Book Review: Plankton Dreams

I belatedly heard about Tito Rajarshi Mukhopadhyay’s newest book, Plankton Dreams: What I Learned in Special-Ed, which he wrote in 2015, so my review here is two years late. In my opinion, that’s no sin. We authors get lots of reviews in the beginning, but few later on. Since this book deserves your attention, it’s good to write about it later on too.

For those who have not heard of Tito, he is Soma’s son, the first recipient of RPM, or however she referred to teaching her son how to communicate at the time. While everyone else with autism got 1+1 and play-doh, he got physics and Socrates and a true classical education. This is home-schooling Soma style. When scientists heard about Tito and his erudition and independent skills typing in a very autistic looking exterior, they wanted to study him, test him, and so on. I first heard of him just before I learned to type. My experts said he was “one in a million,” and my ABA supervisor said he wasn’t really autistic because his typing proved he had been misdiagnosed. In other words, he has been knocking down their doors for a long time and each book pushes a bit harder.

This memoir “novella,” (it is a short book), is sad, funny and biting satire. When Soma and Tito moved to Austin, Texas from India so she could teach communication to autistic kids, Tito had to go someplace during the day while she worked. The system being what it is, this brilliant, educated young man who moved autistically, got sent to a special day low expectation autism class. He used this time to analyze, like an anthropologist or social scientist, the absurdity of his situation. He studies “scientifically,” how people react to him sniffing their heads, rummaging in their purses and spinning their chairs. All for the sake of science! He savages the system.

“I created my own learning goals…” he writes. “I analyzed the responses of people to these situations—what I call my social experiments. I became an empiricist. Why shouldn’t the autist study the neurotypical?”

Here he conducts a head sniffing experiment on his teacher, among others.“Mr. Gardener…did not want me to sniff his head. He would rather dodge my approaching nose or stand on his toes so that my nose could not do what it longed to do. Mr. Gardener was bending over his desk, providing a rather complete view of his head.” And like a scientist, he collected data. “He jumped higher than the bus attendant—I could tell. It was a perfect jump, his star like head antigravitating away from Planet Earth.”

He describes the people in his world in special-ed: the students, the teacher, the aide, the teaching assistant, the administrators, the bus driver, the do-gooders (“Mr. Goodness Gracious”), and also his own boredom in this environment. Tito conveys his surreal existence, bored and analyzing his boredom through his sensory lens of highly educated philosophy. Sometimes the book is laugh out loud funny. Sometimes it is tragic-comedy. This book is unique because Tito is fully into Autismland perspective as he writes.

 

Part 2 Typing to Communicate/ Tips for Getting Started/ Give it a Go!

Guest Post by Susan Finnes

I am passionate about RPM! I realised that many others could use this approach – but how could they learn ? There were very few teachers and only one Soma! I started to share videos of myself and others working with Chris on my YouTube channel and people from all over the world started to contact me asking for help to get started.

I knew I could do more – Chris was telling me that he wanted to help others to learn, so in 2013 I began to organise annual Soma workshops in the UK and I set up a facebook parent support group (intended for UK families, but it quickly became international). This is the link to the group Unlocking Voices – Using RPM https://www.facebook.com/groups/627199673958985/

My objective is to EMPOWER PARENTS so they can learn Soma RPM , even without having direct access to a teacher – and to learn it correctly. I want to make it easy for people to try it and then to share their learnings, to make RPM accessible to people all over the world by providing free learning resources which supplement Soma’s books. I would HATE to think that RPM was only for the ‘rich’. I maintain close contact with Soma and encourage her to share her learnings on the facebook group. One of Chris’s helpers – Alexandra Hopwood is now a highly skilled RPM Teacher (she completed an internship with Soma) and she helps me to make short tutorial videos which have proved very popular! The video links are available in the RPM Learning Resources file (one of many free resource files linked to the facebook group).

Here’s an example of one of our videos : ‘ 1- How to do written paper choices – basic principles’

https://www.youtube.com/watch?v=slfnouqFqnEake

If you are wondering about RPM I’d like to urge you to join our group and make use of the free resources – what have you to lose? When I presented at the 2017 HALO RPM conference I was delighted to meet many parents who I recognised from the Facebook group and who have now gone on to set up their own local support groups and trained to become RPM teachers themselves.

I know that many parents join the Unlocking Voices- Using RPM group and see the examples of RPM working but fail to try it themselves for months or years. Or try it a few sporadic times and drop it for months or years before finally giving it a proper go. For many, RPM seems to be a ‘last resort’ – nothing to lose.

Why is this happening?

