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Premonition of Disaster

On 21 Jan 2012, In Autism, Dhuha, Family, by , 4 Comments

I had a sort of premonition of disaster. I tried to exclude myself from any responsibility. My attempt to dump the kids onto Zahira, while I hid in a dark corner somewhere, failed. As it was, I was stuck looking after them on my own.

The last time I had this feeling of dread, Dhuha took her faeces and spread them on her bedroom wall. After I cleaned her and her bedroom, I left her to play. Then she did it again, but this time in her sister’s room. It took ages to get it off the walls because of the textured wallpaper. My arm pained for two days. I hate textured wallpaper.

Last night, Dhuha snuck upstairs, while I was seeing to her brother. When I realised it had gone quiet, I rushed upstairs and found her and her wall covered with her faeces once again. The putrid but familiar smell was everywhere.

I put her in the bath, while I cleaned the walls. She loves the bath, so I allowed her to play. I went downstairs and started reading. About 10 to 15 minutes later, I heard a drip drip coming from the ceiling. I rushed upstairs and found Dhuha dumping large amounts of water onto the floor.

I stopped her and drained the water. Went downstairs and put a bowl underneath the drip. Went backup stairs and got Dhuha dressed. Came back down stairs to prevent the boy from playing with the bowl of water. Noticed that the ceiling was bowing where the drip was. I touched it gently and was shocked at how soft it was.

Dhuha came down and I prevented her from playing with the bowl of water. She went back up stairs. The ceiling bowed even more and finally came down. Abdurrahman was gasping at the dramatic scene and saying “Oh my God!”.

I cleaned the ceiling off the floor. It took a while. The hole is surprisingly large. When I went back upstairs to check on Dhuha and found that she had destroyed her nappy. I put her in the bathroom, while I cleaned up the new mess.

Finally, I gave her another bath. I didn’t let her play this time. Dried her off, dressed her. Went back downstairs and sat on the sofa and tried to contemplate what had happened over the last couple of hours.

Less than five minutes later there was a knock at the door, Zahira was home.

Man, That is Autistic!

On 26 Dec 2011, In Autism, Dhuha, by , 8 Comments

Dhuha is how I’ve always known her and to me, at least, that is normal. She is herself. She is my Dhuha.

Most of the time, I fail to see that any of her behaviour is abnormal, even if that behaviour is disruptive. However, there are times when I think, “Man, that is autistic!”.

Reminders of Autism

Dhuha comes down for breakfast. I give her a bowl of cereal. Suddenly, she jumps up, runs and puts the slightly out-of-place sugar container back to its perfect position. She then runs back to her seat and eats her food.

Abdurrahman is playing a game with one of the doors. He wants it closed. Dhuha dislikes the door being closed and forces it open. Abdurrahman is shouting at her to stop it and she is screaming at him. He hits her. She holds the door open.

As soon as Dhuha woke up, I changed her nappy. After a half an hour, Zahira changes her nappy again. Ten minutes later, it looks like she needs to be changed again. Zahira checks her and discovers that she doesn’t need changed, she’s stuffed four toy cars down her pants.

The joys of autism.

Behaviour of the Day

On 21 Sep 2011, In Autism, Dhuha, by , 5 Comments

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

Since Dhuha began sleeping on her own a few months ago, we have been able to confidently put her in bed, with a kiss and salaam and know that she would fall asleep with little trouble. Alhamdulillah, it was a major improvement for her and me, as it was a manifestation of far fewer bedtime troubles. If she was tired, she went to sleep, end of story.

Recently, a new behaviour has emerged, which I suspect is a result of the change in routine that starting school brings. By 20:30 – 21:00, Dhuha is visibly tired and ready to sleep or is falling asleep. Rather than stay in bed and sleep like before, she runs back downstairs and sits on the sofa. No matter how many times you take her to bed, tuck her in, kiss her and say salaam, she will run back down. It has gotten to the point where I have to remain in her room until she falls asleep or she just won’t stay in bed. Added to that is her sudden refusal to sleep with the lights off. Just last week, we had to make the room quite dark for her before she would sleep.

