Active discussions

Please or to access all these features

Talk
SN children

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

Original poster

difficulty coping with ds

15 replies

Poplar · 21/07/2004 20:37

Please dont let me be the only one..I have a ds with cp (2 Years) some days are great others like today he has cried all day. Is it me or is he really unhappy the slightest thing sets him off. Does anyone have any experience of this?? Iam sure it is be the additional frustration of not being able to communicate, walk, see as well as being 2. Would welcome any support or advice

OP posts:
zebra · 21/07/2004 21:11

Is it really related to his CP or is he just being 2? 2yos are hard work, regardless of special needs.

Davros · 21/07/2004 21:13

Poor you Poplar, sounds like a bad day. I can't help you with CP but there's lots of other lovely mums here who can, just don't know where they all are tonight! I'm sure that a lot of the touchiness and tears is due to poor communication etc as you say. Hope tomorrow is better.

Jimjams · 21/07/2004 21:21

We had a bad day today with ds1. Mainly because I had a lot of jobs to do so couldn't give him 100% of my time all day. He can't fill his time at all so by the end of the day he had exploded (he's 5- and autistic- but non-verbal- not being able to communicate certainly makes things very hard).

Do you have any communication systems in place for him at all? (or is anyone looking to set one up?). Is he likely to develop speech. My son is so much better now we have a fully functioning PECS system set up at home. I know that modified versions are used for children with CP- and it might be worth asking about it. It has made life a lot easier for him. The other thing I've been using with him is a visual timetable (but not today- so another reason for the bad day I think). I didn't think he'd need one- but he's really responded well to it and seems happier. 2's quite young but my younger son (2 and a half- NT- has picked up how PECS and the timetable work just by watching) so it may be something to ask. Do you get portage, SALT etc?

Davros · 21/07/2004 21:25

After sending my post I was thinking that should have asked if you've got any plans on how to tackle communication, e.g. PECs and Jimjams has beat me to it! It is a fact that difficult behaviours are usually linked to communication so you are on the right track plus you've obviously got other issues to think about. Its so hard, he's so young, don't know how to suggest you start, maybe some internet trawling for PECs etc but that is if you can find time.

Jimjams · 21/07/2004 21:36

You're not near me are you? PECS is a bit of a nightmare to set up alone. If you are near me (SW England) I'd be happy to show you the basics.... Even being able to ask for a biscuit/drink/favourite toy etc may make it easier for him.

Jimjams · 21/07/2004 21:44

I sound a bit zealous don't I? Pyramid should hire me PECS has worked well for us- and is slowly helping language as well.......Really I should be symbol making now.....

lou33 · 21/07/2004 22:31

Hi Poplar. I have a ds who is 3 with cp (spastic diplegia), he cannot walk, and got a wheelchair yesterday (thread called my blond haired angel got his wheels). Am only too happy to chat to you either on mn or privately though contact another talker if you want to

Original poster
Poplar · 22/07/2004 23:25

Thankyou for all your support, yesterday was a bad day. I havent heard of PECS can you tell me what it is all about? I seem to find out about everything by accident..who is meant to tell you about all of this? Have only just found out from another mum that I should be entitled to claim for DLA which would be so useful for buying him specialist equipment. Today was alot better, I took some time out,it does make a difference, and ds came up with a new word.'no'!
I think I need to learn how to share my time out better - I have also got a 5yr dd and 8mth ds. Off on holiday for a few days, hope to speak to you again soon.

OP posts:
heartinthecountry · 23/07/2004 10:10

Unfortunately Poplar AFAIK there is no-one who 'should' tell you any of this stuff. If you are lucky you have a really switched on HV/SW/Paed/GP etc who tells you. For most of us, I think we do find out everything by accident, by talking to other parents. It's crap , especially not having been told about DLA .

I had a bad day too yesterday with my dd (nearly 2)She wanted my attention and I was trying to sort the house out - always ends in tears (often mine!). I am sure she must get so frustrated and bored. When I think about it, an NT child would maybe have been at her stage of development (able to sit, move about a bit, but not crawl, sort of communicate, but not say anything) for maybe a couple of months - she has been there for about 8 months already .

heartinthecountry · 23/07/2004 10:12

I don't mean that dd has been completely stuck for 8 months, but development is really slow.

Caroline5 · 23/07/2004 13:56

I know how you feel HITC, my dd is similar - can sit, doesn't really move about, cannot really communicate - afraid she has been there since about 9 months (now 3 yrs 2 mths). She has made progress, but it's not that obvious to an observer.

Poplar, hope you have a good holiday. It is rubbish that no one told you about DLA. Mumsnet has been the main source of information for me!

heartinthecountry · 23/07/2004 16:57

Hi Caroline5 - any news on the retts diagnosis?

Caroline5 · 23/07/2004 21:41

I've almost given up on that one HITC - I've left a couple of messages and the paed has chased it and still no response. No news is I suppose good news, although I'm beginning to wonder if they've even done the test at all!

heartinthecountry · 23/07/2004 23:00

That is so crap . I suppose at the end of the day a label for your dd doesn't make any difference to who she is but they could at least get back to you. Its just rude . Sorry, v. angry on your behalf!

Caroline5 · 24/07/2004 16:03

Thanks for that HITC. I need to get more assertive!

New posts on this thread. Refresh page