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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

friday night thread....

86 replies

signandsmile · 21/10/2011 16:56

Hi all, how has the week been?

We've been at the seaside, ds has loved the caravan, and we had a friend and her 3 kids for a couple of days too, which he coped with really well, weather amazing! picnic on beach with no coats on, much paddling in sea and digging big holes. .

second week of half term still to come, (visit to stay at nanny's and his first party with kids from school, I am thrilled he got an invite but really anxious about how he will do... (over anxious mummy...)

feel like i have this huge looming pile of 'things that must be done', about to topple over on me. my 'to do' list never seems to get any shorter... but next half term he gets to be full time, so hopefully more time to get stuff done.... altho I could be kidding myself,

OP posts:

grumpypants · 21/10/2011 19:06

Hi can I join? No dx but in midst of ongoing assessments for asd. I also have a paed apptment which I hope goes well. Its been such a long route to the possibility of dx. I totally get the creativity/copying thing wwhich is why I wanted to join. He is always reported as having a great imagination, alhough most of it is copied fron films, comics, me, etc. Haven't been able to get this across tho.

moosemama · 21/10/2011 19:07

Oh Ben10 that sound horrendous, you poor thing.

Oh God, Bananas in Pyjamas! I hate that programme, but dd loves it. Its terrible really, I was so much more strict with the boys - they were only allowed to watch CBeebies until ds1 was in year 2 and then I was really selective and think I may have only allowed a bit of Nick Jr. Mind you, there wasn't much resistance what with ds1's tv/film phobia, as he'd only watch things he'd already seen.

Your ds's room sounds fantastic. Ds2 and I want to do similar in their room, but with a huge stylised VW camper decal on one wall. Ds1 however, wants to keep the sky blue ceiling, complete with sun lampshade, bright yellow woodchip walls and Bang on the Door Alphabet sticker frieze. Its horrible!

I dream of having some time to myself. I managed to snatch an hour when dd had her nap and the boys had their ds time today, but it seemed to go past in about five minutes and I was too tired to make the most of it.

intothewest · 21/10/2011 19:11

HI all - Good to hear some positive news....
MOOSE - hope they find out what's causing it
BEN- hope you recover soon

All pretty much o.k. here-after a few awful weeks.Glad it's half term

creatovator · 21/10/2011 19:12

Oh! Sorry to hear that Ben. Glad to hear you're recovering now.

BTW have just posted on your other thread.

Becaroooo · 21/10/2011 19:15

Ben and Hope you feel better soon!

Moose Still awaiting a dx myself and its tough some days...

Indgio

Sign

Well, we have had an offer accepted on a house! Only down side is they want us in by end Nov!! eeeek! Have started a diet to try and finally loose the weight I gained in my last pg (ds2 is now 3 )

Am planning a guilty evening of watching a Twilight dvd

IndigoBell · 21/10/2011 19:42

GrumpyPants - Hi, and welcome. No dx necessary to join in.

grumpypants · 21/10/2011 19:46

Thanks - already got scd on paper, aiming to get his difficulties recognised before secondary. Hiss current school is fab tho. Just had a moment - he is no good at recognising when to stop a 'game' and its ended in tears again (never his, funnily enough).
Sorry to see soome of you also have healh issues - it took four years for my weird trapped nerve to be found so feel for you.

moosemama · 21/10/2011 19:59

Beca, have you looked at [www.myfitnesspal.com My Fitness Pal]]? It has really helped me with my weightloss (4 more pounds and I'll have lost 3 stone since June 14th). It makes it so easy to keep track of what you're eating.

Hello and welcome grumpypants (had to laugh - your mn name is what dh calls me ). Cross posted with you and then my meal arrived, so I missed your post. Have you tried actually giving them the original copy of whatever it his your ds is ... ahem ... copying (for want of a better word). I told ds's teacher to go and watch it on the catch-up tv. Mind you, she is an exceptionally good teacher and was willing to do that in her own time - I'm not sure many would be.

