title: Autism Awareness: Inteview with Abez

As a special feature for Autism Awareness Month (April) and as a part of Muslimas Oasis’ Blue Hijab Day initiative I’ve done an interview with sister Zeba, author of ‘Abez Sez‘ a blog about Life and Autism.

Zeba is the mother of 4 year old Khalid a Moderately Autistic boy, she blogs about her life with honest and often adorable & amusing posts about Khalid and his little sister Iman (who is Neurotypical, or non-Autistic). Zeba talks a bit about her experiences and shares a little wisdom.

Asalamualekom sister! Ok, let’s jump right into it, tell us first a bit about yourself and your family.

Once upon a time a Pakistani Muslim married an American Mormon and four of us happened.  I have two brothers and one sister, and with our powers combined, we were confused genetic mixups raised half of the time in Pakistan and half of the time in Chicago.

We were living in Pakistan when I met my husband, and I married him in 2005 and moved to the UAE, where we’ve been living since.  We have two criminally cute children, one of whom is autistic.

Your experience as the mother of a child with Autism is the purpose of our interview today, tell us where on the spectrum was your son diagnosed? (Aspergers, PDD-NOS, Classic Autism etc.)

My son Khalid is four, and he has classic autism, moderate.

Tell us the first things you noticed about your son that caused concern or set off alarm bells and at what age?

Being a first child, everything Khalid did set off alarms.  You know how it is- your first baby’s temperature is elevated by .4 degrees- Fahrenheit- and you’re calling the pediatrician at two in the morning.   But some things were more worrying than others. We visited numerous pediatricians about Khalid’s sleeping habits- he woke up every two hours screaming, day or night, usually less.  Every doctor we went to told us the same thing- he’s a baby, he’ll grow out of it.

By the time he was two, and he still hadn’t grown out of it, we had other worries as well.  He was completely non-verbal.  No ma-ma or da-da or ball or yes or no.  He didn’t crawl until he wasn’t almost a year old, he didn’t walk until he was 13 or fourteen months old.  Taken independently, these issues were considered minor, and were often written off as being ‘First Child-itis,’ or ‘Over Mothering.’  By the time Iman was born, and Khalid was two, he was silent, unresponsive, easy to mistake for deaf, and had begun to bang his head against walls and windows and doors, and scream if anyone laughed in his vicinity.  We took him to a pediatrician the first time someone suggested autism to us, and the pediatrician said, “Does he mind having his ears touched?”  We said no.  “Well then, he’s not autistic,” the pediatrician said, and to him, that was that.

In retrospect, I would like to track that pediatrician down and give him a piece of my mind as well as some autism awareness pamphlets.  It wasn’t until my sister, who is a science journalist, moved back to the UAE that autism came up again.  She had just written an article about autism and said to me carefully one day- “Look, I don’t want to worry you, but your son has all six of the major signs of autism…”  And that was the beginning of panic.

Once you had noticed these things, what were your first steps towards either working with him on your own or figuring out what was causing the issues?  When you decided to get an official diagnosis, tell us about the experience you had finding the right Dr’s and getting the right answers.

We googled and called and researched and got in touch with a variety of centers in the UAE.  Some of them are exclusively for locals.  One or two of them are subsidized and open to expats, and have waiting lists of six to nine months just for an assessment.   So we went the private, self-paid route.

Eventually, we managed to get Khalid an initial assessment at the Rashid Pediatric Therapy Center in Dubai, which is a wonderful place.  There was a team of three- a physical therapist, a behavioral psychologist, and an occupational therapist- who sat with us for a few hours asking questions and observing Khalid, and at the end of it, told us that we should have him properly assessed for autism.  Of course, I was in tears.  My worst fears had been confirmed, and on top of that, we were starting to understand the financial scope of what private autism treatment entailed.  In the UAE, there is no government support for autism treatment for expats.  When we see Khalid’s case manager, it’s $150 dollars- an hour.  The psychologist told us flatly- “You were saving up for him to go to college, right?  Well, if you don’t spend for this now, he’ll never make it to college.”

