Empowering Parents Through RDI

by RDIconnect | Oct 3, 2015 | Family Stories

The following was submitted by RDI parent, Jacqueline. This family works with RDI consultant, Bimal Rai.

Gabe was born on a snowy day in a suburb in Illinois. I remember how healthy and alert he was even just minutes after birth. So it came as a shock to us when he was suspected to have sepsis and was put on two nights of antibiotics. Thankfully, the lab results confirmed it was negative, so we took home our little bundle of joy and celebrated our first Christmas as a family of three. A month later we flew back to Shanghai where our journey with Gabe began.

Gabe was a curious little boy who enjoyed exploring his surroundings, listening to music and being read nursery rhymes to. It was when he turned seven months that I started to wonder why Gabe was not pointing. I asked the paediatrician whether this was normal and was reassured that some babies hit their milestones a littler later than others. By eight months he was babbling and was starting to imitate. He had a short crawling phase which only lasted for a month and then he quickly went to cruising and shortly after he was walking steadily at ten months.

At fourteen months I enrolled him in a mommy and me class, and like most toddlers he enjoyed dancing to the music. He seemed so confident and happy that I decided it was time for him to attend daily half-day sessions at a preschool. He was nineteen months old then and spoke phrases in both English and Chinese (though inconsistently). He enjoyed playing with other children and he had some form of pretend play which I caught on video. And even if I never taught him how to sort shapes and do puzzles, he was able to figure them out for himself.

Three months after he was enrolled his teachers started to notice things which concerned them, and me as well. The tip-toeing, the difficulty with transitions, not responding when his name is called, poor eye-contact and at times he would walk right in the middle of a group of children who were playing and step on their hands without a care in the world. It was also around the time that I was three months on the way with my daughter Maya and in the process of renovating our new home in another district in Shanghai. I was in denial but I was also secretly researching on the web about these symptoms. Almost all the links I found had the word AUTISM in them.

I was devastated, confused, but mostly angry at the teachers for insinuating that my son had autism. I convinced myself that Gabe was fine and the teachers were wrong.

I spoke to friends and asked whether their children who were around Gabe’s age exhibited some of the symptoms that the teachers noted. My friends reassured me that Gabe was normal and I was being overly paranoid. When we moved to our newly renovated home, the thought of Gabe possibly having AUTISM weighed heavily on my mind.

Then my daughter Maya was born in early summer of 2010 when Gabe was two and half years old. I was preoccupied with the new baby while Gabe was in the care of our Chinese nanny. The new school year opened in August and just three weeks after school started, his teacher informed me that Gabe bit her on the arm. He was also throwing tantrums when he was requested to join the group, as he would spend a long period of time on the easel painting. The teacher recommended that my husband and I think about having his hearing tested since she suspected a hearing problem and whether it was ok if their special needs coordinator observed him in his class. Upon hearing this, I nervously asked the teacher what her suspicion was but she only said she was not authorised to make a diagnosis and that it was best that we wait for the observation report. I started thinking about the word AUTISM again.

After several tests and evaluations from various specialists, the reports confirmed; Gabe had autism. I will never forget the day when all our hopes and dreams for Gabe withered right before my very eyes. It was also around this time that I started to notice Gabe’s fascination for spinning things and how he would line up his trains and the fridge magnets according to colour. Each time he lined up his trains, I messed it and frantically told him to stop lining them up. And each time I did this he would just line them up again.

Still coping with postpartum depression, not a day went by that I didn’t cry until I felt I ran out of tears. My husband and I started to look for SPED schools and therapy centres in Shanghai. Sadly, there was only one SPED school that catered to foreign children for four years old and up (none for four years old and below) and only one therapy centre was willing to take in a child below four years of age. My husband and I looked at Hong Kong and Singapore as options. We never thought Philippines had such a developed industry until we went there for a one week holiday. We returned to Shanghai confused and overwhelmed with the information we received from the specialists in Manila. So in what was a rather painful decision for us, the kids and I relocated to Manila so that Gabe could get the best help while my husband stayed in Shanghai to continue his work.

After eight years of living in Shanghai, I felt alien in my own country. With two kids in tow, without a helper and having to tread the unknown world of AUTISM. I felt alone and scared not knowing how to deal with Gabe’s behaviour, while also raising my then four month old daughter on my own. Suddenly, my world revolved around Gabe’s schedule: Regular therapy sessions in OT and speech, individual and group sessions in his SPED school. There was constant unsolicited advice from well-meaning family members and friends.

