Abez sez Assalamualaikum!

Category: Autism

  • Blue, Pink, or Betrayal?

    Blue, Pink, or Betrayal?

    We do not yet know the gender of the baby, but for future reference, let’s call him or her Stringbean. No HF, I am NOT calling the baby Grandpa Wilkins. Yes, I know it’s a perfectly nice handle. No, I don’t want to attach it to a baby.

    So yes, Stringbean. Khalid was my Jellybean. Iman was my Mysterybean because she evaded gender detection for almost 7 months via artful positioning and kung-fu fighting during ultrasounds. Stringbean is Stringbean because at my last ultrasound, the doctor took a look at the screen and said oh, that’s a long baby! I asked her what she meant. She said the head size was normal for the number of weeks of pregnancy, but the rest of the baby looked to be pretty long. This, she said, made sense because I was ‘tall too.’ I didn’t have the heart to tell this lovely, petite Asian OB that I’m only tall compared to lovely, petite Asian OB’s, but that’s ok. We have a long baby. We have a Stringbean. 🙂

    When I first learned that we were expecting Stringbean, I refused to admit that I was hoping for a Boybean or a Girlbean, and I held the line that I would be happy with whatever Allah gave us and that was that. I already had Khalid and Iman, Boy and Girl, Salt and Pepper, so it’s not like I needed any specific pieces to complete the matching set but the truth is, I was in denial.  I wanted a boy, and I wanted a normal one.  I felt horribly guilty about this, and when I finally confessed this to HF one tearful night, he hugged me and asked me why I felt bad about that. Hoping for a boy, I felt, was like implying that I didn’t already have a son- like Khalid was not valid as a little male human being and I was telling the Manufacturer this one’s not working right so I want a new one.

    And HF nodded and said I know, I want a boy too. And I was shocked, but it seemed less heinous coming from HF than it felt in the dark and guilty recesses of my mind, because wanting a boy has nothing to do with Khalid and everything to do with Khalid at the same time.  Wanting another son isn’t a matter of betrayal, but practicality.  Khalid is special, unique, difficult, academically advanced and socially delayed, verbally unintelligible to the uninitiated and physically confusing in his quirks and stims.

    InshaAllah, he has a future and a rizq and a place in this world because Allah has written all of these things for him and is not unfair to any of His creations. But Khalid is going to need some help, and one day, HF and I are going to die. Iman will be married, and while I have no doubt that she will always share a special bond with Khalid, she may not always be in a position to support or help him when he needs it most. Or rather, let’s put it this way: Iman will have an easier time looking out for Khalid if she’s not the only one. Adding another Salt shaker to the set means that Khalid has a matching set of siblings to count on after his matching set of parents- Father and Mother, Provider and Nurturer, Protector and Soother, are gone.

    The pregnancy is starting to show, and other autism mothers I meet look shocked when they hear we’re expecting our third child. “You’re so brave,” one mother told me last week, whose son was just diagnosed a month ago and who has lost seven kilos from the stress. “We want to have another baby but we are so scared. We don’t want him to be left alone when we die, but what if we have another child with autism?”

    I told her, frankly speaking, that when I found out I was expecting Iman, I cried and it was NOT out of happiness. It was out of frustration and hopelessness and the feeling of failure that I felt from raising a little boy who didn’t even respond to his own name. This was before Khalid was diagnosed, we just knew that Khalid was different and difficult, and I felt like I could barely handle him, so how on earth would I cope with another one? SubhanAllah, to say the least, Iman is a blessing. When most parents of autistic children pay over 300 dirhams an hour for their child to take part in a specially structured ‘play group session’ with neurotypical children, Khalid lives with one. Iman was his first play-mate, his first enemy and the first peer he had ‘conversations‘ with. Iman taught Khalid how to pull hair, pinch, kick and run- and also, how to defend himself and rise to the defense of others.

    Iman has been a challenge, a laugh-riot, a pretty pink princess crowned with ferocity, slathered in resilience, and lovingly adorned with sweet little kisses and precise deadly pinches. We will never need a TV- watching Khalid and Iman simply coexist is more hilarious, dramatic, entertaining, riveting, frustrating, and awe-inspiring than Comedy Central, Discovery, NatGeo, and Hallmark all rolled into one.

    And now, InshaAllah, there’s going to be three of them. And what if the next child has autism? Well, the good news is, we already have a full-time therapist. And program materials. And a great case manager and a better idea of which nurseries, schools, play-areas, toys, people, malls, shopping-carts, are best for children with autism. So SubhanAllah, we’re better prepared now for an autistic child than we ever were with Khalid. So if Allah decides to grant us another special little child with very special needs, than I am grateful that we’ve been prepared this time. 🙂

    And what if the next child is a girl?  Then I would like her to be named Khawla, after the amazing Muslim heroine that would have been completely unknown to me were it not for a cross-posting on Badass of the Week (actual site name, pardon my French).  Khawla travelled with the army of Khalid bin Waleed, ironically enough, accompanied by her brother, a commander and famous warrior-poet named Derar.  She would tend the wounded and sick, but one day, would move beyond that role when her brother went down in battle and was captured by Byzantine soldiers.  Khawla, seeing him taken from a distance, dropped what she was doing, covered her face with a strip of black cloth and her body in a shawl, and rode off, sword in hand, to go rescue him.

    “Khalid watched a knight, in black attire, with a big green shawl wrapped around his waist and covering his bust. That knight broke through the Roman ranks as an arrow. Khalid and the others followed him and joined battle, while the leader was wondering about the identity of the unknown knight.”

    Other soldiers in the battle saw her fighting with such ferocity that they thought her to be Khalid Bin Waleed himself, and when Khalid Bin Waleed appeared with a number of knights to reinforce Khawla, one knight turned to him and said “Who is that knight? By God, he has no regard for his safety!”

    Eventually the battle was won, but her brother was nowhere to be seen. Khalid Bin Waleed demanded that the unknown knight reveal his identity, and when Khawla was discovered to be the sister of Derar, Khalid ordered his army to chase the fleeing Roman Army with Khawla leading the attack.

    I won’t give the entire and seriously awesome story away, you can read the entire (and profanity-free) article here and I am not linking the place where I originally read it, due to the use of four-letter words used gratuitously, albeit, in admiration of Khawla.  But I digress.

    It is a mercy, blessing, and gift from Allah that when we see things through the lens of trust and Taqwa that we have the opportunity to relax.  All good is in Allah’s hands.  All difficulty is a trial through which we may become stronger.  All ease is a blessing and there is no hopelessness for those who trust unfailingly in His will.  If our next child is a healthy, neurotypical boy, Alhamdulillah.  If our next child is a healthy, neurotypical girl, Alhamdulillah.  And if our next child is autistic, regardless of the gender, Alhamdulillah.

    I am praying for a healthy boy, because Allah tells us to call upon Him and ask of Him, even for a shoelace.  He is, after all, the Owner of every treasure, known and unknown, seen and unseen, in the universe and beyond the known universe.  Hoping for a healthy boy and then not asking the One who can provide one would be a gross oversight on my behalf.  But I am also praying that Allah grant me a child who inherits Jannah, and if that means a person who is never questioned because they can never tell the difference between right and wrong, then that too is a blessing.

    Alhamdulillah. 🙂

  • Apples versus oranges, lady.

    The Ikea in Festival Center (Dubai) has a lovely little play area for kids, and Alhamdulillah, Khalid is able to play inside by himself as long as there is someone on the other side of the glass watching in case of the unexpected bathroom emergency or melt-down. Alhamdulillah, neither happen very often.

    It’s a neat little place, with a slide and a large ball room and some tables and chairs with paper and crayons. The only bit of poor planning in there is a water cooler at toddler level with bright, easy to pull levers and only the tiny, standard drip-tray underneath- sorely inadequate for the number of kids who come, play, pull, and cause the occasional puddle. I don’t know whether the other children are less interested in water or more compliant with the attendants, but the water cooler isn’t so big an issue that they’ve had to move it or anything. But then, there’s Khalid.

    One of Khalid’s latest fascinations is with pouring. He’s been in to pouring for a few months now, and it began with us losing five or six full pumps of liquid hand-soap in one week. Khalid would open the lid and pour the soap down the drain, then he would fill the container with water and pour that down the drain too. We lost a few economy-sized bottles of baby shampoo that way. Sometimes he would find water bottles and pour those down the drain as well, and then transfer the water from one container to the other, just to watch it pour. Needless to say, we no longer own or use liquid hand-soap. Bar soap is safer because it lacks a certain… flow.

    So Khalid likes liquid, he likes watching it pour, he likes filling and emptying things, and he likes the water cooler at Ikea. Apparently he likes filling (but not drinking or pouring) glasses of water and lining them on up the shelf nearby, and apparently, the lady on duty last Tuesday had gotten a little annoyed. When I came to pick Khalid up, I saw him filling himself a glass of water, and I told the attendant that she might want to move him away from the cooler, since I was on the other side of the gate and couldn’t come in. She turned around, and from where she stood, over ten feet away, called out in a sing-songy voice, “Baby! I told you, don’t touch the water cooler!”

