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Monthly Archives: January 2014

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JazakAllahuKheiran :)

I invited myself over to a friend’s house yesterday.  Normally I invite people over to my house instead, but since we’ve been without a housekeeper for the past three weeks, I don’t think any of my friends would appreciate an afternoon in the sty with tea and- well, that’s it.  Tea.  Because I don’t have cookies and there’s nothing made for lunch.

So MayG let me invite myself over.  And she very patiently waited for me to arrive two hours late after I was delayed by urgent work.  She sent me very detailed directions to her house.

(I buckled Musfira into her seat and started driving towards her part of town.  Five minutes into the drive, I noticed some alerts on my phone.)

I needed to go north on this road, take this exit, and then look for that building with the thing on it.  I had a google map point as well, which is fantastically useful.

(I’m in a Whatsapp group called- of course- Brain Surgery News.   It’s a small family group where my sister- who is in Singapore for neurosurgery right now- shares updates about what’s going on.  There were 29 notifications.)

So I started driving and skimmed through the messages when I stopped at a traffic light.

(My sister is allergic to the materials they could have used to fix the aneurysm in her brain.)

 And then I realized I had starting driving towards the wrong city.

(The aneurysm is too wide for the second option, coiling)

So I turned around and headed the other way, but I got stuck in Deira traffic because I hadn’t accounted for the time of day.  But when does Deira NOT have traffic, really.

(The third option is to open up her brain and manually put a titanium clip on the swollen vessel.  Which is behind her left eye.  Which she may lose sight in.)

I worked my way through Deira and got myself going in the right direction.  When I was finally five minutes away from her house, I drove right past the exit.

(But losing sight in one eye is a small price to pay to keep your brain from exploding. So Alhamdulillah.)

I made a U-turn using the next exit, except it wasn’t a U-turn.  It pointed me back in the direction of home again.

(The surgery has been delayed until the doctors are sure they’ve picked the right course of action.  Owl is being tested to see whether her form of EDS- a connective tissue disorder that we both have- is the kind that makes your veins fragile.  That’ll take another week to come in.)

I made another U-turn, and got myself pointed in the right direction to make a second pass at the correct exit.

(They also need to see if she’s allergic to titanium, because again- you can’t install things in someone’s brain that their body is going to have a problem with.)

I nearly missed it again.  I swung my car into the exit ramp at the last possible moment, grateful that traffic was light and there were very little cars on the road.

(They would have to break her skull.)

I finally found the building.  Musfira and I located the entrance, pushed the button for the ‘alligator,’ went upstairs and then rang the bell for MayG’s flat.

Breakfast was lovely.  It was served the moment I arrived- at nearly noon- as all breakfasts should be.  We had eggs and toast and chicken and nutella and juice and tea and cake.  Musfira and her four year old played beautifully together, we chatted about random interesting things, and just as I finished my last piece of toast (this was the one propping all that nutella up) MayG suddenly said, “Hey, you want to paint with me?

(…)

Yeah!

MayG  printed out some Arabic calligraphy using a machine that cut the art into adhesive vinyl.  Then she painstakingly removed the excess vinyl around all… err.. most of the little fathas, dammas, kasras, and other little wiggly bits that go around Arabic script.  Then she transferred them to watercolor paper and handed me a brush.

 (She had asked me if there was anything I wanted to paint in particular.)

To say that I enjoyed the painting wouldn’t even begin to do justice to how I felt.  I felt renewed by the painting.  I felt freed by the painting- even if it was for a little while- from the non-stop worry, fear, pain, and anxiety that had pounding on my brain the entire drive down.  I dipped the brush in water, I touched it gently to a deep, uncomplicated blue.  I dabbed the thick, textured paper and watched the paper soak up varying shades depending on wet the brush was, how long the brush had already been on the paper, and how quickly I moved the brush from one place to another.

It was soothing- not only in the action of painting itself- but in reading and re-reading the words I was painting around.

(On no soul does Allah place a burden greater than it can bear. Stroke, stroke, dip.  On no soul. Stroke, stroke.  No burden greater.  Dip, dip- stroke. On no soul does Allah place a burden greater than it can bear.)

