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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

LaSpooney Wed 21-Aug-13 19:50:54

Thank you, Saintly.
I've been following the blog for a few months now and it just gives me such hope and a big smile when I see how much Archie has progressed and what an inspiration he and you are. DS is 6 and a half, completely non verbal, plodding on (but mainly standing still) with PECS (now via Ipad) taking more interest in others, mainly adults but sometimes children. But then there are, of course, plenty of odd noises and random shouting, pinching other people's food at Softplay today, going for cuddles with any woman he sees over the age of 50! Bracing myself for a trip to Italy at the end of the week - I've already written down in the phrasebook the Italian for "my son is not naughty, he's autistic" but whether I'll use it is another matter!
Look forward to future posts on the blog.
Highly impressed with the This Is My Child campaign too - if it educates just a few people it has to be worth it.

saintlyjimjams Wed 21-Aug-13 20:13:03

We had whole years and years of standing still LaSpooney. I can sort of list the breakthroughs. The first was learning to imitate aged 8. Then he could learn through observation and we didn't have to teach everything hand over hand. The next was developing a functional yes/no aged about 10ish. And then the next was surfing - partly because it gave a safe community and partly because it was the first extended activity and next the talker and using that to develop phrases.

But it was a long depressing time really. I had sort of given up. Then we went on a Growing Minds programme when Archie was 8 and they said something like 'you think you know what his future is, but actually you don't'. And they ended up being right. smile

Good luck in Italy!

LIZS Thu 22-Aug-13 09:41:23

Great blog. Have followed your family's story on and off for many years and am in awe at the progress ds1 has made and the dedication you have to all your boys.

saintlyjimjams Thu 22-Aug-13 10:11:01

Thank you Liz - although I think we & ds1 have been very lucky that things have clicked into place for him. He's currently sat next to me with minecraft on the iPad. He doesn't play it the way his brothers do but he happily passes the time building things & knocking them down smile

Pyewacket Fri 23-Aug-13 14:35:50

What a lovely blog, Archie sounds wonderful and i can relate to so much you have written. My daughter is 4, recently diagnosed, i am still working on the rhino hide.

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