    “His name is Khalid. He’s not going to respond to baby.”

    “Okay, Khalid! Come here!” she sang out again.

    Khalid, who heard his name and probably my voice as well, turned and ran excitedly towards me, knowing it was time to come home. When he reached the gate, the lady had to remove his numbered vest (that’s how they keep track of the kids) and retrieve his shoes and backpack. In the middle of this, she decided to kneel down, point her finger in Khalid’s face, and scold him.

    “If mommy tells me you have been a bad boy I will not let you back in here.”

    I waited to see what Khalid would do. No reaction. He was too excited about coming out. But then she said it again, more loudly and in his face, “You have to be a good boy! Otherwise I will not let you come back!”

    That got Khalid’s attention. Khalid looked at her, saw the finger in his face, and pinched her. Hard. She stood up, rubbed her stomach where he had pinched her, and handed me Khalid’s shoes and backpack. As I signed Khalid out, she asked, “Ma’am, is this your only child?”

    I thought she was asking if Khalid was my only child in the play area, so I said yes.

    “Oh,” she nodded. “No wonder he is so spoiled.”

    I think if this had been last year, and I had been more raw and less experienced, then I would have been seething. If this had been two years ago, I would have been in tears. But this was 2010, and I’ve been an ‘autism mom’ for long enough so that I don’t see peoples’ ignorance as insensitivity, or their criticism of Khalid’s behavior as a scathing judgment of my parenting skills or the lack thereof. As it is, I was warily amused. And, I felt a sorry for her. Khalid does pinch really hard.

    “He’s not spoiled actually, he’s autistic. You know autism?”

    She looked blank. And then looked at Khalid.

    “He didn’t understand what you were saying.”

    And then she looked really, really embarrassed.

    “But, but he looks so normal. He looks ok!”

    “Most children with autism look completely normal.”

    Khalid was holding my hand now, and as he bounced in place, his dog tags- engraved with his name, nationality, contact info, and AUTISM in capital letters- jingled a happy tune.

    “I’m sorry, I didn’t know…”

    “It’s ok,” I said. And really, it was.

    I think the next time I go down I’ll say hi and strike up a conversation. She could use some pointers on addressing children directly and in an authoritative tone of voice. All kids, even the autistic ones and especially the normal ones, can tell who means business just by the tone of voice used. And it’s not about intimidating the kids into good behavior, but if your ‘don’t do that’ voice can be mistaken for a brief rendition of ‘twinkle twinkle little star,’ then there’s a good chance that you’re not getting much compliance out of any of them.

  • The Warmest Fuzzies Ever 🙂

    Very typical of a person with autism, Khalid is much better able to understand written and visual instructions than he is spoken instructions, and so when it comes to difficult transition times, we use written instruction to help Khalid prepare for what’s coming up. Usually, his written schedule for the evening looks like this:

    1. Dinner
    2. Bath Time
    3. Read Stories with Baba
    4. Sleep with Baba

    Today, our evening schedule was a little different, because HF had to go pick up some friends who were only in town for two more days and without transportation. Because Baba was unavailable for bed-time, and Joy would be putting Khalid to bed (Yes, she’s back!) the written schedule said only this:

    1. Video
    2. Sleep

    So Khalid found a pen and made some corrections.

    With ‘bAbA’. SubhanAllah. 🙂

  • And now that the cat’s out of the bag…

    And now that the cat’s out of the bag…

    Phew! I can finally blog about what’s been on my mind!

    Ok, what’s up with the Nuchal Translucency screening? And why did my doctor ask me if I wanted one? I asked her what it was for, and she said that measuring the Nuchal fold in a developing fetus could help determine whether or not your baby has a chromosomal abnormality.

    *awkward silence*

    And then what?

    Well, if it’s positive, you can get further testing done to determine whether your baby has Down’s Syndrome.

    And then?

    Well, then about 90% of fetuses with Down’s Syndrome are aborted.

    You know, they’re working on a prenatal screening for autism. So that potentially, individuals who have autistic traits can be identified before they’re born.

    I wonder how high the abortion rate would be, and I think of how amazing, how silly, how sweet, how challenging and fulfilling it is to have Khalid as my son, and how awful it is that parents should choose to kill their children out of… what, fear? Laziness? A murderous need for the neurotypical? An overpowering revulsion to special children? If both of my children were normal then perhaps someone who supported prenatal screening (and subsequent abortion) could tell me to get off my high horse and that I shouldn’t judge a man until I’ve walked a mile in his moccasins, etcetera etcetera. But I don’t have a horse and I know for a fact that Allah does not test anyone more than they can bear. I’ve walked a few miles in special needs moccasins, thank you very much, and I think parents who kill their children out of fear should have their moccasins removed and thrown at them.

    And do not kill your children for fear of poverty. We provide for them and for you. Indeed, their killing is ever a great sin.  The Qur’an, Surah Al-Isra, 31

    Is fear of poverty the same thing as whatever it is people are fearing when they abort babies with Down’s Syndrome?  I’m not sure what exactly it is they’re afraid of- fear that their child will be made fun of?  So let’s screen for babies with really big ears.  Fear that their child won’t be able to hold a job?  Let’s screen for incompetency too then.  Oh, and blindness!  Don’t forget blindness!  Maybe it’s fear that their child will never lead a ‘normal’ life?  Well, I don’t know if they can develop a prenatal test for turning into an alcoholic or drug addict or someone with bipolar disorder, and I think humanity has yet to apply a standard for what a ‘normal’ life is, but let’s run with this, shall we?

    Let’s develop a prenatal test to screen for any and all conditions that cause children to face challenges throughout their lives while causing their parents to sweat blood and bleed tears to provide medical care, education, and adequate opportunities for their children in a world that doesn’t give a hoot.

    And then, let’s abort the entire human race.

    Because every child is hard work.  Every child costs money.  Every child is in danger of ‘not leading a normal life’ and no child, no matter how thick their Nuchal fold is or how low their amniotic testosterone rate is, comes with a guarantee for an easy upbringing, a bright future, and a normal life.  Being normal isn’t a guarantee of all things bright and beautiful  any more than being ‘abnormal’ means a life-sentence of misery, toil, and complete unhappiness for the entire family + the affected child.

    In all of this, I don’t feel sorry for the aborted children as much as I do the parents who chose to abort them.  The children got a one-way ticket to Paradise.  They were made for Jannah.  It’s the parents who have cheated themselves out of the most rewarding journey they could possibly have embarked on, the greatest test of their patience and the greatest blossoming of love they could feel for another human being.  On a side note, they’ll have some questions to answer in the next life.  But in this life even, they have cheated themselves.

    You’ll never know how amazing it is to stand on top of the mountain unless you’ve climbed all the way to the top.

    I told the doctor no thank you, I have one special needs child and I can have another one.  She nodded at me and smiled.

    “Good,” she said.  “I have a special needs child too.  And I would not have it any other way.”

    Me neither.  AllahuAkbar.

  • Flying Solo: Khalid’s first day of school and other adventures

    Flying Solo: Khalid’s first day of school and other adventures

    So Joy- Khalid’s full-time caregiver and ABA therapist- is on vacation for a month as of yesterday, which was also Khalid’s first day of school, which was also the day that Iman fell down in the hallway and knocked loose and fractured one of her front teeth.

    This morning was our first day without Joy, as well as the first day that I attempted to run Khalid through his ABA program, as well as have a three-hour instructional design meeting for my ‘real’ job and then take Iman for an emergency dental appointment.

    The morning program was educational, in that I learned that it will take a whole lot more than her whiteboard markers to give me Joy’s superpowers.  The laminator chewed up my flash cards and spat them back out in a smelly, melted mess.  The kids got bored when I took too long to find the next program materials and Khalid knocked a cup of tea into a box of 96 crayons.  Why was the teacher drinking tea in class?  Because the teacher was a sleepy amateur, that’s why.

    The subsequent meeting was interesting, in that Iman sat in with the Business Development Manager and I to color and contribute her professional opinion on the course development- which was generally about butterflies, the beach, and where her marker went.  Also, she told the BDM that she was snotty.  And she was.

    The dental appointment went well in that there was little dentistry involved- Iman’s mouth needs three weeks to heal so that the tooth is no longer wobbly before they perform a root canal and remove the lower-half that is no longer viable.  (It cracked straight across)

    And now, Khalid’s first day of school.

