Brotherly bond: Watching in awe as their relationship develops

Amir, my eldest, is 14 and Arif is 4. 

Oddly enough, my earliest memory of the bond between my two sons is one where neither of them was present. In fact, they hadn't even met each other, so a bond was nonexistent. I'd just been discharged from a long stay in the hospital, due to pre-eclampsia and an emergency c-section. Arif, who was a low birthweight premie, was still being held in the Neonatal Intensive Care Unit (NICU), so when I went in for my postnatal check-up, I was by myself.

As I sat in the waiting area, I observed a couple seated across me. The mother was cradling a newborn in her arms and they had a little boy with them, he must've been about 5. It was obvious to me that this boy was smitten with his baby brother or sister. Instead of staying quietly in his seat, he stood up, positioned himself near the baby's head and gazed at the baby adoringly. Here and there, he would steal kisses on the baby's head.

I say 'steal' because his mother kept shooing him away. But he was unable to help himself and after one gentle peck too many, his mother scolded him and told him that he was disturbing the baby. At that moment, I realised how easily adults tend to brush aside life's simple pleasures.

I thought to myself that the lady didn't know how lucky she was. I wished Arif was in my arms. I wished Amir had met his baby brother and fallen in love with him. I hoped that my sons would have that beautiful brotherly bond.

Fast forward about a month later, my boys finally met when I brought Arif home. Amir, who was 10 at the time, had initially been very excited at the prospect of becoming a big brother. But it would seem that Arif's delayed homecoming had fizzled the excitement a bit. There wasn't much room for physical tenderness between my boys. Arif was so small and fragile at the time that Amir wasn't allowed to touch him for the first few months. So I'd have to say that their bond wasn't sealed from the get-go. It also didn't take long for Amir to start becoming jealous of Arif, who was getting all the attention (I can't say I blame him).

But as time progressed, things did get better. Like other brothers, they liked to have pretend sword fights and roughhoused. Amir would give Arif piggyback rides around the living room. But they weren't really, really close. Amir was away at school for most of the day, and due to their big age gap, they didn't really have that much in common. Forging a bond was also especially challenging because Arif has non-verbal autism. This means my boys can't verbally communicate or understand each other. 

Arif didn't seem to welcome physical affection from his big brother either. Amir would lean in for a kiss or a hug, for example, and Arif would push him away. Though he's very affectionate with me and my husband, Arif didn't seem interested in bonding with his older brother. Meanwhile, Amir, who's naturally talkative, didn't really know how to connect with his non-verbal, much younger brother who kept pushing him away. 

For quite some time, I didn't know if my boys would ever grow close and develop a satisfying relationship, despite the odds. This worried me, because someday, when we're gone, Amir would be taking care of Arif. He needs to understand and connect with Arif, and Arif needs to learn to trust him. I figured one way for me to help build their relationship, was to help Amir understand his brother first.

At opportune moments, I would talk to Amir about autism and explain things to him bit by bit. I had to be mindful not to overload him with things, but my goal was to help him realise what things are like for Arif. I wanted him to know that there is much we can do for Arif as a family. I taught Amir that from an Islamic point of view, having a sibling with autism isn't a burden, but a gift. 

I also tried to understand things from Amir's point of view. Siblings of autistic and special needs children often experience their share of stress and anxiety too, and I've seen evidence of this in Amir.

But then, this month, something AMAZING happened. Since it's the long, year-end school holiday, my boys are together a lot more, sharing the same space. But unlike the holidays before, something seems to be different and more positive. 

Amir has become more relaxed around Arif, attentive to his needs and better at engaging his little brother, despite the lack of verbal response. In turn, something seems to have 'clicked' in Arif as well. He has begun to take notice of Amir, and genuinely wants to be close to and affectionate with his big brother. 

I watched in amazement as Arif voluntarily climbed into his big brother's lap, and sat there as we waited for our Grab ride. I observed that after Amir gave Arif a kiss, Arif kept  pulling him close again and again for more kisses. Today, Arif pulled his brother's arm and asked him to sit with him, so that they could watch Monsters Inc together on the couch. Arif even teased his big brother by dangling a piece of garlic bread in front of him, then giggled as he pulled it away.  

Soon, Amir will start school again and Arif will be seeing his brother a lot less. But the interactions I've observed in these past weeks have given me hope that my boys can develop a strong bond and meaningful relationship that's built upon love, mutual understanding and trust. It may have taken a while for them to gain momentum, but my maternal instincts are telling me that this train is now full steam ahead.