I spent many of my waking hours on the web, reading as much information available on autism; the latest cures on autism, special diets and supplements. I was often told, early intervention was the key and children on the spectrum thrived on structure. I replicated activities from his therapy sessions at home, traveled overseas to get trained on alternative ways to encourage speech and communication and (as if Gabe’s schedule was not packed enough), I went on to add music therapy, hippo therapy, developmental gymnastics, art therapy and regular swimming lessons. Despite all the “structured” activities I had planned out for my son, he was becoming more and more anxious.

A family member suggested medicating Gabe. My husband and I were against it. We were determined to get Gabe’s anxiety under control but we had to admit, we were desperate. We finally agreed to medicate Gabe. He was given a mood regulator. The first week, it seemed that Gabe responded to the medication. On the second week, not only was his sleep severely disrupted but his anxiety was far worse than before we started medicating him. The same doctor who prescribed the mood regulator prescribed a drug meant for people with ADHD on top of the mood regulator. On the first day Gabe was given this drug, he flipped between Jekyll and Hyde. He screamed all day, he was extremely fidgety and worse, he seemed as if he wanted to slam his body against the wall. It was a living nightmare for me and for everyone in the family. We immediately stopped giving him this drug and in a few days, he settled a bit. We were advised by the doctor to discontinue the ADHD drug but to maintain his dose for the mood regulator.

A couple of months after starting him on the mood regulator, we went on a cruise with our extended family. Gabe’s mood and anxiety were akin to a rollercoaster ride. Needless to say, my husband and I were exhausted at the end of the trip.

What we initially thought would be a quick fix turned out to be a daily penitence that could go on forever.

We had heard of RDI from friends and from one of Gabe’s therapists. We read up on it but were unconvinced how it could possibly work for us as a family; nevertheless, we decided to give it a try. We got in touch with Bimal Rai prior to our move to Singapore and he recommended we read a book entitled “My Baby Can Dance.” We read the book from cover to cover, not only was it non-invasive but it made a LOT of sense.

We were both determined to reconnect with our son. Slowing down, quietening, being less verbal and if possible non-verbal. Scaffold. Regulation. Co-regulation. All these terms, not only did we have to remember them, we had to live and breathe them. It was easier said than done.

After relocating to Singapore, we embarked on our RDI journey with Gabe, how timely that my husband was on his sabbatical that same year. As we progressed with the assignments and the face to face sessions, my husband and I realised how fast we had been with our pace and we were unaware of this during our interactions with Gabe and with our daughter. By slowing down, we were able to gain a better understanding of our son’s learning style and pace. Slowing down allowed us to think how we could be more effective guides to Gabe through mindful scaffolding, instead of treating Gabe like a marionette- and us being treated by Gabe merely as tools to get what he wants. We used to feel helpless, even afraid to deal with Gabe’s epic tantrums in public because we were clueless what triggered his meltdowns. Now, we are more aware of triggers. But more importantly, Gabe is learning to manage his emotions on his own. Slowing down has also given Gabe time to process experiences and at times even share his own emotions with us in relation to the experiences, something which he had not done before. Recently, I have been seeing more mindfulness in Gabe’s actions. Returning home after a grocery run, Gabe held the door for me as I brought in bags of grocery items. He did this without me even instructing him to. A few weeks back, he handed me my smartphone and told me “Keep” and as he gestured to me to put my phone in my bag. From observation, Gabe must have noticed how forgetful I can be with leaving my phone around the house!

Quietening also took on a different meaning to us. What we once thought was physically being quiet was actually quietening our minds. We are now becoming more mindful of our actions – the need to squeeze all activities in a day to get a sense of being productive no longer consumes us as much. We now cherish the times we spend as a family and Gabe is slowly trusting us as his guide and is on his way to becoming a good apprentice.

The more we let RDI seep into our lifestyle, the more we realise that we have yet to establish a strong foundation on trust – trust between the guide and the apprentice.

And trust cannot be forced or hurried. It is a slow albeit meaningful journey for us as parents. We still experience frustration on very trying days, especially with Gabe’s increasing awareness. Reflecting on this, we see that our frustrations mirror the expectations that we have. Whether they stem from fear of losing out (playing catch up to get Gabe to be at par with his peers) or becoming too focused on the outcome more than the process. We still have a lot to learn on our journey with Gabe. Learning is after all…about the process.

Bimal Rai

Bimal has over 20 years of experience working with a wide range of children with special needs, including Autistic Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), and Developmental Delay. After receiving numerous degrees and a masters in Psychology from Monash University, Bimal went on to work at K.K. Women’s & Children’s Hospital (KKH), Child Development Unit, as an Educational Psychologist. He was certified as an RDI consultant in 2007 and has since opened his own practice, the REACH clinic in Singapore.

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