I painted for Owlie-bird, who is floating in fluorescent white medical limbo somewhere in Singapore.  The course of treatment is unclear, the risks are scary, and the waiting is hard and scary, but InshaAllah, she’ll be fine.  Allah said so.

(If she dies as a Muslim, Alhamdulillah.)

I wish I could get it to her now because I want to frame it and prop it up next to her hospital bed, not because my untrained, unstructured, and uncomplicated blue watercolor is beautiful, but because Allah’s promise is beautiful.

(If she survives and lives as a Muslim, Alhamdulillah.)

I’m pretty sure I thanked MayG three or four times before leaving.  I was hoping to convey just the right sort of thanks- one where you’re insanely grateful but not hoping to show your insanity.  I don’t know if I succeeded.  But I thanked her.

And now, I’m going to thank her again.

MayG, thank you.  Really, very very much.  For tea and cookies and company and calligraphy and paint and green masala chicken and qeema and gajar halwa and poking out all those little sticky vinyl bits with a pin.  And for listening and hearing and giving me emotional sanctuary in your beautiful home for the better part of the afternoon.

On No Soul

Thank you for making me a larger, prettier version of the same calligraphy that I painted for my sister.

Your decorations are awesome, and you are one of the most creative people that I know, MashaAllah.  I left your house feeling calmer, clearer, and less likely to miss my exits because I was crying- which is what I had been doing on the way to your house.  I was also crying while you were printing things out with your magical cutting machine, and I would also like to thank you for either not noticing or not letting on that you had noticed.

“Whosoever relieves from a believer some grief pertaining to this world, Allah will relieve from him some grief pertaining to the Hereafter.”  Hadith Source Here

May Allah bless you and forgive your sins, and return the kindness you showed me thousands of times over with His mercy towards you and your family.

May Allah relieve the distress of Muslims all over the world, wherever they are, whatever their source of distress.

Ya Allah, please bring my sister home safely.

Ameen.

Musfira’s Recipe for Homestyle Chocolate Cupcake

Ingredients:

  • 200 grams of Hersheys unsweetened cocoa powder
  • 1 cup (that’s it, one plastic cup)
  • 1 flat, dry work surface. Preferably a coffee table.
  • 20 minutes of suspicious silence.

Fill one plastic cup with as much cocoa as makes it inside.

Once your cup has been filled, dump it onto your work surface and pat the cocoa into a smooth, even coat.

Between smoothing pats, wipe cocoa generously onto your shirt, pants, face and hair.  Repeat process until Cupcake is evenly coated in chocolate.

For best results, put the cocoa powder back in the kitchen and then walk past your mother as if nothing has happened.

Caution: Rant Ahead

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

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

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

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

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

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

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

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

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

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

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

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

Am I ranting. Yes, I suppose I am.

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

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

A day.

Not a year, not a month- a day.

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

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

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

Rassa. Frassa.

-end rant-

Being two and a half is awesome

Musfira comes skipping excitedly into my room:

Musfira: Momma!  Iss somefing!

Momma: Yes dear?

Musfira: Somefing inna body went pffft!

(Musfirs grabs her bottom with both hands and grins)

Momma: Yes dear, that’s called gas.  You had gas.

Musfira: had gas?

Momma: Yes, you had gas.

Musifra: Gas inna my body?

Momma: Yes dear.

Musfira: Hehe!

Update: check

Frazzled.  That’s a great word.  I like it.  I will now use it.

I don’t have a housekeeper again.

My sister is leaving for Singapore for neurosurgery and three weeks in hospital in two days.

Work is work. Enough said.

My mother is moving apartments. That means I am helping my mother move apartments.

I have all these thoughts in my head and not enough time or mental wherewithal to extract or organize them.

So this will have to do.

Tales of Toddler Genius

The Inventor

Musfira asks Momma for a cookie.

Momma gives Musfira a cookie.

Musfira receives the cookie and folds it carefully into a tissue.

Then, she takes her tiny first and begins pounding it into crumbs.

Momma is taken aback.