Your ds sounds a quite similar to my ds1 (he's 9 and was dx with Aspergers last January). He never knows when to stop either. Games with his brother and sister are forever ending in tears.

moosemama · 21/10/2011 19:59

Ahem - I'll try that again shall I My Fitness Pal

Becaroooo · 21/10/2011 20:03

Moose - wow! Well done! I hav joined weight watchers with my SIL so we shall see....I have had a Wii fit since Jan and havent used it yet!

moosemama · 21/10/2011 20:12

Thanks Beca. Its been ok actually, just calorie counting and exercise - calories in/calories out stuff. I think the biggest weightloss has come from not stuffing chocolate every night to be honest.

I worked really hard to pull myself out of the CFS crisis I was in last winter and build up my fitness slowly - starting with just walking and building that up, but have just finished the 30 Day Shred and am now doing another one of her dvd's that's longer and more cardio based.

I have lost more inches with the exercise than the weightloss to be honest - 20 inches across my body since 18th August, 4 off my waist, 2.5 off my hips, 2 off my chest, 2 off each thigh, 1.5 off each knee, 1.5 calf plus lots of little bits here and there.

1 stone 4 pounds to go to get to my target weight.

Funniest thing was when the SENCO came out of school to see me last week and stood in front of me for ten minutes without recognising me one bit. I even smiled at her and she smiled back, so I just assumed it wasn't me she was looking for! At the same time ds1's teacher from last year was walking up and down past me looking more and more flustered. Turns out she was also looking for me to give me an old piece of his work, but she hadn't recognised me either - they both suddenly realised who I was when ds2 came flying out and flung his arms around me!

grumpypants · 21/10/2011 20:13

Thanks moose, that's a really good idea.
Trouble is, I guessed what was wrong pretty early on, and looking back I worry that I have helped to mask things - me thinking up stuff for projects, me teaching him 'the rule is...' (Look at people etc) and I am worried that he won't be bad enough for a dx, and that when we hit new ground (secoondary) it will all be awful. Gah ! Overthinking again!

Well done on tjhe weight loss btw

Ben10WasTheSpawnNowWeLoveLego · 21/10/2011 20:19

Grumpy We're waiting for a dx too and probably going through all of the same emotions as you. I'm already worrying about secondary and DS is only year 2!

moosemama · 21/10/2011 20:23

I had the same concerns about ds and had convinced myself he wouldn't get a dx because he wasn't bad enough. They carried out the ADOS on him and I sat there opened mouthed at how badly he did.

Like you, I think we have always managed his difficulties and taught him the rules and of course, to us, he's just ds and always will be. It can be hard seeing him through other people's eyes sometimes.

He's a clever little so and so. Only this morning when I told him not to turn his back on me when I'm speaking to him he replied "its not my fault, you know people with Aspergers struggle with eye contact". I then pointed out that I didn't actually ask for eye contact, but I would rather talk to his front than his back! We then had yet another conversation about how people don't stare at each other when they are talking, their eyes move to each others faces and then away to give the other person the signal that they are listening/interested etc.

I worry about secondary as well. We are just going down the statementing route, as I want one in place if possible before we have to start applying (he's in year 5 now). Without one, I think we might be looking at home schooling, especially since we found out his one and only friend is going to grammar school, so won't be going with him.

grumpypants · 21/10/2011 20:26

Hi ben ds is year 4, and infants was a write off really, (hope not the same for you). I was listening to LBC about parents 'wanting' dx - its not that, its wanting their difficulties to be formally recognised.
We are waiting for S and L report - could be one year plus, and need paed to ok a private one if we decide not to wait. Its so nice to have this anbonymous haven.

Ben10WasTheSpawnNowWeLoveLego · 21/10/2011 20:32

Oh gosh grumpy we have been lucky. I first requested an assessment for ASD in March when we got his dyspraxia and SPD dx and we have already seen paed, SLT, EP and OT. It is so wrong how differnet areas work so differently :(

Y1 was a write off but Y2 is a dream. His teacher is so on board with all of the interventions - except daily OT which I haven't been able to get sorted yet. I think my many tears at school combined with 2 of the 3 boys with ASD (not including DS) leaving the school has helped though.

