Our Road

In my efforts to reach out to others like myself in my community i.e. others living with disability, I have started to run in to inspiration upon inspiration.

My encounters so far have been with other Muslim families who are living with adults with learning disabilities, mostly autism.

From time to time, I will chance upon an Internet article spotlighting some shining star person with autism, who beat the odds and made it to college, or made an independent life for themselves.

In my real life however, I have sat down with young men some a few years older than me, who along with their families are still engaged in a battle with their disability, with the law, social services and community programs. It is far from over for them. These aren’t hopeless people who have laid down arms. These are optimistic people, bright people, hopeful families who are still fighting for something or the other.

It is an incredibly sad yet strangely inspiring experience.

The inspiring part is they have seen the worst and they are still going. It is a special treat when the adult with the disability will speak for themselves about what is important to them and what kind of support they are looking for. It is not always easy for them to articulate, but to see someone who has come this far with the kind of barriers they face, the kind of barriers my son faces, is a beacon of hope for me. I don’t know where Khaled’s fate will take him, but if I can get him to where some of these young men have come, despite the daily frustration they face, then I will have considered it a job well done.

The sad part of it of course is the increasing isolation a person with intellectual disability experiences as they mature. There are not many ways to occupy your time when you leave school. Despite being reasonably verbal and intelligent, all the adults I have met have not been able to go to university. They will not be going to colleges and getting qualifications in psychology, public relations, plumbing or mathematics. That only happens in the movies or in those highly publicised Internet stories.

They are from happy, balanced families, with hard working parents looking for ways to help their adult children occupy their time. Some of these very high functioning young men face a lot of frustration not being to able to “be of some use”, not able to socialize, not able to have anyone to share their lives with. Siblings no matter how supportive, have started their own lives, have their own children and families. For the lower functioning ones, ageing parents are the only voices remaining.

K and I are on this long road, together. We are alone now and inshallah he will have siblings. Inshallah they may be Neurotypical and will love and cherish him, but in the end we are on this road alone and when the road ends for me, K will be on this road on his own.

This perspective makes current government help for young person’s with autism seem like crumbs, or less. Hundreds of families, pinning all their hopes on the few crumbs the government throws their way, need to focus on long term solutions, life style changes, day programs for adults and counselling.

This is autism reality. Families need help now to deal with this reality.

A year of RDI

We are coming close to a year in to our RDI experience. I have to say that when it came to choosing therapies for my child, I chose to go with my instincts, what “sounded right” in random studies I could find online, and what made sense to me.

I am no scientist-practitioner and it was difficult to make sense of studies and journals, and then make the important decision about where to invest our limited resources.

I chose Verbal Behavior (ABA that deviates from the classic Lovaas. See Mark Sundeberg) and RDI for my son and a year later we are in a better place. Sometimes we forget how much better it is than last year. Although we don’t have a fully verbal child or one that can fit in without being noticed with his peers, we have a child now who is slowly accepting us as his guides. He is getting ready to learn. He is less afraid and less anxious. He is happier.

We have a team of wonderful people who work with him and truly understand him. They don’t follow a formula, or a manual because there is none.

If someone asks me how many hours of “therapy” K gets in a week, I can never say. There is paid therapy and then there is time with us. We are usually constantly working.

My goal is not to teach K as many shapes and colors as I can before such and such age. My goal is to teach K to be willing to learn from us, from anyone, from this world. Every moment that I spend trying to get him interested in activities, that is the goal.

Referencing

I often notice babies in elevators, buses, restaurants and other public places. When I glance at them and they meet my gaze, the often immediately look towards their guardian before they glance at me and give me a response.

That is my goal. That K looks to me to learn about this world. That he looks to me to gain perspective, to ask, “What am I supposed to do now?”

That is not “eye contact”, because although you can teach someone to look at someone, how do you teach the underlying motivation to look in the first place? Why should I look at you? What will I get from looking at you? Why does your perspective matter to me?

That is referencing.


K references more and more now. He references now just to share or to “check” that our expressions are the same or similar to his. That we are indeed experiencing what he is experiencing. To check to see if he did something right, or to share his pride when he has done something right without us telling him how. He references also to see my reaction to his mischief and silliness.

Learning from Competence

We accepted early on that the fundamental motivation for learning was broken in him. What is the point of using “reinforcers” to teach him language and labels and body parts, and bypassing the most significant reinforcement: Competence? How do you teach someone the value of competence? To take pride in your accomplishments? To value a teacher’s approval? To “care” about what they are learning?

This makes our progress appear slow. If we had immersed K in a typical ABA program, he would be a lot more “verbal” and compliant. He is mostly a single trial learner. It was tempting considering his challenges and strengths. But I chose not to because for me the cost of increased rote verbalisation and compliance was too high.

