There She Goes - new series with SN child **Thread title edited by MNHQ**

[WonderBoy]

I've just spotted this:

There She Goes
BBC4 10pm - 10.30pm
First of a 5-part series, starting today - 16.10.18.
1/5 - One Day in the Life of Rosie Yates: It's a typical Saturday for 9-year old Rosie, who has a severe learning disability.

I'll be watching - if possible! Anyone joining me?

[WonderBoy]

Hazey - I certainly have the all-nighters and the hide-the-tired-eyes sunglasses, but that's as rock n roll as it gets. Partying these days is a second glass of wine or the thrill of opening a new pack of nappies!!!

[WonderBoy]

Welcome to the thread Intents
Since having WB I've discovered that - apparently - the whole purpose of needing a garden that is not overlooked is naked trampolining. Not that I've tried it myself, you understand.

I think the mutual shirking that you and hazey admit to is very healthy between parents, and IME it's even possible to mutually shirk with sibling DCs, once they're old enough to keep an eye on things!

[AamdC]

Naked trampolining 😂😂sorry that made me smile its something that often happens in this house well actually naked trampolining . naked sittung in the sink you get the picture !

[WonderBoy]

Yes, it was great to see a bit more of Rosie's DB Ben, hazey. He could very easily be one of my DCs. I think the throwaway remark about a cr*p childhood was possibly originally well-meaning, but I'm really not sure how that conclusion was reached in half an hour nor on what I saw overall in that first half an hour.

Some siblings do have crp childhoods, but plenty of DCs in NT households do too for various reasons. There are challenges, of course, but that in no way makes for siblings having a crp childhood - that's so dismissive of our family lives overall, and also ignores the many positives of growing up with a disabled brother or sister. For us that's not free trips or whatever - we don't have those - it's about increased empathy, kindness, caring, patience, all those sorts of things.

Of course we're going to feel sensitive about comments like that, when we're identifying with a programme that's groundbreaking and important to us. Of course we're going to want to challenge those remarks when we're living the life and feel they're wrong. I didn't directly comment or respond, but I really understood why others did, and I certainly didn't see any nastiness or ganging up in that. It's a pity that we weren't listened to and learned from, but instead were argued with. Some people don't value actual experience. But it's in the past now - let's all look forward to sharing this thread as the series moves along.

[WonderBoy]

I know, Aam!!! We have a very sour-faced, straight-laced, nosey couple as neighbours. If they insist on craning their necks staring out of their windows into our private garden, then they deserve all they get!!! A sight for sores eyes, certainly 🙈

I once saw a naked trampolining mug years ago, before it became an unexpected factor of my life, and I really wish I'd bought one!!!

Can your backside fit in the sink, Aam?!

Duty/love calls, but I'll come back later and join in the inevitable conversation you've all been having about poo

[AamdC]

No but maybe after sliimming world? I dont think people who comment do so from a place of malice but sometimes i wish they would think before they speak, telling a parent of a special nedds child that you dont know how they do it or that you couldn't do it etc is in no way help ful i also cant get involved in threads where people say they would have to terminate if they found out they were expecting a child with disabillities because not all s
Disabilities can be tested for , ds has a chromosome deletion. that normally isnt tested for during pregnancy and even if it was there would be no way of knowing how the child would be affected before birth and the child started developing the range can be huge

[EggysMom]

i also cant get involved in threads where people say they would have to terminate if they found out they were expecting a child with disabilities

I actually feel really strongly about this. My pregnancy was high risk for Downs Syndrome (1 in 5) and we declined anniocentesis because we couldn't have terminated even if our child was found to have DS. As it turns out, he didn't have DS but is deaf, autistic and has severe learning difficulties - three things that couldn't be tested.

[AamdC]

Well we have just had our very own there she goes moment , ds decided to make his own water fountain , with a bottle and a tap lots of laughimg from him and mopping from me and dh

[WonderBoy]

Morning all. Hope we've all survived the weekend?!

