dealing with autism – The Metrognome

Dealing with autism in your child is more than a daily challenge – but what doesn’t challenge you, won’t change you.

by Kamini Lakhani

Part 6 of the Autism Diaries – It’s when you go on when you think you can’t that defines who you are

Recently, I had ‘one of those days’. You know, when everything seems to be going wrong. There were difficult meetings, distraught moms, family issues…

The thing about being professional is that you have to ‘show up’ – and show up with a smile!

Meeting 1 was with the family of a 14-year-old, a case of High Functioning Autism, integrated into regular school. What could be the problem? It turns out: plenty. He’s being bullied at school, which is causing him and his parents tremendous stress. Added to this, he has an elephantine memory (not good in this case). So he remembers everything that was said to him since grade 3! He suffers from low self esteem, too. He can’t state one good thing about himself. Imagine how badly his psyche has been affected.

I totally understand what the parents are going through. When you’re just this distance away from ‘recovery’, it is the most painful! So near…and yet so far. His mother was experiencing a real low that day. In all my years of working with her, I had never seen her break down like this.

Meeting 2 – with a mom of an 18-year-old delightful young lady who has come a long way. Mom was upset after attending a wedding. There was nothing really ‘wrong’. But what was creating turmoil within mom, were her own feelings. Seeing her daughter with her ‘normal’ cousins brought up the pain again. Why wasn’t her daughter like her other cousins? Would she ever make plans with friends and go out? Would she ever get married?

Both scenarios shook me up. I understand what low self esteem feels like. I’m afraid of the damage and the repercussions on the child. I understand what Mom 2 felt, too. My nephew is exactly the same age as my son – they were born just three weeks apart. As much as I count my blessings, it hurts that my Mohit did not go to university and that he may never marry and ‘settle down’ like his other cousins.

We’re working on the best outcomes for all our families. At that point of time, both mothers were looking for reassurance and understanding. I wanted to hug them and say “I understand”. What I did not want to do was give superfluous advice. It had to be heartfelt. It had to be something that I had experienced, or else, it would be empty.

What had I experienced that helped me emerge from the blues? I thought of my yoga class (my favourite!). Once a month, my teacher gives me a free hand to push my limits and do as many ‘Surya Namaskars’ as I want. I take the challenge to push myself to my maximum limits. I come up with a number that is beyond my capacity. I may feel that I’m about to collapse, that I should stop. But I don’t. I want to nail it. I want to feel the exhilaration and the rush. I want to experience the joy of victory and of pushing myself off the cliff!

So where I am going with all this?

When I achieve something that is physically very difficult for me, it gives me the courage and the confidence to undertake something that is mentally challenging. The mental follows the physical. After a strenuous class like this, my mind state is altered. I can deal with what I’m going through. I’m in a high-life state. The common factor is the determination to continue – especially when the going gets tough.

Here is what my spiritual mentor Dr Daisaku Ikeda says:

“Whether we regard difficulties in life as misfortune or whether we view them as good fortune depends entirely on how much we have forged our inner determination. It all depends on our attitude or inner state of life. With a dauntless spirit, we can lead a cheerful and thoroughly enjoyable life. We can develop a ‘self’ of such fortitude that we can look forward to life’s trials and tribulations with a sense of profound elation and joy. Come on, obstacles! I’ve been expecting you! This is the chance that I’ve been waiting for!”

I’m certainly not there as yet, but I would definitely want to be. We have to remember that we are running a marathon and not a sprint. And that’s exactly what I told these incredible moms. Are we going to ride these waves of adversity, or are we going to drown?

Have you experienced something like this? Have you thrown yourself off a ‘cliff’ and emerged stronger? I would love to hear your view point. And if you have questions related to autism and other learning conditions, feel free to email me at saiconnections01@gmail.com. I will be glad to help.

Kamini Lakhani is the founder of SAI Connections. She is a Behaviour Analyst, an RDI (Relationship Development Intervention) Consultant, Supervisor and Trainer responsible for RDI professional training in India and the Middle East. She is the mother of an adult on the Autism Spectrum. She is also a member of Forum for Autism..

Next: Why we hurt ourselves and people we love and how to fix it.

(Pictures courtesy stemcellforautism.com, www.parentingnation.in. Images used for representation purpose only)

Training parents of children with autism

Most therapies centre around treating autistic children. This centre, the only one in Mumbai, trains parents to deal with autism.

by The Editors | editor@themetrognome.in

It’s a cosy space located very close to Khar railway station, and at first glance, the hustle and bustle doesn’t reveal much of what goes on behind its doors. Frankly, SAI Connections initially seems like any other place that would counsel and house autistic children for a few hours every day, much like other therapy centres located all over Mumbai.

