Guest blog from SaintlyJimJams: This is my child

(80 Posts)
KateMumsnet (MNHQ) Mon 19-Aug-13 12:56:14

As we hope you've seen, we've just launched a new Mumsnet campaign called #ThisIsMyChild. The campaign aims to support parents of children with additional needs by busting some myths - and with luck will open up a conversation about how we can all act together to make day-to-day life a bit easier for these families.

The talk thread is over here if you want to catch up - and do also have a look at our brilliant gallery of photos of Mumsnetter's DC, all of whom have additional needs.

Today, we've a guest blog from SaintlyJimJams, who's been an MNer for many years. JimJams blogs over at A Life Unlimited, and writes here about other people's reactions to her son Archie, who has autism - do have a read, and let us know what you think.

"My eldest son Archie is a handsome chap; fourteen years old and 'hot', according to a female friend of my middle son. He is also severely autistic.

When I remember the early years with my youngest two, the memories are of birthday parties, holidays and funny things they said. Their life has, in the main been lived in anonymity; they draw attention to themselves when they want to - otherwise they, and we, are left alone. But life with Archie has always been different - non-verbal but not quiet, he has always had a way of inviting attention when we venture out, and when I think back, the responses of strangers form a large part of the memories.

Over the years I have grown a skin so thick it would compete with a rhino, but in the early years other people's reactions could affect me greatly. I remember with absolute clarity the expression on the face of a man who held my gaze and shook his head slowly at me on a ferry to Ireland as Archie tried, one again, to exit the duty free shop via the entrance (he liked the alarms). This man, the father of two young daughters who had spent the crossing sitting quietly reading and drawing pictures, had been watching us for a while as I, heavily pregnant, crashed around after Archie trying to contain him to one small space in a large boat. Not content to judge in silence, he had to show his disapproval with the slow head shake.

I remember as well the mother attending a family day on Dartmoor with the rangers. Families were pond-dipping as we came past and stopped to fish out suncream from our rucksack. When Archie was young, he didn't really like or understand stopping - and the ensuing screaming caused many heads to spin. This is fine: looking for the source of an unexpected noise is a normal human response. But while most people looked briefly and then returned to their activity, one mother remained staring until I mouthed 'don't stare' at her, at which point she turned away without a word.

Then there was the owner of a bathroom shop, who reduced a helper of mine to angry tears after she came out to complain about Archie jumping up and down excitedly on an empty pavement outside the shop (he'd spotted some shutters, shutters are exciting). Three memories, representing the years of tuts, sighs and comments we have received.

But it's not all bad; I remember as well the kind people. The stranger who approached me in the supermarket to tell me she knew Archie was autistic, and that he was beautiful. Someone else who followed us around a camping exhibition before asking me whether Archie was autistic, saying 'my son is, and I recognised his noises' - then beaming with happiness at him. The two older ladies sitting in an empty winter beach café, who laughed with genuine pleasure when Archie sniffed their sandwiches.

We've met various people on trains, during difficult moments caused by trains stopping. I remember in particular the grandmother on her way to visit her autistic grandson, who fished sweets out of her bag and complained about other people staring. I remember too the owner of a convenience store who would always give Archie an extra apple when he visited her shop - it's not that unusual for strangers to give Archie gifts. At Camp Bestival, a difficult experience on the whole, the people running the PlayStation bus made it a little easier by allowing Archie to queue jump every visit (he liked to climb to the top to view the festival), and on the last day appeared with a little pile of presents.

For the last year or so, Archie has had a handbrake obsession. He loves to look at handbrakes, and particularly likes watching them go off and on, up and down, or handbrake lights on and off. He knows he isn't allowed to touch cars, but he will peer through car windows at handbrakes. It can look slightly odd - although he never does anything threatening - and a walk across a car park can be a good way of observing, in a few minutes, the whole range of responses that we encounter in our life with Archie.