    I think he may have had fun, but Joy and I were quite nervous, especially since Khalid is not really enrolled- he’s being observed for an hour a day, two to three times a week in the KG class to determine whether he can be there without causing massive disruption to the ‘normal’ kids.  I don’t remember kindergarten being that tense when I was a kid, but then the principal and school counselor probably weren’t both in the class to observe me.  And the teachers probably didn’t have the wary, anxious look of two women with 28 three and a half year olds who have just been handed the Unknown Special Needs Quantity X.  Khalid is a year older and a head taller than the other children.  His academic scores put him in second grade, but his verbal and social scores place him in nursery, so KG-1  is somewhere in the middle and our goal is to help bring his social and verbal scores up while maintaining his academic scores at home.

    He had to be interviewed to be let in.  We had to submit his psychological assessment, sign a legal disclaimer, take official responsibility to protect other students from him and answer questions about how loud, how often, how intensely and for what reasons he could freak out.  We spent three hours on the first day with the school counselor and the principal and the registrar, and while I am grateful, Alhamdulillah, and relieved that he’s being given a chance to go to a ‘normal’ school, my maternal hackles have been raised in indignation for Khalid.

    (He pinched Joy, will he pinch other children?)

    (The assessment mentions self-injury, can you tell us about that?)

    (Why are his academics so far ahead?  Why haven’t you been pushing his social and verbal instead?)

    [Gee, maybe he’s a classical case of autism?]

    (If you even think that he might be about to make noise, just take him out of the class.)

    I’m sure Khalid wasn’t offended, at least not by anything the staff said.  Instead, he was upset when he walked into the class and noticed that the letter C was missing from the alphabet lineup on the wall.  He asked where it was, noticed it on the center of the board, and attempted to put it back where it belonged.  We spent a few minutes gently distracting him away from the missing C (and some noise was involved) but then he noticed that the word Sunday was out of place in the days of the week lineup.  It was on another wall because it had a special schedule.  He tried to pull that down too.

    Other children were drinking juice, so he asked for one by writing out J- U- I- C- E with his finger in air-letters a foot tall.  You should have seen how fast Joy and I rushed to get him some.  He sat during snack-time eating his apple and drinking, reading every written word and chart on the wall from his seat at the Brown Bears table while other children chatted and fussed with their food and had the kind of conversations that kids in kindergarten do.  One little girl peed in her chair and was taken away crying.  One little boy got scolded by the teacher, and in turn, Khalid scolded the teacher.  I don’t think that went over well.

    The principal came in and asked Khalid how he was doing.  He answered ‘Fine!’ and Joy and I gave each other looks of desperate encouragement and relief.  When it was time to go out and play, he did a reasonable job of staying in line with the other kids as long as Joy and I were flanking him on both sides.  Khalid climbed and ran and went down the slides, Joy and I got a chance to relax.  But then it was time to go inside again, and Khalid has a hard time with transitions, so he sprinted down the hall out of protest and I had to chase him.

    When I finally caught him, we bumped into one of the staff members from the center that is managing his case, and to be honest, it was a breath of fresh air.  That lady, like other therapists and case managers, looked at Khalid like a miracle, a prodigy, a best-case scenario and the child that every mother is jealous of.  In the world of autism, this may be true- Khalid is making amazing progress, has manageable behavioural issues, and little to no aggression.  The director of the autism center calls him a star and a poster boy for ABA, but here in the world of normal kids, Khalid is a disruption, an anomaly, a little boy who can’t follow simple instructions and screams at adults if they press him for social interaction.   The teachers don’t beam at him and hug him and tickle him and engage with him, they sigh and keep a few feet back.

    This morning Khalid had a cough, so I texted the school counselor to let her know we would stay home.  She texted back saying let him stay home for the rest of week, and she would see him after the weekend.   I know she meant well.  I know there’s no law saying they have to take Khalid.  I know their teachers don’t get paid extra for having a unpredictable, neurologically challenged little boy in the midst of their crying, peeing, nose-picking kindergarteners.  They have enough to handle without throwing Khalid into the mix.  But they could, at least, smile.  Just a little.  And watch with patient kindness instead of stern observation, clipboards in hand.  And say things like ‘Don’t worry if he makes a little noise, the normal kids make quite a fuss too…’ instead of  ‘If you even think he’s going to make noise…’

    Even Joy, who’s  been doing school shadowing and ABA therapy for ten years, was put off by the attitude.  Or lack of warmth, rather.  There’s willingness, but not much warmth.  And I feel like saying ‘take your stupid school, Khalid doesn’t need it!’ but the truth is, he does.  And there are only a handful of schools in the entire country that are willing to consider letting him in, and I should be grateful that there’s one so close to our house and already working with his therapy center to help facilitate inclusion.  And plus, when the kids were supposed to be putting their heads down for some quiet time, and Khalid was doing some worksheets on his own to bide the time, one little boy raised his head, peeked over at Khalid’s work (Write the number twelve, then find which groups of pictures have twelve items in them, and circle them) and exclaimed, “How did you do that!?”  And Joy and I beamed with pride, but then it was time for the kids to go to their Arabic class and it was time for us to go home.  Because the management believes that Khalid would not be prepared to learn one Arabic letter and one color in Arabic per week, even though I told them he already knows the alphabet in Arabic.

    (And he can count to one hundred)

    (And he knows his shapes and colors)

    (And he can add numbers from 1 to 10)

    (And he can read using phonics)

    (And he is computer literate, knows how to type, operate a DVD player, use Google Chrome, YouTube, Starfall.com, and PBSkids.org)

    It took me some time to accept Khalid’s autism, so I should cut other people slack too.  I know.  I need to remind myself that they don’t know where he’s been to appreciate how far he’s come.  And there’s nothing amazing about a him defending himself from interacting with the teachers or not yet speaking in full sentences.   And yelling at anyone who raises their voice in his vicinity is rather disruptive to class.  I’ll admit that too.  But he’s my son- my amazing, unusual, awkward, shy, silly, academically brilliant but socially disabled son and I think he’s the most miraculous child in the world- and anyone who thinks poorly of him because of his disability is going to have a very hard time getting out of my bad books.

    But I’m a grown up, so I can’t be defensive, I have to be the most outgoing, outspoken, cheerful, useful, special-needs shadow mom that KG has ever seen, and I have to support these two overworked young ladies and help teach them how to manage my ABA poster-boy.

    (And if the thumb tacks should go missing and unexpectedly end up on someone’s chair, I’ll try to keep Khalid from reacting to the noise of their satisfyingly shrill surprise.)

    By Momma, the end.

  • And later he told me that he had a race car bed, but I don’t think I believe him.

    Sometimes your eyes are sleepy but your brain is awake. And that’s why it’s past midnight and I’m on the computer. (Sorry HF, I tried!) And I will probably just put in half an hour of trying to figure out my shiny new wordpress theme at AutismUAE.com, but first, something I want to remember.

    Khalid and I went to Ace Hardware today. We were browsing through the garden section, and Khalid found a swing and sat down. So I sat down next to him and we starting swinging. Then he laid down and put his head in my lap. And I looked and him and said “Hey, what’s your name?”

    And he said Khalid.

    And I pointed to myself and asked, “What’s my name?”

    And he answered the same- Khalid.

    And I said “No, my name is Momma!”

    And he looked at me and said “Momma. I know.”

    And that was amazing. You may not understand why. And I don’t think I can explain it. But I don’t want to forget it. SubhanAllahi wa bihamdihi.

  • Letter to my boss

    Hi D, R-

    Am sorry to say that Khalid has been up all night for reasons known only unto him, so I will be unable to accompany HF into work today, howsoever much I was looking forward to a producitve and focused day of work that didn’t involve legos or people under the age of 23.

    -Abez

  • A culmination of hope and fear- AutismUAE.com

    A culmination of hope and fear- AutismUAE.com

    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.

  • Boy, talk about tough love!

    Khalid used an entire bottle of sunblock to finger paint my bedroom with, here I am pouting about it online to HF:

    Me: Khalid painted the room in sunblock.

    HF: OH NO

    Me: sigh.
    I am really mad and trying to remember that he is creative and funny and pleasant smelling
    but the carpet has lost color in some places

    HF: he is hilarious

    Me: and the floor is greasy

    HF: is he ok?
    did he eat any?

    Me: he’s alright.
    he smells really nice, heh

    HF: and perfect for the park!
    he’s exploring
    this is a good thing

    Me: well, he is on his way to the park right now
    and he used up all the awesome lip balm nizreen gave me

    HF: better then him being a vegetable
    can you imagine that?
    …

    Me:
    ok, point taken 🙂

  • Bittersweet: A Spiritual Perspective on Special Needs Parenting

    Bittersweet: A Spiritual Perspective on Special Needs Parenting

    Reposted from MuslimMatters.org

    I’ve tried several times to begin this article and this is my third attempt. I’m supposed to be writing about special needs parenting from an Islamic/Muslim/Spiritual point of view, and the challenge is finding a balance between the bitter and the sweet. I have had some experience, my son Khalid was born with autism, a neurological disorder with complex genetic causes and no known cure. He woke up crying every two hours from the day he was born until he was almost three. He learned how to talk just last year and he occasionally still freaks out if you laugh too loudly in his vicinity. He used to bang his head against windows and walls and cry until he threw up. He’s made wonderful progress, Alhamdulillah, but at the end of the day, he still has autism, and we still have our daily challenges.

