We Will We Will Disgust You

My son has a behaviour, where when he is really upset (tears, angry, upset), he has to end it by breaking something.

No amount of deep pressure or other calming strategies work. It is a ritual and those who work with rituals know that they are HARD to undo, or just get replaced with others that serve the same function to the individual. It works for him, but not for us or the world around him.

At home it is usually the sliding doors of the wardrobes that he breaks. Or he rummages through the bin with the toy blocks, or throws them on the floor. Sometimes he hits himself on the head. Because the self injury is not an attention seeking behaviour or a sensory one, it only occurs when he has crossed the threshold of emotional regulation to that dark side where the only way out is exhaustion. Much like any typical person, who in a fit of rage will bang their own head (usually once suffices), crash their car, or something of that nature. One hit, and its all over.

This is very hard to manage when we are in public. 

Just this week he got in to this state in the car on our way to an indoor playground. A sequence of events did not go the way he expected. It was inevitable. There was no opening for me to prepare or intervene. 

So we got there, he seemed fine and even calm. But it was there, in his head, the need to go through his ritual, despite the fact that he had calmed down and cried it out in the car. Its not over, until ritual master says so.So he banged the toilet doors. I knew a storm was brewing. My other kids were in there, there was no way I was  getting out without a full tantrum and the disappointment of siblings.

What to do. I tried to bribe him with things. He was OK. He sat, had a snack, and there was no sign of any outburst. I should have known better.

Although I watched my son play appropriately on the slide structure for several  minutes, a few minutes later there was that wailing kid and an angry mom. He pushed some tiny toddler to the ground. Mom was livid. Admin was hyperventilating, saying we will have to leave.

I promised I would not let him in to the play area until that child left. I knew he would try it again.

Ritual master was satisfied. He asked to go back several times but I remained firm. There is no point in the punishment, but we have to do something right? He played out the ritual, anything after that is futile. He played with my phone. The family finally left after a long time. I asked him if he wanted to go back to play and he did.

Everything was fine.

Then he went to the washroom and came out with his pants in his ankles. Just a coincidence, not a deliberate behaviour. He won't put his pants back on if there is even a drop of wetness on them and he knows I have spare in my bag. 

Admin lady freaked out. I had to leave. Sometimes I just don't see the point of advocating or explaining. You can't educate everyone and in that moment, I decided it would be a total waste of my energy.

Plus he really should not have done that, but I guess in the excitement to go back and play he forgot. He is after all only 6 years old.

I am finding people's intolerance in our situation difficult to handle sometimes. As my son gets older, it gets harder. He looks normal. To them. I am not even sure if I can blame anyone for how they see him. How would they know?

Kids push each other, and do silly things. I feel we are harshly judged because in the moment when I see the looks, the way people talk to me, it is anything but respectful. There is something other than complain or concern in their eyes. It's disgust or hate.

We have a friend with a child with down syndrome. She is around 5 years old and she likes my kid. K likes her because she doesn't run away from him. She also lets him look at her belly button. I think its cute and innocent. But just this week a random woman came up to me with a disturbed look on her face saying how strange it was the way my son was looking at that girl's belly button. She meant it was perverted. 

Of course. Wouldn't little deprived Muslim boys be anything but perverted? Aren't we all perverted with our allowances for polygamy and no sex before marriage rule? Must be a genetic thing.

Ignorance is one thing, but disgust and hate is another. 

And you can advocate to ignorance, but you can't do anything about the other two.

And while I am at it let me put down a few other behaviors that I will no doubt get in to trouble with because of their strangeness. My son sniffs any new food we give him, before he eats it. My son sticks his hand in his pants and then smells it, almost like a reflex. He eats hair. He eats food off other people's tables. He randomly tells people he loves them. Sometimes he will go behind you and try to sniff your bum. If he sees any of your naked flesh, he will want to go and examine it (exposed bum cracks watch this space). And no doubt as he gets older, the list will get weirder and possibly more disgusting to the untrained eye. 

We are aware of all these things and we try to work on them, determining their function, trying to make the behavior extinct. But it is what it is.

Better Things Are On Their Way

I have been stuck in a cycle of negativity. Maybe it is some delayed postnatal hormonal mess. Maybe its winter and the repeat colds and flus.

