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SN children

Friday night thread

56 replies

SallyBear · 26/10/2012 17:25

I would just like to say that my week, though emotionally hard has been nothing like darling Cup's.

It's half term, I have got a pigging clue what to do with the brood! Madagascar 3? That's a start. DD has a SALT workshop Tuesday and Thursday that I have to go to. Groan. It's obviously beneficial but I do hate SALT and practicing sounds ad infinitum! Wine to get me though that I think!

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whatthewhatthebleep · 26/10/2012 17:38

aaahh friday...
most of my days are much the same as any other but....today...this very day...it is a good un....the best I've had in a very very long time...my DS has secured the funding for his specialist school placement Grin....new beginnings with light ahead
I notice it has me being much more dotty than usual too!!! Grin

Thinking so much of cup and family too and their very sad time they are facing (((())))
I was wondering about how difficult this is and the advent of moving house on top of everything for them all....has there been a large enough awareness about the Paypal support towards the move for cup....thought I would just mention it again to ensure awareness is updated for everyone.....

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SallyBear · 26/10/2012 17:41

Bea's funeral is next Friday. Sad

Whatthe. Brilliant news about your DS's funding. My littlest DS is in SS and wow. It's an amazing place and always makes me feel happy. He loves it. Best thing we ever did. Grin

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lisad123 · 26/10/2012 17:43

In sat at beefeater grabbing something to eat before setting off on a 4 hour car trip to Wales! We are stopping at travel lodge and then continuing trip in the morning.

I'm considering going to Beas funereal next week, is anyone else going. Feels so wrong to not be there to support Cup on a really awful day when we have been there though the good times.

It's half term now, so after Wales comes entertaining the kids!!

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whatthewhatthebleep · 26/10/2012 17:53

och....Wine and big bag of choccy peanuts....here...open wide....catch!!!! Grin

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whatthewhatthebleep · 26/10/2012 17:57

Too far from us to be able to be there for Bea and cup family....will have to sit at home with you all in mind, when I know the time it will take place on the friday..maybe someone could post the details on thursday evening for everyone at home?

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SallyBear · 26/10/2012 18:17

I'm going. Cup lives near me, and we meet for coffee quite often. So Lisa if you need another MNr then count on me Smile

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EllenJaneisstillnotmyname · 26/10/2012 18:34

Maybe PM those who are interested in attending, a post would be too public.

It's been half term here this week. I took the boys away last weekend and had a nice time in the Forest of Dean. Then a couple of days madly catching up with homework, haircuts, new shoes, and a cinema trip and they've been with their dad since yesterday morning. I've done a lot of MNing since. Spotted the troll, never spotted one before.

Saw Madagascar 3 and have been singing na na nananana, na na circus, polka dot afro etc ever since. Managed to send DS1 in to see Loopers on his own. He is 15 (just) but I had trouble at the cinema because they wanted picture ID! Bought the ticket for myself and snuck him in...

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frizzcat · 26/10/2012 18:45

So sad about little bea Sad
Congrats on funding Sally
Deep breathe Lisa
Mixed week here, managed to get ds on the therapeutic listening programme but had to deal with a complete arse of an OT, who despite assurances had clearly had little or no knowledge of a child with ASD. My ds was so upset after her barking orders at him during the assessment - had I've have been there, I'd have swung her like a turkey!

Looking forward to my SE mn'ers meet up this Thursday and hoping this rotten cold goes soon

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signandsmile · 26/10/2012 19:34

we have been away, Grin ds has been much more 'stimmy' IYSWIM, cos we were away, but he coped well, and actually played with a couple of random girls, which was lovely to see,

he had us in fits because of the comment below;

ds; can i have some cake?
dh; what word needs to go at the end of that?
ds; yes! Grin Lol (well dh did ask!)

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EllenJaneisstillnotmyname · 26/10/2012 19:38

Mine usually add 'now!'

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signandsmile · 26/10/2012 19:43

lol Grin

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hazeyjane · 26/10/2012 19:45

Lpaedike you say Sally, the loss of Bea has been a shadow over the whole week. We have had a very up and down week here, but the thought of cup and Bea have been in the back of my mind, and made everything pale.

We are on holiday by the sea atm. It has been chaos, everyone is unsettled. We saw ds's paed before we went and told him about the Kleefstra study that ds is to be a part of. He wants to treat it as a working diagnosis, and in light of this and some stuff that has been going on with ds, he has made urgent referrals to a cardiologist, feeding/specialist SALT and learning disabilities team. He also listened to ds's chest and said he was concerned about a sound he could hear in one of his lungs, the area that has always been problematic on chest xrays,and was particularly bad when ds had pneumonia in August, so he is referring us wrt that as well

The first night of the holiday, was our 9th wedding anniversary, we had just had a particularly foul looking chinese delivered and ds started screaming, it was one of his choking episodes, but this time it really seemed a lot more fit like. It was horrendous, but it stopped and he went to sleep. He slept for a lot of the next day, I called his gp first thing, thinking we should return home, but she is calling his paed and arranging another eeg, and she said as long as ds seems well to stay. Anyway we are home tomorrow, and I feel so awful for not enjoying this holiday as much as i should, but we are all knackered, and i am full of worry and panic about ds, and being out of our home environment makes everything so much more difficult with ds, and he suddenly seems a lot more Disabled, with a capital D, if you see what I mean.