We had Khalid’s proper psychological assessment done at the Child Early Intervention Medical Center in Dubai, and after two sessions of kicking and screaming and flailing around, the doctor concluded that Khalid’s mental age was 13 months, and he was moderately autistic.  As depressing as that sounds, the assessment gave us hope.  How?  Well, when the doctor presented Khalid with piles of plastic tiles in red, yellow, and green, and asked him to place a tile in the correct color group, Khalid’s response was to angrily snatch the tile from her hand and throw it on the floor.  Wait- here’s the amazing thing- then he would pick up the rest of the tiles *of the right color* and throw those on the floor too.  That was the first, the absolute first clue that we had that there was some cognitive thought happening inside of Khalid.  Here was a boy who didn’t talk, didn’t play with toys, didn’t interact with people, all he did, all day long was stare out of the window or follow me around the house- he didn’t even do the ‘typical’ autism things like stack objects or sort toys by color, so to see him throw the right color toys was amazing, SubhanAllah.  Because that meant he could recognize what color was.

How do you think living in the Middle East affected that experience, if at all?

Living here has been a blessing as well as a challenge.  In the UAE, getting domestic help is commonplace and affordable.  When Iman was born, I got full-time help, and having the extra pair of hands, as well as the company of another sane person in the house was a Godsend, Alhamdulillah.  We also have a full-time ABA therapist for Khalid, who works with his case manager and takes Khalid through his ABA program and even accompanies us out on errands to help manage his behaviour.  Cindy, the housekeeper, and Joy, Khalid’s therapist, are part of our family, and without their help, I can’t imagine trying to divide my time between the house, Iman, and Khalid while maintaining any semblance of balance.  Being a mother is a full time job, being a housewife is a full time job, being the caregiver of a special-needs child is a full-time job, and in my case, being a corporate communications consultant is my part-time job.  I need help, and Alhamdulillah, in this part of the world, it is available.

The challenge of living here is, as I mentioned before, no government support whatsoever, and little institutional support.  In the US, I believe that the public school system is obliged to provide support for special needs children, and insurance companies are slowly being forced to take responsibility to autism treatments.  Over here, parents are bluntly told ‘we don’t work with special-needs children.’  I’ve been turned down by dentists who won’t work on Khalid, and had to fight to get Khalid into children’s play areas where the staff don’t want him inside with the other kids.  I remember talking to another autism mom about this, she had just come back from yet another rejection in the quest to get her son into second grade.  “I told them I’m glad they have a choice whether they want kids with autism,” she said bitterly.  “Some of us didn’t.”

What about family, what was your immediate and extended family reaction to your sons issues and subsequent diagnosis with Autism?

I think our families handled the situation better than others.  On both sides there was a huge sadness, and even some denial- but we have come eventually to acceptance.  I know other people who have to fight with in-laws who say things like ‘We don’t believe in autism,’ and think that the head-banging and developmental deficit are purely the effects of negligent parenting.

I understand you have a younger daughter who was born around the same time your son was being diagnosed. How has your sons Autism impacted her life, in both positive or negative ways?

Having help reduced the negative impact, most definitely.  Having a nanny meant that Iman was never left to cry by herself because I was trying to convince Khalid to stop hitting himself, although Iman was left at home in Abu Dhabi, four days a week, all day while I drove Khalid to Dubai and back for therapy.  It’s a 60-mile drive each way, and we would be out for six hours a day.  Alhamdulillah, once Joy joined us, the daily commute was reduced to a bi-weekly commute, and since then I get to spend about equal time with both kids.

I used to worry about how Khalid’s autism would hurt Iman, and one of the most worrying things was how he would push her around and knock her down without even meaning to.  This was an issue when she was smaller, but now that she’s bigger, I worry more about Khalid.  He’s a gentle giant, and Iman is a vicious and loving little firecracker who will hug Khalid one minute and bite him the next.

One very positive outcome of Khalid’s autism is the improved quality of Iman’s parents.  Both HF and I learned to be far, far more patient because of Khalid.  Before we knew he had autism, being kicked in the face would infuriate me.  Now, I barely notice it.  Sometimes, I don’t even wake up for it.  Without the challenges that Khalid’s autism brought us, we would never have been forced to up our parenting ante.  Because Khalid does not understand the greater disciplinary meaning behind being spanked, it is useless, and even counter productive.  So we don’t spank.  Khalid is terrified by yelling or loud voices, so we don’t yell.  Khalid cries and screams and pleads to get out of ABA therapy every single time he is taken, and we still send him in even though it rips your heart in two to hear him cry out Mama- a word that took him nearly three years to learn.  So what chance does Iman stand when she cries to get out of brushing her teeth?  Slim to none.  We’re not calloused, we’re just well-seasoned.  Also, we’re gluten-free, casein-free, egg-free, and largely sugar-free.  So Iman eats a healthy diet whether she wants to or not, and I think that’s a good thing.