This morning I was woken by Dhuha’s crying. Finding her room empty, I went downstairs and found her sitting and crying on the sofa, with the lights on. I picked her up, took her to her room and lied in bed with her. After a few minutes, it was obvious that she was up for the morning. So, when I heard the alarm for fajr I got up with her. Once she was out of bed, her mood and behaviour improved immediately and she didn’t cry or fuss the rest of the morning and that’s with her brother troubling her.

Yesterday, I was thinking about what I was calling “the behaviour of the day” (not a lot like “soup of the day”), those obsessive behaviours Dhuha exhibits for relatively brief moments.

The following is a list of some of those behaviours of the day that I can recall from over the years. These are all things she did compulsively that has since stopped. Perhaps there are other things, that could be added to this list but have escaped my memory. Alhamdulillah, realising that many of her behaviours are temporary, no matter how difficult, helps me have sabr.

  1. Constantly wanting to be held and carried around. Never venturing far from mummy or daddy.
  2. Stacking cans/tins of food.
  3. Trying to run out of the house.
  4. biting, pinching, spitting.
  5. Playing in the toilet.
  6. Shredding her nappy/diaper.
  7. Using the bath as a toilet.
  8. Letting the water out of the bath.
  9. Screaming for hours at night.
  10. Spilling her drink.
  11. Wanting to watch television for hours.
  12. Kicking, pushing and hitting her brother.
  13. Eating polo mints.

All praise and thanks belong to Allah alone.

No Longer on Call

On 19 Sep 2011, In Autism, Dhuha, by , No comments

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

Dhuha is in her third week at Oaklands and she is still as excited as ever to go. Today she woke up early, ate her breakfast and got dressed. After Umm Dhuha left for her university class, Dhuha tried to to put her own coat on. Then she pestered me to take her outside and wait for her bus.

So there we stood, with a solid 10 mins before the bus would actually come and her tugging on my arm trying to get ever closer to the curb. Once the bus finally arrived she jumped on. I said bye to her, which she apparently took as me trying to take her off the bus. So, she tried to close the bus doors herself. MashaAllah, it was very cute.

Crucially, all of this happened without the slightest sound of discontent from her. Moreover, her home school book continues to be filled with glowing remarks.

I feel so confident sending Dhuha to school that I have actually entertained ideas of moving away from the telephone during the day. Last year, I was never sure if Dhuha was going to stay at school. I was never sure if a “tragedy” was going to require me to fetch her early. I feel such relief. Alhamdulillah.

Don’t get me wrong, I love Al-Aqsa School. I just don’t feel like it (or any mainstream school) is an appropriate place for a child with ASD.

All Praise and Thanks belongs to Allah alone.

Dhuha is Doing Well at Her New School

On 11 Sep 2011, In Autism, Dhuha, by , No comments

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

Since Sabah first started school, I’ve had concerns about my girls’ schooling of one type or another. I’ve written about school a few times, which gives a cursory glance at some of those concerns. I’ve not written extensively on the subject because of lack of time and the sometimes sensitive nature of events at school.

Dhuha’s schooling has been of particular concern. Once Zahira and I made the decision to move her from Al-Aqsa Primary School to Oaklands Special Needs Primary School earlier this year, I have stressed and worried. Alhamdulillah the blessed month of Ramadan came the month before school started and it caused me to forget all my school worries.

Just two days after we celebrated the Eid, Dhuha started school. Surprisingly, on the morning of, I was calm and relaxed. Dhuha was also in a good mood despite not sleeping much the night before.

