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Bariah

Gluten Infraction chaos

After two weeks of gluten-infraction induced stomach problems, night wakings, all-day screaming, violent ear smacking and serious dysregulation, K is back to his regular happy self.

All he had were a few crackers at a Chinese restaurant. They serve these deep fried wheat strips with the soup, and he grabbed some and stuffed them in his mouth. I hate grabbing food away from him, and next time I have to remember to ask them NOT to bring those with the food.

I tried to think of other reasons, like a "stomach flu" or something, but he was not ill, just seriously uncomfortable and irritable and the infraction timeline fit perfectly with his behavioral and regulatory deterioration.

Its all guess work, this diet connection.

He is smiling, and joking around again. He is able to sit and get through a book reading with me. He has stopped smacking his ear like mad. Not to mention no more rank, smelly gas!

We just helped him through the two weeks, keeping expectations low, giving him exercise, water, lots of soups and limited his sugar intake. Alhamdulillah it worked.

Here he is enjoying his favourite movie, Monsters Inc. The first scene is a bit scary!

Stranded

There was a time when pregnancy and birth was a family affair. There were a host of women relations, neighbours and friends involved in everything from giving advice, making preparations, administering care to the mother before and during birth, to postpartum assistance and raising the child!

I don’t know what happened to that model of family life.

Today, there is one woman. She gets pregnant and sees her doctor for a few minutes every few weeks. There is housework, other children and all the internal and external responsibilities of managing a home, raising and educating the children and providing emotional, nutritional and spiritual stability. You have a tired man, who plays the role of father, provider, nanny, occasional housemaid and emotional support for the mother. This is expected to work and people are expected to thrive and live fulfilling, stable lives in this dysfunctional model. There is a lot of social pressure for success.

However this isn’t really any kind of model except an overfilled, overstretched balloon of existence, bursting at the seams. There is no room for anything to go wrong, because then the balloon inevitably bursts.

But things do go wrong. Throw in this volatile mix a mentally challenged child, a chronic illness or any other sort of breakdown and you have people struggling to maintain any kind of normalcy in their lives. The people in this model of family life are slowly being driven either towards developing their own mental health problems or stress induced physical breakdown.

The education that my generation has received and the model of successful life that has been defined for us, inevitably leads the members of this dysfunctional family to believe that the only way to make this model work is the acquirement of material wealth.

If I have more money, I can hire people to do things for me and delegate some of my responsibilities. If I have more money, I can send my kids to a better school, so they can have a better chance at acquiring more wealth and therefore will never need the help of any other human being, because lets face it there are no other human beings around to help them, so the only to way survive is to purchase stability.
If I have more money, I can continue to support myself in my old age. If I have more money, I can leave a large estate and people to care for, for my disabled child. If I have more money I can guarantee my happiness. I can make this work, if I just have more money.

And that’s what everyone is busy doing.

There are no extended family members, no friends, no neighbours, no helpful strangers, no elders or teachers or guides around to create the stable framework of family life that is central to the existence of mankind. The sanctity of the family is at risk.

There does exist an economic, legislative, spiritual and social system that makes the family and all the needs of a human being the center of its establishment. This is a divinely ordained system, because none other than the Creator of mankind can define a system that can help creation regulate itself and sustain itself within its environment. This system is lost and caught in the throes of innovation, division, corruption and chaos. The casualty is the human being, the family, my family.

I, along with the millions of other stranded humans on this earth are fighting an invisible force of change. Some people are so lost in the battles they have forgotten who the enemy is, what side they are on, what their purpose in life is and even who they are.

So most likely in a few days I will be off to give birth to my second child, who is coming in to this world to become part of this unstable, dysfunctional entity we call a “family”. I am expected to fulfil all my worldly and spiritual duties and put in a great performance.

A beautiful Nasheed for Autism (with subtitles)

I am so glad this song exists. I like the message in it of being patient with your child, of showing compassion, and also to look forward to the future with hope.