Or perhaps it is the perpetual nature of the round the clock care of a toddler, infant and a 6 year old with autism. I find myself just sitting staring at my feet and that is all I really want to do. When my daughter starts howling outside the sleeping baby’s room because my son ran away with her bunny for the hundredth time, I feel as if I will burst. I become distant from Allah in my prayers, only to become desperate when salah ends and make dua because I know my salah didn’t really count for much. I set alarms for night prayers, only to just make fajr by minutes.

The baby’s night time routine, my daugther’s night terrors, and my son’s 6 year old habit of waking up in the middle of the night, makes for several broken sleeps and I am angrier and more disappointed in myself by fajr. I am irritable and refuse to allow anyone to make me feel better. If anyone knocks over one more cup of water/juice/tea left lying around, my jaws will break in to pieces from grinding my teeth. Something I do in my sleep and even catch myself doing during the day. Things that usually go unnoticed, like my son constantly touching my face, touching his siblings' faces making them wail in frustration, eating hair and wetting his underpants, all turn in to a kind of incessant psychological torture pushing my nerves to their dark side. No amount of coffee, snacking or facebook updating absorbs the venom of this negativity.

A good day is reduced to one where I don’t scream something at one of my children.

Everything is manageable and so productive, and then a week like this comes along. All my training tells me this is a normal, almost anticipated part of the curve. If I graph the ups and downs of this story over the years, I know it always precedes a major change. A change perhaps in the development of one of my kids (or maybe this time all three of them at once!)

Or maybe the change is within me. Life it seems often has a way of pulling us to a higher level of patience, greater ability and maturity, while we kick, resist, fight, being dragged, stumbling, feeling inept and stupid. Or at least that is the story of life around here.

So while I was lying face down on my bed feeling horrified with myself today, not even knowing where the baby was, I decided to get up and shuffle my way to them. They had found something to keep themselves occupied while mom tries to dig herself out of whatever hole she is in at the moment. What happens to one, affects everyone. We all go through these phases together. Development it seems is not mutually exclusive, rather our individual experiences will transform us all.

So all the mom's who have children at home with them, when the husband is not there and no one is watching, and you are doing your best to remember who is the real Rabb, fearing Him, know that there is no act, however small, that He doesn't recompense it in some way.

Through our weaknesses hopefully we will teach our children some compassion. Their adult experiences with mom, will hopefully allow them to think for themselves and develop an empathetic judgement and understanding of human behaviour. And children will welcome you with love if you go to them shuffling or you meet them running with enthusiasm. They are wonderful little humans in my life.

Working through Winter

Just checked the last post is dated November. That is how busy things have been around here.

The terrible weather and flu season has kept us under and indoors pretty much the entire season. Although yesterday I stepped out for a walk because of the freak 12 degrees Celsius. Reminded me of how much I missed being outside with my kids. Truly the best thing about this winter will be that it will come to an end.

Since I never really feel like I have done anything, unless I have stepped outside and touched some trees and rolled in some grass, I haven't really found anything motivating enough to pull me away from my massive todo list and on to posting something. Hundreds of posts have been written, all in my head, lost after I had stepped out of the shower, got out of my car or put down a finished cup of coffee.

So yesterday's very brief excursion through the creek trail made me miss my blog!

We have done other random things while being locked indoors for weeks on end. Things like learning how to read and sitting at a desk to get through several basic worksheets. No big deal really.

Right? Or I try not to make it a big deal to myself. Ok, it is kind of a big deal. However if we had not wandered the woods and trails for hours on end for years, none of this would even be possible. So when the big thaw finally happens, guess who will be the first one out with three little people in tow?

Until then, amuse yourselves with some interesting pictures.

My son wanted to recreate a "falling" scene on some ice puddles yesterday. I thought this was precious.

And while we are at it, here is a short video of my son reading on his online reading program. I do a lot of other activities to supplement his learning, but he has come a long way from stimming, scripting, behaviors and I feel is finally taking ownership of his own learning.


It has been possible because both K and I have not been fighting stupid battles with schools and IEP's. I have not been chauffeuring him around from one place to the next. Everyday I embrace the simple things, we follow a basic simple structured day, adding and changing a few things here and there, to make sure it is not rigid and learning still happens. His ABA program is separate from his academic learning right now.