Aam - Reading about your water woes cheered me up, thank you! Laughing with, not at, obviously.

We had a TSGs humour moment last night. We'd been treading on eggshells to avoid a meltdown, and an exasperated sibling blurted out, totally deadpan, 'oh do be quiet, WB, you look like a mop.'

Haircuts have always been a challenge. Although we've made good progress over recent years, the mop analogy is probably true just now!

Of course if an outsider said anything like that, we, WB's family, would hunt them down and murderise them like a pack of wolves.

[livpotter]

I'm very glad to have ds back at school today.

I feel your pain AamdC, Ds got hold of a can of shaving foam on the weekend and redecorated the house! He did have a lot of fun doing it though.

Wonderboy so true! There are things we can joke about but if anyone else did I would go mad!

[WonderBoy]

Oh dear, liv, I bet shaving foam was interesting! I hope you manage to recharge your batteries a little after your Half Term. It's just started here. Although WB is at home full time anyway, it's great to have the other DC around more - but I do feel torn at times and even more stretched than usual.

[WonderBoy]

There She Goes next episode:

What Rosie Wants
Tuesday 30 Oct at 10pm

Episode 3 of 5

A trip to the swimming pool ends in disaster when Rosie decides she hates it. Mum Emily wonders if it's because she wanted to do something else.

[AamdC]

Well as long as he had fun liv yes haircuts are a challenge here to , dh does it with the clippers , to many embarrasing incidents at the barber's, i do feel for parents of girls woth similar needs regarding haircuts how do they manage i wonde

[WonderBoy]

Hair clippers, like hair dryers and showers, are apparently the work of the devil here and must be avoided at all costs. I know a DC who can only have their hair trimmed by a close family member, another uses a home visiting hairdresser, another only in their sleep, and another not even then - after trying everything, the parents have had to give up, at least for now, and embrace hats, hoods and the permanent bed hair look.

For us, it's taken years. The first person we tried a few times was a disaster when WB was very young - she was too insensitive and excitable, so Lord knows how she'd cope with him now and we her. Our second person turned out to be a star - very unexpectedly - as she is very trendy and not even a parent herself, let alone of a DC like WB. We've stuck with her ever since, just persevered though it hasn't been easy, gradually developed a routine, and it (more or less!) works.

Tips are:

Find a calm, sympathetic and understanding person who will be willing to be flexible and take it as slowly (or as quickly!) as necessary.

Explain fully what you need and why, and what the issues and problems are likely to be.

Book well in advance to secure the quietest times - for us, it's when no one else is in, first or last thing.

Avoid at all costs being in a busy, noisy, salon.

Take your DC's booster chair, houdini harness, wheelchair, or SN buggy if needed - they can even sit on your knee, it doesn't have to be in the hairdresser's chair.

Take sensory distractions - drinks, snacks, fiddle toys, portable DVD player, iPad, whatever.

Don't make your DC wear a hairdresser's cape - it might come in time, but it took years for WB to wear one, so we just accepted hair on clothes.

Don't make your DC have their hair washed first - WB can't, even now.

Ask in advance for no hairdryers or loud music on while you're there, remind them if necessary, or ask for your DC's to be played, (if not using earphones or ear defenders).

Use pictures like PECS beforehand and take photos while there for future reference and as part of your DC's social story.

Stand alongside your DC and the hairdresser to provide reassurance (to both!), keep the distractions mentioned above coming, preempt or deal with any meltdowns and - very important, this - keep hands away from scissors.

Try to remain calm and keep your sense of humour - not always easy, I know.

If you find 'a star', as we've done, show your undying appreciation regularly - these people are rare in life and worth their weight in gold - you might even gain a friend.

And remember, if you have to leave after half a haircut - as we have done - you can go back another time for the rest. In the meantime, enjoy your DC being mistaken for a young member of Human League.

HTH.

