Wednesday, February 24, 2016

Mo making his bed

Your story

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Tuesday, February 23, 2016

Snippets from my memoir # 3

By the time he was eleven years old, signs of Zaki’s puberty had become fairly evident. Not only did his voice break and the down on his face and underarms become heavier, he would walk around with an erection, oblivious to the world. So as any self-
respecting parent would advise, here is what Zoya would say to him pointing at the subject in question, “Zaki you can’t walk around like that sweetheart. You have to push that down or go sit on the pot and put cold water on it.”
“I can’t help it mama”, Zaki would say with not a care in the world. He had no idea of the implications of an erection, till Zoya took it upon herself to enlighten him.
“I know that you can’t help it Zaki and its something very natural beta. All males go through this. You know this means that you can make a baby if you...,” Zoya was explicit and to the point in educating Zaki about sex. She did not know how much of what she told him, Zaki understood, but her objective was to make him conscious of his erection so that at least he knew it was not right to walk around with it. The topic of ‘sex’ would come up every once in a while as Zaki became more and more aware of his manhood and the opposite sex. Zoya was least embarrassed to elucidate on the subject, since Zaki was not a typical teen and needed the matter explained repeatedly.
Unfortunately, the only direction that Zaki was not growing was upwards. He had always been short of stature but the onset of early puberty proved to be detrimental for his height. Zaki managed to grow till five feet and no more after that. A bone-age x- ray had revealed that that would remain his maximum height.
For a child who had a fair amount of awareness about himself, as could be gauged by Zaki’s conversations, a short stature, where clearly his brothers were going to shoot past him very soon, presented a challenge. Despite being told that, “You don’t necessarily grow taller with each birthday,” Zaki would insist the day after each birthday to measure his height with a defiant, “I am older and so I must have grown”. His hypothesis was amusing to his brothers who would laugh at Zaki in jest, but to Zoya it was heart breaking that her son who already had a much more challenging life than the other two had also been short changed in the area of physical growth. She prayed from the bottom of her heart that Zaki would gain an inch or two, for hadn’t Uncle Noor said

that if she wanted something desperately enough, Allah would grant it to her? Astonishingly, no matter how hard she tried to pray for Zaki’s height, the prayer never felt sincere. Every time the words came out of her lips she knew in her heart that they would not be accepted. This only meant one thing; perhaps growing taller was not in Zaki’s best interest. Allah Mian knew best and at times what seemed unfair was actually a blessing in disguise! 

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Saturday, February 20, 2016

Listen up autism moms and dads!

It wasn’t till last year that I was told that Mo has a language disorder as well as ASD (Autism Spectrum Disorder). Suddenly instead of one there were two diagnostic labels: ASD and ALI (Autism Language Impairment). Wasn’t language impairment part and parcel of ASD? At least that is what I had always thought. Apparently I had been wrong! Not all children with autism have a language impairment but some of them do.

Would it have mattered if I had known of the ALI concurrent with the ASD, considering since 3 years of age Mo had been receiving speech and language therapy (SLT) anyway for his speech delay? The answer to that is ‘yes’ it would have made a difference simply because as MO’s current S&L puts it, “ if parents know this is a possibility it may help them to understand their child's language difficulties more and could mean that they seek or fight for SLT to assess language in detail and support language in their ASD children”.

Mo had been non-verbal till 6 years of age and after he started talking his language development continued to be way below average. I had taken his language difficulties in my stride believing that S&L delays were part of the spectrum and treated the issue as such. Where he was getting OT (Occupational therapy) for his sensory motor development and TEACHH  and ABA (Applied Behaviour Analysis) respectively,  he was also getting S&L for his delayed speech. However, when Mo was around 12 or 13 years old he stopped receiving speech therapy as it was felt that he could communicate well enough, or so it seemed. Neither I nor any of his therapists emphasised the need to continue. Mo’s IQ scores over the past 10 years, though somewhat  inconsistent, suggested a mild intellectual disability and sub-consciously for me the test scores put a cap on Mo’s cognitive profile and his prognosis; he was autistic and it followed that his language was going to be impaired. Hence as Mo grew older focus shifted from ABA, OT and SLT to social skills development and Mo began to receive more behavioural and psycho-emotional interventions. SLT was relegated to the back bench as Mo’s behavioural issues related to puberty took precedence.