He really wants to write things, although he gets very frustrated when he has spelt a word wrong. We have been writing a rough daily schedule that he really enjoys following. He tries to write words phonetically, but his own speech isn't a 100% clear so he often misses letters. I used to correct him gently, but I found that since he has realized he doesn't remember the spellings and will be corrected, he gets whiny and frustrated before we even start writing his schedule. Just shows that from an RDI viewpoint he still really really resists being guided or being in any kind of guided participation interaction. However he is learning, the hard way, that the things he wants to learn are just not going to come to him. Someone will have to teach him! Not sure how long K will take before he completely accepts this little fact. The fights are getting smaller and more manageable, but they are still there. This is why the basic RDI back and forths never worked with him. He was always smarter than the challenge, and he needs these functional kind of challenges like writing schedules, following recipes and other things the feels he owns, to allow others to guide and teach him slowly. In these frameworks we deal with his anxiety, slowing down and thinking and all of that.

Here is a picture of a schedule he wrote.



There is enough to challenge my son in his current ABA program and his homeschooling, plus two little siblings and extra curricular activities.

I am so grateful to have been given this chance to homeschool. I am grateful that I live in Ontario where it is my legal right to homeschool him. I am grateful to Allah subhana wa ta'ala who allows every single little thing to happen.

K still has challenges but we have a rythm now thanks to all the great ABA therapy he receives in the comfort of his home, to the RDI knowledge we have, and the wonderful homeschooling community that we are blessed with in Toronto.

No progress is linear. But we try to learn from our mistakes and continue on the path we have chosen.

I feel people have a very idealistic view of homeschooling. Once you realize and accept that learning does not happen in neat little steps and stages, that LIFE is learning, that is when you really let go of your inhibitions, and get in touch with your brave, creative and ambitious side. It is scary at first, but acceptance of any challenge also brings with it so much peace.

Who knows where we will be next year or what challenges the next week will bring? And that is just fine.

Dream On

It has recently been brought to my attention that more than five people read my blog. Yes there is that list of “visitors” at the bottom of the page, but I assume they are people who randomly end up on this page through a series of crazy search strings, like “autism soup” or “life and times of the chronically underachieving” or something like that.

I think even my mom has stopped reading it. Although my mom has never read anything I have written. She, like most of her generation of parents, was interested only in results. We were as good as our academic performance. That is not to say that she didn’t or doesn’t still love us unconditionally. We are just from South East Asia, enough said. 

Having an audience complicates matters for the inspirationally challenged. Suddenly I am clever and must produce some form of cathartic personal reflection that will resonate with readers on a regular basis. A temporarily impressed soul has also nominated the blog for some kind of award. I won an award once, by accident, for reciting a speech written by my teacher and memorized by me, at age 6. I had no idea what I was saying. Everyone was overcome with dreams of grandiose future accomplishments, which unfortunately led to a couple of confusing decades of misguided academic pursuits, but Alhamdulillah I never grew an inflated ego. I think because deep down, all I ever wanted to do was have kids and climb trees. Maybe if I win an award, my mom will start reading my blog.

In a recent Eid party conversation between married and the young unmarried, someone mentioned how marriage didn’t turn out to be all they had dreamed of because they had been living a princess dream. Prince charming driving up in a land rover, falling in love, glass shoe and little people who live underground and all that.  Because I am one of those people who never know what to say on the spot, but always come up with coherent thoughts upon later reflection, on the drive home I realized I never had a princess dream. 

I had another more toxic dream. I had the “Go girl, you can be as good as any man” dream. Possibly the greatest injustice to my gender, was (and most certainly still is) this desire to measure yourself in relation to man. If he can do it I can do it better. I was going to be aggressive and I was going to come out on top.  I am smart, I can wear a suit, slide down a pole, drive a car, have a career, be financially independent, run a marathon and so on and so forth. This notion is so profoundly ingrained in the psychology of women of my generation that I doubt I will ever be able to truly purge myself of it. If only I knew then what I know now, that I was measuring myself against a faulty standard at best, another creation, prone to error, failure, weakness, and great evil. What is a man but another kind of human? I am the other kind and we are not the same. What we really should be asking is if he can do it, why should I? Good for him, I can do a bunch of other things he can never do. Or better yet we, the two of us together, can do a bunch of things that each of us alone can never do so well.

How cruel that I denied myself the pleasure of enjoying my true nature. That all those years my mind, by attributing success to being able to do things men can, automatically reduced my femininity to something lower, weaker, humiliated. Just a woman, just a housewife.

