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LucyGransnet (GNHQ) Thu 19-Jun-14 16:32:22

Autism: turning disaster into adventure

When Rowan was two and a half, he was diagnosed with autism. Since then, his father Rupert Isaacson has embarked upon a journey to turn disaster into adventure.

And be it on a horseback journey through Namibia in search of healing shamans, or making endless photo books for him to pore over, Rowan's grandmother, Polly, has been present every step of the way.

Polly Loxton

Autism: turning disaster into adventure

Posted on: Thu 19-Jun-14 16:32:22


Lead photo

Rowan and Rupert on their long ride home

My son, Rupert Isaacson, is a writer, horseman and campaigner for indigenous land rights, now living in Texas. After Rowan, his longed for son, was diagnosed as autistic at the age of two and a half, a determination to turn disaster into an adventure grew out of his despair.

One day his toddler son ducked under a fence and lay down among the hooves of a band of horses. Rupert's fear turned to wonder as Betsy, the alpha mare, gently whiffled at the child and stood quietly while Rowan gazed upwards and Rupert carefully retrieved his son. Seeing Rowan so relaxed, Rupert began riding Betsy holding Rowan in front of him. Soon an idea took shape. Rupert decided to combine his two greatest passions, horses and the indigenous healing practises he had witnessed, into a wild enterprise - to ride through Mongolia with his deeply autistic little boy in search of shamans (healers) to help him. His book, The Horse Boy, tells the story.

Ghoste, the shaman in Siberian Mongolia, instructed Rupert to make three more journeys to other shamans to make the healing complete before Rowan was nine. Rupert's second book, just published, is The Long Ride Home, and it tells the story of these journeys and the course their lives have taken in the years that followed. My son invited me to come on the first of these journeys, to Namibia. I am South African born, and had accompanied him on a trip to the Khomani bushmen in South Africa in the euphoric period at the start of their land claim. Rupert took Rowan on two other journeys to the Rainforest in Queensland, Australia and the Navajo Reservation in America - both with extraordinary results.

Adventures come naturally to Rowan. In Namibia, we slept in two tents on the Land Cruiser roof, mother and father in one, grandmother and grandson rolled together in the other. The Bushmen in the healing village are quiet and calm people as we experienced them, the healers dignified and kind. Rowan liked them - particularly the healer's wife who was a great comedienne. He was peacefully at ease during the night time healing dances. On the second night, after several laying on of hands, he got up, walked out of the circle to a woman with a baby and ran his hands over the little velvet skull. The healers stopped. One said, "He wants to be with the children now", and the ceremony stopped without fuss.

As his grandmother, my relationship with Rowan is deep, in spite of living either side of the pond. Even when most deeply shut away, he was responsive to close hugs and rhymes and songs. Our relationship was warmly physical. He could relax in my arms even when distressed.

As his grandmother, my relationship with Rowan is deep, in spite of living either side of the pond. Even when most deeply shut away, he was responsive to close hugs and rhymes and songs.

Having been closely involved with many different infants, we, his grandparents, noticed Rowan's developmental differences from his first year. We asked careful questions such as, "was he saying mama?", but dared not suggest there was cause for concern before it became apparent to his parents for fear of alienating them. However, unexpectedly, the autism diagnosis did put a strain on my relationship with my son. Help was and was not wanted. There was no debate. Rupert and Kristin tackled it alone. But our family has always stuck together and grandmothers play a vital role in all children's lives.

In Rowan's infant years, I went to Texas as backup for Kristin when Rupert was away working. When they came to London, they left Rowan with me to take a break for a few days. Then Rowan would sleep in my bed - or wake. I don't mind disturbed nights. I would help him sleep by rolling, bouncing, rocking and singing and looking at the stars. I have tried to move Rowan towards social normality more than my son liked, such as not eating his meals on the floor but at table, made endurable by reading aloud The Lion King for about four years on the trot.

Rowan holds court in London every summer, with visits to family members in Wales. He has developed particular and distinct relationships with his aunt Hannah and his older cousins Zoe and Lewis, all with their particular jokes and games. He has a great capacity to inspire dedication and the many volunteers who have worked at Rupert's therapeutic centre in Texas have grown to love him and come back to visit him.