At 17 years of age, Mo went to boarding school in England. It was purely coincidental that St. Catherine’s specialised in speech and language difficulties. In my search for schools for Mo, I had been looking for autism specialist schools but St. Catherine’s, though not categorically specialising in ASD, fulfilled most of our requirements.  Undoubtedly it was God’s plan that Mo end up there for he was diagnosed with ALI  for the first time.

Subsequently Mo started receiving intensive S &L intervention, something that he had missed out on for so many years simply because I had not been aware that his language impairment was separate from his autism and required as much attention. I am convinced that Mo's over all learning was impeded to a significant degree by challenges in the area of language which should have been at least as much a focus, if not more, as any of his other therapies.

 So when Mo’s SLT at his current school mentioned that Mo had ALI plus ASD but no cognitive delays in general I was blown away. How is it that no one had told me this earlier? After all he had been seeing all kinds of therapists for the past decade and a half.  In answer to my confusion Mo’s SLT clarified that “autism is a well known diagnosis and language impairment/disorder is less known. More research is done in to autism than language impairment so actually all of these factors could be linked to why you were not told when Moeez was younger, language impairment alongside autism was less well known and autism always seems to 'trump' a language impairment”.

So heads up to all you mummies and daddies out there. Do watch out for a language disorder if your child is on the spectrum and you think his/her language is not developing normally. I know labels can be cumbersome and a lot of people are anti-labelling,  but one cannot deny that they can guide you in the right direction. Had I known of the extent of Mo’s language impairment I would never have stopped his SLT. Also in our daily interaction I would have paid more attention to his receptive language for in retrospect I realise that he had been masking his comprehension of words and commands through the years. A lot of times when I thought he understood certain vocabulary, he was really guessing at the meaning. Since his diagnosis of ALI, I am more switched on about new words and phrases Mo tries to incorporate in his language and test him in round about ways to gauge his understanding of them. Needless to say Mo's language, receptive and expressive, has improved significantly since he went to St. Catherine's. Though the developmental gap between him and his peers is huge, he is strutting along his trajectory at a noticeable pace. More importantly he is now aware of his struggle in the area of language and is learning techniques to manage his challenges within social contexts.

Thursday, February 11, 2016

Social skills art therapy group can be a lot of fun!

The joint artwork

Running an art therapy social skills group for children on the spectrum is not only rewarding, it is a lot of fun as well. Members of the group can compliment each others strengths and weaknesses resulting in benefits for both sides.

Take the case of Ayla (pseudonym) and Tariq (pseudonym) who constitute a small group of two. Ayla (girl) is 13 years old and Tariq (boy) is 8. They have high functioning autism; possibly both would qualify as having Aspergers before the diagnosis was wiped out in the latest addition of the DSM (Diagnostic and Statistical Manual of Mental Disorders). Anyway to give you an idea of their abilities, both children are in age appropriate grades in schools that offer some degree of support and have good language skills. Their speech is semantically and syntactically correct but both face challenges in the area of pragmatic language. Ayla and Tariq are rigid in their own ways but the latter is much more challenged in seeing things from the other person’s point of view or perspective taking, whereas Tariq is considerably more perceptive.

They were put together in a group for art therapy as their cognitive profiles are quite similar and so are their needs, in varying degrees.

In their most recent session both Ayla and Tariq were asked to share the same piece of paper to draw something. Usually they are allowed to choose their own paper but that day I had pasted a large sheet on the table in preparation of the session. They were given freedom to choose from a range of art materials but both opted for paint. Before directing them to this joint exercise I made sure to explain what was expected of them. For instance, I told them that they could use any part/amount of the paper, draw anything that they liked and move around the table, change places etc.

The idea behind such a directive was not only to study the dynamics between the two children but to take the opportunity to encourage communication, sharing and tolerance. So for instance, both children were encouraged to share one palette of paint which they both filled up with pigment, as well as brushes from the same container. Sharing paint with another person is not an easy task especially if one does not like to mix colours and the other does. It is a great lesson in tolerance and sharing.