I have seen the pathology of it in the older children and adults that I have had the pleasure of meeting. I constantly learn from them.

I don’t want him to “exist” and look normal in a group. I want him to want to live, to be curious, to want to get in to uncertain, dynamic situations. I want K to seek open-ended interactions and not closed, static systems. I want him to truly understand choice, decisions and thinking, and not just scan for the right answers.

He needs to know that he can do things and when he cannot, he can still do them if he seeks our guidance. Not repeat a rote directive “help” without even actually trying or a taught script such as “This is too hard”, or “May I be excused”, when faced with difficulty, but be motivated to do things and find solutions based on memory of past success. Based on a sense of increasing competence.

There are many huge challenges ahead such as building on his communication, social awareness, language, grey area thinking, inflexibility, coping with uncertain situations and perspective taking, in addition to academic development. But I feel we are on the right track.

It takes a lot of conviction and strength in ones’s beliefs to keep going like this. How do you chart a course in to the unknown?

You are surrounded by other navigators telling you to go this way and that. Telling you how this and that thing recovered their child. In this sea of confusion, you are literally getting by on faith and wits.

Managing Uncertainty

When overcome with fear or anxiety, most of us revert back to familiar patterns or try to achieve a greater level of control of a situation.

Most controlling people suffer from chronic anxiety about situations or people they try to control.

It makes sense to me to assume that someone with a learning disability or severe autism would have a lot of anxiety in almost any situation. My son’s fear and anxiety explains a lot of his stims, interactions and chronic inflexibility.

Analysing a scenario from his point of view requires a lot of mindfulness on my part. This is not something that I am naturally programmed to do. I am impulsive by nature too! It is taking me a lot of practice and time to get to a point where I can observe, analyse functions of behavior, draw from memory, my knowledge of my sons’s behavioural patterns and then provide the necessary support or reaction to him at any given moment.

It is not straightforward and is an ever changing and evolving framework of deliberately slowing down my own thinking process and reactions, and coming up with the right set of actions to “scaffold” the environment for him to enable him to reduce his anxiety.

Example 1:

Every Friday I take K for a bus and train ride to a particular library. It is consistent, repetitive framework that I have developed and worked on, that gives me opportunity to:

• Use as reinforcement
• Use declarative language to build anticipation or just “discuss” what we will do
• Introduce and build on the idea of contingency
• Go out in the community and generalize behavior

It’s really a basic framework that stays the same but little things within it will change. Sometimes its really hot, other times it is raining or snowing. Sometimes the windows in the bus are open, sometimes the ac is on. Our favourite seat might be taken; we may cross the road from another spot and so on.

This Friday, I did not realize I had left my house keys in the car the night before. When it was time to leave I found no keys and had to get the superintendent to lock the flat for me. Friday bus trip is important to us, we build up to it all week, and I like to keep my promises.

By the time we were at the bus stop, the bus was already arriving. Usually we wait for the bus and I build anticipation and list the things we will do. When he spotted the bus approaching the bus stop before we got there, Khaled’s panic stricken face looked at me and said, “We’re waiting on a bus stop?”

The routine was broken. The bus was there before us. He would not get in the bus.

When stuff like this happens, a flag goes up in my head that says, “This is wrong. This is autistic. This is K being inflexible. I must do something to stop it”.

This line of thinking usually results in disaster in such scenarios.

I tried initially to tell him, “Its our Friday bus, its there before us, yay!” But it did little to calm him and he ran inside the bus stop, sat on the seats quickly, slapped the glass wall a few times and just stood there. I didn’t stop him, or talk to him; I just stood inside the bus giving him time to process what had happened.

His brain had already gone in to panic and there was no thinking going on in there, except “this is bad this is bad this is bad, I must restore normalcy”. Eventually he got inside on his own, gave the driver his ticket and chose his seat like usual. He did a muffled scream in to the palm of his hand, which I ignored.


Such is the nature of anxiety in the face of change or the most insignificant of differences in the normal course of things.

Imagine then how a child with autism feels in this world in which we live. What doesn’t change? Everything is always changing!

We had the longest stretch of sleepless nights and out of control behavior when summer began. Now nights are peaceful and K is back to his “usual self”.

It is so easy only view events from our perspective. We are normal, emotionally regulated human beings. We have learned to cope through years of experience and a childhood full of learning from the perspective of the more experienced peers and adults in our life. If you were incapable of learning in this way, you would be gripped with fear all the time.

This is the life of a young child with autism.

When stims increase, when sleep is lost, when behaviors are becoming unmanageable, in our house, it usually means that Khaled’s stress is high.

