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Guest post: 'Holidays used to be survival exercises - here, my son's autism was accepted'

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MumsnetGuestPosts · 19/06/2014 12:33

My son Archie is 15, non-verbal, severely autistic and an adrenaline junkie speed freak. There’s nothing he likes more than surfing big waves tandem, or riding roller coasters - and anything he does needs to be fast.

He likes horse riding, too, but hasn’t always got on that well with the better known disabled riding activities - I think of them as being a clash of cultures. They do great things for a lot of people, but they don’t really do fast, and Archie doesn’t really do anything else.

There are more specialist organisations and camps for children with autism – the best known of which are the Horse Boy camps. These were set up by Rupert Isaacson - who told the story of how his son Rowan, who has autism, underwent a healing process via a relationship with horses in both a book and film of the same name. The camps have been going in the UK for a few years now. We attended an early camp back in 2010 – and found that while horses themselves may not be a magic key for everyone, spending time as a family in a judgement-free space, outside in the open and in an accepting environment can be healing. And, yes, horses might help.

My memories are mainly idyllic – a word not often associated with severe autism. We stayed in a yurt which Archie and his brothers, Joseph and Louis, loved, and although we weren't at an exclusive Horse Boy campsite there were so many of us taking part we didn't really notice anyone staring. That feeling of safety in numbers was a lifeline. I felt no need to apologise for any unusual behaviours. The children could all be who they are. Siblings could socialise with other siblings without having to explain or be embarrassed by anything. Volunteers helped Joseph and Louis to toast marshmallows, and we were able to join one of our neighbours outside their campfire once the children were asleep – a bit of a first for our camping trips. Four years later we still meet that particular family most years to have a surf, swap a year’s worth of news and share some food and wine.

The fresh air and sunshine meant the boys all slept deeply and well. And Archie? I remember him being calm – at that time a near impossible state for him to achieve. I have a photo of him just sitting, chilling out in a chair next to a horse. For an eleven-year-old Archie, that was something pretty extraordinary.

One of the most important things was how flexible the camp was - the rides were arranged around the children and their needs. Volunteers were positioned either side of the ponies so chances of falling were low and people were ready to react to any unexpected behaviour. The children rode bare back or in western saddles and were able to lean on adults either side. They were encouraged to groom the ponies and to stoke them and cuddle them. Archie, to my surprise, bonded with a horse called Lucy. He prodded her (she didn't seem to mind), stroked her and spoke to her (he said ‘neigh’). At that time, he’d paid little attention to animals, so this was a Big Thing for us.

In ‘Horse Boy’, Isaacson writes about the difference between cure and healing. Healing is about learning to live happily and productively with autism. For us as a family, the weekend really was healing - we had a holiday, a proper one, and our first since autism. Previous trips had being more of a survival exercise than a holiday. It wasn't just about the horses - although their movement helped - it was about being outside, having a bit of freedom, and it was about Archie being accepted for who he is. There was no need to contain him, and so everybody’s shoulders dropped - our muscles unknotted and we healed as a family.

We see the same effect when Archie is surfing or walking on Dartmoor. In all these places he has space and a freedom of movement. When we climb to the top of a Tor to have lunch (we do this often) we share the same experience of space, wind and the beauty of the view. It was in one of these moments, when I saw that Archie was getting just as much from the experience as me, that I began to make peace with his autism. When Archie rides a horse, it calms him in exactly the same way it calms me. When he surfs, he experiences the same exhilaration catching a wave as every other surfer. During these activities, his severe autism doesn't matter. Life is ultimately about experiences, and in those moments Archie is living life. In those moments, at least, he is healed.

OP posts:
hazeyjane · 19/06/2014 14:29

You write so beautifully. Thankyou for that piece.

Finding experiences that all the family can enjoy are so important, we have had breaks where ds is miserable, and unsettled and we all suffer.

Our best holidays are spent camping with friends who we know very well, our dds have friends to run around with, our tent (and the back of the car!) becomes a safe space for ds and dh and I have friends to sit and drink wine with while we watch the stars in the evening.

Ds (who is 4 and non verbal with a genetic condition) starts school in September, they do horse riding at the school every week, I cannot imagine how it is going to go!

Iatemyskinnyperson · 19/06/2014 14:35

That sounds like heaven. I have a 7yr old boy with ASD, and can empathise with so much in your post.

Our DS is similar- happiest when outdoors.

You've inspired me! There must be somewhere I can find locally for a similar experience..

LadyCybilCrawley · 19/06/2014 17:35

You have moved me to tears

I identify so much with what you gave written

Thank you for sharing and god bless those who enable such experiences

Firsttimer7259 · 19/06/2014 17:52

Thank you - just the idea that this something within the realms of possibility caused tears round here. Watching your boy surf remains a talisman for me, I hold it in my mind when things get dark to remind me we can get somewhere good

SurfingJimjams · 19/06/2014 19:38

Thank you for your lovely comments. I have been out all day so only just got back to this.

