RDI – The Metrognome

Mothers who are exposed to Relationship Development Intervention are better able to visualise the future for their autism spectrum child.

by Kamini Lakhani | saiconnections01@gmail.com

Part 12 of the Autism diaries.

I recently had a meeting with parents of a five-year-old. The mother did not seem to understand what was going on with the child. She felt that because she had left her child alone for one day, his autistic symptoms had aggravated overnight. I could see that the child was very clingy, he was not able to communicate and had a very low body tone. Even though he was clinging to his mother, the eye gaze was out of sync and he seemed disconnected. What the mother said concerned me even more – she was worried about what would happen to her child in his later years. She was not clear about what she wanted for her child – her major concern seemed to be about his speech.

This is a very common scenario. I definitely don’t mean to belittle the mother or her feelings in anyway. She needs help in terms of acceptance of the situation, pacing herself to focus on the present and worrying less about a distant future. The feedback loop between the mother and child is compromised and definitely needs rebuilding. The core deficits of autism stood out menacingly with this child – his lack of motivation, emotional sharing, meaningful communication, etc. All this would warrant the implementation of the RDI Programme (Relationship Development Intervention). In addition to all of this, his speech and motor issues would need to be handled by experienced Speech Language Pathologists and Occupational Therapists.

This scenario stayed with me through the next day – to my weekly group meeting with my empowered moms, who have been on the RDI programme for two years. I now wanted to see where they all stood. So I gave them this little exercise to do: they needed to put down their thoughts regarding the following questions – What is it that you want your child to achieve? Suppose you did not have any restrictions in your life (in terms of money, family situations, etc.) what kind of optimal educational scenario would you visualise for your child to achieve the vision that you have of him or her?

The mothers started to write quickly. When they read out what they had written, I was amazed by the clarity of thought. Even more amazing was the fact that each mother had understood her child’s potential and strengths accurately.

Here are some examples:

Viji: “I definitely want to work on repairing the core deficits through RDI. Besides a good GPR (Guided Participation Relationship) with me, Vishal should be well connected with other family members and friends. I want him to develop his culinary skills in order to develop an option for future employment. I want to hone his musical skills so that he spends his leisure time fruitfully. He should also be physically active and be part of some outdoor games such as cricket, basketball. He already does take part in some of these.”

Uma: “My daughter Shraddha should be able to engage in deeper level thinking, so that she is like any other typical girl. I want her to have meaningful communication, which will lead to an independent life (since she is very skilled too) I want her to be able to handle money efficiently and that will require some specialised training. I also want her to engage in some sports activity in the evening so that she can spend her evenings in a meaningful manner.

Priti: “I want my son, Tanay, to be totally independent. For this he requires training with self help skills, communication and language development. Through the RDI Programme, he has developed in terms of social and emotional connectedness and awareness. For further independence, he needs to also learn basic math and proper use of money. I also want him to engage in some painting, cooking, pottery or music. These could be looked at as leisure skills and these will enable him to spend his free time meaningfully.”

My heart was filled with joy. Two years ago, these women were just like the young, vulnerable mother described at the start of this column. Look at what a long way they have come! What beautiful empowered moms! I am impressed with their understanding and their voicing of opinions with authority.

We’ve all come a long way. I think about one of Dr Gutstein’s power point slides which I had encountered during my training.

•ASD children teens and adults with average and above IQ, represent about 2/3 of all people with ASD:

(About .66% of the world’s population or 40 million persons worldwide)

Only 10% find employment

Only 3% live independently

Real friendship and marriage is less than 1%

This slide that had shaken the daylights out of me. This had actually goaded me to train professionally as an RDI Consultant.

Can you imagine what will happen if all parents start feeling empowered and start thinking positively and proactively? Hopefully, the above slide will be modified! The sky is the limit. These mothers are so motivated that they will reach for the stars! As their consultant, I feel like I’ve accomplished my mission!

India has a handful of RDI Consultants, reaching out and guiding parents. Are you interested in becoming an RDI Consultant?

I invite you to join me in creating these beautiful rich tapestries for each family. The weave of your thread in another’s life may create a legacy – which will remain even when you no longer do…

Please feel free to reach out to me for more information, at saiconnections01@gmail.com.