[hazeyjane]

Our TSG moments this week have been...…

Hazeyboy pours a bottle of water over my head outside classroom at school pick up (forgot chocolate bar in my pocket)

Hazeyboy decides to sit down in the middle of park full of deer. Shouting loudly. Dh has to eventually fireman's lift him over his shoulder, out of the way of angry deer.

Hazeyboy fills the sink up with talcum powder...and a Lush beard cream (this makes a particularly sink blocking paste)

Dh and I drink wine every night.

This year Hazeyboy has finally had a haircut that doesn't involve me trying to cut it in bed, with the result that he looks like I have done it blindfold. Fortunately we have a family friend who is a hairdresser, and he has let her do it (she does it in 5 minutes flat). For us a cape is essential - the sensation of hair going anywhere near him sends him into hulk out mode....as do baths.....hairwashes….showers...….and a millionty other things.

Looking forward to swimming pool episode.....ds is like a wet koala bear and clings to whichever adult is nearest, trying to climb ontop of their head whilst shouting 'I NOT LIKE THIS!!!'

[AamdC]

All good fun , yes swimming should be a good episode ds used to love swimming , not so much now we went to a haven site in the summer , he would happily go in the outdoor pool but not the indoor, instead he spent his time running up and down the stairs i drink a lot of wine tooin plastic cups though cheers

[livpotter]

My hairdresser comes to the house and does everyone's hair in front of the TV, so it's not been a problem so far thankfully. Great tips though wonder!

Wine here every night too!

Looking forward to the next episode. Ds loves swimming so it's getting him out of the pool that's the issue.

Hazey the koala thing made me giggle. Also the beard paste/talcum powder thing sounds very inventive!

AamdC I totally get the outdoor pool thing, indoors can be so noises and disorienting.

[IntentsAndPorpoises]

Dd's hair is a nightmare. When she was littler my friend (ex-hairdresser) cut it short Bob and fringe as she would not tolerate bobbles or clips, but got annoyed with it in her hair.

Now she has it very long. She will tolerate a ponytail done in a certain way. Months ago she decided to cut a chubk from the front. We managed to cut a fringe. But now she won't have it trimmed. A mess!

[hazeyjane]

I wish you could all go to ds's hairdresser - she has ended up cutting the hair if half the children I know with special needs, she is fantastic (mind you it still took years to get ds near the scissors!)

Today has started in true chaotic fashion as I discovered one of ds's nappies had snuck into the washing (all his sister's dark school uniform, sports kit etc) exploding and covering all the washing and interior of the machine with nappy crystals. All before 7 this morning.

Looking forward to tonight's episode, hoping to watch it while it's on (with wine) as going on holiday tomorrow (does anyone else marvel at the extra packing for their kids....rucksack of medicines, baby monitors, iPad and spare iPad, ear defenders, buggy....)

[AamdC]

Have funnon holiday , ds isnt interested in the IPad (yes i know) its music with him must have music!, But yesallthe extra things , napoies , blu tack lots and lots of clothes he goes througj a lot ! are your schools on half term this week hazy or are you "gasp" going out of school holidays?

[hazeyjane]

Just packing and I had forgotten all the spare clothes and nappies (that would have been a disaster!) ...and Lego....lots and lots if Lego.

Yes on half term this week, and going away to make up for disastrous Summer where everything had to stop due to ds having an accident.

[IntentsAndPorpoises]

It's half term for us this week too. Although we're having to head home after one night cos dd can't cope being away from home. She had a huge public meltdown today.

Urgh. I know it's party of the coming to terms with the new normal, but I miss holidays :(

[WonderBoy]

Hello all
Less than half an hour to curtain up

Having an up and down day here, but I'm hoping to watch tonight and to be able to chat on the thread afterwards, (WB-willing!).

[AamdC]

Im tired been a long day will watch it on catch up tommorow anf enjoy the chat in the morning enjoying my wine cheers

[WonderBoy]

Totally understand that Aam. G&T here, with the only healthy bit of a mouldy lemon! Typical. Hope you get some rest tonight. Cheers. 🍻