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
Lovely post. I really like the thought of Archie sniffing sandwiches. He sounds delightful.
I actually got teary reading about people being lovely to Archie
I got teary too! I especially love the last line. What a fantastic way to look at it 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! 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.
Ah yes. The wanker-o-meter as DS1 calls it
It's true. Sometimes I would give anything just for DS2 to pass unnoticed.
Lovely blog Jimjams.
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
Just socked it to her
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
Beautifully written, pictured you and Archie very movingly.
Beautifully written, pictured you and Archie very movingly.
Message withdrawn at poster's request.
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!
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. , oh and for Archie - no symbol for sweeties!
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.
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
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.
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
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?
Lovely blog, thank you for sharing . 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
The shutter thing had moved on by then thank God 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
OMG - Archie is mr google maps as well. You might like these 2 videos:
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!
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
Jack climbs, at those indoor wall places. He is totally fearless and his friends at school call him Spiderman because he goes up the most difficult climbs effortlessly. Should have known that it would be an interest and a talent really as he used to climb walls and fences and door frames when he was only a toddler.
We are miles from the sea unfortunately but I might look into surfing when we're next away seeing as he and Archie seem to find the same sort of things an interest. Jack loves the sea, the movement and the noise make him so relaxed.
lovely blog. Thank you for educating me about the problems faced by parents of children with autism.
Thanks for this amazing blog. What I have found is that people are still so ignorant about autism. My dd stomps her feet hard into the floor when she's upset and recently a woman said to me that she shouldn't be doing that - because apparently her son has cerebral palsy and he doesn't and having autism is 'no excuse'.
Archie is very sensory seeking insanity - I'm sure that's why he loves the sea. He's a bit hit & miss with climbing. He wants to do it, but it's harder work than he expects I have found him standing on our bannisters 3 storeys up though, no fear of heights (every bit of me wanted to scream at him to get down, but he loves a big reaction so I had to act nonchalant & bored )
Lottie - I think that aspect is harder if your child can talk. I often say to people "he can't talk" rather than "he's autistic" as there are some who see being non-verbal as a 'proper' disability rather than an excuse. I have also noticed that children who can talk are expected to be able to behave in a certain way, even though in some cases their anxieties & compulsions might mean that every day life is incredibly hard for them (& they may be able to talk, but not actually have good language or understand what they're saying - it doesn't matter - they can talk do there are expectations from strangers....)
haha Saint I love that about the poncey cheese. Perhaps DS really does like sandwiches, he is merely making a protest about my choice of fillings? Will try goats' cheese and proscuitto tomorrow and see how he goes
DD won't eat a whole sandwich either..well very rarely. She picks the filling out and either eats it or the bread and throws the rest away
She also likes different food on different days.. if you put the wrong one on plate it gets removed or plate goes on floor.
There is no predicting which food each day either
Saintly..that is so true about the speaking thing.
Our neighbour would get very huffy if DD ignored her or walked off and generally acted.like DD was rude.
I said once "DD has autism" and she said "yes, I know, and?" I said "no I mean she can't speak to answer you" and she changed totally and said "oh no I didn't realise, that must be so hard for you".
My dd can speak a little, but she rarely does and is not conversational at all. I have stopped saying she has autism as a reason for her behaviour and tell people she's disabled as some people still hear the word autism and wonder what her special talent is!
Jack can speak but 90% of the time he doesn't/can't/won't unless it's about football statistics (and only to men whether they are interested or not) and then sometimes he doesn't shut up. I used to sign to Jack when he was smaller not because he understood it or used it but because Joe Public would realise he had a disability. I can't now because he'd slap my hands if I dd.
Lol at poncy sandwich fillings.
It is weird isn't it? People - by which I mean the general public - have enough trouble understanding that Archie is disabled because he looks 'normal'. Being non-verbal makes it easier for them to understand (especiallt if he's having a noisy moment & making lots of screechy sounds - he then fits a stereotype they understand). When faced with a child who looks normal & can apparently talk it really confuses people.
It is so difficult for people to understand, Jack's pretty well behaved out and about now but he stims which draws no end of attention which makes him stim more. The stares and the comments upset me more now because I think it's obvious he's a young man with a disability than they did when the stares and the comments were about his pretty appalling behaviour which although were based on ignrance I coped better with because much of it was criticising my ability to handle him (although I'd have loved to see them do beter ). The message needs to get out there doesn't it? The MN campaign is long overdue IME anyway.
What a lovely, heartwarming blog. You helped me years ago when I was at the earliest stages of realising ds1 was on the spectrum. I was and remain really grateful
Yep - hard for people to understand - as a current thread in AIBU is demonstrating. I have no idea what the answer is tbh.
Haha I knew which thread it was in AIBU before I clicked on it.
I'm just waiting for the day that someone suggests that those with "proven" diagnoses are tattooed with a red A in the middle of their forehead so that people could be sure about whether or not they were legitimately judging poor behaviour and parenting
I do think it's understandable when people don't recognise something like autism. People tend to have stereotypes of how a disabled person looks & find it hard to imagine someone who can run & who looks 'normal' can be severely disabled. But I do hate the - when told - 'well it's not an excuse' line. It's like telling someone in a wheelchair they're being lazy.
I used to think it was my job to educate everyone who needed help in that area. I have to admit life became a lot easier (& I became a lot less frustrated) when I decided it was perfectly acceptable just to ignore them
I don't educate anymore tbh I'm too tired to be bothered tbh. I do occasionally snap and give them a piece of my mind though especially now my older ones are quite indulgent of their narky mother and no longer embarrassed by my rantings
My dd speaks with pride of the day a woman in M&S ran when I challenged her for pointing and staring at ds who was stimming but not disturbing anyone. I'm such a softie usually that she gave me a high five and called me awesome
DS2 has occasionally challenged people & he doesn't hesitate to call the lemon suckers idiots to me.
DS1 will give hard stares back when we are greeted with prolonged stares.
One day last summer we were walking to the sweet shop in our local small town. DS2 is loud (deaf) & due to a cleft palate sounds very different. He was proclaiming his excitement at going to the sweet shop as we walked past a small group of young adults. They pointed, laughed & mocked him. He noticed, he knew they were laughing at him & his pleasure vanished.
The pleasure of a small normal childhood thing had gone.
On our walk back past this group after the sweets had been purchased my DS1 loudly proclaimed how stupid ignorant people were. I just gave them my best death glare. One of them looked suitably embarrassed.
Lovely. Just lovely.
Wonderful, saintly. So grateful for you sharing your story. I have two boys both with ASD, having a hard time at the moment getting through each day. We made it out today with one of the boys, only for a hour, complete with angry birds and pigs and sent home by the presence of a wasp but we made it out! x
I'm with him with the wasps
Wasp haters here, too. In fact, anything that's very small and flies tends to add to the daily drama. DS1 refused lunch, yesterday, because there was a fly in the house (amongst other things). Instead of eating his lunch, he stood over DS2 and, wihtout stopping for breath, criticised him for pulling his cheese on toast apart into its constituent components, so he could eat the cheese first
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.
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.
Good luck in Italy!
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.
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
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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