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?

[hazeyjane]

Well, today was long, but ok, as ok as these things can be. He had one done in April (along with a colonoscopy and PHStudy) and that was an awful awful day. Today we were home late afternoon, and Hazeyboy is bouncing off the walls demanding pizza....after the obligatory post hospital McDonald's.

Fortunately this was relatively quick and apart from getting very upset about going and a bit of kicking and shouting at the nurses at the removal of the cannula, it was pretty untraumatic.

The hospital were amazing, and the hospital passport system for patients with learning disabilities was very successful.

Now we just have to wait for word from the Drs. But we are good at waiting.

Hope everyone is having a relatively peaceful Friday night....I can't believe the holiday is nearly over.

[x2boys]

That's good Hazey I think my local hospital has passport thing for people with learning disabilities although 'ds has never been offered it!will you get any results soon?

[livpotter]

Glad it all went ok hazey, I'd never heard of the hospital passport thing!

Can't believe holidays are nearly over!

[hazeyjane]

Just going to have a splurge here, if that is ok.

Do you ever drop a ball and over react to a stupid degree? I have just missed a home visit from our lovely CAMHs lady, as I had written down the wrong date in the diary. We have spoken on the phone just now, I've apologised, I'll see her in 2 weeks time at ds's annual review (I really wanted to see her before.....) but I can't stop bloody crying. I'm all over the place, worrying that missing today will fuck something else up in the future Every time I stop and try to get on with something, I burst in to tears.
I can't bloody stop!!

Sorry had to get that out somewhere, in the hope it would stop me being such a tit.

It hasn't...

[livpotter]

Yes all the time! It's very hard when you have so many things going on to remember everything. Also I cry at the drop of a hat anyway.

I'm sure it will be fine. You have not ruined anything

[misdee]

Some weeks are harder and I cry at everything

[hazeyjane]

I'm sorry that others are the same, but glad I am not alone.

The whole of yesterday was a shitstorm of fucked off phone calls and disappointment that it's the same old same old. Today is going to be...Onwards and Upwards (with a heavy dose of Take NO Shit)

Hey Misdee! How is that sweet girl of yours?

[IntentsAndPorpoises]

I've cried at much more minor things than a missed appointment. I once had a very small bump in my car and it was the final straw. I wept. The poor guy I'd bumped into didn't know what to do and kept reassuring me it wasn't a big deal, tiny bump, hardly any damage.

He actually called me later in the day to check I was OK!

Hope you have a better day today.

[IntentsAndPorpoises]

Classics of me sobbing include:

-not being able to find the lid for a tupperware box;

• the printer at work (bastard evil thing);

-I once took kids to swimming lessons already in their swimming stuff. Except I forgot all their clothes.
-as above but took them dressed and forgot swimming costumes/trunks.

[x2boys]

Chin up.Hazey we all have days like that in my the world of disabilities , school.phoned me yesterday ,ds2 had been bitten and scratched b another child , I'm just grateful for once it was ent him doing the biting and scratching

[misdee]

Hazeyjane, thank you for asking. She is doing very well. Turns out I have the same mutation as her for leukodystrophy. Bang goes a quiet year. 2 of our other children are to be tested as well. I updated dd6 mega long thread the other day.

[WonderBoy]

Well it's Tuesday, a winter's night, and am I the only one wishing we'd got a new series of There She Goes, or even a repeat, to look forward to later?!

[IntentsAndPorpoises]

No, iplayer keeps recommending it to me. I had a job interview today. Didn't get it :( I need something to cheer me up!

[misdee]

I miss it. I laughed and cried through it.

[WonderBoy]

And on the subject of us all being just a great big bunch of old cry babies......

Same here! I think we're operating at such a level - an extreme level - at all times or nearly all times, keeping going, keeping it all together, that sometimes it's a 'straw that breaks the camel's back' situation.

I've become increasingly aware too of just how much chronic sleep deprivation alone impacts on my mood.

I think most people don't realise what it's like. Many people will have relatively short or medium term bursts of a family crisis or illness, or lack of sleep with babies and toddlers, (and I'm not minimising that - that's hard enough), but for some of us it's not temporary, it's not even longterm - it's life.