    It’s hard to understand autism from the outside, and to be fair, no two people are affected in the same way. On the severe end of the scale, there’s our friend Dan, who does not talk, cannot walk properly and was in diapers until 13. His parents put him in leather gloves to prevent him from biting his hands to the bone when he is frustrated. On the other end of the spectrum is our friend Zaina, who has Asperger’s Syndrome, which is a form of autism that Hollywood likes – she’s extremely intelligent, is physically normal, but so socially impaired that she barely talks, cannot make eye contact, and cannot even begin to understand the complexities of interacting with other people. My son Khalid is somewhere in the middle. He has his funny quirks, but he can pass for physically normal unless he’s spinning in circles or flapping his hands. He’s no genius, and his mental age may be behind his physical age, but he’s slowly learned his ABC’s and even attempts to play with other children. Alhamdulillah, his autism is moderate.

    IMG_2893In the two years since his diagnosis, I’ve learned more about patience and trust in Allah than I had in my entire life before that, and having a child with autism has been a blessing that I cannot imagine living without. I’m sure there’s more to learn still, but I know that once upon a time, I thought waiting for an hour was a long wait. Until a few months ago, putting Khalid to bed took an average of an hour and a half every night – sometimes less, often more. I would sit next to him, or lie down next to him, and wait for the screaming, bouncing, kicking, pinching and crying to fade into silence. And I had to sit quietly, and not move or talk, and do my best to imitate some sort of maternal rock as the storm of Khalid battered against it.

    I didn’t do a very good job at first, I would yell at him to lay down, and he would become scared and cry. So I would yell more, and he would scream, and I would yell more, and it would escalate until he would be shaking with fear and I with rage and at some point it occurred to me that my own son was genuinely terrified and couldn’t understand why he was being yelled out. And then, Allah gave me sabr, and then a diagnosis, and then the understanding that Khalid wasn’t disobeying, he just had no idea what was going on.

    Even today, when Khalid is having a weird night and half an hour turns into an hour and a half, I just sit in the dark and do dhikr, or plan the next day, or think, and if he’s still not tired after about two hours, we just get up and go play for a bit. I’ll have a glass of water and maybe even a cookie. Khalid will get on the computer (yes, he uses the computer) and play games for as long as is takes for him to start looking tired, after which we’ll go back to bed again. And I’ll sit next to him in the dark, and he’ll roll around and count his toes, or sing quietly to himself, and occasionally he’ll sit up to make sure I’m still there, but eventually he will doze off and I can finally get to bed, sometimes three or four hours after we “went to bed.” And before you accuse me of being exceptional, Aal’s mother spends three hours just feeding him, three times a day. And he still hits himself.

    Yes, I have a lot of stories. We autism moms tend to gravitate towards one another, not because we have a manifesto or a secret handshake, but because at the end of the day when your child took off their dirty diaper in the mall and got lost in the parking lot and wouldn’t eat their lunch because some of the carrots were too orange, no one else will understand you except for another autism mom.

    Another mother, Noura, called me a few weeks ago, and she had that quiver in her voice that we all get from time to time when we need to break down a bit so that we can put ourselves back together. She had been trying to get her daughter into a school, and no school would take her. She had been trying to get her daughter into a swimming class, but when she went for her first trial, the instructor refused to accept a child with “such behaviors.” Noura had been running desperately from one place to another to get her daughter accepted into social and educational programs of any sort, because her daughter will be turning eight and has never been to school. She told me these things crying over the phone, frustrated and burnt out and just needing to hear something to keep her going. “I just don’t know,” she kept saying, “I don’t know what else I can do.”

    I didn’t know what else she could do either, except for what I do, which is to ask Allah for help. We have been told that a child’s Jannah is beneath his or her mother’s feet, but in some cases, a mother’s Jannah may be beneath the feet of her special needs child. And perhaps the father’s too, Allahu Aalim. The tables get turned on both parents, and those who were relying on their grown children for care in their old age are instead preparing to care for grown children who cannot feed, bathe, or even clothe themselves. Instead of looking forward to retirement, parents dread the time when they can no longer earn an income to support their children.

    If you want to see an adult cry, ask a father or mother what will happen to their special needs daughter or son after they die. If you could see inside of their head, you would see an exploding matrix of questions, fears, worries, and desperate plans. You would re-read every news story you’ve ever read of neglect or abuse, or even rape, of special needs adults by paid caretakers who take advantage of individuals who do not know how to defend themselves or even speak. You would hear the point and counterpoint of a mind divided between wanting more children who could potentially care for the child, versus not wanting to risk having another child with the same genetically linked condition. You would see mental excel sheets tallying savings and money spent on current treatments versus saved for future life-long care, and money not saved for the education of the other children, and you would see a lot of figures in red. Special needs parenting is expensive. And scary. But here’s something unexpected – it’s also beautiful, and humbling, and when undertaken with trust in Allah and faith in His decisions, it is the catalyst for spiritual evolution.

    Recognizing that our special-needs children are a trial as well as an opportunity to earn blessings, we are able to change the stories we tell ourselves. When we look at our children, and Shaitaan whispers “Why you? Why your child? How could God do this to you? It’s not fair,” we can bravely answer back. Allah chose me for this because He knew I could handle it, and He never gives anyone more than they can bear. I am not Khalid’s Rabb, Allah is, and when I die, He will look after Khalid with a love seventy times greater than my own. I can only save so much money and teach his sister to look out for him only so much. Khalid’s care is with Allah. His rizq is with his Lord. And he may never learn how to work and he may never get married or hold a job, and he may die alone, or he may die before I do, but he will be raised as an innocent – one who will be exempt from the fear of judgment because he never knew what sin was. If he never had a job, then he will never be asked about his wealth. If he never speaks, he will not be asked about lying. And these things are terrifying for me to think of, to type even, but I know that Allah has given my son autism for a reason, and all of Allah’s reasons are good reasons.

    The Messenger of Allah (sallallahu `alayhi wa sallam) said,

    “The greatest reward comes with the greatest trial. When Allaah loves a people He tests them. Whoever accepts that wins His pleasure but whoever is discontent with that earns His wrath.” Narrated by al-Tirmidhi (2396) and Ibn Maajah (4031); classed as hasan by al-Albaani in Saheeh al-Tirmidhi.

    “How wonderful is the affair of the believer, for his affairs are all good, and this applies to no one but the believer. If something good happens to him, he is thankful for it and that is good for him. If something bad happens to him, he bears it with patience and that is good for him.” (Narrated by Muslim, 2999).

    Sometimes, when I look at Khalid I wonder what life would be like if he were ‘normal.’ He has the most enormous, beautiful brown eyes. He skin is a light olive, he has silky dark hair and a smile that could melt the polar ice caps. Perhaps normalcy would be too dangerous for Khalid. Or maybe he would be fine, maybe the autism is for me. I know with absolute certainty that if my son did not have autism, I would not have been a dedicated parent and a desperate Muslim. If I had not been pushed through fear for his future and hardship through the present, I would never have understood what it really meant to pray. My trust in Allah and acknowledgement of his Rububiyya(Lordship) would never have moved beyond the superficial. Can you dread for your child’s future without losing hope in Allah’s mercy? Is your taqwa greater than your fear?

    It has taken me some time, but I can finally thank Allah for Khalid’s autism. It may save him from accountability , and it has definitely saved me from living in the unreal world – one where I care more about my child’s postgraduate degree than his iman. And while I have an entire lifetime of challenges to look forward to, I am keeping faith that Allah intends nothing but good for Khalid and I. If that means waiting until the resurrection to see my son as a normal young man, then so be it. Khalid and I will meet again at Al-Kauthar, and sit in Jannah with an eternity of ease to make up for one small lifetime of hardship.

    May Allah have mercy on all Muslims, and ease whatever difficulties they are facing, and strengthen their iman and increase them in sabr, and reunite them with their loved ones in the company of the righteous. Ameen.

  • SubhanAllah!

    I realize that I may already have a few posts titled SubhanAllah or Alhamdulillah or maybe even Astaghfirullah, but sometimes praising God is the only way to do justice to how I feel.  Khalid and I have had our first conversation, a conversation being an exchange of words.  Previously, he has used a word or two to get his point across, or occasionally answered a question, but we’ve never had a conversation where I said something, he responded, I replied to his response, and he added a concluding remark.  But SubhanAllahi Wabihamdihi!  We’ve had our first conversation!

    Me, leading Khalid to elevator in mall: Khalid come on, it’s time to go home.