What challenges do you face with having an Autistic child and a Non Autistic child? How does your parenting have to change between them or how is your parenting different from other mothers who have say 2 non Autistic children?

I can only answer the first half of that question, because I have no idea what having two neurotypical children is like.  I still haven’t gotten my head around what having one neurotypical child is like!  Iman actually smiles and bats her eyelashes when she’s trying to get out of a time-out, and she’s only two.  She hits Khalid when no one is looking, and runs away faster than he can start crying.  I say she’s devious, but maybe she’s just normal.  I’m not sure.   She is nothing like Khalid, who has little to no social complexity, and certainly no duplicity and no concept of manipulation.  Our parenting is the same between them, because the entire formula is to reinforce what’s good and replace or restructure what is bad.  And we use principles of ABA on her too, like the No-No-Prompt rule, which means that if Iman ignores the request to clean up her toys twice, the third time we walk her through the process, kicking and screaming if necessary.  What can I say, it’s tough being a toddler.

What impact, negative and positive, has your son’s Autism had on you as a Mother and as a person outside of your mother role?

As I mentioned above- Khalid’s autism has made me a better parent as well a better human, and above all, a better Muslim.  It’s easy to be at peace with Qadr and happy with the will of Allah when life is good and your children are normal.  Try being a ‘heart at rest’ when you worry who will change your son’s diapers after you die, and suddenly faith takes a good deal more effort.  It’s a real struggle, and Alhamdulillah, it has been a real victory.  That is not to say that I don’t wish Khalid were ‘normal,’ or that I don’t want him to be able to live independently and achieve such amazing feats as speaking a full sentence- I am allowed to worry for him, but I am required to have faith that Allah will provide for Khalid and care for Him from provision that is unlimited and dictated by Supreme Mercy, and that Allah cares for Khalid more than I do.  I’m not Khalid’s Rabb, Allah is.  And Khalid is a gift, a temporary loan to me from Allah, and even his autism is a blessing, because it is the catalyst for the ongoing improvement of my character.

There are many challenges we face with Autistic children, but they also carry many gifts and offer special insights with their unique perspective. Tell us a bit about your sons special abilities and special interests.

I wish it weren’t, but the idea that every individual with autism has unique genius-like abilities or interests is a myth.  Less than ten percent of autistic individuals have savant-like skills, and as of yet, it would seem that Khalid is not in that ten percent.

AllahuAalim. But he does enjoy drumming.  And his toy train.  And he loves Iman defensively and earnestly.  And sometimes he reads road signs and juice boxes, and in the dark, when he feels like no one is watching, he sings.  He’s no Yusuf Islam, and he doesn’t know all the words, but he sings bits and snatches of ‘Five little monkeys,’ and his ABC’s, and he waves his legs in the air and counts his toes, which this evening, were numbered at sixteen. 

Share some advice for parents who suspect their child may be on the Autism Spectrum.

Get your child assessed as soon as possible, to hell with the stigma, and ignore everyone who says they’ll grow out of it.  Your child’s future, their life- is far more important than opinion, and far more precious than reputation.  And if someone tells you they can ‘cure’ autism, kick them in the shins and run the other way, because 100% of treatments that are effective for autism are behaviorally-based.  Autism is not a disease or a food allergy (though my son and my daughter both have food allergies, and only one of them has autism) and it can’t be cured with chelation or banished with healing crystals.  It’s a test from Allah, and a genetic neurological disorder present from birth.

And some advice for parents whose children have been diagnosed.

Make dua.  Not because dua is magic words, or there’s a certain verse somewhere for curing autism, but because Allah created your child as well as your child’s autism.  And it may be nearly impossible to see right now, but there is good in it.  So ask Allah for patience, because you already have the strength.  Allah knew you could handle it, otherwise, he would never have tested you with it.  And Allah promises that he will never burden anyone more than they can bear, and that any trial or test or worry will be rewarded.  Ask Allah for guidance when it comes to sorting through the thousands of quack treatments to find the promising therapies, and for the faith to repel Shaitaan, who would tempt you to lose hope and become bitter.  You child deserves your love, your determination, and your optimism.  In some cases a child’s Jannah is in serving their parents, but in your case, your Jannah may be found in serving them.

Anything else you’d like to add?

You’re not alone, and it’s not your fault.

And of course! The link to your blog:

www.abezsez.com