Now I know the miracles I perform everyday cannot be taught and believe me when I say this (without an iota of arrogance) that I am GOOD. Not because of anything I did, but it is what I am designed to do. And oh what delicious pleasure I derive out of my daily accomplishments, because it is my divine programming. I am living the dream.

So what has to happen for us to know who we are and what our purpose is? Knowledge has to come to us and with this knowledge, Allah has to bless us with some wisdom. I feel perhaps what was missing through my childhood was access to real knowledge. Perhaps the previous generations of women were so content because they studied the divine book and the traditions, which nurtured in them a satisfaction with who they were. As female students of knowledge dropped out of the equation, and go girl feminism exerted its pressure on women, we were left with nothing but these two nonsensical dreams. Finite goals that completely put aside not just our true purpose of existence, but also our feminine nature.

When you come to understand the purpose the Creator has defined for women and how the divinely ordained way of life carves out our roles for us, then you truly begin to measure yourself against a completely different standard. We are not as good as any man can be or do, but our significance and value before Allah has no limits. We are as good as our obedience to our Lord, which is a standard that is enduring and one by which we can surpass any creation. We are the free and unhindered.

He Doesn't Care

We think we know what to teach our kids, but most of the time we are not even paying attention.

My son likes to ride on trains. We have taken many GO train trips, and the last time we went I decided to take some pictures and got him to stick them in some file folders. I printed out simple sentences about each that he could read. This has taken a few days, as we do a little every day. He has enjoyed that book and asked to read his "GO Train book".

Today I decided it might be a good idea to paint a picture of the GO train so we can add it to our growing book. He has been taking art lessons on weekends and coming home with some interesting work.

I know he likes to draw. He draws amazing things from his imagination and memory. Here are some pictures he has drawn over the last few months, that I managed to take a picture of.

He did a really great job of painting the GO train drawing I did, but couldn't overcome the urge to peel the wet paper and rip the picture. I found myself deeply frustrated by this simple act of not caring about the finished product. Made me realize that K doesn't really care about the things he makes or draws in the same way that we do. He doesn't place value on anything he has created, except that it may serve a function. A Lego truck can be played with later. A created book can be read later. But a painting? What can you really do with it? A craft? Or any such object that has no functional value, has no purpose to him and therefore no value.

Why do we display a painting, or save it? To admire it. To have others admire it. He has no desire to attain the admiration of others, he only has the desire to do a job well. He painted it well and that was it. He felt like ripping bits of it, and he did. It didn't upset him, and yet it upset me. I couldn't hide my disappointment. I gently told him painting was all done and he had to go find something else to do.

I sat there sulking and reflecting on the point of this whole exercise. Why did I want to make something in the first place? To do something together, to share some attention, to spend time together. We did all those things, but my attachment to the end product was clearly greater than my main goal, because as the end product got damaged, I ended the activity and therefore gave up on my goal.

I want to give up on several of my goals many times, for these reasons. He is not interested. He doesn't care. I have to make it interesting, but can I make it valuable to him? Only he has the choice or power to do that. I cannot bring value to objects or goals, no matter how interesting or beautiful I try to make something. He is the owner of his heart and his interest.

He has autism. He doesn't seek the admiration from a hanging painting. Is this something noble to be admired? Or is it some kind of deficiency in his human-ness?

Of course a little while he found me and said he wanted to do Go Train painting. I knew he would try to rip bits again, but who cares really. If he doesn't mind, then I don't care (too much). So he tried a few times, I explained I liked his painting and didn't want him to rip it. He dutifully drew the tracks and wheels on the picture to complete it. It was for me, to "make it right with mom".

He only seemed genuinely engaged when I suggested we write Green GO Train on the picture, listening to the sounds as I broke down the words with my voice and he "guessed" the spelling. "Train" I had to spell for him and it was interesting because once he actually wanted to do something, he completely accepted my role as guide to help him accomplish what he wanted to do: to write.



Who is the teacher again?

Newspaper Roll Structure

I rarely post craft and other project ideas. Mostly because I borrow other people's ideas and if they have already blogged about it, then why add to the repetition.

However, there is this one thing that my son's therapist came up with, that I absolutely have to share. I have not seen it online many times, except here: Life Size Building Blocks.


We have had a toy called Crazy Forts for a while.

You build things like this out of it. I like the concept, but it keeps falling apart though and I wish it would stay together longer. However it is fun building designs and going in and out of your life size creations.