Then you get the chance to meet the centre’s director, Kamini Lakhani, and once she starts talking about what the Centre does and how it imparts training to parents of children suffering from autism, you begin to realise how simple and powerful the idea behind the Centre really is. Kamini says, “If you train a parent [of an autistic child to deal with autism], you’re training them for life. That training stays with the family forever.”

She should know. She and her husband, Anil, started SAI (which stands for ‘Support for Autistic Individuals) in 2004 for deeply personal reasons. “My older child, Mohit (in pic on left, with Kamini), was diagnosed with autism when he was three years old,” Kamini remembers. “I was completely devastated. I looked for information online and everywhere else. Then I gathered all the material I had collected and I remember flinging it in the doctor’s face, asking him how it was possible that such a bright, beautiful three-year-old boy could have autism…” she says.

After the initial phase of denial came slow acceptance. The couple was living in South Korea at the time, and made several trips to the US to get better services for Mohit. During this time, they truly began to receive an education about autism. “In the course of 15 years, I studied and trained to be the best teacher I could be for my own son,” Kamini says. She went on to become a board-certified Associate Behaviour Analyst, certified by the BACB (Behavior Analyst Certification Board), USA in June 2005. Four years later, she completed her RDI (Relationship Development Intervention) and is the only BCABA and RDI Program certified consultant in India.

She started SAI Connections in 2004 after moving to India in 2002. “I realised there was an urgent need for a Centre that would help not just autistic children, but also impart training to parents on dealing with the disorder,” she says. “Unfortunately, I still find that most intervention for autism in India happens at the level of special education and speech therapy – treatment for mental retardation. “Most people, even educators, have not heard of RDI for autism. We need to spread awareness about it to help the millions of children and their parents in the country,” she says.

What is RDI?

Relationship Development Intervention (RDI) is the process that ‘corrects’ the ‘feedback’ between an autistic child and the parent. “In a developing relationship, there is a ‘feedback system’ between the child and his parents. But with an autistic child, there is a breakdown somewhere. The child does not give feedback, so the relationship is skewed. As RDI consultants, we are trained to assess where this breakdown is, see how the parent is behaving,” explains Kamini. “This goes to the core of the issue and helps in normalising the relationship. We change what the parent is doing. This changes what the child is doing. Hence, we actually bring about a co-regulation in behaviour.”

“The disorder is hardest on those who are closest to the child – the parents,” Kamini explains. “Unfortunately in India, there is not much awareness about the symptoms of autism. Even teachers in schools are unable to spot the symptoms. A child suffering from autism is normally branded as a hyperactive, troublesome child by both parents and teachers.” She adds that their inability to socialise appropriately, their non-understanding or inability to interpret social cues and the fact that most of them can’t fit in with peers, sets them up for bullying in social settings. “We need to train schools and parents everywhere. Fortunately, we are slowly seeing that schools in Mumbai are getting more open to the idea of training teachers and hosting sensitisation programmes to deal with autistic children,” she says. The training, she says, needs to focus on dealing with aggression, or a change in behaviour.

What SAI Connections does

The Centre is an activity space for autistic children with active participation from their parents, and stresses on RDI. “We train them in art, cooking, vocational skills. There is also physical activity, a time set aside for music,” Kamini explains. “We have 25 special educators, one cccupational therapist, one speech therapist, five teachers’ assistants and a group of dedicated volunteers.” Parents must mandatorily be a part of the activities – they are invited to attend, be a part of the sessions or simply sit and watch. The Centre ensures transparency in functioning by involving parents in every step of the process, and every room has CCTV cameras that keep watch on all parts of the Centre.

SAI Connections has also, since last year, started a training programme for potential educators in RDI; this is a certification programme lasting over a year. “We have already trained four individuals, and many more have enrolled,” she says, adding that the programme involves training, working with families and providing consultations under supervision from programme directors, at a cost of about 9,000 USD per year. Kamini also receives many queries for online sessions and has already imparted training to individuals in Bangalore and Delhi.

“Ultimately, only proper training will help in a deeper understanding of autism. The numbers of autistic children are staggering, and so many more are not diagnosed yet. The biggest mistake people make is to think that children in the autism spectrum lack something. They are hugely capable individuals and we must never give up on them,” she says.

Connect with Kamini Lakhani at SAI Connections & SAI Child Development Center, 201, 2nd Floor, Bhagya Ratan Niwas, above Prabhu Jewellers, 3rd road, Khar (W), Mumbai. Call 022 2605 0992/ 26050991/ +91 98203 14925. Email sai.connections@ymail.com/ saiconnections01@gmail.com.

(Pictures courtesy SAI Connections)