Alhamdulillah, its been just over a week and I’m still feeling calm and relaxed about both my girls’ schools. Al-Aqsa Primary School is a wonderful school, filled with people who genuinely care about the Islamic upbringing of children. MashaAllah, I can say that even with exclusive insider information as a husband of one of their teachers and an occasional volunteer. My limited experiences with Oaklands have also been positive, especially so since Dhuha is obviously enjoying the time she spends there. For example, last Friday she forced me to wait for her bus outside because she was so anxious to go.

Dhuha’s Home School Book entires since the beginning of the year.

1/9/11

Hi,

Dhuha has settled in well into caterpillars. She had a few moments when she was upset this morning but this didn’t last long! she was soon exploring her classroom. She was a bit wary of going into the soft playroom and sensory room but once she went in she enjoying it and didn’t want to come back out.

She also liked playing in the sand, listening to number rhymes and printing a picture.

5/9/11

Hi,

Many thanks for completing and returning the “All About Me” sheet.

Dhuha has had a lovely calm day today. and enjoyed participating in gelli baff messy play and playing with ICT toys.

6/9/11

Hi, Dhuha has had a good day & enjoyed soft play, sensory room & dance this afternoon.

Dhuha became a little distressed this afternoon & was holding her tummy ? but soon stopped!

7/9/11

Dhuha has been happy today joining in all activities with little persuasion.

8/9/11

Dhuha has had another good day in school again joining in all activities especially outdoor play.

9/9/11

Hi,

Dhuha has had a good day and enjoyed puring water into the tuff spot to turn soap flakes into bubbles she has been a little unsettled at times – crying for no apparent reason. Hope Dhuha has a lovely weekend.

All Praise and Thanks belong to Allah alone!

Setting Boundaries

On 05 Jun 2011, In Autism, Dhuha, by , 2 Comments

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

I believe establishing boundaries for my children and ensuring they adhere to them is important. They help keep them safe from potential harm and out of trouble.

It has been my experience that when children have clear boundaries that they understand, they are generally better behaved. As long as you’re fair, consistent and take the time to explain the rules you have set out, most children easily conform. To me, Sabah has validated this point-of-view.

Dhuha on the other hand, has lived most of her life within unexplained, unfair and inconsistent boundaries. In the past, if she made a mess in the kitchen, we wouldn’t allow her back in. If she played with something in the bathroom that she wasn’t meant to have, we’d take her out of the bathroom. When she started eating sand, we took sand from her. In frustration, we would confine her to an ever smaller space.

Confining Dhuha to small spaces was a particular problem when we stayed at my in-laws, where she would regularly be restricted to just two rooms. Before that, we used to prevent her from going into the kitchen, bathroom and sometimes our bedroom, which left just three rooms for her to move around in.

Of course, that is unacceptable. Dhuha is an equal member of this family and when we moved into this new place, I was keen to allow her to have free access to every room in the house and outside, with the sole exception of my room. But, how do we allow her freedom to move about in her own home, without constantly chasing after her to stop her from smearing butter into the carpet on the stairs?

We have to set up boundaries, which she understands. Our solution has been to create a visual aid, which we place on things and rooms, which she is not allowed to touch or enter. My bedroom, the downstairs loo, the greenhouse and the outside gate, which leads to the road. We also carry around cards with the same image and every time she does or tries to do that is out of bounds, we present this card to her and we say “stop”.

It’s early days still but she seems to understand what the image is all about. Today, she removed the sign from the downstairs loo before she entered it. I’m hopeful that this will allow us to establish fair, consistent boundaries that she understands.

All Praise and Thanks belongs to Allah alone.

Interview with MuslimaOasis for Autism Awareness

On 06 Apr 2011, In Autism, Family, by , 1 Comment

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

Zahira and I recently did an interview with Emma Apple, founder of the online Muslim women’s magazine MuslimaOasis and the Autism awareness project BlueHijabDay.com.

The purpose of the interview was to raise awareness about autism within the Muslim community. Even though, I feel, I’m a poor autism awareness advocate, I was honoured and happy to answer the questions. I believe that each of us autism parents have something to share. Undoubtedly, our experiences can help people just entering the chaotic waters of ASD.