I think many people don’t believe or are afraid to believe for their own child – particularly when all the so-called ‘experts’ seem to spend so much time telling them what their child CANNOT and will not be able to do. Why would we not believe these experts? Every time your child fails to follow a simple instruction, or does not respond in a neurotypical way to an event, eg. no excitement at birthday/xmas, this serves to cement the belief that there is a huge lack of cognitive ability. On the other hand many parents I have spoken to will also say that their child is underestimated by teachers and give great examples which to me prove intelligence and learning capability eg . problem solving skills – finding escape routes, figuring out how to use dvd players, knowing when food cupboards are open , responding to their name. This proves that the child is capable of learning if taught in the right way.

Some parents I have spoken to do not believe in themselves – they do not believe they are capable of delivering effective RPM sessions. I can understand this – particularly if you have seen Soma or another experienced teacher. They make it seem so easy and then you have a go and make a total mess of it. Believe me, we have all done that ! I think it teaches our children a valuable lesson – we are showing that you will not be perfect when you are learning a new skill –so not to be afraid of making mistakes and not to give up but to keep practising . You are not going to do any damage to your child by trying a session and not delivering it perfectly – you will only get better with practise.

I think that some parents may try RPM a little and “fail” without realizing they haven’t tried in an effective manner or given their child nearly enough opportunities to practise and progress in his skill and tolerance. Often seeing or skyping with an RPM teacher can rectify this, but equally there is a need to understand that RPM progression will be different for each student – so it’s ok to try it without thinking there needs to be an initial BIG BREAKTHROUGH or it’s a failure for the child. For many students the process is a long one – lots of daily practise for a year or longer without open communication. This takes resilience from parents who are ‘desperate’ to talk to their child and seek proof that all the time invested will be worth the effort.

Those parents who haven’t tried yet may be daring (or maybe afraid) to hope that their child will type independently and share sophisticated thoughts IMMEDIATELY. Then if they try and don’t succeed in this there is a feeling of desperation and failure.

I understand all of these feelings –

I know any time I’m thinking about learning something new, a few things happen inside of me:

– I think about it and usually order a book /do some internet research
– Tell myself I don’t have time.
– Talk myself out it.
– Think about it some more.

– Tell myself I need more training /help
– Procrastinate some more ( I have MANY unread books!!!).

 

What I know now is that the MOST IMPORTANT THING is to simply TAKE ACTION AND TO HAVE A GO WITHOUT EXPECTING PERFECTION!! Then to KEEP GOING and LEARN from mistakes.

 

Please don’t judge your child’s potential by what he does with his body – Ido explains this really well in Ido in Autismland . I urge you to read this book and to share it with anyone who works with your child.

Chris is 18 now and we have to think about his future. This year we talked to him about the Mental Capacity Act -all Chris’s responses were made by pointing to a laminated letterboard. You will see on this clip that on this day he needed more tactile feedback – so the teacher is pushing the board towards him as he touches the letters. I like what Chris said ‘ the capability of the body and the mind are completely different’ https://youtu.be/syt6QnV_6vA

A;You may have heard your mum talk a bit about this , As you get older you’ll start to hear the term ‘mental capacity’ more and more…. what is your understanding of this?

C: IT IS ABOUT IF THE PERSON HAS THE CAPABILITY AND INTELLIGENCE TO MAKE DECISIONS PERTINENT TO THEIR LIVES.

A:Very good…what type of decision do you think, give me an example of a decision?

C:WHERE THE PERSON WANTED TO LIVE .

A: Do you think sometimes people assume people with autism don’t have mental capacity (eg I’ve come across people who were deemed not to have mental capacity but actually did..)

C; THE CAPABILITY OF THE BODY AND MIND ARE COMPLETELY DIFFERENT

A; I like that point – eg look at S Hawking– his body vs his mind. Do you think that’s why a lot of people struggle/confuse the two?

C: THEY CAN’T GET PAST OUR BODIE.S

Thanks for taking the time to read this – I hope you are inspired to just HAVE A GO !

 

Sue Finnes is an autism advocate, YouTube educator, and the moderator of Unlocking Voices-Using RPM Facebook parent learning group. She is the mother of Christopher, aged 19, who describes himself in this way, “I am intelligent but happen to have a body that doesn’t obey my thoughts.” They live in the UK.

 

 

 

Typing to Communicate: Tips for Parents Interested in RPM— Just Give it a Go! (Part1)

 

I’m honored to share this informative and personal essay by a brave and generous mother, Susan Finnes. The determination of some mothers to get communication for their autistic children, even when local communication instructors are not available, amazes me. In some cases, people may have easy access to Soma, or other skilled people who teach typing to communicate, like my mom started to do. These teachers can transform lives.