I watch in awe as their relationship develops and I'm so grateful for these moments. I certainly won't be taking these simple pleasures for granted. I will celebrate each and every warm moment they share. Every smile. Every giggle. Every touch. 

If you'd like to understand what its like for autism siblings, I think this article on Autism Society will be helpful.

Swimming as therapy

Like most children with autism, Arif has always been drawn to water. It could be cups or bottles, a tap or water dispenser, a bucket or a pool. If there's water, he'll play with it or in it.

Of course, this can be a source of anxiety for me. Unaware of danger, and not yet able to understand what we're saying, Arif can spill water near electrical devices, appliances or sockets (lost my last mobile phone this way), or play with taps and water dispensers in public places like restaurants and clinics, much to other patrons' chagrin.

We also need to make sure that any buckets of water in our bathrooms have to be secure and when we're at the pool, we're extra vigilant.

But this year, we're embracing Arif's love for water. Earlier this year, Arif joined a community-based rehabilitation programme and one of their activities is swimming, which is held at the Kelana Jaya Municipal Pool. I love taking Arif to swim here, because he loves it and I can clearly see that he's becoming more confident in the water.

Going into the pool not only provides him with sensory play, but water also soothes, comforts and  provides gentle exercise. Most importantly, it boosts his happiness :)

When my eldest, Amir, is on school holiday, Arif gets to play with his big brother at the pool. Amir does an awesome job at pretending to be a dolphin, so that Arif can ride on his back around the pool. After swimming, Arif usually enjoys a bottle of his chocolate camel milk and a light snack.

After a few hours of swimming, my boys are ready to head home. I call for an Uber and then we wait patiently for our driver to arrive! Here's to more pool fun, especially with big bro!

You can learn more about the benefits of swimming for children with autism here.

Kids and cornflake cookies

Last week, at KAMI Playgroup, we did something special - the kids made honey cornflake cookies! It was the first time that we tried a cooking activity and it was a lot of fun. The kids really liked it, so I'm planning more "cooking" lessons in the future. Our playgroup began, as usual, with circle time, where we recited Alfatihah and did some brain button exercises. Arif usually doesn't want to participate in circle time, but this week, he sat with me for a little while.

 

After a few action songs, we pulled out the equipment and created an obstacle course for the kids using preschool equipment. The kids navigated the course while holding balancing sticks.



Then, it was time to make our honey cornflake cookies. First, the children mixed cornflakes with melted butter, brown sugar and honey. Then, they spooned the mixture into paper cups. Lastly, they decorated their cookies with sprinkles. Finally, we sent the cookies off to the cafe to bake them and make them crispy!





While the cookies were baking, we did an arts and crafts activity. This week, the children made a traffic light collage using glue and coloured paper. This simple activity isn't just good for fine motor skills and sensory input from the sticky glue. But it's also great for visual motor skills.



Last, but not least, we cleaned up our tables and sang a goodbye song. Then, everyone got to take home their honey cornflake cookies to snack on later!



Check out this video I compiled of the day's fun times :) See you next time at KAMI!

Playdates @ We Rock the Spectrum, Ara Damansara

Arif doing pull ups for the first time!

One of Arif's favourite places to go (and his favourite play gym), is We Rock the Spectrum (WRTS) at Ara Damansara. We love going there because they have lots of specialised equipment, which is perfect for children with special needs like Arif. They also have an awesome area for table tasks like drawing and fine motor play. 

Climbing the net for the first time!

And while we enjoy visiting the gym on our own, I often set up playdates with friends so that Arif can learn to play with others and take turns. Though he has a long way to go in terms of communication and socialising, I have seen many improvements in him. 

Playing with friends from CBR Network, PDK Ara.

Arif has also started to mimic his friend's actions.

Each time we visit, Arif tries and discovers something new, growing braver and stronger. For example, he used to be terrified of swings, due to his vestibular issues. But thanks to the activities we've done at home, at playgroup and WRTS, he's no longer afraid of swinging. In fact, he loves it so much now! It's nice to see him grow more confident, not just in terms of gravitational security, but also body and spatial awareness. When we first started coming to WRTS in July last year, Arif played with only a few things, mainly the trampoline. But on our last visit and play date with my friend Juliana and her son Ibrahim earlier this week, Arif tried many new things. It was also the first time that I saw him mimicking what another child is doing.

Arif having a swinging good time. He first saw Ibrahim do it and thought he'd give it a try.

Arif's getting better at balance beams too!