Many people are amused and intrigued, and often, once Archie's behaviour has been explained to them, they take time to show him their handbrakes (this really is beyond the call of duty!). Others are confused and can appear, hands on hips, until Archie's interest is explained (at which stage a few remain with hands on hips, but hey ho). A small number of people swear or shout or become aggressive. We do our best to avoid these.

Strangers make a difference to our days out with Archie in a way they just never have with the younger boys. In the days before rhino hide, a difficult encounter could send me home in tears.

Sometimes people ask how they should respond when faced with a severely autistic child - maybe peering at their handbrake or sniffing their sandwich or even them - and really the best response is always to smile or, if appropriate, laugh; troublesome behaviours can be very funny. Once, for example, Archie launched himself through an open car window across a policeman's lap, in an attempt to find the siren button - the policeman did laugh.

If a child is very upset, it's always fine to ask whether you can help - and it is equally fine to just ignore whatever is going on. Often well-meaning people are worried about doing or saying the wrong thing - but unless you are shaking your head, shouting or swearing, this isn't really something you should be concerned about. I used to see attention from others as a negative aspect of having an autistic child. Now I see it as a positive, and I call Archie my filter, as he fast tracks me to the lovely people out there; the ones worth knowing."

Do have a look at Christianne's blog, A Life Unlimited. This post, in which she explains how an anonymous and exceptionally generous MNer donated the specialist equipment that helps Archie to communicate, is a great place to start. On Twitter, Christianne is @CATS_Chris

HelenaLindor Mon 19-Aug-13 14:11:59

Lovely post. I really like the thought of Archie sniffing sandwiches. He sounds delightful.

Youhaventseenme Mon 19-Aug-13 14:13:11

Cracking blog.

FanjoForTheMammaries Mon 19-Aug-13 14:18:15

I actually got teary reading about people being lovely to Archie smile

scarlett0303 Mon 19-Aug-13 14:27:50

I got teary too! I especially love the last line. What a fantastic way to look at it smile Much better than being in tears at the elderly man who offered me his walking stick to beat my son with, whilst he was having a meltdown in the high street.

OMG scarlett, that's awful! shock We have met a few of the "now listen to your mother & behave yourself" type busybodies, but I (literally) completely ignore them now. I found that in the time taken to engage with them ds1 would do something even more hideous so now he gets my attention rather than them.

Pagwatch Mon 19-Aug-13 14:43:30

Ah yes. The wanker-o-meter as DS1 calls it

grin

It's true. Sometimes I would give anything just for DS2 to pass unnoticed.

Lovely blog Jimjams.

FanjoForTheMammaries Mon 19-Aug-13 14:56:18

Am actually developing the rhino hide at last I think.

When I confronted lady in cafe at weekend I did not bat an eyelid or feel particularly stressed

FanjoForTheMammaries Mon 19-Aug-13 14:56:41

Just socked it to her

Alibabaandthe40nappies Mon 19-Aug-13 15:04:37

That is a really lovely blog.

I am one of the well-meaning people who is always worried about doing or saying the wrong thing.

Archie sounds wonderful, thank you for sharing smile

funnyperson Mon 19-Aug-13 16:27:44

Beautifully written, pictured you and Archie very movingly.

funnyperson Mon 19-Aug-13 16:28:33

Beautifully written, pictured you and Archie very movingly.smile

FourGates Mon 19-Aug-13 17:06:07

Message withdrawn at poster's request.

Blu Mon 19-Aug-13 17:18:00

Great blog.

I love the blog, and the campaign, for showing children being the children they are within their families and daily lives. Children as they are when below the radar of the onlooker in gawp mode during a difficult moment. It isn't about 'positive images', but about realistic images, or balanced images, or more accurate pictures.

Any parent knows what it is to go through the Thomas Tank obsession, and the dinosaur obsession - a handbrake obsession should be easily accommodated by an experienced grandparent!

PandaG Mon 19-Aug-13 17:31:07

just spent most of this afternoon reading Jimjams' blog, and crying rather a lot.