Khaled Today

Today Khaled went to Walmart with his therapist and she took him to the toilet. He loves hand driers (and all things machine) but he is terrified of those new hand driers that are really loud and expel air with real force.

He calls them "scary hand drier".

Today Khaled tried to talk about them over lunch and later in the evening.

Khaled: (Lots of gibberish sounds at first). You hand drier.
Me: Yes you went to walmart with Tina.
Khaled: Yes you walmart with Tina. You scary hand drier. You wash a hands.
Me: Yes its so loud, its scary.
Khaled: Yes its so loud. Scary hand drier. ABCD.
(There is a label on those hand driers. I think it says "Excelerator". He cannot read, but he calls that text ABCD because they are letters.)
Me: Yeah they are called Excelerator scary hand driers.
Khaled: You Chucky Cheese.
Me: Yeah you went to chucky cheese too. Its so cool.
Khaled: Horsey. Train.
Me: Yeah I love the horsey ride and you put coins in it.

I am excited when he brings up something to express himself, I don't care if he perseverates on it. These are the only words my son said to me all day. Some days he says nothing to us.

I tried to tape it, and get the story out of him again, but he doesn't like being taped too much and was having real difficulty saying anything to the camera. He was too dysregulated in the evening to even look at me or say anything or sit in one spot.



اللهُمَّ لا سَهْلَ إلا مَا جَعَلتَهُ سَهْلا وَ أنتَ تَجْعَلُ الحزْنَ إذا شِئْتَ سَهْلا

O Allah! There is nothing easy except what You make easy, and You make the difficult easy if it be Your Will.

Patience

These are not my words, they are by someone called Dr McMullin.

I really liked this little summary of what patience really means and where it comes from. It does not just come from shutting up and putting up, but from a real change in attitude and who you are as a person. Which is why it is difficult and a constant challenge.

Patience in RDI - What Good Guides Do



While fidgety children may be told that patience is a virtue, a philosopher at University of Arkansas says patience is much more profound than passive waiting - it s "the living heart of ethics".

The self-restraint specific to patience is oriented to the other person's ability to act. Letting a young child take his time tying his shoelaces, for instance, requires holding yourself back from doing the task for him. This "hovering attentiveness" is recognition and encouragement of his struggle. Your attitude is directed not to the goal of tied shoelaces but to the child's achievement of that goal. It involves both a willingness to share one's time with the child and an acknowledgement of the limits of human agency.

"In patience I share an orientation to the other's future that is attentive to the struggle involved in its accomplishment," Dr McMullin stated. This contrasts with impatience, which can include an element of contempt for another person's abilities or a refusal to acknowledge the difficulties of an activity.

Impatience is "a type of rage in the face of human finitude," she said.

The impatient person who taps a foot while someone negotiates ATM instructions communicates a sense of being offended, even wronged, by the failure of others and the necessity of sharing time with them. The very fact that the other person is in the world seems to take away from the impatient person.

Patience is different from tolerance in that it "involves a deeper form of recognition and accommodation of the other's presence as an individual struggling to act in the world," Dr McMullin observed. A person subordinates his or her own wishes and goals to another's future, sometimes a future they will not share. An individual practicing tolerance simply waits for the other person to walk away from the ATM, while a patient individual encourages the other person to take the time necessary for successful completion.

"Though we may not be able to characterize patience as a heroic virtue, the ability to accommodate and forgive the limits of human agency in its struggle for self-expression is the bedrock of our public life," she said.



I felt after reading this article, that so many people think they are patient, when in fact they are just being tolerant. As a parent I switch between patience, tolerance and impatience several times a day and need to try to be more patient. For this I need to literally step outside of my own self and really experience the difficulty of my son from his perspective.

Also people tend to think that being patient will just drain you completely because it will be so mentally challenging to be in such a state all the time. This is not true. I feel that in a state of submission to the difficulty of another person, and a state of true empathy, we experience greater ease. Whereas when you are just gritting your teeth and being tolerant, or worse, being impatient, you experience greater exhaustion and frustration.