I would like to offer her my sincerest gratitude. I pray Allah ta’ala grants her every happiness in this life and the hereafter.

You can read the interview on the MuslimaOasis website.

About MuslimaOasis

(taken from muslimaoasis’ website)

Muslimas Oasis is a collaborative blog by and for Muslim (and non muslim) Women.

Our Goal and Purpose is to post articles and thoughts on issues affecting Women around the world from a Muslim Womans perspective. To encourage empowerment of Muslim Women (and non muslim women) and to encourage Muslim Women to stand up and use their powerful voice and powerful position in society.

We want to raise awareness of issues, eradicate stigma and stereotype, answer uncomfortable or taboo questions. We aim to encourage self awareness of body, mind and spirit on a personal and societal level.

About Blue Hijab Day

(taken from bluehijabday website)

Blue Hijab Day is an event started by Muslimas Oasis as a way to raise awareness about Autism, Aspergers and other Autism Spectrum Disorders. Our primary goal is to bring about more awareness of these disorders in the Muslim Community, a community which is sadly lacking in awareness and supportive resources for families living with autism. With that said, we very much welcome involvement from non Muslims and hope to bring about Awareness in the wider community through our efforts, we want Blue Hijab Day to become a mainstream awareness and fundraising effort with a Muslim face.

About Emma Apple

(taken from muslimaoasis’ website)

UmmHend is a kiwi mother of 2 who converted to Islam as a teenager in mid 2001 and has been known online ever since for efforts to spread understanding about Islam among Muslims and Non Muslims.

She is a Professional Web Designer, an Artist and a Published Writer, it was through her efforts for Islam that she became interested in web design and went on to teach herself and make a humble career of it.

She had all but given up on the online dawah (spreading Islamic information) efforts and finally, years later, Emma’s passionate opinions and drive to speak out inspired her to create a place that encourages women to use their voice and energy for something that will benefit them and their community, for positive affect rather than negative.

Without realizing it her original idea from 2001 came full circle. Muslimas Oasis is the matured version of the humble efforts Emma began to spread understanding of Islam and Muslim Women all those years ago.

A Need for an Islamic Special Needs School

On 13 Feb 2011, In Autism, Family, by , 10 Comments

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

I feel like I’m stuck between a rock and a hard place.

Parenting is a difficult job and it often requires parents to make difficult decisions about their children’s future. Among the most difficult, for me, has been deciding where to send my girls for school.

Sabah

Sabah started her learning career in public school, which was fine until it came to celebrating the holidays of the non-Muslim community. Her school, like most I imagine, made an especially big fuss about Christmas. Much less attention was given to Eid and other non-Christian holidays. Given the fact that Sabah’s class was more than 95% Muslim and most of the remaining 5% were Hindu, I had a big problem with the over the top attention given to Christian holidays.

Don’t get me wrong, I have nothing against teaching kids about the holidays and beliefs of others. Sabah knows, for example, that Christmas is for Christians and past the pretty lights she couldn’t careless about it. Besides, there is nothing more precious, to her, on this planet than Eid. I just don’t want their celebrations and holidays forced down the throat of my children.

Our solution was to place Sabah in a private Islamic school. The school is far from perfect and I could find reason to criticize it. However, Sabah is doing well and I’m far happier sending Sabah to school.

Dhuha

Dhuha, on the other hand, started school in a specialist nursery for children with ASD, which turned out to be a terrible nightmare never to be repeated. Overnight, my docile, affectionate, sweet Dudu became an aggressive biting, pinching and spitting machine, who found it impossible to go to sleep. Dhuha was struggling to cope at school and no one informed us. Her school journal was filled with the unimportant details of what she ate during the day. A year and a half later, we are still dealing with the consequences.

Like Sabah, our solution was to put Dhuha into a private Islamic school and they seemed happy to have her. The rest of the year went smoothly and I was happy sending her to school.