Arif has also gotten very good at solving puzzles, even ones he has never seen before. I can still remember the days when he struggled to manipulate puzzle pieces in his hand. He was unable to grasp the pieces firmly and turn them as needed.

Arif has gotten very good at solving puzzles :)

When he has climbed, jumped, run and rolled, he'll sit in a quiet corner and so his own thing.

This fine motor activity is so cool, Arif loves it!

As a child on the autism spectrum, Arif likes to line things up in a row. This is often described as rigid behaviour and is said to reflect a lack of imagination and appropriate play. To me, it may not make sense to us, but it makes perfect sense to Arif. So if it makes him happy, I'm happy to let him continue on. Plus, I've seen him get creative with his arrangements and he does engage in some imaginative and pretend play.

And of course, he loves animal figurines, as well as lining them up.

Arif gets creative with lining up the sea creatures.

Sorting things out is one of Arif's favourite things to do.

The other toys at the gym that Arif loves, are the musical instruments and train set. The musical instruments are especially fun when played with friends! I look forward to our next visit to WRTS and wonder what Arif will surprise me with. Hope to see you there!

A cute three-piece band, led by Aunty Juju. I tried joining in with my triangle :)

Arif loves the train set :)

New additions to KAMI Playgroup!

Check out this cheerful and colourful corner!

It's only been about three months since we launched KAMI Playgroup, but slowly and surely, we're growing better with each passing week. When we held our 8th KAMI Playgroup session at Masjid Kg Tunku on 27 Jan, we were especially excited, thanks to some new additions. Firstly, we welcomed four new families into our group, and secondly, we now have ten gym balls ready for action! This week, we welcomed 8 children, 10 parents and 3 volunteers in total. Everyone came ready to play :)

We started our session as usual with Salam, doa and zikir during circle time.

Next, we did a warm-up music and movement activity with action songs.

After our warm up session, we did two activities for indoor play. First, we used our new gym balls to do calming and alerting exercises. Can I just say how much I love these gym balls and the colour they add to our space? Awesome! I also introduced the parents a to a simple brain gym massage, which helps to increase blood flow to the brain and improve focus. You can learn more about brain gym exercises here.

A rainbow of gym balls! A fun addition to our playgroup sessions. 

   

For the second activity, the children engaged in a table task involving fine motor play. We gave them each some coloured pasta/ perler beads, which they had to thread onto a pipe cleaner. Though it seems really simple, this activity requires focus, hand control and hand-eye coordination. After the fine motor play, we got messy with a sensory play session, where we made our very own playdoh.

Fine motor activity, threading beads on pipe cleaners.

Mixing up our own playdoh using flour, salt, warm water, vegetable oil and food colouring.

Thank you Sharon and Aisyah for helping us out this week!

I am most grateful for another good playgroup session and I'm excited to plan even more activities for the kids. Stay tuned for more on KAMI!

Friends come to visit KAMI Playgroup

Hi everyone! Welcome to yet another update on KAMI, a non-profit playgroup for children on the autism spectrum held at Masjid Kg Tunku, Petaling Jaya. We had our 7th fruitful session on 13 January 2018 and best of all, we were joined by a couple of new friends. They very kindly lent us their support and encouragement, which means a great deal to us at KAMI. I am so grateful that KAMI is growing from strength to strength with support from members of the community. 

An overview of KAMI Playgroup in full swing.

Our volunteer Denise helping one of the children during the fine motor task.

For this week's playgroup session, we welcomed 7 children, 6 parents and 2 volunteers - Kila and Denise, who brought along her two boys. We began our session, as usual, with circle time for Salam, Alfatihah and Zikir, and this was quickly followed by music and movement to a few upbeat action songs.

Music and movement to action songs is our favourite warm up activity.

Next, we did a simple gross motor activity to help get our bodies moving. Using balloons and paper plates, we played "tennis" and the children tried to keep the balloons off the floor. Though this seems like a very simple activity, it contains many hidden benefits. It encourages the children's hand-eye coordination, visual motor and even midline crossing.

After they got our wiggles out, the children engaged in a table task with fine motor play activity. Now to some, it may seem counter-intuitive to get the children "excited" before a table task, where they need to sit down for an extended period and focus.

However, I've learnt from several experienced occupational therapists that it's good to start with gross motor activity for vestibular and proprioceptive input, before you get the child to do a seated table task. This is because the gross motor activity helps to activate their bodies and settles some of their sensory needs.

In fact, throughout a child's day, it's good to schedule sensory breaks in the form of gross motor activity. This helps break the monotony and help children focus better. For this week's table task, we did a fine motor activity using coloured pasta and string. Some of the children even made necklaces for their mums.