Anyway, enough moaning. I am cuddled up with ds watching Curious George, with the sea crashing away in the harbour outside the window. Life is good.

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hazeyjane · 26/10/2012 19:46

God knows what happened to the first word of that post!!

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wigglybeezer · 26/10/2012 19:48

Frizzcat, that OT sounds horrible, reminds me of DS's horrible SALT who always harshly told DS2 to do " nice sitting" on a horrible skippy plastic chair.

We have been back in the real ( cold) world for a week after our first ever family holiday abroad in Turkey, our most successful holiday ever as all three boys coped with planes, heat, strange food etc. much better than I hoped. Worth waiting until they were older I think.

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wigglybeezer · 26/10/2012 19:49

Was sad to find out about Bea when I got back though.

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LollipopViolet · 26/10/2012 19:51

Thinking of Cup, and the Teaset - was so sad to hear about Bea :(

I didn't get the job I went for, so have been a bit down yesterday and today, but obviously it wasn't meant to be. Am currently preparing for exams next week in Basic Costing and Computerized Accounts - I dislike Sage50 very much at the moment...

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frizzcat · 26/10/2012 20:36

Lol - what's meant for you won't pass you by - chin up

Hazy - sounds stressful hope ds is more settled health wise with curious George
Wiggly - just laughing at Turkey being your best hols - dh and I went there before we had dc and it was officially our worst holiday ever, food poisoning, sun stroke and dysentery and we were only there for a week! Grin.

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Lolaismyfavouriteandmybest · 26/10/2012 20:48

Hi folks. Short post as I'm completely wrecked from a work do yesterday.

So sad about Bea, as you say it's cast a shadow over the week Sad

It's going to be a tough week ahead as dh has his first long block of night shifts. I will see him for only 1 day next week (as i've booked a days holiday). Then we will be ships that pass in the night for about a week. With that in mind I'm going to get some sleep. Night all x

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NoHaudinMaWheest · 26/10/2012 20:49

hazey that sounds like a difficult holiday.

sign and wiggly glad you had good breaks.

lisa hope you survive the next few days - it sounds very difficult.

lollipop sorry about the job. Hope the exams go well.

My main moan this week has been about Dd for a change. She has severe acne and was put on a vitamin A med (which I can't for the life of me remember how to spell). It caused quite severe joint pains which are a known but rare side-effect. The dermatologist reduced the dose but wanted her to stay on it as there are no other options really. She said Dd should be excused PE if necessary as exercise is known to exacerbate the pains. As Dd has been worse after PE I wrote a note to the PE staff asking that she be excused for the time being. The first day she was but the next day they made her do cross country. She has been shuffling around for the last few days and I have had to put her tights on and wash her feet as she can't bend down. Angry
Other than that a fairly 'normal' week though I'm glad its halfterm.

So sorry too about Bea.

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frizzcat · 26/10/2012 22:24

NoHaudin - I took those when I was a teen they are very very strong - phone the school and tell them point blank she can not do PE. I also remember have a touch of jaundice too, due to the high dosage of vitA. Hope it works for her, acne is a real confidence knocker - in the end it was the contraceptive pill that regulated it, think it was dianete

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lisad123 · 26/10/2012 23:13

Thank you Sally, will pm you on my return.
Nearly killed outselves on way here!! Driving down M4 at 70mph and someone had not put their bikes on their car right as two of them flew off and headed straight for us! We ended up swerving onto hard shoulder and missed bike by grace of god! I hope no one behinds us was hurt Sad
I am now in travel lodge, which is pretty dire but atleast it's a bed, and we only have another 90mins to drive to see family tomorrow.

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NoHaudinMaWheest · 27/10/2012 00:24

Oh lisa how terrifying! We had a similar near miss nearly 20 yrs ago and I still remember. Hope you manage to sleep OK.

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CouthyMowEatingBraiiiiinz · 27/10/2012 01:16

Aw, I haven't been on SN for a while now, and didn't know about Bea. Sad.

My thoughts are with Cups and her family.

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CouthyMowEatingBraiiiiinz · 27/10/2012 01:16

And rather than fill this thread up with my ranting, I've started another.

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hazeyjane · 27/10/2012 19:11

I was on the vit A neds too, made me feel awful and had to stop taking it, acne is such a nightmare, mine eventually improved but left some scarring, I hope it helps your dd.

Lisa, hope you have got over the shock of your nearmiss.

After my post last night I ended up walking ds along the harbour in a force9 gale in order to get him to sleep, we have agreed that holidays will be at home with days out for the next few years, it is just too hard going away for any length of time.

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