    Khalid pulls away and holds up his index finger: No pwease!

    Me: You don’t want to ride the elevator?

    Khalid: Lay-tuh. (later)

    Me: We need to go home Khalid.

    Khalid: I wan… banana.

    Me: You want a banana?

    Khalid: Caddy-fo! Okay!

    Awestruck, we go to the grocery store (in Khalid’s world, all grocery stores are Carrefour) and buy Khalid a banana.  All is the right with the world so we head happily home.

    SubhanAllah. 🙂

  • My little hero, MashaAllah

    My little hero, MashaAllah

    Some children are bad at taking turns, but my kids are good at it for all the wrong reasons.  When Iman is getting an involuntary manicure, she’ll plead “Khalid’s turn!  Khalid’s turn!”  And when it really is Khalid’s turn, he’ll do the same.  “Iman’s turn!  Iman’s turn!”

    To say it’s the other sibling’s turn is loosely translated as “Not me, take him instead!”  On the other hand, when Khalid is playing with a toy that Iman finds interesting, she has no hesitation in grabbing it and yelling out “Iman’s turn!” and when Khalid wants to use my computer, he’ll stand at my elbow and cheerfully announce “It’s Khalid’s turn!”

    Turn-taking has been anything but an altruistic skill, until now.

    Iman had a dental appointment two days ago, and of course, she screamed bloody murder while having her teeth cleaned.  I held her in my lap, Cindy held her legs, one assistant held her head while a second handed tools to the dentist- a lovely lady who works with the rapid expertise of someone with a small window of opportunity in the midst of a big fuss.

    In all of this, Khalid was just outside in the waiting room, playing uneasily with the legos and periodically trying to come in to see what was happening to Iman.  Joy redirected him back to the legos several times, but he was quite upset by Iman’s screaming.  And my brave little boy, you know what he said to Joy as he tried to enter the room again?

    “It’s Khalid’s turn.”

    SubhanAllah, MashaAllah, Alhamdulillah. 🙂

  • Khalid kicks butt! Literally! Kya!

    Khalid kicks butt! Literally! Kya!

    One worrying aspect of taking Khalid out is how he will interact with other children. He’s quite shy as far as kids go- even more so than normal ones- so he’s overly good at keeping his hands to himself.

    Even with Iman, who hits, pinches, taunts, kicks, and noogies her way through life (I’ve been told that she’s the normal one) Khalid seldom hits back, and his strategy is one of defense and escape. Iman can be sitting on his chest and trying to pull off his eyelids, but all he will do is cover his eyes. So you can see how I would be worried for Khalid when it comes to other kids, who can be vicious little beasties when unsupervised. Good news, my fears have been allayed.

    Last week, we took the kids to the Dubai Outlet Mall, which in addition to cheap brand name shopping, also has cheap indoor play areas. Hooray! For 30 dhs, we were able to get both kids into an area with two bouncy castles, a bouncy slide, and a bunch of other great kid-proof play equipment. The slides, benches, and even floor were covered with foam. It was a weekday evening, so the mall was nice and empty, and there was only one other kid in the play area with Khalid and Iman. I snuck away while they were bouncing and wandered off to do some discount browsing. Joy stayed to watch the kids, and when I came back, this is what she told me.

    A little boy named Andre was playing rough. He was pushing and hitting, and at one point he deliberately knocked Khalid over in the bouncy castle. Joy watched, waiting to see how Khalid would respond. Khalid picked himself up, walked around Andre, matter-of-factly KICKED HIM IN THE BUTT and then walked away.

    !!!

    It gets better.

    Andre backed off for a while, but finding nothing better to do, and no one else to bother since there were only three kids in the play area (the third being Iman, and you do NOT want to mess with her) came back and sat down next to Khalid. Then he punched Khalid on the thigh.

    Khalid stood up, and without anger or malice, took Andre’s leg. Then he pulled. And Andre came crashing down from the (foam) bench and on to the (foam) floor. And Khalid walked away and found somewhere else to sit. And thereafter, Andre kept his malice to himself.

    This may sound weird, but I am so proud of Khalid. He responded without doing more than he had to. He expressed his dissatisfaction with a swift kick to the butt, and then he walked away. When Andre came back and hit him again, Khalid responded with just enough force, but no amount of abuse, and then walked away again. My gentle giant of a four-year old can stand up for himself. Alhamdulillah. 😀

  • Khalid’s first sentence! Alhamdulillah!

    Before I get to Khalid’s first sentence- his first spontaneously, original, and contextually appropriate sentence-  this blog has a long preamble.  Here it goes.

    Once upon a time, HF and I met a friend of a friend at an Eid party.  MashaAllah, he was an American Muslim convert married to a South-American convert.  Together they had three children, two of whom seemed perfectly lovely and energetic and funny, and one of whom was… strange.  His name was Aziz.  He was extremely thin, held his arms in front of his body with his fingers in strange positions, his speech was difficult to understand and he seemed disconnected from things that were happening around him.   At that time I was pregnant with Khalid, and little did I know that the weird little boy with the flicking fingers and disconnected look would have so much in common to the unborn little boy I was carrying.  Aziz had autism.

    We didn’t see that family again until over two years later, when Khalid was diagnosed with autism, and HF remembered that once upon a time, we met another Muslim family at an Eid party whose child had autism.  Contact was reestablished, and we went over for a visit, nearly three years after we had first met them.  I was nervous, and still depressed and in the initial stages of trying to understand Khalid’s diagnosis.  Khalid had not yet begun ABA and we were in the agonizing wait between assessment and the beginning of therapy.  Imagine my surprise when we got there and were welcomed by a totally different little boy.

    “Come here,” he said, excitedly, though with his head tilted awkwardly to one side, “I want to show you my big city.”  He led us to a poster on the dining table dotted with landmarks along a hand-drawn river.  “This is the Eiffel Tower.  And this,” he said, pointing to a suspiciously geometric-looking piece of play-dough, “this is the Sydney Opera House.”  He took us on a tour from one wonder to the next- the Golden Gate Bridge, the Burj ul Arab- plastic models and play-dough sculptures as his parents stood and beamed with pride.

    I asked the mother what had happened in the two years since we had seen them.  She told me that she had moved back to her home in South America for a year with the kids to get ABA training and the most therapy possible for their dollar value.  She sat with Aziz for six hours a day, training him, teaching him, coaxing him out of his bubble, and the end result was this intelligent, social, and earnest little boy who built his own cities.

    I asked her when Aziz started speaking- a question that I worried over for Khalid constantly.  At that point in time, he had no words (apart from one, single instance where he parroted the word ‘socks’) and had gone almost completely silent, apart from screaming or crying.  She laughed and told me the story of their vacation in Malaysia.  They had gone there as a family, and of course, they were facing challenges with managing Aziz.  He could not stand being wet.  If even a single drop of water landed on his clothes, he would have to be changed.  Now, imagine pouring with sweat in Malaysia, and trying to control a boy who is freaking out every half an hour because he’s “Wet!  Wet!” and needs to be changed no matter where, no matter when.  The mother honestly told me (and I loved her for her honesty) that one day she couldn’t take it anymore.  She just flipped out, and when Aziz started panicking at a restaurant when he was sweaty, she took a glass of water and threw it on him.

    “There, now you’re wet!”

    He went silent.  And he stayed in his wet shirt until they got home, but he didn’t complain about being wet again.

    Of course, the mother felt terribly guilty, and awful for having lost her cool.  It was a tense vacation, and towards the end of it, they were taking a jungle tour where they were led across a bridge that passed through some treetops.  They were bordered on both sides by monkeys desensitized by the number of visitors who passed over the bridge every day.  The tour guy expressly told them to NOT bring any food on to the bridge, because the monkeys wouldn’t wait for you to offer it, they would just take it.   And of course, kids being kids, one of their other sons ignored the advice, and midway across the bridge, pulled out a piece of bread from his bag.  Within seconds, a monkey appeared out of nowhere, snatched the bread from the boy’s hand and disappeared into the great green yonder.  And in the stunned silence that followed, Aziz shrugged and said his first sentence.

    “Monkey took the bread.”

    I have remembered that story since it was first told to me two years ago.  I’ve told it to other people as well as myself when fretting over when and if Khalid would speak.   It brought me joy and hope and always a little chuckle to remember the mother holding her palms up and shrugging, “Monkey took the bread.”  I loved her story of Aziz’s first sentence, and I’d been waiting to have one for Khalid.  Now, I finally do.