Here is a structure made out rolled newspapers.

The rolled paper was really strong. It just didn't stand properly and kept collapsing. I loved it because it becomes an engineering challenge.

I always feel that we should do crafts and projects with kids that we find interesting ourselves. They can be simple like finger painting (which we love by the way) and don't always have to be something intellectually challenging for an adult, but if you don't enjoy making picture frames out of lolly sticks, then why make your kid go through that?

Here is the rolled newspaper structure.

My daughter is demonstrating how to hold it up and stand inside it. If she lets go it collapses on itself. Definitely something I will be revisiting as a construction and engineering challenge. The possibilities to teach out of this experience are endless. Even its collapsing and not working out perfectly for us was a teaching opportunity for my son. Dealing with the failure of your design is a lesson in life!

He enjoyed rolling the newspapers and watching the thing come together, holding things in place while an adult conceptualizes the design. You can draw layouts and structures like an architect and then construct what you have come up with. I love this thing. Coming up with a design for the first time was too complicated for him and we need to wait until he is developmentally capable and self regulated enough to add to the thing himself and make it his own.  However since he has proved that he is completely able to come up with his own design for things, with the marble run toy, I am very hopeful.

I just wanted to share this becuase it is a most excellent framework for teaching a number of things to a kid on the spectrum or any kid, regardless of age, verbal ability and so on.

I remember learning about structures and materials in A-level Physics and I remember trying to make a bridge that would hold a certain weight. I was hopeless at it because I was not trained to think like that, I was a text book kid. I knew the science but I couldn't apply my knowledge. The beauty of homeschooling is that you are the main student and you can re-learn everything, enjoy yourself, and transfer the love of learning to your children.

Survival Tip: Plan For Chaos

Here we are at a familiar place, as if we go around in space and time and relive the same moments. I raise my voice and lose my patience. My son gets angry and starts flinging his body against a door, stuff breaks.  Reason becomes clouded with emotions, and like ink through water, regret overwhelms positive thought. The clear vision that weighs ease against challenge becomes murky. Recovery requires everything to become slow and very still for a while.  When the darkness settles, perspective returns and you tell yourself that some lessons have been learnt, until you find yourself in that familiar place again, making the same mistakes.

I know what to do and how to do it, but in the moment I submit to something other than the intended goal. 

There is clearly something blocking my ability to move forward to the next level in self-discipline and control.

As a parent you have so much invested in your children, it seems an insurmountable task to suppress and swallow anger in the face of helplessness. However that is exactly what is required of a parent of a child with autism. A patient, mindful  brain that rises above emotion, over and over again. Not just a surface level calm, but calm on the inside, like an open conduit through which any negative feeling just passes the moment (or maybe few moments after) it is felt.

Coming out of a series of meltdowns or a difficult few days brings with it a sort of death of productivity. Projects lying around unfinished, task lists out the window, I feel as a parent of someone with volatile behaviour you don’t just need organization of thought , but a sort of executive level compartmentalization of life. On a personal level, this has to be my biggest challenge as a parent.

Winging it, crash studying at the last moment, sprint finish and a kind of deliberate disregard for structure, just isn’t cutting it anymore. Formal planning is just not my thing, I almost stubbornly repel it, trying to prove I can live without it, but I am afraid I need to train myself to plan.

 I know the difficulty and I know life is trying to train me to break out of my habits. Every time I come out of a bad place with my son, I need to be ready to pick up the pieces, and move forward faster. Reconstruction has to be quick, for everyone’s sake, so we can all move forward. These are the management skills required for this job.

I will say to new homeschooling mothers and those with similar personal challenges as myself, there is a fine line between taking it easy and irresponsible procrastination.  For sure the difficulty with autism can drain you and make planning and organisation a massive struggle, but when you know you can, just do.

That sweet time in the morning with your cup of tea, that few minutes in between various children’s naps, those few late afternoon minutes when you eye the phone wanting to speak to someone, whatever you have to give up, you give up. This is the time you have to sacrifice and use to plan and establish a structure for yourself. The inside voice is telling you that you deserve a few moments, and you do, but the satisfaction of a job completed will make you feel better. That is the true joy that you deserve.

 I don’t see any other way out of perpetual chaos for myself, except this:

Whenever you can, just DO however much you can. Be honest with yourself and stretch all major muscle groups at the end of every day.