Archie definitely loves camping. Sites used to be a bit of a problem because he saw no reason to keep out of anyone's tent (another reason why horse boy worked - we were in a separate field away from the general public and we were all fine with various kids appearing randomly in our yurts!) For his birthday this year I bought him a backpacking tent and we're hoping to do some wild camping on Dartmoor soon (we're lucky enough to live near the one place in England it's legal!) I need to organise some help though - not brave enough to do that on my own :)

ImperialBlether · 19/06/2014 19:54

That was such an interesting post, OP. Thank you for writing it. It's such a lovely photo of your son, too - he looks very calm and happy.

Iamaslummymummy · 19/06/2014 20:16

Amazing post.

Iamaslummymummy · 19/06/2014 20:16

Amazing post.

magso · 19/06/2014 22:25

The horse boy camps sound fantastic JJ. Ds is another who likes speed, excitement but is much calmer out in the open. He showed his first glimpses of empathy to a particular horse he learnt to ride! He likes to collect his own berries (and knows which to pick) and really seems so able out in the hills.
I hope your wild camping goes well.

EverythingCounts · 19/06/2014 23:32

The holiday and site sound great, and that photo of Archie looking serene is just lovely. Hope you get to do more fulfilling and relaxing holidays.

SurfingJimjams · 20/06/2014 13:13

I'm impressed at picking berries!

We're planning to head to the northern irish north coast later this year - we have found a lovely surf school who will take Archie out there - looking forward to it. (Clear water and empty beaches!)

stillenacht1 · 20/06/2014 21:48

Hi JimJamsSmile wow I loved reading this. My DS sounds exactly the same as yours- high speed/noise fanatic!he has just started horse riding with the RDA and loves it (although they are yet to start trotting- he will be over the moon and probably giggle himself off the horse when it comes to that!). I will definitely look into thisSmile thank you xx meanwhile we are going to attempt to go abroad as a family in the Summer... Gulp!!Wink

OddFodd · 20/06/2014 22:20

That's a beautiful post Saintly and very moving

Shells · 21/06/2014 05:41

Loved your post. Thank you.

SallyBear · 21/06/2014 07:03

My DS4's class teacher had never heard of Horse Boy, but she follows the same principles that you describe. We go riding now every week at her stables. The look of utter peace on my child's face is something I thought I'd never see. He grooms the ponies, strokes them and kisses them. He is deaf and non verbal with severe ASD. The connection he feels is truly humbling. We are so grateful to his teacher for giving him this gift of connection.

CheckpointCharlie · 21/06/2014 11:39

That is lovely and so touching.

MollySolverson · 21/06/2014 13:11

Really beautiful post, I am moved to tears. Do glad you could all experience this

SurfingJimjams · 21/06/2014 17:03

Funnily enough we've just been up on the moor. It was a jumping sort of day (I'll add some photos to the blog later) but on the way back we came across a horse & ds1 was transfixed. He stood for ages just watching a horse that had come to the fence to reach grass outside the field.

Guest post: 'Holidays used to be survival exercises - here, my son's autism was accepted'
LIZS · 21/06/2014 20:12

Fab . You are amazingly eloquent about such a personal issue. Having "known" your ds for so long his progress and your ability to cope is inspiring.

SurfingJimjams · 22/06/2014 07:31

I've seen that before & it doesn't sound great. I must admit we didn't leave Archie with the volunteers - only his siblings & that was because we got the sense that they weren't really experienced enough to look after a child like Archie. That of course will vary from camp to camp - I was down to volunteer at a camp (didn't happen because it was rained off) & would obviously have been fine looking after a severely disabled & older child (& also capable of recognising when our of my depth with a particular child).

I did hear this week (hadn't realised) that the camps aren't running in the UK anymore. Maybe they had this sort of issue again. I guess it's the sort of thing that works better with a permanent site & regular volunteers otherwise there's too many things that can go wrong.

I do recognise the general scenario described in that link of 'oh yes we're all used to & experienced with autism....... er not that type of autism.....' .

I can say that in our camp which had a very high 'severe autism' & 'older' child contingent (& an adult actually) things that didn't work so well were altered. So for example a nature art session was run. That ended up being on the whole for siblings & the kids with autism were given an extra ride. In previous camps the kids with autism had taken part in the nature art but they realised that wasn't going to work.

Anyway horse boy or not, I'd still recommend getting out there into the space & outdoors. Up in Dartmoor yesterday a very happy ds1 jumped, stamped, clapped, ran & shouted & there was no- around to state or be bothered & loads of space for him to release all that energy into.

SallyBear · 22/06/2014 09:07

The thing that I have noticed is the change in my DS's personality around the horses. He stops making the strange high pitched screechy sounds and flapping his hands, stamping his feet and shaking his head. Instead he likes to go and fetch handfuls of hay and feed the horses, he likes to run his fingers through their coat and rest his head against the horse's side. Taking in all that stimulation; smell, warmth, movement. It calms him. He seems to trust the horses.

We are a long way off from him taking charge of the horse himself and riding unassisted, so at the moment he has someone leading the horse and someone else helping keep steady him on the saddle.

SurfingJimjams · 22/06/2014 09:37

That sounds lovely sallybear

AvonCallingBarksdale · 22/06/2014 10:12

Lovely post, thank you. Beautiful photo of your DS with the horse, too Smile

Doobydoo · 22/06/2014 19:20

How much does it cost?It sounds open for people who have limited resources?

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