“Musfira!  What are you doing to your cookie?”

Musfira is reassuring.

“Iss okay momma.  I making a puzzle. Hee you go!”

Momma accepts puzzle.

Glowing with pride, Momma eats it.

Masha’Allah 🙂

Cuteness

 

 

 

 

The Stylist

bluemarkerMusfiraAlhamdulillah, we acquired a lovely new sister in law this weekend as HF’s younger brother got married.  Family wedding preparations were a team effort, and Alhamdulillah, everyone did their part to ensure things went smoothly- even Musfira, who took the initiative to do her own hair and makeup with a pair of scissors and a blue marker.  And she did it an entire day before the party, making her not only helpful, but also forward thinking.

A proper stylist was commissioned to neaten up the asymmetrical bangs Musfira cut for herself, and I followed that with a cleansing baby-oil and rubbing alcohol facial.

The Behavioural Analyst

Musfira likes to play limit-testing games- as toddlers often do- and they follow a pretty simple format.  Momma says to do something.  Musfira refuses to do it, and she smiles and waits to see what will happen.

One of these more recent games is a jolly round of “I’m not leaving the car.”  This game takes two people to play and is usually initiated at the end of a long drive, after a long day, when Momma would much rather be bathing children and putting them to bed.  Musfira’s car seat is unbuckled.  Momma says let’s go inside.  Musfira makes a run for the back of the van- a cramped space that Momma is not a fan of climbing in to chase a wiggly and wilful toddler.

So in a recent round of the game, I unbuckled Musfira and she made a successful break for the back of the minivan.  Rather than engage in a Tom & Jerry style chase, I stood outside and said, “Musfira, it’s time to go home. You need to come out of the van now.”

In response to which, she did her best imitation of a stern face and said, “No momma.  I stay inna van.  One… Two… Three… I hit you!”

Now, I would like to make three things clear:

  1. Iman does get a count to three, but when three comes, it isn’t with a smack, it’s with a physical prompt.  If, by the count of three she’s not walking to the bath I will take her by the arm and walk her there myself.
  2. I may not be the best mother in the world, but I don’t threaten my children with “I hit you!” anymore than “I will cut you.”
  3. Musfira is a squeaky two-foot nothing and has all the authoritative presence as a rubber duck.

I was so impressed that she had made, and then used her own assumptions about what would happen when 3 came that my toughest battle was suppressing a laugh.

Besides, in accordance with the cardinal parenting rule of No-No-Prompt, the thing to do when Musfira had disregarded my instructions twice already was to climb in and just take her inside the house, not argue with a grumpy two and a half year old.

The Photographer

At the end of the valima of same said family wedding, Musfira kept trying to steal the limelight from the bride & groom’s photos by dancing on stage with no shoes and only half of her party ensemble on.  When I went and physically removed her from the stage, she wailed and pleaded, “Momma wait! I wanna photo!”

I put her down and handed her my phone with the camera open.  “Alright then.  Go take photos.”

I don’t think she quite caught the grammatical trickery that got her from the front of the camera to behind it, but it worked.  She took my phone and stood behind the other amateur photographer.  She returned with around 30 fuzzy, poorly composed pictures of the stage- with and without bride and groom- and proudly showed me her work.  Alhamdulillah.

The Dreamer

We were driving home on E311 after a long day in Ajman, and the children were riding in tired silence.  Suddenly, Musfira sat straight up in her seat and squeaked “Momma! Look!  Issa crown! Issa crown!”

“A crown? I don’t see any crown…” I scanned the traffic and tried to figure out what Musfira was getting all excited about.

“A crown! A magic crown! Iss fwying away!”

“Musfira, do you mean the light on top of that car?”

“Notta car!” she angrily insisted, “A crown! Iss going!”

I sped the car up and chased down Musfira’s magic flying crown.  I matched its speed and pointed, “Musfira, is that your magic flying crown?”

“Oooh! Iss bootiful! A crown!”

“That’s called a taxi dear.”

“A kaksi! Iss so pretty!”

SubhanAllah 🙂

Dubai Taxi

Dubai kaksi. With a magic flying crown.