I don't want DS to get a DX. I want him to be NT :(

grumpypants · 21/10/2011 20:39

Oh ben.
Of course you do. I think that's normal. What I want is for a dx so that I can ask for a bit of understanding when he reacts to unfairness, grey aread, etc etc
We have had such a long time to realise that he has problems, that a dx would be a relief. I do get that maybe that's not the same for everyone.

grumpypants · 21/10/2011 20:42

Moose - the reality is so different to the stereotype. A bit funny that your ds has told you about the eye contact - ds was outraged about my criticism of his writing, as he 'can't help it'

moosemama · 21/10/2011 20:50

We are having a lot of "I can't help it - I have Aspergers" conversations at the moment. It was one of my concerns about telling him of his dx, but as it happens he found out from another family member before we could tell him anyway.

That said, knowing why he struggles with some things and is different than his peers in certain ways has really helped him cope better at school. Its like, now he knows there's a good reason, its ok and he doesn't need to struggle so hard to try to be like them, he can be more like himself. I suppose its given him some self-acceptance that he didn't have before.

We have the writing issues as well. He uses an Alphasmart at school now and is finally remembering to put spaces between his words, which helps!

creatovator · 21/10/2011 20:51

Hi Grumpy, Hi Ben,

I didn't want my ds to get a diagnosis either. I didn't think he was bad enough, but when the report came, it described ds to a t and actually the dx has been really helpful in getting the support he needed. Then when I started learning about ASD it helped all of us as it enabled me to understand his behaviour, provide ways to help us cope with it and deal with my emotions and other people's reactions. Hope that all makes sense.

I did have to go through a grief process first

creatovator · 21/10/2011 20:57

Moose- we've had the "I can't help it, I've got Asperger's" too, but usually it's something that he can do and doesn't want to, so we usually take the, "that's no excuse" line. It seems to have stopped for the moment.

Well done on the weight loss btw. Have you tried the, "Just Dance" or something similar on Wii. I was using it at the beginning of June and found it to be much more fun than other things for exercising.

Ben10WasTheSpawnNowWeLoveLego · 21/10/2011 20:58

I'm off to bed. You lot enjoy your or Weight watchers low alcohol for those of you watching your weight

moosemama · 21/10/2011 21:01

I think the important thing to hang onto is something that is said on here a lot. A dx doesn't change who your child is, its really just a signpost to direct the support that they need towards them. As I said earlier on up the thread, to us, ds1 is just ds1, always has been, always will be.

Obviously many of us will go through a process of grieving when our dcs are first dx'd. I think that's understandable and natural as we think about what might have been and what it means for their future, but in the end all it means is that you/the professionals have identified specific needs that need appropriate help and support, without the dx that would be very difficult - lord knows its hard enough with one sometimes.

I really like the idea of thinking of it as a signpost and not a label. Directional guidance for others, rather than a label hung around your child's neck, if that makes any sense at all. I could just be talking overtired nonsense now though. Feel free to slap some sense into me if so.

moosemama · 21/10/2011 21:06

Creatovator, that's exactly when ds uses it. Ironically, for the geniuine AS related stuff, he generally has no idea he's doing it, so can't use it as an excuse. He only ever tries it if its something he is capable of but doesn't want to do.

We don't have a WII (it would be yet another bit of computery gadgetry for ds1 to obsess over ). Not sure how I'd get on with anything dance based - I've never been the most co-ordinated person in the world. Am struggling with getting my hands and feet to do different things in the kick-boxing circuits of Banish Fat Boost Metabolism at the moment - the dcs think its the funniest thing they've ever seen.

Fortunately, I actually seem to enjoy full on circuit training and am now a huge Jillian Michaels fan as a result. Actually the inch loss from doing the shred was enough to keep me motivated.

moosemama · 21/10/2011 21:06

Night Ben10.

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