    On Friday, the seventh of May,  HF and I had been sitting on the bed and talking, and simultaneously two things happened.  The first was that Iman made a grab for the piping-hot cup of chai that I had just set down on my desk.  The second was that Khalid, who had been quietly climbing the bed from the far side, fell down and landed face-first onto the mattress.   I jumped up and took the chai out of Iman’s hands just as she was about to slosh it onto herself, and HF turned and picked up Khalid who had begun to shriek.  I opened the wardrobe and shoved the cup of chai inside for safekeeping and turned to Khalid, who was bleeding heavily.  He had somehow bitten through the corner of his mouth.  Iman began to cry as well, terrified by the blood and the screaming.  She was whisked away by Cindy, and Khalid, bleeding and screaming, was quickly given a voltaren suppository as HF and I took turns trying to hold a kitchen towel over his mouth.

    When we got a handle on the bleeding, we loaded Khalid into the car and off to the ER, where he was seen by a doctor at 12:20 pm, and four hours later, put under general anasthesia to have a surgeon repair his mouth.  Apparently, he had fallen with his mouth open, and cut his lip and the area around it with a canine tooth from both sides, inside and out. HF stayed with Khalid, and told me that Khalid fought blindly when coming out of anasthesia, and cried non-stop for around half an hour before settling down and watching  cartoons on the hospital tv in his undies.  Eventually Khalid had some juice without throwing up and was ready to come home.

    We got home by 9:30 pm, thanked Joy for her help, threw HF into the shower and began prepping Khalid for bed.  Khalid, realizing there was something funny on his face, began to pull.  And within ten minutes of getting home, he had removed the glue that the surgeon had put over his stitches, disturbed the wound, and found himself in his car seat again and back on his way to the hospital.  Joy and I took the second shift and left HF at home.  We took our second tour of the ER, saw a different doctor (as their shift had changed too) and were told (to our relief) that even though he had messed things around a bit, the stitches were safely inside of his lip, and the edges of the wounds still lined up reasonably straight, so he was alright without the glue as long as he didn’t pick anything else apart.

    We made it back to the car by 11:30.  It had been a long, long day, and Joy and I were sitting in relieved, if not tired silence at a red traffic signal.  Khalid, from the back seat of the car, picked up a paper cup and balanced it on top of his head.  Seeing the motion in the rear-view mirror, I turned in my seat to make sure he wasn’t picking at his mouth again.  He looked at me and smiled, and shyly and carefully said his first sentence.

    “I … am… a hat!”

    Alhamdulillah.

    And all was right with the world, and when we got home Khalid fell promptly asleep, and in the morning, Cindy confusedly handed me cup of tea she had found in my wardrobe and we had a good laugh.

    The end.

  • I want to hug this woman

    The woman who posted this list at McSweeney’s deserves a hug. And so does Baji for mailing it to me, because it made my day.  We had a public meltdown about two or three weeks ago in the Mirdif City Center, and I didn’t blog about it because I try not to be pointlessly negative.  I feel I could be more positive writing about it now that I’ve had some time to think about it.

    So were at the mall.  And it was a weekend, the opening weekend in fact.  And the check-out line was forty minutes long.  I’m not joking, it was 40 minutes long.  People were abandoning their purchases by the wayside and giving up before reaching the cashier, but we finally made it because Cindy held our place in line while I walked the kids around the store in the shopping cart.  But 40 minutes is a long time to aimlessly wander, and Iman wanted everything she saw, and Khalid wanted nothing but to be out, so there was crying and whining and grabbing and lots of attempted escaping from a moving shopping cart.

    Eventually we made it to the checkout, and I pushed the cart to Cindy, who started handing our shopping to the cashier while holding Iman into her seat.  I took Khalid out, because he was climbing out of the cart anyway, and was just trying to keep him standing near me until we could pay.  On top of that, the forty minutes of people standing behind Cindy had a collectively mutinous look to them, and it was clear from the more-than-usual amount of glaring that I was thought to be cutting in line.

    Khalid was tired and angry, and instead of holding my hand, laid down on the floor and screamed and kicked- and some shoppers got kicked too- and some carts were rearranged on the crowded floor by his flying feet of fury, and in the mean time, Iman was standing up in the shopping cart and yelling to be taken out.  And the two ladies standing closest to me – and they were really, really close- began their pitying analysis of me and my parenting skills with lots of tsk-tsking and Taubaaa!  (God Forbid!!) and gesturing to Khalid and making disgusted faces and looking to me to make eye contact so they could take what they were saying and put it into second person instead of third.

    Eventually, Joy came to the rescue.  She had been at the other end of the mall trying to find chips and tic-tacs, two of our favorite go-to’s when there are errands to be run and children to be pacified.  She finally returned with said chips and carried Khalid out of the store so I could scribble something unintelligible on the receipt, collect my bags and try to exit the store with as much dignity as I could muster when all I really wanted to do was cry.  I would have been in good company, Iman would totally have joined me.  Heads turned as we walked past the rest of the line and the chattering followed.  I left feeling broken and worthless and utterly low.

    We had parked on the opposite end of the mall, and it was a rather long walk back to the car.  Cindy pushed the cart, Iman rode inside, at peace with a box of tic-tacs.  It was relatively uneventful and morose until Khalid- seeking the freedom of the long, marbled shopping arcade- escaped and ran away from Joy at full speed, and in running past me, tripped on the corner of my abaya, slipped, and crashed head-first  into the shopping cart full of groceries and Iman.  And there was a mighty wail, and lots of crying, and people rushing out of stores to see what had happened.  And I sighed, and scooped Khalid up and eventually the crying stopped and eventually, after forgetting where we had parked and wandering around the parking lot for fifteen minutes, eventually we made it home.

    When HF got home I had a good long cry about it.  I couldn’t help it.  I had been trying all day to forget about it, but the utter disgust in those women’s faces cut me to the quick.  I may joke about being ‘Mother of the Year’ when my kids have fries and peanut butter for dinner, or go to bed in the same clothes they’ve been wearing all day because they’ve fallen asleep in the car, but to be seriously seen in that light by someone else  made me feel like something you scrape off the bottom of your shoe.

    I know, they had no idea Khalid was autistic.  Even if I told them that he was, they would have no idea what it meant in terms of behavioral issues.  Sometimes parents get together and complain about how long it takes their children to sleep.  “Twenty minutes!” they moan, “Twenty whole minutes!”  I nod sympathetically and tell them they are doing a good job, and that eventually, InshaAllah, their hard work will pay off with loving, responsible adults who appreciate your struggles once they have their own.  I can’t say ‘Twenty minutes?  Oh God, that would be AWESOME.’  Putting Khalid to bed takes an hour on good nights and two hours on bad ones.  Also, he kicks me in the face in his sleep.’

    If I said these things I would be complaining.  I don’t mean I, me, myself, would see myself as whining.  I mean I would be seen as badmouthing my special-needs child, which is the moral equivalent of kicking a puppy.  Sometimes, when I tell people for the first time that my son has autism, I’m told- ‘Oh no, he’s fine!  Look at him!’  And if I warn them to move their mobile phones out of his reach, or put the decorations on a higher shelf because he may try to eat them- they look at me like I’m casting aspersions on him, the bitter, angry dishrag of a mom that I am.

    But I digress.  Even if I had told the two ladies in the checkout line that Khalid had autism, they would still think I was a bad mother.  They didn’t know that Khalid had zero understanding of the situation and had already displayed epic patience (40 minutes!!) and had no way of verbally communicating that he was tired and wanted to go home other than screaming and trying to walk himself away from the clamour of the mall- and unless they knew what happened if I raised my voice to him or took a hand to him- they would expect him to behave better or me to spank him into submission.  If you yell at or hit Khalid, he is overcome with terror.  I’m not talking about the kind of fear that every child usually has of their parents, I’m talking about an animal fear- devoid of logic, unaffected by hugs or bribes or apologies- where he will run into walls or hurt himself in his desperation to escape.  Or, he completely shuts down.  He covers his ears with his hands and screams and is so overwhelmed that the original point of the disagreement is totally lost.

    One of autism’s most difficult challenges is lack of public understanding.  No one would glare at a mother who had a crying child in a wheel chair, or physically rough child with Down’s syndrome.  It would be obvious- cut the mom some slack, the child has some issues.  With autism, most children *look* perfectly normal, but that facade covers up severe behavior problems further complicated by inability to communicate- not only from child to mother (I’m hungry = Screaming, I’m tired = Screaming, My toe hurts = Screaming) but also from mother to child.  When your child can’t understand you, they can’t easily be comforted when they’re afraid, or reassured that food is coming if they’re hungry, or be pacified with promised rewards for good behavior.  The bubble of autism doesn’t just keep your child in, it keeps you out.

    Now remember, I’m not being negative.  I’m not complaining.  I’m just being honest.  And I can’t think of what an ideal situation would have been at that mall.  I won’t say that ideally Khalid shouldn’t have been having a meltdown, because that is unrealistic and unfair to Khalid.  He didn’t choose to have autism, and he can’t just choose to be normal.  I suppose I should have gone into ‘Autism Ambassador’ mode instead of just trying to contain the situation and get out of the store asap.  The ladies would have had a learning experience and I would have felt less like mother scum of the earth.