Build a framework to introduce uncertainty

Regulatory patterns, routinized activity, peace and quiet, patience, mindfulness, will get us through these trying times.

Parents must constantly ask themselves, “Am I giving my child enough time to process what I have just said or done?” Often I am shocked at the amount of time it takes K to process things. I have to reduce the channels of communication I use (face, hands, words, prosody). I must not take anything for granted (body language, physical proximity, moods, history and antecedents).

With things like the bus this Friday, it is a classic example of real life. Stuff happens. Even good, unexpected things that would excite a normal child can create high levels of anxiety in someone with autism.

Teaching a child to manage their stress, to find ways to re-regulate their physical and emotional state is in my (rather inexperienced, limited and humble opinion), the key to survival and continued progress.

We are always engaged in a constant struggle to find these “ways”. Walking is something that has worked for me in the past. I will just walk K around for a while. Singing a set of songs in a particular sequence, reading a particular set of books and so on. Sometimes nothing works. Sometimes he comes up with his own perverse ways to regulate (yawning, sticking his finger in his mouth and drooling, scripting movies and other stims).

You have to be careful what you stop your child from doing. Maybe what you think is weird and abnormal, may be the only tool they have to cope with uncertainty. Shaping stims and introducing less stigmatising and more productive ways to cope is the hardest thing to teach K.



I truly believe no amount of drugs or language will help him with the anxiety that stems from his inability to cope with his environment. For that we NEED to alter ourselves, and our environment. We need to give him more time to advance his cognitive abilities. K understands things like “later” “we will come back to xyz” now and we use these to help him with transitions. Before that it was just a case of managing behavior because he just did not understand the words. If we are leaving the playground or an activity, he did not know if we would ever return?

I want integration, I really want K to go to school and participate in community programs. But if he is just incapable, then why must we force it on him? Why can we not find another way to introduce uncertainty and anxiety-inducing situations in small amounts? I have not come across any program, any school environment in my area that is designed to do this for someone with autism.

So I am left with no option but to just find random ways to do it myself.

Owella and some summer fun

Annoyed with constantly being asked to look in the camera.



Splash pad



I got him to spray me and also a little girl who was interested. Then she got a turn and sprayed K. K was overjoyed at being able to find a way to interact with someone else. He is incapable of thinking of these things himself right now. I have to initiate. He also tries to be controlling, but we are working on that. It is a rare instance when we can find a kid who will willingly participate in something we invite them in to. Literally something that happens once every few months or so. Usually he plays alone, and children are too complicated, bore easily, bring too much variation and K escapes.




When I say its Friday, K knows its time for our weekly bus trip, "Friday bus". This Friday I forgot to look out the window, and we got downstairs to find it pouring. K was understanding and we went a little later when the rain slowed down a bit.

Here he is at the bus stop.

At least he could make real life sense of the intraverbal he has rote learned from his Verbal Behavior program. "What do we use in the rain?" and K goes "Owella" (For Umbrella).

Although intraverbals are tricky because he thinks there is only ONE right answer to a question. So if I ask "What else do you use in the rain?" or "What else do you eat with?" He keeps repeating the one answer he knows. How do you teach someone to think?

I know he knows the use of fork and hands for eating, and he knows what boots are and a hat, but to associate these with their function in words and then to use that information to answer a question, now that is a totally different set of neurons, and they aren't firing yet anyway.




But its nice to make a connection from rote language to real life function and it was easy to see K's brain click and his fascination with umbrellas is a bit excessive this week. He has since Friday repeated the script of our conversation every time he looks out the window.

"It stopped raining, time to go on a Friday bus". "We need a owella".

Too bad the sun has been blaring since Friday. I tried to take the umbrella to the splash pad and demonstrate its use to stop the sprays, but he was not interested. I will try again later. I got him a kid's rainbow umbrella, that he has been kissing, he loves it so much!

New Look

After repeatedly going over my long list of reasons for not wanting to wear a hijab, I have finally realized the ridiculous nature of my excuses and decided to take a step in what I feel is the right direction.

I have always been close to Islam so my reasons were not heavy ones like it subordinates women, or I will lose my individuality and freedom and so on. I grew up with and around Muslim women who wore all kinds of Hijab's and if I ever imply that any of them are subordinate, they may just snap their fingers at me in a "Z formation" and kick my arse.

Since I have always known it is the right thing to do, and have utmost respect for those who wear it and their struggle, my reasons were always sort of bordering on the vain, spineless and silly.

Such as:

• It will make my face look fat.
• How will I explain this to the Non-Muslim people in my life. They will be weird around me.
• People will judge me.
• I will find it harder to get a job when I decide to go back to work.
• I will be the target of Islamophobia and hatred. I so like to be popular and loved.
• What will I do with all my half sleeve and tightly fitted clothes?
• How will I take Khaled swimming?
• What will I wear when I go running? I love running outside.
• I will look ugly and will never be able to make it look glamorous like the other hijabi women because I am a Western, T-shirt wearing, non-glamorous, slob.