Missing Autistic Boy Found in Mississauga

Robert Capovilla found after wandering off from his home on Saturday afternoon.

This happens a lot, with really sad endings. This was just down the road and it was a happy ending. I love happy endings.

God bless this kid and I am so happy for his family.

This could be anyone of us, high or low functioning, it doesn't matter.

At 4 years of age, K knows the way to our bus stop. I am not sure about the extent of his knowledge at 16, but I have high expectations. However when it comes to common sense, a sense of safety, awareness of the dangers of being on your own, those are hard to teach and there is no guarantee how much your kid will learn.

You can't chain a teenager to his bed. May Allah protect our children.

Canadian Association of Muslims with Disabilities

CAMD (Canadian Association of Muslims with Disabilities) are a group of Muslims who are trying to bring about social change and opportunities for inclusion within the Muslim communities here in the GTA.

I joined this organisation last year and have participated in their monthly meetings and a social event they held last Eid.


Disability within the Muslim Community

Since I moved back to Canada with my son's autism diagnosis I have been eager to find other Muslims families living with autism and other learning disabilities. I have been keen to find ways to include myself in the activities of Muslims who are often blissfully unaware of the severity of autism and learning disabilities (until it happens to them).

Other than lack of awareness there seems to be a general consensus that "making dua and doing sabr" (i.e. praying to Allah and exercising patience) is going to solve your problems. This is the advice I often get from my community members, who are very loving and supportive of us.

I love my sisters and brothers in Islam for the sake of Allah. However only making dua and doing sabr is not going to make these issues go away. There needs to be programs and a genuine effort to include families and children/adults with disabilities in your lives.

But call for volunteers, space in mosques for programs, funding and other help is ignored or just met with a kind of helpless apathy.

I don't know what it is. So I will use myself as an example. I am in this now because I am personally affected. However if someone had called me or asked me to volunteer at some event for say the blind, a few years ago, when we did not have autism in our lives, I probably would have behaved in a similar manner. My husband comes late from work, I am pregnant, I have got little kids that need to be put to bed, its a week night and so on could have been my excuses.

People do seem to come out when there is a social event that involves food and sitting around tables and talking, but when it comes to a regular commitment to getting work done, that is hard. It is hard because it takes away from your regular routine, you have to choose something else over what you normally do in your daily lives.

You have a lazy teenager playing video games in the basement, or a university student who is out wasting time on nights out, but when it comes time for involvement in such activities, it is getting in the way of assignments, exams and other more important things in their lives.

Ask yourself why?

CAMD Effort

CAMD have been trying to secure space for a drop-in night for children and adults with disabilities to give their families some free respite and provide an opportunities for the disabled individuals to interact with others in the Muslim Community.

Most of the mosques in the GTA have refused to provide space for various reasons ranging from liability issues to costs, to "Who will lock up at night after you guys leave". Seriously? You mean none of the young brothers, and responsible sisters who are lounging in their homes can't spare a few minutes once a week to take on the responsibility of locking up a few doors?

Our organiser, who has been running this thing for 12 years made a point yesterday that if they had gone to a church, they would have got the facilities, and maybe even a few bake sales.

I was so happy to see a young university student and a grandmother who has recently completed her ECE at the CAMD meeting last night willing to volunteer.

Where are all the passionate supporters of Islam and reprimanders of sin? Come out of your homes and enjoin this good. Take ownership and responsibility for your brothers and sisters. Don't leave them to go asking for help from other people when you have the time, man-power and the money. Do it like it is for your family.

CAMD are now organizing a Drop-in Activity Night every Wednesday from December 1, 2010 to June 15, 2011.

Time: 6 pm to 9 pm
Location: Applewood Public School
3675 Thomas Street, Mississauga

They need volunteers to manage the activities. They need funding and support.

Now that you have read this and know about it, you are accountable for inaction.

For more information you can email camd@camd.ca or just contact me and I can point you in the right direction.