    So here we are today, being positive. 🙂  Alhamdulillah. I should be willing to cut other people as much slack as I wish they would cut me.  They won’t know what Khalid’s autism means unless I tell them.  Sometimes I think I should just print t-shirts that say: Ask me about my son’s neurological disorder!  I wonder if I could order them in bulk.

  • Muslimas’Oasis: Autism Awareness interview with Abez

    Muslimas’Oasis: Autism Awareness interview with Abez

    Screen Shot 2014-11-11 at 4.31.43 PM

     

    Click the image to go to the full interview, or read it here.

  • No Mountain too Great, No Milestone too Small 🙂

    For the first time in his life, just this evening, Khalid asked to be taken to the toilet. Alhamdulillah. 🙂

    Today’s request of ‘a-wahn toy-lut’ is a huge step in getting Khalid completely out of diapers, InshaAllah. At the moment, he wears one to bed, or when we step out of the house as damage control in case of an accident. Generally he’s really good about holding it and waiting until he’s taken to the bathroom (which we do regularly when we’re out) but he’s never before asked to go on his own. Previously, if he had to go, but no one had offered to take him, we would just have an accident. And because people tend to take offense to their sofas being peed on, we would leave him in the diaper but treat him like he was potty trained.

    But hey, my little man asked for the toy-lut! They grow up so fast, MashaAllah. 🙂

  • To two and four and many more, InshaAllah. 🙂

    So March has come and gone, which is annually insignificant, except that both of my children were born in March. I haven’t celebrated birthdays for years, but when it comes to my kids, the dates are significant to me in ways that have nothing to do with candles and everything to do with crying.

    When I first learned that I was expecting, I have to admit- I had no idea what to expect. The magnitude of the situation was completely below sea-level until Khalid was born and the nurses put a tiny, dark-haired bundle on my chest and told me I had a son. He was bluish, and wrinkly, and the most beautiful baby I had ever seen. And then he was always there- it was my duty to keep him happy, warm, clean, alive, loved, fed, rocked, tickled and adorably dressed. He was a gigapet without an off button who refused to take either a bottle or a pacifier and no one else could watch him for me.

    And he grew, and eventually he crawled, and thank God, he even learned how to walk at 13 months, but at night he cried. And he learned how to babble, but he never talked, and he sometimes played, but spent a great deal of time just staring at things. And when he was fourteen months old I learned that I was expecting again, and I cried. It is humbling, and personally very shaming to think of now, but they were not happy tears. They were the tears of mother who felt like an utter failure, an utterly overwhelmed failure with a little boy who lived like a shadow in my own shadow.

    By the time Khalid was two, he had gone nearly silent. Hours would pass without him making a single squeak, laugh, babble, or request- verbal or nonverbal. He would spend his day staring out of the window or following me from room to room. It was March, and then Iman was born. We spent weeks in a nocturnal daze, handling the growing confusion of Khalid’s development problems and the confusing emergence of Iman’s colic. Like clockwork, Iman would start crying at one am and stop by six am. For five hours she screamed inconsolably, squirmed, kicked, and arched her back, her body tense and trembling, and paused only for breath no matter how much I rocked, walked, soothed, sang, or bounced her. By six am the screaming would stop, she would feed desperately, and then fall asleep. By that point Khalid would be asleep on the floor by my feet. He would have cried himself to sleep too, because he would have woken up when Iman started crying and sobbed himself to sleep at the foot of the rocking chair where he begged to be picked up (and demanded that the little screaming pink thing be put down) until he gave up and fell asleep on the floor.

    (No, I didn’t blog about any of this, I try to maintain a ‘No Pointless Negativity’ policy about blogging, and my G-ma taught me that if I can’t say anything nice, then I shouldn’t say anything at all. I cannot think of ANY SINGLE THING even remotely nice about colic or the creeping fear that your child’s brain is abnormal, which is why you won’t find them in previous blog entries.)

    We eventually changed our sleeping habits completely. We woke up at 6 pm and started our day, and Khalid’s bed time was at 7 am, when Iman was done with her screaming and I could bathe him and put him to bed somewhere other than the floor. We saw HF for a few hours, after he came home from work and just before he too went to bed, and he woke up countless times in the middle of the night to give me a break- to walk the beaten path in the living room around the coffee table, to the front door, and past the sofa and back again while rocking Iman in his arms. It was a tough time for everyone. And I did a lot of crying.

    Then, we got help. We hired a full-time Nanny, who put Iman to sleep while I put Khalid to sleep, and when Iman woke up in the middle of the night, I would go out and take the night shift while Khalid continued to sleep with HF in our bed. Some semblance of normalcy returned. After six weeks, the crying started to taper off. We started to have two, sometimes even three good nights a week. Eventually the screaming stopped, and Iman only woke up for feedings in the middle of the night with a minimal amount of crying.

    By the time Iman was six months old, and Khalid two and six months old, we started to put our finger on exactly what the issue with Khalid could be. We were on our second nanny, because the first one became quickly frazzled by our nocturnal screaming schedule and quit after four weeks. We did our homework, had an initial assessment done, and then a full psychological assessment done, and by October of 2008, we knew for sure that Khalid had autism. His mental age was 13 months.

    Khalid began ABA therapy in January of 2009, and he would spend the entire three hours crying. After a few weeks, the screaming would be punctuated with bouts of peace, during which I would quickly rush to the window and peek inside to see Khalid putting coins into a piggy bank, or scribbling, or watching one of his therapists blow bubbles. Eventually, he only cried when it was time to go into his sessions, and it would peter out in about ten minutes, and he would emerge from his sessions happy and covered in finger paint.

    And life got better. And Khalid learned one word, and then another. And then he asked for a hug, and while the floodgates have not quite opened, they are cracked enough to let a few dozen meaningful words and a hundred or so prompted words through.

    And now, Khalid is four and Iman is two. Khalid is learning how to read, even though he has yet to use a full sentence, and Iman decided yesterday that she is a Nice Cat. She gets down on all fours, crawls over to my feet and calls out Nice! Momma! Nice Cat! And I kneel down and pet her and say Oh, what a Nice Cat! And I scratch her behind the ears, and she giggles, and I pet her head, and she crawls away to do something important, like hit Khalid on the head with a building block. But she’ll be back again in a few minutes, calling out Nice Cat! Cereal?

    (And if I ignore her, she bites my foot. So I feed Nice Cat a few pieces of cereal, and Nice Cat says thank you and bye bye and meow.)

    Khalid and Iman have moved past enmity to tolerance, and from tolerance to coexistence, and from coexistence to inseparability. SubhanAllah, if I have to run an errand that requires one child and not the other, the two will cry out to each other as if they’re being separated for life. Iman! Iman! Khalid will yell and kick the back of the passenger seat from of him. No No! Ka-leed! Momma! No! Ka-leed! Iman will cry back to him from the gate as we drive through it, and the drama will continue for a few more minutes until Khalid wipes his nose and gets back to pointing out numbers on road signs.

    When we get home again Iman will greet him by bursting into the room screaming and giggling and yelling out KA-LEEEEEEEEEED! and the two will reunite and celebrate by doing important things like bouncing on my bed and hitting each other over the head with building blocks. Iman is the non-stop talker, Khalid is the silent partner. They tease each other constantly, fight viciously, and hug and play lovingly when and if they’re not busy competing for toys and attention. It might be hard to imagine how Khalid can do all of these things without talking, but when he wants to tease Iman, he will look at her and smile, and maybe pinch her toe. And Iman will consider that an act of war and take swing at him, and he’ll dodge and run and a mad chase will ensue.

    Sometimes it’s hard for me to believe that I have it so easy. Thinking back to the downright turmoil that HF and I have been through with the kids, their progress seems unreal. The crying, the colic, the panic that Khalid’s autism put us through- sometimes it seems a million miles away, and those two little babies that the nurses gave me at the hospital, those can’t really be the funny little boy with enormous eyes or my Nice Cat with pigtails. I don’t have babies anymore, I have children, and by the Grace of Allah, this year, they are two and four.

    And I don’t need to give them presents for it as if I don’t overstock the toy department all year round, or bake a cake as if cake isn’t happening on a regular basis, but I do have to say Alhamdulillah, Alhamdulillah, Alhamdulillah. All praise is for Allah, who held me together when I was broken, who kept me on my feet when I was losing my head, and who took some of HF and some of me, and mixed it into the most quirky, energetic, devious, amazing, and inventive little humans I have ever known. And I thank Allah for the colic, and even for the autism, because the fact the He gave it to us means we have the strength to handle it. Without hardship or pain or stress, we would not be forced to become better versions of our previous selves, and we would never be pushed to push through. Allah has made me a better parent and a better person through my children, and I pray that the progress continues for all of us, throughout our lives.

    Ameen.