And so on.

Some of these remain to be resolved such as the swimming and running. The rest make me laugh.

That self assured grin in the picture is what I have been accessorizing my hijab with for the past couple of days, mostly because I don't think I have ever been happier about a decision. I can't stop smiling every time I look at myself.

Those who have known me a lot longer will remember that this is not the first time I have put this on.

My Hijab History:

At age 12, my mother bought me a white silk scarf that I enjoyed wearing. No one forced it on me. It made me feel protected. It was Karachi, and I used to travel by school bus. I liked the good vibes I got from other people. Most people in Pakistan highly respect the Hijab.

We moved to the Middle East. I stopped wearing it. I started going to a British School, my socks got shorter and my uniform was a knee-length skirt, shirt and tie.

At age 18 when I started university, someone I fancied told me that I should put it on. (Note to strong-willed girls: Never do anything just because a guy asked you to do it). Long after I stopped fancying this person, I kept my hijab on. It had become a thing of comfort and I also got a lot of encouragement from my peers. It was also Pakistan, so again people like it over there. Soon I was in a full length jilbab with pretty "look at me" sort of embroidery and cuts. Very Dubai (because we used to vacation and shop in Dubai in the summers).

It was flowy and comfortable. I did not have to iron my clothes in the morning, just put on the outerwear and head out. Everyone loved me. I was lazy.

Stopped immediately after moving to the West. It was post 9-11 and I was going to be very Western, I had decided.

Anyway, here we are again at age 30. This time I do it for no other reason than to please Allah. So I am hoping this will stick.

I will say however, that I have decided also never to judge anything anyone is wearing. Like me, someone in tight-fitting western clothes might be a few centimetres away from covering themselves. Maybe a person is just an enlightening meeting or experience away from coming in to Islam. You just do not know what is deep within a person's heart. Only Allah knows. Only Allah is the judge.

No racist or negative incidents have happened in the last four days of hijab wearing. In fact beautiful sisters have approached me and said asslam alekum in random places, which makes me feel very special I must say.

Alhamdulillah.

Senor Cara de papa

We love our Mr Potato Head toy. It is durable, versatile and there are opportunities for pretend play. K can be very rigid with his Mr Potato Head design.

He likes to use the same set of eyes, nose and mouth. He insists on a handbag hanging off Mr Potato Head's nose (I have no idea why) and the moustache is also one of his favourite items. It is close to impossible to get him to willingly change his design. You can force him, he will tantrum, but to get him to do it on his own, well I have never been able to do it.

Until now of course.

I made my own Mr Potato Head along side him (he was doing the same design he does, repetitively). I played with it myself, brushing Mr Potato Head's teeth using an extra arm as a "toothbrush". I also "cleaned" Mr Potato Head's ears and "poured oil in them".

(I know weird, but there is a story related to these actions. K hates having cotton buds in his ears but he will let me do it now, he trusts me more. My mother used to put a few drops of lukewarm mustard oil heated with garlic cloves in our ears as kids. She said it prevented infections and cleaned our ears. K despises this and I have only been able to do it twice in his life. He struggles and screams and it looks like we are slaughtering him. But he remembers it of course).

K decided to copy me, and made his own, brand new version of Mr Potato Head today. The pictures are blurry because I took them with the video camera.


You can see his Potato Head is upside down, with the green hat. He has taken to building it upside down, so it kind of looks like an ill Mr Potato Head. Using moustaches as eyebrows was a special treat for me. The one on the left is what I made. He did not copy it exactly, which is good too. I didn't ask him to. He took aspects of it that he liked, which is fine! He borrowed my pretend play ideas because he could relate to them.



You can tell when you have created the right amount of productive uncertainty in an activity, because K stayed engaged, did not change the design, but kept fidgeting with it. Almost as if he did it, he accepted it but was not quite at ease with his creation. Even though K is the kind of kid who loves to try new things, but once he does, he will make a rigid routine out of them. It is hard for him to break his routines.

This is not the first time he has broken his routine, without being asked or being coerced in to doing so. The last time we did this activity together, I made my Potato Head all goofy with shoes in the ears, and arms coming out from its eyes. A Picasso Potato Head and he tried that on his own too.

K's relationship with me has changed enormously since we started RDI. He cares about what I think of him, his behavior and performance. He allows me to break his routines, sometimes. He wants me to be part of his play, even if I am challenging his rigidity. I attribute all these changes to an increase in trust between us, which I attribute entirely to RDI.