The children did great with this fine motor activity. 

Our penultimate activity for the day was an arts and crafts session. This activity encourages focus and seated behaviour, as well as creativity. For this week's art session, we gave the children crayons and paints to create their own mixed media artwork. Last, but not least, we cleaned up the area together, with help from the children. Then we sang the Goodbye Song and dispersed.

My son Arif (in black t-shirt), loves to experiment with paint.

Besides welcoming our volunteers, we also had the pleasure of receiving three special guests, Puan Hajjah Nor Yasmin, President of CBR Network, En Shahrin and his wife Puan Ros. They met with Puan Hajjah Salmah, the Head of Masjid Kg Tunku's Education Bureau and the parents in our playgroup. Alhamdulillah for such a wonderful day with all our friends.

Me with Puan Hajjah Nor Yasmin and En Shahrin at CBR Network, PDK Ara.

Puan Hajjah Salmah with Puan Rose.

Puan Hajjah Yasmin and En Shahrin took time to speak to some of the parents in our group.

To learn more about KAMI Playgroup's launch, click here.
To see what we've done in our previous playgroup sessions, click here.
To locate Masjid Kg Tunku (Ar-Rahman), click here.

WHAT IS KAMI PLAYGROUP?

It's wonderful when parents and children are engrossed in an activity together

About KAMI
Hi everyone! If you've visited before, welcome back to my blog. And if you're new here, I'm so glad you could join me. Today, I'm pleased to tell you about KAMI Playgroup, a special playgroup that I started with a friend and fellow autism mum a few months ago.

KAMI, which is an abbreviation for Kumpulan Anak Autism Masjid (Roughly translated to "The Mosque's Children with Autism Group") is a non-profit playgroup catering to children with autism and their families. Our playgroup sessions are held every Saturday at Masjid Kg Tunku, Petaling Jaya.

Our group consists of children aged between 3 to 9 years, most with Autism Spectrum Disorder (ASD) and their neurotypical siblings. They have different levels of ability and areas of concern. In order to cater to all, and due to our limited resources, we try to keep our activities as simple as possible. Parents are encouraged to modify the activities where necessary to suit their child's specific needs. 

Alhamdulillah, last weekend on 6th January, we held our 6th KAMI Playgroup meet and the first for 2018. In this session, we welcomed 7 parents, 8 kids and 3 volunteers, two of whom are from a new student volunteer group called Diffable.


How we begin
We usually start our playgroup session by sitting in a circle on the floor. This week, after I introduced Adilah and Hanan from Diffable, we exchanged Salam, recited doa Alfatihah, as well as simple zikir for children. Usually, we say "Alhamdulillah, thank you Allah." The purpose of beginning our session in this way, is to seek blessings from Allah SWT and hopefully calm  the children. It also signals to the children that the playgroup session has begun.

Here's how we start our day at KAMI Playgroup, with salam, doa and zikir.

Music and movement
After the opening, we all get up on our feet for Music & Movement. The purpose of this activity is to warm up the children's bodies. It is also a visual and auditory motor activity that encourages the children to learn how to mimic others' movements and move to the music. At KAMI, we support all levels of participation. If a child isn't comfortable enough to join in the activity, we provide an understanding environment where he or she is encouraged to join in next time. In this week's session. the volunteers and I showed the families how to move to two action songs - "If you're happy and you know it" and "Head, shoulders, knees and toes."

When it's time for Music and Movement, everyone starts grooving to encourage the kids to let loose.

Gross motor activity
After we move about, we usually engage in an Indoor Play session. Each activity we do has a purpose, and our Indoor Play aims to develop the children's gross motor, fine motor, turn-taking, socialising and joint attention skills. For this week's indoor play session, we did two activities.

The children navigated the obstacle course with a little help from their parents.

The first activity involved an obstacle course. The children needed to balance a plastic ball on a cardboard tube, then walked in a zig zag pattern around cones, balance themselves on folded exercise mats and then a bench, before dropping the ball into a container at the end. This was repeated several times to music.

The children patiently waited their turn.

The aim of this activity is to provide the children with vestibular and proprioceptive input, as well as to encourage their balance and focus. All our kids usually love this sort of  activity. But if we don't do obstacle courses, we will do exercises instead to mix things up. We do stretching and bouncing exercises on gym balls, as well as play games with bean bags, balloons, balls and so on. As explained by several occupational therapists whom I've trained with, gross motor activity is a 'sensory break' that helps the children to feel more settled down. This in turn enables them to better engage in the table tasks that are coming up next. In short, we activate the body before we activate the brain.