  • 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:

    • Trying to be righteous is hard work
    • When they said uphill, they really meant it
    • Spiritual struggle can be quite a … struggle

    By Abez, The End.

  • The believer is not broken by sorrow
    Any more than a mountain is leveled by wind
    And neither are battered, but shaped
    By the force of storms they would weather

  • An English to Khalid dictionary

    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.

  • Big Brother Khalid to the Rescue!

    Iman, holding a small triangular puzzle piece, holds it up and asks:  “Kak-kak?” (cookie?)

    Khalid, look up at her: “Twingle.”  (Triangle)

    He takes the piece and puts it back into the puzzle. A few seconds pass, they are both scribbling on magnetic doodle-boards.

    Iman, picking up the same piece again: “Kak-kak?” (cookie?)

    She tries to put it in her mouth.

    Khalid insists: “Twingle!” (Triangle)

    He takes the piece from her and puts it away. They both resume coloring, and all is right with the world. 🙂

  • 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.

  • Apples, Oranges, Autism

    Apples, Oranges, Autism

    My blog needs an update – design and structure-wise, I mean. To replace the links I no longer have time to visit (sorry Blogistan!) with links I visit constantly- places like Autism-watch.org, the Assosciation for Science in Autism, Photon in the Darkness Blog- and a slew of blogs written by/for/about Autistics and Autism. It’s a natural shift for me to make, but one that seems odd nonetheless. When I started blogging.. ohh…six years ago- wait, has it really been six years?

    *checks archive*

    Yep, it’s been six years. And four months. My blog is older than both of my children, as well as my marriage. Ha!

    When I started blogging six years ago, I was a single, carefree, English-Accent teaching expat living in Pakistan with my parents, Owlie, and our little brother. I drove a mini-car named the Silver Bullet and went to the National Stadium Pool to swim laps, socialized all over town with my girlfriends and blogged about religion, life, and whatever sort of nonsense was Soup Du Jour. I wrote poetry and short fiction, played Playstation 2 until my eyeballs turned to glue, and baked compulsively.

    Fast forward six years, and I’m a (very, very) happily married special needs momma with one Autistic boy and one neurotypical Babysaurus Rex.

    (Iman is lately into biting. And slapping. And pulling hair. And screaming bloody murder when she’s put into time out)

    We see three ABA therapists, one OT, and almost no one socially. Phone calls with friends (if ever) tend to be about kids, fianance, real-estate, family, and very often, Autism. I’ve written no short stories, and only a handful of short poems, and even these were before Khalid was born. I wear comfortable sneakers because frilly shoes do not make good kid-chasing gear. I wear stain-resistant, highly patterened clothes and have invested in not one, but three pairs of sunglasses just this year, as both Khalid and Iman are equally bent on, well, bending them.

    I don’t think I am who I used to be.

    I would like to belive that I am better, but I think the most honest thing that I can say is that I am different. Comparing Single Abez to Momma Abez is a bit like comparing apples to oranges, except that this apple slowly started changing color and rounding out and woke up one day and said Hey, am I really an orange?

    I know I am more patient, but I also know that there are days and times when I desperately need time off, and I leave both kids at home with Cindy and HF or my parents (when and if they are in town) and escape to a coffee shop or mall.

    I’m not a big fan of malls, it’s just that here in the UAE in the summer, the mall is the closest thing to a community space that doesn’t resemble a convection oven. I think it’s 108F today. Not bad. Two days ago it was 114. The hottest I can remember has been 116.

    But yeah. I think I’m an orange now. Sometimes I miss being an apple- reading books all night and sleeping until noon the next day, having the time/brain power to write, the energy to bake, and the fitness of a person with the time to excercise and lift weights. But if being an apple again meant losing the entourage that has turned me into an orange- my HusbandFriend, Khalid, Iman- then I wouldn’t trade any of it.

    There are times when I can’t take my children for another second, but I can’t imagine life without them. And being a very complex kind of orange, I then ruin my time-off with overwhelming maternal guilt that causes me to sit in the coffee shop and sulk, and call home and complain to HF that I don’t know what I do when I’m not being Momma.

    *shrug*

    If anyone needs me I’ll be in the produce aisle. Next to the lemons.

  • Sweetest little drumming game to play

    I have to try this with Khalid. 🙂 Many thanks to Anonymous for sharing the Autismgames link!

  • Peeta-Butta and other such verbal masterpieces.

    Khalid, time for a bath.

    No!

    Khalid, you want a bite?
    NooOOoOoOoO!
    Khalid, come here!
    Noooooo!
    Khalid, cookie?
    NooooOOOoOO! No! No!
    Khalid, shoes on!
    No no no no no nooooo!
    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. 🙂

  • Fa inna ma’al usri yusraa, Inna ma’al usri yusraa

    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.

  • We’re up on the soapbox again!

    And we need your help to get votes!

    Dear World- A letter from Mother & Son

    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!
    Thank Yous!

  • The sweetest ROI

    ‘ama ‘ug!

    (Translation: Momma, hug!)
    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.
    Alhamdulillah.

  • Where O Where is Khalid?

    Notice, no eye holes. Thank God we have soft furniture!

    Posted by Picasa

  • All the cool kids are coming…

    AssalamuAlaikum Everybodies!

    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.

    JazakAllahuKheiran!

    Photobucket

  • Hat? Okay!

    Hat? Okay!

     

    Iman Helping Mar 2009
    Iman is helping. Thanks kid.

    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.

    Admiring the handsome little boy in the mirror.
    Admiring the handsome little boy in the mirror.

    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 on the divider between the men’s and women’s sections, and frankly speaking, I was seriously offended. Yes, my kids were making noise, but children make noise in the masjid all the time. I was still praying though, and so my kids 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.
  • HE SPEAKS!

    HE SPEAKS!

    Photobucket

    Khalid’s favorite word in the entire world:

    OKAY!

    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.

    Best. Word. In. The. World.

    Okay!

  • The Art of Khalid BinWaleed- The Early Masterpieces

    Khalid,Khalid

    As seen in the Le Gallerie de’home, Blue Square (left) and Scribble Star (right)

    Both pieces are said to represent the artist’s passion for geometry.

  • 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.

    *beam*

  • Time again, for another 2 am post.

    HF is en route to Australia for a bidness trip, and we, The Circus, are left to our own devices for this week. Apparently our devices involve rolling around the floor sucking on building blocks. Well, those are Iman’s devices anyway. She’s the reason I’m up cooking instead of down snoring- I woke up at 12:46 to giggling and pulling of the strings on my hoodie, which, in addition to fist-sucking and foot-waving, is Iman’s way of letting me know she’s fully charged and ready to party.

    So here we are, it’s a party.

    (Wave your feet in the air like you just don’t care?)

    Khalid began ABA therapy last week at the autism center in Dubai, Alhamdulillah, and it’s amazing to see him already picking up the things he’s refusing to learn there. :p Khalid will resist instructions to clap his hands until we’ve used up every tissue in the box and he’s blue in the face from crying, but he will go home at the end of the day and furtively clap his hands in a corner. The therapists have told us that they can see he is intelligent, but he has compliance issues. In other words, he will refuse to do something solely because you asked him to. That makes sense, after all, the motto Khalid seems to live by is ‘You and What Army?’

    Alhamdulillah, he has made progress though, because he’s starting to realize that no matter how hard he fights, he won’t be released from that crazy place where he’s made to stack blocks against his will. Poor baby.

    Iman is learning things too. Just this week, she’s started a precurser to crawling- the commando-wiggle. I’m sure it has a real name, it’s that thing you do under barb-wire on your elbows while pinned down by enemy fire. Whatever it’s called, she used it just now to wiggle under the desk and start pulling my pant leg. Two days ago, she used it to get to my feet and diligently suck my toe, thereby entering the record books for ‘Most Adorable Distraction During Prayer By A Baby Ever.’

    Well, Iman is rubbing her eyes and wriggling unhappily, so I think maybe the party is over. Let me whisk her off to bed. Khalid and I have to hit the road at 9:30 am to get to his therapy on time.

    Peace & Tarka Grease!
    -The Circus

  • You guys…

    If I’m not responding to my comments it’s because I feel… embarrassed.

    I am not brave, I am not strong, I am not amazing.

    I alternate between insane optimism and resigned dread.

    I am not the Super-Mom of a Special-Needs Child, I am the “So, how do we cope today?” type.

    I am pushing forward because the only way out is through.

    Still. It’s warm and fuzzy to feel believed in though.

    🙂

  • The Autism Post, Take One

    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’s     basically you)

    __

    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*)

  • By Zeba, The End.

    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.

  • Toddler Anxiety Issues

    I must have the only two year old in the world who can cry so long and so hard that he gives himself a nosebleed. Or starts hyperventilating. Anyone else have anything similar?

    Update: A few months later, Khalid was diagnosed with autism, and suddenly, things like this made sense. 🙂