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

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.

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

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.

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!

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.

ouryve Wed 21-Aug-13 16:46:57

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 confused

I'm with him with the wasps smile

starfish71 Tue 20-Aug-13 23:48:51

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

Lovely. Just lovely.

Thank you.

StillSlightlyCrumpled Tue 20-Aug-13 21:32:40

smile 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.

grin

DS2 has occasionally challenged people shock & he doesn't hesitate to call the lemon suckers idiots to me.

insanityscratching Tue 20-Aug-13 20:56:16

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 wink
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 blush

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 grin

insanityscratching Tue 20-Aug-13 19:58:31

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 wink

lottieandmia Tue 20-Aug-13 19:37:55

Haha I knew which thread it was in AIBU before I clicked on it.

And thank you Carly smile

Yep - hard for people to understand - as a current thread in AIBU is demonstrating. I have no idea what the answer is tbh.

carlywurly Tue 20-Aug-13 18:30:05

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 smile

insanityscratching Tue 20-Aug-13 12:30:02

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 wink). The message needs to get out there doesn't it? The MN campaign is long overdue IME anyway.

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.

insanityscratching Tue 20-Aug-13 10:06:52

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.

lottieandmia Tue 20-Aug-13 09:54:13

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!

FanjoForTheMammaries Tue 20-Aug-13 09:27:02

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".

FanjoForTheMammaries Tue 20-Aug-13 09:24:30

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

FanjoForTheMammaries Tue 20-Aug-13 09:22:49

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

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