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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.

Who Can I Call?

On 02 Jul 2010, In Autism, Family, by , 2 Comments

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

Dhuha’s mood can change in an instant, with hardly a breath between her manic laughter and her screeching cry or she can remain locked in a particular emotion long past, what could be considered, normal. I can never guess what her mood will be like at any given moment. Therefore, we send her to school everyday regardless of how she is in the morning.

Sometimes, we get it wrong and Dhuha gets even more distressed at school and I have to do an early pickup. Clearly, there is no blame on the school. It can be hard to look after her when she gets upset for long periods. Even more so, I would imagine, when you are also looking after 30 other children. I, sometimes, feel like falling apart when I have a baby that needs attention and an UPSET Dudu, who also needs attention.

When she’s in bed, with all her apparent needs fulfilled, screaming for what feels like a month, who can I call? Without Allah, I’d fall over.

I testify to the fact that there is no god worthy of worship except Allah, the Peerless. And I testify to the fact that Muhammad is His slave and messenger.  

Dhuha’s Sports Day

On 24 Jun 2010, In Dhuha, by , No comments

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

Yesterday was Dhuha’s turn at sports day. May Allah reward Dhuha’s key worker, who really looks after Dhuha. I’m very grateful for her effort in making sure Dhuha was able to take part.

Alhamdulillah.

Sabah’s Sports Day

On 21 Jun 2010, In Sabah, by , No comments

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

Last week Sabah had her first sports day at school. We all had so much fun and Sabah did very well, mashaAllah, when she wasn’t lazing about or searching for flowers. Sabah was also being a great big sister. At one point Dhuha decided to sit down on Sabah’s lap, Sabah patiently sat there hugging Dhuha. I told Sabah that if she wanted it would be alright to go and play with her friends.  Sabah responded, ‘I want to play with Dhuha and my friends’. I love my girls.

Ow, Ow, Ow

On 24 Apr 2010, In Autism, Family, by , 1 Comment

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

Yesterday morning, Zahira was brushing Dhuha’s hair and with each stroke Dhuha was saying ‘ow, ow’. MashaAllah, it was so cute. I felt sorry for her because it was obviously hurting her but that’s what she gets for spending the whole night twirling it into knots. It was a nice moment because this was one of the rare moments where she has used a word appropriately. I have a great hope, she will speak.

O Allah, There is no god except You! Have mercy on Dhuha. You are enough as a protector and provider for us.

She’s Not Cold, She’s Autistic!

On 10 Mar 2010, In Abdullah, Autism, Dhuha, by , 11 Comments

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

Recently, Zahira’s hours at work have changed and so she is no longer able to bring Dhuha home from school.  Consequently, I have started walking to school and fetching her and we all walk back together. It’s about a fifteen minute walk, which Dhuha has enjoyed. However, she’s having an off week. She has been extra crabby and just wants to be carried all the time but even that doesn’t make her happy.

Yesterday, Dhuha’s teacher said that she had a good day at school but she started crying the last fifteen minutes or so. I thought maybe she was tired because she’s had trouble sleeping. When Dhuha wanted me to carry her, I did. Normally such a short walk is nothing, however, Dhuha must weigh somewhere around 20kg and I had to push Abu Bakr with one hand. I barely managed to carry her, but she still cried and she was still miserable when we got home and for the rest of the day.

Today, Dhuha wanted me to carry her again. I decided that I wasn’t going to carry her. It was difficult and it didn’t do any good. Plus I thought the walk might do her good. She whimpered most of the way home and that was only broken by moments of more intense crying and grabbing my leg to try and force me to carry her. I ignored her behaviour and the looks from everyone else. I don’t mind looks because I guess I might look if I hear a baby crying.

When we were just about home, we caught up with a woman, who was walking with her toddler son. They were moving at a slow pace and because we were unable to go around we ended up walking just a few feet behind them. Each time Dhuha cried she turned around and looked at us, which I tried to ignore. It wasn’t a glancing look. It was a body contorting, eye straining look. Finally, she just stopped and turned around and waited for me to be right next to her. She started to speak but I didn’t let her. I said abruptly, ‘she’s autistic’. She asked, ‘she’s cold?’. I shouted, ‘NO, she’s AUTISTIC.’ She replied, ‘oh, she’s autistic’. As if she knows what that is or what it means. Does she think that I’m not looking after my own child? Or was her crying too annoying?  

I’m so angry that hours later I still feel like screaming at her. Am I being stupid for getting so upset?

May Allah forgive me and her.

From Sabah to Dhuha

On 26 Feb 2010, In Dhuha, Sabah, by , 2 Comments

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

Yesterday at school, Sabah must have been thinking about Dhuha. So she coloured a picture and told her teacher that she wanted to give it to Dhuha, who is in another class. With permission, Sabah when to Dhuha’s class and gave her the picture you see. Dhuha was thrilled, Masha’Allah.

Sabah really loves Dhuha. That makes me feel proud to have such wonderful little girls. Plus, she has better crayon control at five than I do at 28 and 11 months. Alhamdulillah. 

One Year Anniversary

On 12 Feb 2010, In Family, by , 4 Comments

As Salaam Alaykum wa Rahmatullahi wa Barakatuhu,

Everything comes to an end. Everything will perish. Tall mountains, mighty empires and human lives will vanish as if they had never existed. So, what chance does a silly little blog like mine have?

Today marks the one year anniversary since I started this blog. Time, SubhanaAllah, goes by so quickly. It goes by so quickly that thinking about my life in terms of this blog reminds me how quickly death is coming. If I died now would I be proud of the way I lived my life? I am an inadequate father, a lousy husband and a lazy Muslim. I haven’t had my moment of greatness, when I would swallow my fears and ego and sell my life for a place with the Most High.

A lot of things happened in this year that has passed us by, as you would expect. We got to terms with Dhuha’s disorder and she got a diagnosis and started school. Sabah reached the five year milestone, has learned to read and come out of her shell to become very cheeky. At just four years old, she began taking some responsibility for Dhuha, making sure that she is safe and out of trouble. She is a remarkable little girl. Abdurrahman, our first son was born. I have never seen such a happy and well-behaved baby. MashaAllah, my kids are wonderful and beautiful and I am proud that they are my children.

Our lives aren’t just about the kids though. Zahira has started teaching in a local Islamic school, she learned to drive and most astonishingly she has been able to put up with me for another year. As for me, I can’t really think of anything that I’ve done worthy of listing here and that is a bit sad.

I have enjoyed writing for this blog. Getting to know some of you virtual people. I hope in the next year that I can improve on my writing, get to know more of you virtual people.

Thank you all for joining my Islamic family for this past year and I hope you are looking forward to the next year as much as I am.

O Allah, forgive me.

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