Am blown away by the generosity of the anonymous donor, and what that has meant for Archie's ability to communicate, and for his developing sense of humour and fun. Thank you so much for sharing your gorgeous sons with us. smile, oh and cake for Archie - no symbol for sweeties!

MaryMotherOfCheeses Mon 19-Aug-13 17:37:16

Thanks JJ, fantastic blog.

Archie is a fab kid and whilst I like to think I'm all open minded and liberal and stuff, it's only by hearing about your experiences like this that make people more aware of their own behaviour.

canda123 Mon 19-Aug-13 18:11:48

Hi I loved this blog, I am still waiting to hear back from drs at hospital if my lovely daughter has been diagnosed with autism, child physciology says she is very dyslexic and slighty autism. But I is great to know I have loads of blogs to read and with this organisation food luck to all of you with chilren with special needs

zamantha Mon 19-Aug-13 18:18:30

Your post touches a painful chord.

I have a mildly autistic son who as a teen blends in beautifully with well developed self-awareness because of his journey.

Despite mild traits, I experienced rudeness and non-inclusive behaviour from fellow parents when he was younger. I remember at 3 in a play group the mothers group disapproval of me and my son. One day a mother sat with her daughter, little Miss perfectly acceptable much like my daughter and she role-modelled for me how after colouring ( actually scribbling!!) you show your child how to put the lids back on. For me it was an amazing 5 mins as my son only interested in trains and tractors at the time was prepared to explore pens, colours and lids coming off and the experience of pen on paper - a rare occurance until about 6. I was delighted and happily cleared up when he ran back to the tractor. The mother tut-tutted at me. Just slightly better when asking a mother if her son would like to come to tea and she said :
"I don't know. What's actually wrong with your child?" They were 10 and his ( my DS) difficulties were hard to decipher at this point.

My point is we need this campaign as only slight differences cause people to be incredibly rude I was hurt over and over when he was younger. I smiled and smiled and kept on inviting kids but it hurt. smile smile

insanityscratching Mon 19-Aug-13 18:29:17

A lovely post, Archie sounds just brilliant and you write echoing many of our experiences with ds who has autism.

Ds had a thing for shutters too, one of many obsessions that he's had through the years. So for about eighteen months we would ride to the nearest town on a Sunday afternoon so that he could watch the shutters come down on Woolworths (he liked the letter W as well)

This particular afternoon the weather was evil, it was blowing a gale and alternating between hail, sleet and snow. We were strategically sheltering in the bus stop with the best view. Ds was transfixed and jumping and squealing in anticipation when a woman approached dh and asked if he was waiting for the number 78.

"Oh no" said dh "We're waiting for Woolworths to close" probably because it was normal to us. The woman looked visibly shaken and ran I suppose because she thought dh was planning a robbery grin

Inncogneetow Mon 19-Aug-13 18:55:38

Great writing, as always Jimjams: very moving.

Thank you for all your kind words. Insanity that made me laugh. And yes Archie would love the shutters coming down on Woolies!

Panda - I am still blown away by the generosity of the donor. It's something we talk about a lot within the family.

But OMG - what did you do when woolies shut?

NationMcKinley Mon 19-Aug-13 19:55:20

Lovely blog, thank you for sharing grin. I was listening to Jane from mumsnet talking to Eddie Nestor on Radio London this evening about the This is My Child campaign. Very interesting and very thought provoking

insanityscratching Mon 19-Aug-13 20:10:08

The shutter thing had moved on by then thank God grin I think touring the County spotting those yellow Think Bike signs came after the shutters. Nowadays it's Google street maps, he's a living a breathing sat nav and very useful to have in the car wink

OMG - Archie is mr google maps as well. You might like these 2 videos:

alifeunlimited.wordpress.com/2012/01/10/an-insight-into-a-autistic-mind/

Google maps was actually how we realised he was intelligent! When I had guessed before (but was seen as a mother in denial). His google map abilities proved it! grin

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