You can learn more about sensory breaks here.

Arif dropping his ball into the container at the end of the course, which was held by Adilah.

Fine motor activity
For our second Indoor Play activity that day, the children did some fine motor play. They were given a mix of macaroni and beans, which they had to separate with tweezers. This proved to be a bit tricky for some of the younger children, like my son Arif, because he was a bit distracted. However, he still liked to play with the macaroni and beans to feel their texture.

Click here to learn more about the benefits of fine motor play.

Arif didn't want to use tweezers and occupied himself with disturbing his friend Fateh instead. Fateh was very patient with Arif.

Separating beans and macaroni with tweezers is a good visual and fine motor activity. 

Hanan helping to demonstrate how to separate the beans and macaroni.

Sensory play or arts and crafts
The last activity of the day was a Sensory Play session, instead of our usual arts and crafts. The purpose of this tactile activity is to stimulate the senses, encourage focus and seated behaviour, as well as help with tactile defensiveness. For this week's sensory play, we gave the kids shaving foam and water beads. It was good, messy fun! For most of the kids and families, this was the first time they had ever played with shaving foam. We like to introduce new activity ideas to parents through our playgroup, so they can do them at home.

You can learn more about the importance of sensory play here.

If we don't do sensory play, we will do arts and crafts instead. Besides being a good sensory and fine motor activity, arts and crafts also encourages creativity, thinking, exploration and joint attention. In each activity that we do, parents engage with their children and encourage them. This is especially crucial, because parents sometimes struggle to engage with their ASD child. It also offers some parents the golden opportunity to bond with their child over a new activity. I always remind the parents to focus not on the final product, but the process. We must take the chance to enjoy the process with our children, no matter what the outcome.

Why shaving foam and water beads? It provides the children with a chance to explore their senses. 

Arif loved squishing the water beads :) Good exercise for the fingers.

Clean up and goodbye
To wrap up our session, we all pitched in to clean up little hands, the bins and the space. Then we sang the Goodbye song as we normally do. It's important to have the same structure of activities each week, so that the children know what to expect and when the session is over. So far, this structure of activities has worked well for our group of children.

Even goodbye is a happy time at KAMI Playgroup.

Another fruitful session
Alhamdulillah, everything went well in this session. Overall, the children were able to follow the flow of activities well as usual, now that they have warmed up to the place and all the new faces. If the children weren't interested or able to engage in an activity, we encourage the parents to try the activity again at home.

The volunteers, Puan Salina, Adilah and Hannan did a great job in the set up of materials, engaging with the children and parents, as well as helping me clean up the classroom and organise the materials. After the session, Adilah and Hannan sat in a meeting with Puan Hajjah Salmah and I to discuss about 2018 plans for KAMI and future contributions by Diffable. It was a full and rewarding morning, and we certainly crammed a lot into an hour of play!

Puan Hajjah Salmah, The Head of the Education Bureau of Kg Tunku Mosque talking to Adilah and Hanan from Diffable.

KAMI PLAYGROUP NEEDS YOU!

KAMI Playgroup is a non-profit, community-run playgroup. Currently, we are operating as a 6-month pilot project (Nov 2017 to April 2018) under the auspices of Masjid Kg Tunku. If we succeed in this six-month period, we will be able to continue and work on securing funding. Now that we've gotten into the swing of things, we'd like to make further improvements in 2018. But we need YOUR help to achieve this!

We are currently looking for:

1. Volunteer teachers and teaching assistants: Must have a passion for helping special needs children and families. No experience is necessary, training will be provided.

2. Special needs specialists: Therapists (occupational, speech, physio etc), special needs educators,  and experts who can share their knowledge and expertise (give talks or training to our teachers & parents).

3. Funds: We require funds to purchase play equipment and supplies for our weekly activities. We also wish to hire and train full-time teachers.

Currently, there are only two of us running the show (Hasniyati - Administration and Adline - Programmes and activites) with Puan Hajjah Salmah as our advisor. In order to grow and accommodate more children and families, we need more teachers and volunteers.

If you're keen on lending us a helping hand or making a monetary contribution to our playgroup (for materials, supplies and training), do get in touch with me at adline76@yahoo.co.uk. Thanks!

To learn more about KAMI Playgroup's launch, click here.
To see what we've done in our previous playgroup sessions, click here.
To locate Masjid Kg Tunku (Ar-Rahman), click here.