 Once Ayla and Tariq began to paint, the challenge to have them work as a team became harder. Both children made a rigid boundary between their artworks. They divided the paper into two exact halves, treating it as two separate sheets rather than one.  Ayla was much more conscious of her boundaries than Tariq who tried to sneak some strokes of paint to her side but she firmly told him to stay away. As was expected both children also stuck to their own ideas of what they wanted to make, resulting in two very different artworks on one piece of paper. They were allowed to continue for half of the session to work on their own sides as long as they shared the equipment. Tariq was more curious about Ayla’s art work which was very schematic whereas his own seemed to veer more on the abstract. He attempted to make a few comments on her imagery but Ayla was only concerned that he not invade her space and remained focused on her work.

Halfway through the session I decided to stir up things a bit. I told both children to swap places to work on each others artwork and try to enhance it according to the wishes of the other. The idea was not to cause unnecessary aggravation but to challenge the rigid boundaries of both participants as both children would surely leave their distinct mark on each others artwork. For instance Tariq was asked what he wanted Ayla to do on his side and vice versa.  Thus, he told her to paint one hundred windows on his artwork which resembled a brown rectangle and she told him to fill up the white areas in her landscape with  the colour blue, making sure he did not paint over any of her work.

This occurred after considerable resistance from Ayla’s side initially as she was upset that she had to share her artwork with Tariq, whereas Tariq was more compliant but a little nervous about making Ayla angry if he did not paint according to her wishes.

Naturally Ayla did not paint a hundred windows and Tariq ended up spilling a few dots of paint on Ayla’s landscape though the poor guy tried to be very careful.

At the end of the session both children were asked to talk about the artwork as one piece, since Tariq’s side looked like a building and Ayla’s could have been the garden on the side of the building. Both parties really struggled with this instruction and were unable to integrate both pieces of work into one, even with prompts. I ended the session with praise for both and a ball game.

The session above laid the foundation for the ones that will follow in future. It highlighted the strengths and weaknesses of both children which will be targeted to promote a friendship/camaraderie between them. The hope is that the learning within the art room, the positive and sometimes negative experiences will better equip these children for social settings outside the art room.

Friday, February 5, 2016

Snippets from my memoir #2

As part of my blog I want to share snippets from my memoir 'Wrapped in Blue' to raise awareness of ASD and destigmatise mental illness.  Hence the following...

She could sense Zaki straining and pressing into the cold, hard marble in the next room. His young bones seeking, almost pleading, satisfaction from the rigidity of the cold, hard surface. As his limbs bore into the compactness of the floor, Zoya’s already constricted chest tightened a fraction more with despondency and pain. She was tired, so tired. She should be picking Zaki up from the floor and redirecting him to another activity . . . but she was just too tired right now, too tired.

In addition to coping with the weight of Zaki’s demanding treatment schedule and 24/7 follow-up, Zoya had to deal with how crappy she was feeling. Her plate was very full, and she was drowning. The feelings of helplessness were compounded by the knowledge that she had no choice but to keep functioning for the sake of her children and that she couldn’t afford to lose control of her life. Ammi had always said that one could survive anything for one’s children. She would too, if only she could stop feeling.

Many a night, Zoya spent crying silently into her pillow, stifling her sobs so that Amaar would not hear her. If he was not willing to help her with her anxious and depressed state, she was not going to ask either. Other nights, when it felt like she could not take it anymore, when she felt scared of losing control, she would call out to him from sheer panic and ask him to just hold her till she could fall asleep. Zoya pined to wake up from the nightmare of her depressive state! 

A crisis has the ability to bring out childlike characteristics in a person, where the boundaries between reality and fantasy get blurred. The desire to regress into a shell and revert to an age in which fairy tales exist, where, if you wish hard enough, dreams can come true, is just a temporary escape from the harsh absoluteness of trauma. Alas, for Zoya, regression and denial were not an option. Her children, especially Zaki, needed her, and she had to deliver. 

To purchase a copy of 'Wrapped in Blue' click on the following link:

Tuesday, February 2, 2016

Mo making hot chocolate with a special ingredient!

Here is Mo making himself a mug of hot chocolate with a secret ingredient! Any guesses?

The answer is coconut oil, 2 tsps to be exact!

Not exactly my cuppa but then there was no other way of getting him to eat/drink coconut oil that everyone is raving about. So here goes....Click on the link to see chef Moeez at work!