square. With washable paints, with slow, deliberate jabs at the paper, and his little tongue poking out in concentration.
I. Am. So. Proud.
*gets misty eyed*
Khalid's working with one of his therapists right now. We began his ABA two weeks ago, and we now drive into Dubai four days a week for Khalid to learn things like matching colors, and stacking shapes, and how to talk (InshaAllah, one day) and also, how to paint a blue square. :)
Iman is home with Ruth, her BFF as well as our full-time Khalid-chaser. Ok, technically, she's a nurse, but she lives with us and helps me with the kids and the house and takes care of Iman while I take Khalid to therapy and keeps me company as well and compliments my cooking. I am reluctant to call Ruth the 'help' or the maid or the nanny, because there's a negative stigma attached with 1. Being the 'help' or 2. Hiring help. But that's another post for another day InshaAllah. Right now, I'm just going to sit here and beam.
I've tried to sit down and write about this several times, but I keep hitting a wall. I've only spoken about it to one or two friends. HF has informed the general rest of them, and me, I don't want to talk about it. Not because I'm embarrassed, but because I'm emotionally raw. I can touch on it briefly, clinically, lightly, and be ok. But emotionally, I'm avoiding the topic in a way you want to avoid standing beneath a dam suspiciously crisscrossed with duct-tape.
So we'll be brief, clinical, light.
Autism is a brain development disorder that Khalid has. His in-depth assessment begins on Sunday, Insha'Allah. It will take several sessions with the clinical psychologist. After that, we will begin the necessary therapies to help him learn as much as he can and bridge the verbal, social, and physical development gap between him and "normal" children.
(There's a lot of duct tape on the dam. A few post-it notes too. Some sad-looking safety pins...)
Well, at least now we know what's wrong- why nothing I've ever tried to teach Khalid has worked, why everyone and their mother seemed to be waltzing through motherhood while I stumbled, blundered, and tripped my way over "such basic things" as sleeping, talking, shape-sorting, social interaction, potty-training... Grim satisfaction can be had in knowing that hey, when all those things they said should work failed, at least it was for a reason other than my own maternal incompetence.
(It's because you spoil him) (It's because you're babying him) (It's because you're not being consistent) (It's a matter of will-power) (It's because you nursed him too long) (It's because you always picked him up when he cried) (It's because you are working when you should be paying attention to him) (It'sbasicallyyou)
__
Take Two: Well, that thread was going down the negative tubes fast, so I closed the draft and left it alone for the last week. Fast-Forward to today, Wednesday, and Khalid's assessment is done and we're waiting for the detailed report upon which the therapy outline will be based.
Khalid is, as the clinical psychologist said, "definitely autistic," which dashed my slim hopes of him somehow, someway, not really being autistic. At the same time, I felt relieved to be confirming the problem, because now we're one step closer to the solution, InshaAllah.
:)
There, I typed a smiley face, and I actually mean it. :)
The Autism therapy center we've picked is a bright, colorful, toy-crammed, series of rooms in Dubai where Khalid and I will be spending a few hours a day for therapy. I don't know how many hours yet, but the average is 20 a week. I'm looking forward to it, and can't wait to start seeing progress- I feel nervous and happy and excited at the prospect of Khalid talking, or signing, or finally communicating with us in some way.
What I'm not looking forward to though, is the daily drive from Abu Dhabi down to Dubai, which has already started to play havoc with my knee. My busticated knee is also my driving knee, so I'm scheduled to visit the orthopedic surgeon again (who is by now, a family friend) on the 19th. I think I'm supposed to get Hyalgan injected into my knee again. It's nature's WD-40, whee! It's also kept in a small refrigerator somewhere in the doc's office, and when he shoots it, cold, into my knee, it's the weirdest, inside-out kind of feeling.
Hmm, what else is up. I had a custard apple for the first time in my life today. I understand the 'custard' part, since it does have a sweet and vanilla-y flavor. The 'apple' part is still off though. In Thailand, the name for the custard apple is the same word for 'grenade,' and that would make slightly more sense, if grenades were creamy instead of explosive.
And in the continuing spirit of randomness, I met a nice employee of a -Large Bookstore Name Here- yesterday whose name was Sugar Rey. I wonder if he thinks women are always hitting on him. (Hey there, Sugar...*heart*)
Khalid has been diagnosed with autism. I can't even begin to explain how this feels. We're still in planning/coping/assessing mode. I just quit my job. Regularly, I cry myself to sleep. I can't write about this right now. I'm too busy trying to figure it out.
Abez Is... 