But, what happens to people without access to these teachers, who live far from the opportunity, or who simply cannot afford to pay for lessons? Thankfully, in addition to books, there is now an online forum for parents and YouTube training videos that the author of this essay, Sue Finnes, put together. I think this labor of love that that Sue and her son, Chris, have undertaken is brave and incredible. They are willing to show their mistakes and their successes to hundreds of unknown people. I admire Chris for being willing to let people judge—and Sue, the same.

I am incredibly grateful as an autism advocate that they have created these educational and support networks to help people with autism and their families.

Because it is long, this essay will appear in two parts. In Part 1, Sue shares her journey with Chris into independent letter pointing. In Part 2, which I will post tomorrow, she shares practical tips for those interested in pursuing this with their own children or students.

Thank you again to Sue and Chris.

Ido

 

Questions I had when I first heard about RPM in 2009 :

What exactly is RPM? How can I learn RPM? Will it work for my child?

I scoured the internet looking for answers, looking for examples and could not find a lot of information. I had seen a short video of Soma (Soma Mukhopadhyay, who developed RPM) a couple of years previously and had formed the opinion that RPM was not for me. I saw her talking quickly, maybe even doing a poem with a child who did not look at all interested. Why on earth would I want to do this with my severely autistic non-verbal child – surely it was more important to focus on speech and how to dress himself?

Christopher was aged 10. His speech had not developed, we had made some progress with getting dressed and we worked mostly on social/interactive play skills. His communication was limited to the use of gestures to show what he wanted (eg. pointed to his bottom for toilet) and to taking us by the hand to lead us to what he wanted. I had done some basic word picture matching using flash cards. I was desperate for Chris to have a communication method – something more than a PECS system (where you have pictures of objects) and something others would be able to understand – so not sign language. I looked again at RPM – I saw a video this time of Soma teaching a child to point using written paper choices and realised that this was something we could possibly work on. I experimented – using a well-read Teletubbies book – asking what did the Teletubbies spill ?– tubby custard or water? I ‘m ashamed to say now that I was surprised when Chris chose the correct answers – you will see me smiling on this clip from Oct 2009 https://youtu.be/ajDvQEUBgqE . I thought I’d always believed and accepted him , but now we were moving onto something with huge potential ! Here is another short clip November 2009 – you will see that I quickly moved on from Teletubby books to the history of Bonfire night https://youtu.be/BIBn67V608Y . Please note that my techniques here were not very good !

From that moment on I exposed Chris to more age appropriate topics and began to talk to him more about everything –and started WRITING EVERYTHING DOWN assuming that he understood. We worked on getting him to point to the written choices. We took his interests /motivations and expanded them – bringing him interesting information eg singing twinkle twinkle lead to talking about the solar system. I did not think that Chris would cope with a long flight to the USA to see Soma , but found out about the Barrett family in the UK whose daughter Heathar had achieved success with Facilitated Communication, so I enlisted their help and early in 2010 we began to learn how to support Chris to type. I remember them telling me that I had to believe that Chris had been like a sponge taking everything in all these years – but with no means of showing us. It took MANY MONTHS of daily practise before we were able to get anything from him, which made sense, but when we did, it showed me how intelligent he was. I and Chris’s other helpers practised with him every single day and we were eventually giving light elbow support while he typed.

Fast forward to 2011 – I heard that Soma was in the UK and managed to get some sessions. I didn’t fully understand RPM – i thought i’d just take the good bits and adapt it. This was another WOW moment for me – the types of lessons Soma presented were way more advanced than we had been doing . Even though I saw Chris pointing independently with the stencils with Soma , I decided that I wanted to stick with FC for longer answers and would do written choices for other questions. Again we stepped up to the challenge – I started to work my way through a Biology student workbook, another helper did Physics, another Maths and Poetry. We made good progress -I realised that Chris was capable of learning , and was finding it interesting and stimulating. We were able to see Soma again in 2012 – this time I and Chris’s team were fully prepared ! We all studied Soma’s red book beforehand and we analysed in detail what she was doing in her sessions .

The penny dropped ! This method of teaching was not just about presenting information and checking student understanding –the stimulating information was the tool which enabled you to engage the child while working towards the skill of INDEPENDENT pointing/typing . It also enabled you to stimulate thinking and reasoning skills and taught the student how to express his thoughts and opinions. From that moment on we changed from supporting Chris to type , to teaching him the skill of independent pointing – beginning with the stencils.

