Guest blog from SaintlyJimJams: This is my child(80 Posts)
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
We knew Jack was exceptional with routes before the internet because he used to click his tongue like a car indicator in anticipation of dh turning. Later he'd turn his head in the direction we should be going. He was four when he directed his Dad (who was lost) fifteen miles in the dark faultlessly through villages and housing estates to a place he'd visited 2 years earlier. He memorises routes though not by watching the way we go but by looking at all the turn offs we don't take .
Archie is amazing in those clips How far away is Heidi's house? Incredible to me because I have no sense of direction whatsoever.
Heidi's house is about 15 miles away, but through the tiniest roads. But he does the same with much longer routes. For example a couple of weeks ago he asked me to find him a house in Belfast. I did. Next time I looked he was at a different house in the north coast of northern Ireland that he last visited 2 years ago. And he navigates following the roads on the map, so he must have whizzed up there. Actually this holiday he recognised a turning that he hasn't seen in about 10 years. 9 years at least because the last time we took that route we didn't have ds3.
One of my favourites was when my dad bought a new car - his pride and joy of a second hand jag. Archie went onto google maps and straight to a jag dealer in the back end of Scotland that we had passed once, a year and a bit previously (when he had no reason to remember jag dealers, he hadn't been near a jag at the time, I don't know many people with jags!)
I also said 'show me Timothy's house' (made up name). He went straight there. Had been to Timothy's house once 6 years before. 'Who's Timothy?' said ds2. 'Exactly' I replied!
Mad isn't it? Our boys sound as if they have very similar brains!
Archie sounds amazing - sniffing sandwiches and loving shutters deserves respect. I think people like Archie enrich our lives and give us a healthy perspective. You sound like you really enjoy him. My DS3 who is autistic loves watching the numbers on digital clocks change at the moment. We once caused chaos at Euston underground station when he suddenly stopped in a crowd of London commuters to watch the numbers change on a clock he had spotted on the wall. Cue massive pile up - oops.
How I cope with the stares and looks depends on my mood. Mostly I'm fine and we live in a supportive community. But if I'm feeling wobbly it can make me wobble more.
And I agree, those lovely people who are kind and supportive of our kids (and us) really make a difference.
Lovely blog JJ, made me smile quite a lot. Is Archie still surfing? Your film of him surfing was so beautiful.
Saintlyjimjams I think I absolutely love you. What a super family. Hope your blog is widely read and changes minds.
It's mind blowing isn't it, such amazing memories and skills amongst all the difficulties? They do sound like they have similar interests don't they. Did Archie ever have a penchant for lamp posts? Jack used to tell us which ones had been replaced since we had last visited an area sometimes five years previously.
A wonderfully written piece. Archie is a star and so lucky to have you and your family to truely bring out the best in him.
As the Mum of a gorgeous little boy with ASD,I can totally relate.
Your blog should be shared far and wide to let people have an insight into our lives, it might help some of the cats bum faces and hurtful comments that some people are quite happy to dish out to us without realising the effect it has.x
Oh yes to lampposts. I also get told which ones are 'broken' (i.e. different).
And yes he surfs all the time. We had a fab surf this weekend, he sat out the back with the big boy proper surfers while I stayed closer to shore. We've found a surf school for him in Northern Ireland as well. We love surfers - they're very accepting.
I've put all the surf videos into one place on the blog now (it's on the top bar). There are a few
Just lovely . I think about Archie frequently as so many of his passions are the same as my DS2 (SN). I was reminded of him just a few weeks ago on holiday in Devon. I watched my son literally transform, the smile, the confidence, just enjoying the moment. The reason for this - surfing!
DH, myself, DS1 (12) & even my 3 yr old couldn't take our eyes off of our complicated, different, fantastic son. I did think of Archie later as I remembered how he loves to surf.
Oooooh where did you surf in Devon? (PM me if you want!)
Your blog should be shared far and wide to let people have an insight into our lives, it might help some of the cats bum faces and hurtful comments that some people are quite happy to dish out to us without realising the effect it has.
Just popping in to say 'yes, yes' to this: please do share if you get the chance, using the <coughs> newly gussied-up 'share' buttons at the bottom of the thread. The more people who find out about the campaign, the more chance it has of making a difference - and as so many have said, JimJam's blog is blimming brilliant.
We were in Croyde. Our kids break up a week earlier so was still fairly quiet & a heat wave, was a blissful week, mostly because if DS2 is happy and chilled so are we.
So glad he's still surfing, I'll have to have a look!
Brilliant writing as always Saintly. I blimmin luff Archie and he can come and look at my handbrake any time. We don't do sandwiches though as DS fears them...
Thanks for the link to your blog,very interesting and moving.you are obviously so proud of your handsome son :-)
Wilson - DS scared of sandwiches?? I need an explanation. Is it the different/unexpected fillings? Maybe egg and cress?
He just doesn't like the idea of things being squashed up together. So he eats bread and cheese, but never a cheese sandwich. I have recently tempted him on to soft bread rolls thanks to the BBQ season, but never with any food actually in them.
So the next time you see a stressed person pulling apart sandwiches, scraping the butter off and desperately trying to pretend they were never together in the first place - This is my child.
Saintly, how beautifully written and Archie sounds adorable.
Or it could be my son Wilson He too only eats the components of a sandwich and never them all together. He loves McD's hamburgers but only if they are plain and he has separated the bread from the burger.
Fantastic piece JJ. We heart Archie. And you. (Bleurgggh but I don't care, ha hah!)
I'm now hooked on your blog. I cried a bit when I read about the talker being given to you
lol sunny. I cried as well
We have made progress with sandwiches - they do get eaten as sandwiches now. Archie will also eat cheddar cheese now, for many years he would only eat hard goats cheese (ponce) and would smell all cheese before eating it. Non-goats cheese was rejected post sniff. That only really disappeared in the last few weeks.
Archie is a legend
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