When he was little, it could be heart wrenching when he was overcome with longing for something he felt was lacking. For a time he wanted a sister very badly. As his experience of supply was supermarkets, he begged his mother, in tones of real anguish, "Where can I buy a sister? When can I be a boy who has a little girl sister?". But this was longing from a distance. Playgrounds and actual children bewildered and alarmed him. He still prefers adults, with whom he is entirely comfortable and confident.

This summer he has said firmly that he wants to stay in London, have people visit him here and not travel about. It is a deep satisfaction to see him take control of his life in this way. My role is to make him his books. His 2013 book weighed nearly six pounds - too expensive to post - so he had to wait months for me to bring it on my April visit to Texas. I will break events into more manageable volumes in future.

From the time Rowan was about three, I have written and illustrated books about him and his doings, to help him understand who he was. Later, I noticed that he looked intently at photograph albums so I began a habit of photographing our times together, and assembling the pictures in books, linked by narrative and rhymes and jokes. Some of these rhymes have become very important to him as reminders of happy states and he prompts "Oh how Rowan remembers...", and I have to recite the whole passage, to his deep pleasure. He pores endlessly over these photo books.

I am less important to Rowan now. He has his beloved entourage in the form of his parents, his mentor Jenny and Iliana and the many volunteers who help at New Trails, the centre his father has set up to help other autistic families. He has his own purpose in life and has set up - quoting his own words - "The New Trails Zoo and Wildlife Sanctuary, a forever zoo whose mission it is to rescue and protect animals from all seven continents". He has a very special relationship with his ducks at the moment. He holds them close to his heart, his face serene and beautiful. The ducks apparently feel the same way, laying their necks on his shoulder. Skin and feather, warm together.

He is a fine strong boy and will be thirteen at the end of the year. He is apprehensive about leaving the protected state of childhood, and with good reason. But he has his tribe at New Trails to support him. He is such a loving boy, he will need someone to love physically in due course, but sufficient unto the day...

Rupert Isaacson's book The Long Ride Home is out today and is published by Penguin Books.

We also have 10 copies of The Long Ride Home to give away to people who post on the thread.

By Polly Loxton

Twitter: @TheHorseBoy

trendygran Thu 19-Jun-14 20:21:39

Great to read ! Worked with Autistic Children for several years and still involved in the many problems faced by their families. So good to hear of such a positive story. Will recommend the book to others.

rosesarered Thu 19-Jun-14 20:28:48

My Grandson is the same, and also responds well to all animals. I know parents want to try anything that may help, and an outdoorsy sort of lifestyle and adventure probably will, but I draw the line at any kind of shaman. Autistic children, like all children need to know they are loved[ they won't reciprocate this usually] but they like family and extended family and anything that makes them feel safe.They will stay younger than their years for a long time.Owning a dog or cat and riding horses is great for ANY children but kids with autism all seem to respond so well that it can be remarkable.My Grandson froms attachments with certain people only.He is happiest when out for long runs, with his Dad, or bikerides, or fishing at sea, or anywhere in the fresh air where he can be active.My Grandson is lucky to have such great supportive parents, and so is Rowan by the sound of it.

Greenfinch Fri 20-Jun-14 14:26:31

Good post roses. My experience is the same and my grandson likes to help with chores rather than play imaginative games. He is never happier than helping in the garden and will spend hours weeding the path or cutting back bushes .He loves cooking and emptying rubbish bins and the highlight of his month is helping to take the rubbish to the tip. His ambition is to drive a dustcart and his sole reason for not wanting children is that they might distract him while he is driving !
We do have a wonderful local charity called the Me2 Club which uses volunteers ,mainly sixth-formers, to support children with special needs including autism to participate in mainstream activities. My grandson has someone to help him attend a swimming class and go away for residential week-ends once a year. We also have a local area called Camp Mohawk where the children can run free in the open air or go swimming in the heated pool as well as participating in indoor activities.

rosesarered Fri 20-Jun-14 18:33:10

The residential week-ends away are great for these children Greenfinch and also give parents a break.I wish my DGS still enjoyed chores [he used to] but now he is 9 seems uninterested.He was never happier than holding an important list in the supermarket, or laying the table for dinner, or brushing up leaves in the garden. Now he says 'nah, I want to play Minecraft'. The computer is both good and bad, for this reason. Teenagers with Autism can spend half their lives on the computer [and even some children who don't have autism too!]Communing with nature and with animals is just so good for them, they don't need to worry about doing the 'wrong thing'.I like the sound of Camp

grandmac Mon 23-Jun-14 17:19:57

Wow. That was a fantastic blog to read. I have no direct experience of autism but it sounds like Rowan is very lucky to have been born into such a supportive family.