There have been times over the years when I haven't cried. I couldn't. Things seemed too bad to cry, if that makes sense? I felt that if I started to cry then I might never stop, I think - and I had to hold things together. Not crying is probably more worrying, less healthy, than crying.

So cry it out, people, when you need to. Let the floodgates open, and don't feel ashamed. I know we have to be superhumans, but actually we're only human.

[livpotter]

I miss it too!

Totally agree with you wonder, if I'm not crying then things are serious!

[WonderBoy]

Not just me then. TSG felt like having something in the mainstream and just for us, which is rare, and like being part of an exclusive private members' club - except one where we were actually welcome!

Hopefully this thread will fill the gap a little bit?

Sorry about the job, Intents

[misdee]

When things are really bad I don't cry either. It's strange. I just get on and deal with it.

When dd6 was finally diagnosed in the summer, it was the strangest thing. They were telling me that she had this mega rare condition that could stabilise or even improve. And I was happy. Because she gets to grow up. Because she shouldn't, as far as they know, get worse. The condition links up all her quirky ways, it explains so much.
We have a follow up with genetics soon, as I have the same mutation. I find genetics fascinating, so it's going to be interesting.

In the early days I remember saying things were right, yet no one would listen. I said all her issues were linked but again no joined up care.
In the 5 months since diagnosis we have managed to be discharged by several departments, as they realised she didn't need 3 different neurologists, 2 different paediatrians, and so on. I'm hoping that this year, things get even more coordinated. Being undiagnosed was hard.

[x2boys]

D's was diagnosed with a rare chromosome disorder when he was three it's de novo so it's not inherited ,in some ways it's great having answers it makes me feel less guilty bu t at the same time why is he so badly affected but other children with the same condition arn t ? Logically I can say and I'm only using down syndrome as an example because it's widely known ,that if had down syndrome some people are profoundly affected and some people quite mildly ,.

[x2boys]

He had * sorry.I'm rambling a bit .

[hazeyjane]

Oh hello lovely people.

I'm glad we have this corner to bemoan the end of There She Goes and rest our weary bones!

Misdee, if it doesn't sound too wierd I'm glad your dd got a diagnosis, it is horrible to be in limbo. I'll try and catch up on your other thread.

Thankyou for sympathy over the crying. I'm the same at being ok when its the big stuff, but sometimes the relentlessness overwhelms me. Random things can get me though....i burst into tears buying baby food in Waitrose, because it hit me that i used to feel guilty about buying hard for the dds, and here I was buying jars for ds who was 5 at the time. Oh and frustration, that makes me cry too, especially with school.

Ah fuck it lets face it I'm just a big crying mess!

[WonderBoy]

Hello again everyone. I saw Jessica Hynes on BBC Breakfast News talking about her new project this week, and it reminded me of There She Goes and this thread! I've kept meaning to come back to it, and certainly wanted to reply to pps above, but life has kept getting in the way - though I doubt I have to tell you all about that, do I?!

Unfortunately Jessica wasn't talking about a second series of TSG, (although her new project, set in a boxing gym, sounded good), but we live in hope, don't we?!

I wondered how everyone is doing, and whether anyone saw a new series on E4 last night - called Speechless?

Sending long overdue greetings, gin, wine, cuppas, cake and of course communal Jaffacakes to all!

It's a bit too chilly at the moment for naked trampolining, isn't it?!

Anybody still out there?!

[livpotter]

Not sure about full on naked trampolining but shoes are still very much optional here!

I've not heard of speechless, will definitely check it out.

[hazeyjane]

Hello!

Still here. Still hoping for a second series!

No naked trampolining...but after 8 years, ds has finally decided he likes baths leading to some bubble chess style moments.

[WonderBoy]

Hello again. We don't have Bubble Chess, but only because we've learned the hard way not to leave any products in the bathroom with WB! The same goes for towels which might end up in the bath, or cups which might be used to drink the bathwater! We do however have The Wall of Water ending up on the floor, and Loo Flush Chess.

Eight years for baths is a great example of Never Give Up. On that basis, you could have Naked Trampolining to look forward to with HB...