When this year began, I was hopeful that Dhuha would continue to do well at school. However, despite intentions and effort, school has become a daycare, where someone looks after her and makes sure she doesn’t get into trouble but where very little learning is done. To be successful at teaching a child with autism, the school must make fantastic efforts to tailor lesson plans to the individual child, the teacher must strive to understand autism, the teacher must truly care about the child, and teaching must be done in partnership with the parents. Moreover, time is a factor. The child has to learn the skills to communicate and become independent as quickly as possible.

We don’t want to waste any more of Dhuha’s time. Therefore, Zahira and I have been to see a local public school that specializes in teaching children with various special needs, autism amongst them. I was particularly impressed with the way I saw them using PECS.

We have started the process of moving Dhuha to this new school. However, I feel tormented. This school is going to have some of the same problems as Sabah’s old school. I don’t think its necessarily the best idea to put so many children with so many problems together. I can’t have a repeat of Dhuha’s first school experience. Dhuha can’t speak for herself and I have a mistrust of public school employees. At the same time, Dhuha is not learning to communicate and she seems to not be included in her class, which is the primary reason for sending her to her current school.

An Islamic Special Needs School

I have to choose the best of a bad situation. Neither of my options are perfect. What would be perfect, is a school that can excel at teaching special needs children based on the Guidance and Mercy of Allah and His Rasul. Perhaps, my hair can be prevented from turning white and my head could fall heavily onto my pillow, without anxiety and worry. I know that if my prophet, salallahu alayhi wa sallam, were on this earth now, his mercy and patience towards our children would be limitless. Dhuha and all special needs children deserve a home and school life based on that mercy and patience.

To Know Her is to Love Her

On 08 Sep 2010, In Autism, Dhuha, by , 2 Comments

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

This is something a wrote a while back,

Along with my faith in God and getting married to the love of my life, becoming a father has been among the most enriching and rewarding experiences imaginable. All of my three children are special and I love them. They have their own beautiful personalities and complex lists of likes, dislikes and preferences. They also come with a set of unique challenges, which I have the privilege of facing with them.

In 2005 my wife gave birth to a wonderful little girl, suddenly parenthood was thrust upon me. Admittedly, I felt completely overwhelmed and incompetent. Worst still was the massive upheaval that a new baby brings to an established and comfortable routine. My initial problems with parenthood were compounded by the fact that they were only my problems. My wife seemed to take everything in stride and I was left on the outside, cold. In time, I overcame these problems and embraced my new found position as head of my own family. However, nothing could prepare me for the challenges that were coming just around the corner.

In 2006, God blessed me a second time with a beautiful little girl, Dhuha. The anxieties of first becoming a father were far behind me and I enjoyed her from the moment she was born. Having two very young children was difficult but the excitement and the fun of it far outweighed any hardships. Life for a brief moment was as close to perfection as possible. Perfection would not last; it is God’s wish to constantly test us with trials and tribulations. By the end of the first year of Dhuha’s life we began to notice some oddities in her behaviour. At the end of her second year, we were sure there was a problem. Dhuha’s behaviour was troublesome and she wasn’t progressing as we had expected. At three Dhuha was diagnosed with Autism Spectrum Disorder. Having a child on the autism spectrum makes life for the whole family difficult and restrictive. I can only imagine how Dhuha feels.

Dhuha has autism but it does not define who she is as a person. Underneath her developmental disorder, she is an intelligent, creative and affectionate girl. If you give her half a chance, she will prove that herself. To know her is to love her.

When my wife became pregnant in 2008, there was a worried excitement. I questioned whether or not I would be ready for another child with a disability. Thank God, my son was born healthy and has not shown any signs of autism. Although I am grateful that he does not have a disability, I think I could have handled it, with a lot of difficulty.

Having children and being a father and husband has made me a better person. I owe my family a lot, especially Dhuha.

Autism Nasheed

On 08 Sep 2010, In Autism, Islam, Vlogging, by , No comments
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