Grannyknot Mon 23-Jun-14 20:04:38

I love your description of camping in Namibia, and the encounter with the Bushmen. I'm also South African by birth, and have travelled widely in Southern Africa, but sadly have never been to Namibia - where, I'm told, the star studded night sky is simply magical.

One day I'll go there and also sleep under the stars.

rachcian83 Thu 26-Jun-14 23:56:58

Great to read this, I attend the horse boy camp myself with my son in Gloucester with a lady called Dawn, my son loves it and the people there, I want to take him to all these places that Rowan went to as well now! Won't give up until I know I have done absolutely everything I can to help him! Have been reading about shamanism sounds very interesting even if its just going to the groups where they use drums etc, kids will love it smile P:S sorry I'm not a gran but I wanted to read it thank you x

thatbags Fri 27-Jun-14 08:47:41

I think disaster is too strong a word. A diagnosis of autism is not a disaster.

Greenfinch Fri 27-Jun-14 16:23:15

I absolutely agree thatbags.People with autism have some lovely qualities and should be accepted for who they are. It need not be a disaster. The same is true of any child with special needs. Challenging perhaps but not a disaster unless you allow it to be.

durhamjen Fri 27-Jun-14 22:06:54

It is a bit of a disaster at first when your child or grandchild is diagnosed. Many people have no idea what it means, and to find out that it's there for life is quite scary.
I took my granddaughter to school yesterday, and my grandson, who is autistic, came to get a newspaper.
I gave him the money so he could work out the change and stood at the back of the shop. He talked for a bit as he handed over the money, and then told me that he told her he was at home school. She went along with it, even though he has told her the same thing every time he pays for a paper.
On the way out of the shop he said that he had told her that he was at home school, then said that he thought he remembered that he had told her that before. That's an advance for someone with ASD.
Fortunately most people know him in the village, and he charms adults anyway, by asking questions even if he does not understand the replies.
This will go on for ever.

thatbags Sat 28-Jun-14 08:13:05

I was told recently, by someone who would know, that because of my family history, I have a "high tolerance" of autistic behaviour. In short I've lived with a lot of it both during my childhood and as an adult. It's not a disaster. Difficult sometimes, yes. Disastrous? Nope.

The story you tell about your grandson, jen, doesn't strike me as particularly anything other than, possibly, a little unusual; certainly not a disaster.

Nelliemoser Sat 28-Jun-14 23:55:18

IMO It is most definately difficult living with someone who lacks a proper concept of other peoples views, ideas and needs.
Particularly when it is supposed to be a mutually supportive relationship. Things get a bit one sided

Greenfinch Sun 29-Jun-14 15:36:55

Thank heavens for early intervention. We were dreadfully upset when my grandson was diagnosed with autism but he has had so much help and support. We know all about the incessant questions jen and hopefully when older they will learn it is not appropriate to keep asking. My grandson has a poster in his drawer at school written by his support teacher saying "do not ask questions you already know the answer to " Another says "remember to give other children their personal space. They do not like it if you come too close to them".

rosesarered Sun 29-Jun-14 16:10:54

The problem is, that they like asking questions they already know the answer to, it helps them feel safe to keep getting the same answers [it's wearing for us adults though!]My DGS never stops asking questions, and some quite difficult to answer.Do cats go to cat Heaven or Heaven where people are? How will he pay his bills when he is grown up?Who will look after him when his parents die?When will I [me] die[he wants the exact year that I will die.]Will I still be able to see him?Why do houses cost so much money? We would all like to know that one.Will his hair [light brown] turn black like his Daddy's hair? Why not? Those questions and many more, could all take place on our 10 minute journey to the sweet shop in the village.He is 9, intelligent and completely wearing to look after, although we do have some laughs together as well.Sadly, he has such mood swings and high anxiety, and has to take quite a lot of different tablets, just to keep him functioning.I think for parents, it's the sadness of knowing they will not be around forever to make sure nothing bad ever happens to their child when he is an adult. sad

durhamjen Sun 29-Jun-14 22:52:52

Just had a very interesting weekend, thatbags.
Yesterday, my grandson's football team had a coffee morning to raise funds. I went along to help. After about half an hour my grandson was in tears because there was too much noise, so I had to take him out for a walk to calm him down.
Today, there was a get together to give awards for all the teams at his sports centre. He cried during the game, he cried in the hall and he cried while waiting in the queue for his photos. His team are quite protective of him, but even they were asking if he was crying or if his eyes were just sweating. He's twelve years old.
This is one of the reasons he is hometaught, because of the idea of him going through his whole school life being permanently on edge because of the noise of ordinary living.