Chris had at least 3 RPM sessions every day with different tutors. Initially there was lots of prompting – verbal ( eg. ‘up up, , lift your elbows’ ) , directive (eg ‘touch here’) and air prompts ((waving your fingers over the stencil in the direction of the letter). If Chris was struggling to get a letter we also had to motor model the movement with him – showing him hand over hand ‘this is how you touch the B ‘ (doing it twice hand over hand then immediately asking him to do it himself) ‘now you touch it’. I set up records on my PC – and after every session the tutor would record their notes from the session. We found that the process of writing up notes also helped us to analyse our own sessions – looking to see how much talking we were doing and how many responses we were asking for. Many sessions were filmed and I also set up skypes with Soma to get feedback. Up until 2016 Chris was having a minimum of two RPM sessions a day ,5 days a week . He is currently using the laminated letterboard and we are working on independence by beginning to get him to hold the board himself for a few letters/short words . Here is a short clip to illustrate.. https://youtu.be/vGL5Xb5o2lA

We have incorporated lots of purposeful movement into his programme – physical exercises, dancing, picking up and passing objects etc. I feel that we would have made more progress but have had setbacks with Chris’s health – he developed epilepsy and has frequent seizures which take time to recover from. As he is transitioning to adulthood Chris now also attends a skills centre two days a week and works on motor skills, living skills and independence skills. He is also learning to use the letterboard in different environments and with different people.

 

See you tomorrow for Part 2!

 

Communication Changes Lives- The Poet

I have never met Sami Kadah, nor did I know about him and his poetry exploring his life with autism, until his communication partner, Jeff, wrote to me.

Sami was locked inside with no communication for 23 years and he has been typing for two. It seems he has a lot to say. He says it in poetry form. In his poems, he opens his soul to pour out how autism controls his life. He writes so that each word matters. He is stingy with his words. They each say a lot.

Sami hurts from autism and he is worth reading. Communication changes lives, for sure.

Number 15, by Sami Kadah 

I am superstitious.
I am also religious.

I am smart.
I am also an idiot.

I want help.
I am also helpless.

I want to be independent.
I am also incredibly needy.

I am intentionally thoughtful.
I am also unpredictably impulsive.

I am physically affectionate.
I am also agressive and violent.

I am human.
I am also autistic.

Learning to Communicate Changes Lives, Part II

My book, to my amazement, has impacted lives in many far-flung places. I get letters from all over the world.

I was so happy to read this article from Ireland that more people should read. This isn’t an Irish tale. It’s an autism tale. Once again, a mind and a soul is set free by a letter board. I love how Caoimh (pronounced Keev) was liberated by his persistent mother. I toast all the persistent mothers who don’t give up, from Soma, to my mom, to Caoimh’s mum in Ireland, and all the others. He is one of a measly 40 in Ireland who type, but I know there will be more.

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Learning to Communicate Changes Lives

Here is proof that learning to communicate changes lives. I get thrilled every time I hear how my book has helped others move to communication. Life misunderstood, isolated and silent is not an adequate result for  years of therapy and a parade of specialists who marched through this family’s house.

There are stubborn people who have to listen to us, but they won’t, I’m afraid. But there are open people who have listened.

Things are improving, little by little. Here is one family’s story.

Not Hiking Season

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I miss hiking tremendously. Where I live my winters are mild, my summers like a furnace. All winter and spring I hike or mountain bike every day. I love to be in nature and I love to move on trails looking at the hills and the old oaks. The tall grass turns from green to straw yellow. The coyotes look rangier and thirstier and the snakes start to interfere with the carefree movement of the hiker who now avoids that narrow path lined with foot-high grass.  That stick on the trail or that pile of horse manure over there? Look again– it has a rattle on its tail.

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I prefer not waking up at 6 AM to beat the heat and I’m no fan of rattlesnakes, so I must bide my time waiting for the weather to cool so I can hit the trails once again.

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The Ability to Communicate Creates Autism Advocates

In this video is a friend I have mentioned in previous essays. He has also posted here as a guest author. He is a few years younger than me and we have known each other many years. Our moms are friends and talk to each other about autism (what else?). His name is Dillan Barmache.

Dillan is going to my old high school and he is going to graduate with a diploma in a year. Then he will take on the world.

He has been infected by the same bug I have been — a need to educate and change the way professionals look at our type of autism. I am proud to share his presentation at Stanford University to medical professionals.

His message is identical to mine. Open your minds. Let us out of our prisons.

I’m thrilled to see so many people with autism be heard, be advocates and educate.

Try

Life is hard and sometimes it hurts. It has unexpected hardships and daily challenges. It has joy too, made richer by overcoming the hardships.

This beautiful little clip shows all that. I think it has a great messsage we forget too often.

You’ve got to try.

The only thing that’s in my way is me.

 

1- My New Book

I am a bit ashamed to realize that I haven’t written anything in my blog since January. To be fair to myself, I have been writing another book. I have finally completed my first draft and hopefully soon I can let you know more about it. I think this book will be more accessible for people who know nothing about autism but it will also be interesting for those who live it every day.

Writing a book is a big undertaking. My typing is slow but I eventually complete what I start. I am eager to let you know more about it and will in the near future. I thank you all for your support and patience with my long silences over the last two years.