This column concludes the series on Autism Diaries. 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.

(Picture courtesy www.mindfulguideconsulting.com. Image used for representational purpose only)

When less is more and more is less

It took a child on the Autism spectrum to explain life’s true meaning, help evaluate my close association with autism.

by Kamini Lakhani | saiconnections01@gmail.com

Part 5 of the Autism Diaries – When a 9-year-old explains life to you.

A few years ago, I was working with this student who was around 9 years old at that time. We had spent a wonderful hour together and I had managed to test out some very important hypotheses with him. In that relaxed state of mind, I mumbled, mostly to myself, “You know, in your case, less is more.” I glanced over at him and asked, “Do you know what that means?” not expecting an answer. He answered, “Yes, less is more, and sometimes more is less.” I almost jumped out of my skin! A simple truth, but spoken so sincerely and almost philosophically! Needless to say, I will never forget this statement or the wisdom that it was spoken with.

Since then, I’ve applied the ‘less is more’ philosophy to many aspects of my life. So, recently, Bill Nason (Author of ‘The Autism Discussion Page’) put up a very interesting question on Facebook. He addressed ‘veteran’ parents (with older kids/adults on the Autism Spectrum) about what they would like to share with parents with newly diagnosed kids. There were interesting recommendations, all spoken through experience, and hence all valid.

I did not answer immediately, as I had a hundred thoughts running through my mind. If I had a chance to redo my innings with autism- what would my top 3 recommendations be? What would I do differently?

1. I would take more care of myself when the diagnosis came in.

The diagnosis of autism is a deadly one. It takes so much from a parent, who, at that point of time, is devastated. I remember crying myself to sleep and waking up crying. This went on for a few days…till there were no tears left. Yet, in that frame of mind, one only wants to help the child and do whatever it takes to somehow ‘throw this diagnosis off’.

I recommend that all parents book themselves for a few sessions with a counsellor or a Mental Health Professional. Work on yourself, strengthen yourself first. You don’t need the guilt. Hand holding is required through one’s own grief too.

And then, get ready for the marathon.

2. Make sure you continue to spend quality time with your other children, too.

If there is one thing that I would definitely redo, it would be spending more time with my daughter. Sometimes, I feel I was so overwhelmed with Mohit’s diagnosis, that I was not a 100 per cent present with my daughter, Tanya. To date, she says that I love Mohit more. Much as I try to explain that I don’t love him more, that he needs me more, it doesn’t quite sink in.

Parents who are working with the RDI (Relationship Development) Programme under the guidance of a consultant are far luckier. The consultant is trained to look at their daily schedules and make valid suggestions with regards to spending time with their other children and leading a more balanced life.

3. Be selective with therapies.

One size does NOT fit all. Don’t jump on to the band wagon of speech, special ed, OT etc. These are all helpful therapies, but they are more useful with better understanding of your child and what he or she really needs. Take help from an expert who will help you understand Autism better, somebody who will take an objective look at your situation and make the right and useful recommendations. A customised programme is required, not a trial and error program.

There are several permutations and combinations that will apply to your child. There are the Core Deficits and then there are the Co-occurring Conditions. The co occurring conditions are different for every child on the Spectrum, hence you may see this diversity in people on the Spectrum. (See rdiconnect.com for more information)

I was not aware of this at that time and hence I tried everything that the Western World had to offer. Definitely, I could have been more selective. I should have studied more and tried less.

This is where I feel the ‘less is more’ concept really works!

Here is something that really resonates with me-

“Parents have therapists come in their home and tell them what to do.

They give their power away.

Parents need to focus on healing and empowering themselves. They must shift their beliefs about autism. Once the parent knows who they are….the child will respond.”

– Lori Sheyew

Do you know who you are?

And what resonates with you?

Less is more… or more is less?

At SAI Connections, we follow the RDI technique, which not only helps children on autism spectrum but their parents as well. Feel free to send questions on your mind to saiconnections01@gmail.com and 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: The one thing that makes you stronger with time…and it’s not experience.

(Pictures courtesy www.fwdlife.in, www.dnaindia.com. Images are used for representational purpose only)