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

It’s been over two and a half years since I was thrown into the deep end of autism parenting and just over six months since I started AutismUAE, and while it’s impossible to say that you’ve heard it all, one can assume that they’ve heard a fair amount.  But nothing I had ever heard before affected me like what I heard last night, first hand, from a behavioral consultant visiting from abroad.

She went to visit a family to assess their child.  She entered and made small talk, and asked where the young boy was.  They pointed her towards a room.

There she found, in an empty room, a little boy restrained and with his hands bound.

And that was how he lived.

Every day.

I’m not done crying about it yet.

So I’m home again in Dubai, 32 weeks pregnant and horribly sick- I’ve spent the last four days more asleep than awake, if you can count passing out punctuated by coughing myself silly as sleeping.  Today I get to see an ENT finally, Alhamdulillah.  We’re getting ready to pack the kids into the car and make a family trip to the hospital.  In the background, onions are frying.  Tonight, HF is making biryani.

A few days ago we sat down and watched an adorable anime called Summer Wars, which has a nice, non-violent, non-romantic story line that the kids enjoyed.  There was only one problem though- Obacha dies.  The old grandmother, who is the matriarch of the extended family, passes away in her sleep and animourning ensues.  And of course, Iman fixates on this, and a full two days after having watched the cartoon, she pipes up at dinner:

“Momma, what happened to the gwamma?”

-pause-

(HF looks at me expectantly)

“The grandma died and InshaAllah she went to Jannah.  Do you remember the story about Jannah?  Jannah is the most beautiful place ever, with castles and lovely clothes and yummy food!”

“Werizit?”

“With Allah!  Allah is up!”

“Up onna house?”

“No, higher than that.  Up past the sky.”

“Up inna stars?”

“Even higher than the stars.”

Khalid swallows his rice and says, “Moon.”

“Very good Khalid!  But Allah is past the moon too.  He’s higher than that.  And that’s where Jannah is.”

“Angel.”

-HF and I are collectively flabbergasted-

“Yes, the angels are in Jannah…”

“Angel fell down.”

*blinkblink*

“Shaitan wasn’t an angel, but he fell down to earth. You’re right.”

“Angels onna earth.  Angel is there.  Jumping.”

We turn and look towards the front door, where Khalid is gesturing.

“If you say so sweetie.”

The End.

Because it wouldn’t be right if I didn’t slather my blog in as much autism as my daily life is slathered in, this month, I intend to post as much as possible about autism.  Whether you want me to or not. :p  So here I go.

First of all, there’s this picture gallery of individuals with autism from around the world. Many thanks to  Hemlock who mailed me the link today.  I like to think that I’m seasoned enough to keep it together when talking/looking/dealing/interacting with autism, since not only do I do that at home with my own son, but also with the children and families that our therapists take care of, but I cried anyway.  Maybe it’s because I’m pregnant and slightly more emotional than usual, or maybe it’s because I feel for each of the families in the pictures.  I’m not sure, it’s a combination of both, most likely.  But I know I’m not the only one who gets hit by this unexpectedly sometimes.  A certain nice man who just happens to live with me (though I won’t say who) was once reduced to silent, manly tears by this Arabic nasheed about autism.   Me?  I bawled.  And I don’t even think I was pregnant when I saw the video so that kind of shoots down the hormones excuse.

Second of all, Khalid turned five this March, Alhamdulillah.  And Iman turned three.  Alhamdulillah.  My amazingly beautiful, vicious, unexpected little savages- who are studying Arabic in anticipation for their entrance exam to a bilingual KG program- are busy running, jumping, arguing, and whacking each other out of babyhood and into young childhood.  We’re praying that InshaAllah, come KG-2 in September, Khalid won’t need a shadow in school.  At the moment, Joy goes to school with him every day to help him, basically, learn how to learn.  He will always need some extra support, but if he can function independently in a school setting, then that’s a huge step towards independence in the real world.  Please make dua that Khalid can take that step, because the sooner he can pass for ‘normal,’ the sooner teachers stop handling him with kid gloves- an educational tactic which is the frustrating equivalent of ‘give the kid what he wants, don’t make the retard cry.’

I know they mean well, but when Khalid is asked to do something by the teacher that he doesn’t want to do and Joy is working hard to teach Khalid to listen for the teacher’s instructions and follow through, it’s utterly useless for the teacher to backtrack as soon as she sees expectations being placed on Khalid and say “Oh no, it’s ok! He can lay in the middle of the floor while everyone else sits nicely on the mat!” or “Look class, Khalid is helping us choose a song!” as Khalid is gleefully pushing buttons on the CD player in the middle of the lesson.

The teacher is, in essence, undermining her own authority as well as Joy’s, and un-teaching the compliance skills that we’ve spent over two years building.  Khalid’s motto is, and has been since birth, “You And What Army?”  When other kids in the center got over their initial resistance to therapy within the first few sessions, Khalid insisted on crying himself silly for over three weeks.  I would peek through the window in the therapy room to see him blowing bubbles- and sobbing.  Putting coins in the piggy bank- and sobbing.  Cutting toy fruit with a novelty-sized plastic kitchen knife- and yes, sobbing.  He is still remarkably stubborn, strong-willed, and very determined in very nearly everything he does.  He does not suggest, he insists.  His train does not say choo-choo, it says beep beep, and if you suggest otherwise, he will get angry.  RTA is not an acronym for Roads and Transport Authority, it is a word in itself and it is pronounced ‘ri-taa’ every time an RTA taxi, bus, or metro train pass by.

I digress.  Compliance has been one of our toughest battles, and I get really, really annoyed when I pick Joy and Khalid up from school and Joy is sighing from exasperation because the teacher let Khalid lay at her feet as she stroked his hair while the other children sat nicely on the circle and listened to the story.  (Teacher’s pet, literally?)  Joy has taken to simply removing Khalid from these situations by walking him out of the classroom, much to the teacher’s confusion, as Joy basically has to step in and interrupt the lesson in order to reinforce such simple requests as ‘we sit in a circle during circle time’ which the teacher neglects because she ‘doesn’t want to make Khalid upset.’

SubhanAllah.  Right.  I think I’m supposed to be talking about autism.  I am, really, but in a way specific to how people perceive a child with autism.  I realize that people are trying to be sensitive, but my maternal hackles are raised (and teeth bared, too) every time people treat Khalid as something pitiable.  Yes, fifty years ago they would have written him off as ‘retarded,’ because they didn’t realize what they are only slowly realizing now- that there is intelligence locked inside of body that fails the mind.  Many non-verbal individuals still have 100% comprehension of what is being said around them, or have remarkable analytical, spatial, mathematical, or artistic abilities that go un-noticed for decades because they cannot be accessed, but not because they don’t exist.

So there.

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.

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.

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.

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.

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.