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.

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.

I’ve been married for eight years, today. Which is just enough time to get some understanding of marriage and family life. Even if that understanding is a bit blurred and confused.

Since I’ve now established my “authority” to write on the subject, I would like to share eight things I’ve learned in the past eight years. Enjoy.

Four Things I’ve Learned About Myself

1. I’m not patient, cool, clam or collected as I had, previously, been made to believe by my friends. It’s easy to appear patient when you have no responsibilities and no worries beyond deciding where to eat lunch. It is decidedly much more difficult with real responsibilities and real problems, proving conclusively that I’m not the least bit patient.

2. I can handle a lot more than I thought I could. When I was growing up, there were two things I thought I could never handle; autism and psoriasis. I have psoriasis, though it is under control. Dhuha has autism and I think that’s under control too.

3. I am a lot like my father. It pains me to say it but it’s true. I’m a disciplinarian. “Smaking” annoys me to no end. I MUST be heard. Sabah calls me “grumpy daddy”. Not to mention that I look a lot like him. Harshness was his defining character trait.

4. I’m nothing like my father. I kiss and play with my kids. They can share my food or drink. I can and do change nappies. I tell my family that I love them. We spend on the kids first and often I do without. I like to think, my kindness overshadows my harshness.

Two Things I’ve Learned About Marriage

5. It’s next to impossible to win an argument. Even when I’m sure I’m right, I seem to lose the argument. I talk too much. I talk too loudly. The longer the argument goes on, the more likely I’m not going to win. In fact, the only way to win an argument is by arguing alone.

6. DIY and housework (especially washing dishes) is the best way to smooth things over after you’ve lost an argument (see point 5). There is a trick to it, so use with caution. You must not wash the dishes or put up a shelf too frequently or it will become what’s expected. You must not do it too infrequently that she starts thinking you are a lazy bum. It is a fine balance, I admit. Done right, it will endear her to you.

Two Things I’ve Learned About Being a Father

7. Having a child with a disability isn’t bad. I remember saying to Zahira, when she was pregnant with Sabah, that I didn’t mind if we had a boy or a girl just so long as there was no disability. I remember worrying about Abdurrahman through his first year. But the one I’m closest to and the one that I’ve learned the most about being a father and a human is from Dhuha. Her disability does not stand in the way of her awesomeness.

8. Being part of my children’s lives has been the most satisfying aspect of worldly life. Before they were born, they did not exist even as an idea. After I saw them, heard them and held them, I can not imagine a happy world without them. They are the coolness of my eyes. They are the pleasantness of my present. They are the hope of my future.

Alhamdulillah. Thank you Zahira for eight great years. I love you.

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.

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.

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!

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.

In the lead up and to the end of last Ramadan, there was a happy tranquillity in our home. It marked the end of a trying year and everything seemed on the up. The boy was progressing as we hoped. Sabah was growing in confidence. Dhuha was putting the trauma of the previous year behind her. Zahira was looking forward to starting her first year of university and a new year of teaching. We seemed to have acquired an equilibrium in our family that had been missing for some time. Indeed, all praise and thanks belong to Allah for His blessings and that period of respite. MashaAllah.

That moment of calmness was destined to be short. As Ramadan ended and we were celebrating Eid-ul-Fitr, a new fitnah invited itself home. What a bloodthirsty trial it was! It wasn’t long before we were throwing the children’s newly bought Eid toys into the bin and most of everything else.

I can now put the financial cost of our ordeal to be between £6,000 and £8,000. However, it was the stress that had the longest and deepest impact. We had no bed, no blankets and no refuge. What I remember most was the day we took Dhuha’s bed out. That night Dhuha went looking for her bed, unable to find it she walked in circles until out of exhaustion and despair she sat on the steps leading to her room and placed her head in her hands and cried. One cannot imagine what an extraordinary gift a dark night in restful sleep is, until it has been taken away.

We were given a lifeline and invited into my in-laws home. What a relief it was to have a sanctuary! We left our house as quickly as we could. We salvaged what we could of our possessions and took the rest to the skip. It was one of the many blessings that Allah Ta’ala has given us, that we didn’t pass our plague onto our generous hosts.

Our intention was to stay a few weeks or a month at most. We began looking for a place of our own immediately. However, it was terribly difficult to find an adequate house to rent, within our budget. As the weeks turned into months, our sanctuary became a prison. The difficulty, placed on us all, was significant.

When we had almost given up on finding a new place, I happened to stumble upon a listing on the internet. It seemed to check many of our boxes and it was within our budget. We made an appointment to view it and then moved in just days later.

Now that Ramadan tranquillity, happiness and peace has become part of our day to day; even more so. We went from quite a small house, to a cramped room to something that is quite spacious. Dhuha especially seems to be relishing this new freedom. She now has her own room and her own bed. She is no longer restricted from any room in the house, with the exception of mine and Zahira’s room. On top of that she has a garden in which to escape from the house itself. Her mood and behaviour has improved a hundred fold.

There is no doubt that I am truly indebted to Allah the Most Merciful Lord. Oh Allah, make me a grateful servant!

Allah says in His Quran,

Verily, with every difficulty there is relief. (94:6)

How true! Life is full of challenges, some more serious than others. Yet, when the dust has settled, there is relief.

Alhamdulillah, a few weeks back my family was able to draw a line underneath a particularly challenging seven or eight months. We are now in our own place and enjoying the extra space. While I am grateful for the hospitality of my in-laws, I am relieved that we no longer need their hospitality.