Greenfinch Sun 29-Jun-14 23:02:27

My heart goes out to you and your grandson jen. That sensitivity to noise is so difficult to cope with.

durhamjen Sun 29-Jun-14 23:17:31

Thanks, Greenfinch. When he was younger he wore ear defenders when we went anywhere there was too much noise. It's a bit difficult as he gets older, and you are trying not to make him appear different.
It's the same with questions. Twelve year olds are not expected to ask grown-ups so many questions, and to try and have reasonable conversations while not understanding the answers.
I can tell by the responses on here who understands what it is like. It's a similar thing to living with diabetes. So many people think they know what it's like, but it's completely different to what the nurses tell you when you live with the consequences, and sometimes it's hard to decide what to tell others in both cases.
Teaching him at home shows up all the gaps in his vocabulary. He can read, as in decode, but when he asks what does so-and-so mean, it gives you quite a shock to realise that he does not understand even the simplest words. It's quite scary.

Greenfinch Mon 30-Jun-14 11:57:18

I know exactly what you mean jen. My eldest son suffered from severe eczema as a little one and I mean severe. He would scratch so much that his skin would become infected and bleed ,he was constantly bandaged up and he hardly slept because of the relentless itchiness and consequent scratching .I got cross when well -meaning folk said they knew what it was like because their child had eczema .Actually they hadn't a clue what it was like as generally their child suffered from infantile eczema which though unpleasant ,is nothing in comparison. There are degrees of all disabilities and none so broad as in autism as I have come to experience.

rosesarered Mon 30-Jun-14 19:28:54

Very true greenfinch and durhamjen you need personal experience to know what you are talking about.The noise issue is a hard one, because when you take them somewhere you never know how loud things will be.
My DGS won't take part in any school [autism school] play, singing, dancing or even go up to collect an award.All the rest in his class will, and enjoy it.Even when you think they understand what you have told them, chances are that they haven't.They seem to live a life without limits, and are impulsive and sort of unknowable.DGS ate a whole packet of 24 jaffa cakes the other morning [at 6.30 a.m.] he was 'hungry' and it seemed quite reasonable to him.He then didn't eat at all for the rest of the day.
He has to be really pushed to get washed or brush his teeth [you have to do it for him even then.]he refuses to have his hair brushed except now and then and with a baby brush. He wants his bottom wiping. He has constant panic attacks and meltdowns.He can be fun at times, but also scream abuse at you [didn't know he knew some of the words.]

rosesarered Mon 30-Jun-14 19:31:53

Yes, it's certainly a challenge. When we are out with him, adults like him as he appears to be a very slim attractive boy with a shy polite manner.So far, nobody has guessed he has problems.

thatbags Mon 30-Jun-14 20:02:15

I'm sorry your grandson has such a problem with hectic noise, jen. I assure you, I do understand that. Had you mentioned the noise issue before? If so, I must have missed it. I have nothing against home-schooling. My sister home-schooled her four kids for several years.

durhamjen Mon 30-Jun-14 21:26:52

Yes, I have mentioned it before, thatbags, but, like you, I do not remember everything that everyone says.
Tonight I was looking after him while his mother took his sister to the baths for swimming lessons. He was on the computer on a website that I'd never seen before. The girl on it had the sort of face that autistic kids like. (He talks about trains as if they are people, about the shape of their noses) and this girl asked "Are you in love?"
What does that mean, he asked. I think I need to tell his parents about that site. I told him to play championship football instead. Safer.

durhamjen Mon 30-Jun-14 21:35:24

By the way, has anyone else noticed that Lorna Wing has died. She's the woman that thought of the autistic spectrum and set up the National Autistic Society. Obituary in the Guardian.

Penstemmon Mon 30-Jun-14 22:16:01

Yes I read that durham She once visited the school for children with Autism that was on the same site as the mainstream school where I worked and we went to the lecture/training session.