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out of step with the rest of the world

(60 Posts)
Jimjams Sun 03-Apr-05 20:01:22

I'm guessing from other threads that this is a common feeling at the moment so thought some story swapping might help us all. Also there's another (pefectly innocent and nice, pleasant) thread going on at the moment where everyone is saying don't worry it gets easier when they get older. anyway that phrase always makes me want to stick my head in a bucket of cold vomit so thought i'd seek out others rather than turning into the mad muttering woman in the corner. Feeling the need to hide in the SN world for a while (i've been venturing out to much its turning me mad!)

Went to the beach yesterday afternoon. was a bit peed off at there being no free disabled parking when i knew we'd be there for minutes, but anyway. ds2 was asleep so we left him asleep (he's never actually been onto a beach with a bucket and spade and isn't bothered about missing a walk), and I sat and fed ds3 in the car. dh took ds1 to the beach- well almost- ds1 refused to go over the top of a sand dune and just ran up and down it for about 20 minutes, then we went home. Whilst dh was off with ds2 I watched a family of 3 girls- about the same ages as my ds' get out of their car, gather together buckets and spades and set off. they did thing we can't do (like pile out of the car and stand around waiting whilst the buggy was put up etc). I sat feeding and watching and pondered that they were having the family experience that we expected. not sad really, bit envious, but more feeling like we're out of step.

ah well off to count some blessings (a friend is waiting for test results for her dd and is "hoping" it's Retts- so you can imagine what the alternatives are)- we have many!

happymerryberries Sun 03-Apr-05 20:05:51

Sweetheart, read the thread and my stomach lurched for you. All I can do is send a hug and say that I bet ds1 had a great time even if he does march 'out of step'.

butty Sun 03-Apr-05 20:09:19

I totally know how you feel!!!!!!!
As you know my son has GDD and CP so finding somewhere to go with my active 5 year old is horrendous.
The parks are out of bounds as he can't walk, He's to big for the baby soft play areas and is marching for the bigger and more dangerous things that he is'nt able to go.
All he seems to do is sit in his buggy which must be totally boring and as he doesnt speak or sign as of yet i never know what he wants to do either way!!!!
We cant even go in the garden as it is concrete so more bumps, cuts and bruises are delayed but in his frustration with life things are beginning to get intolerable with both the kids!!!
Suggestions any one!!!!!??????

Jimjams Sun 03-Apr-05 20:09:48

wish he would march- charge wildly like a lunatic more like!

Jimjams Sun 03-Apr-05 20:12:55

I'm trying to think of something butty. How manouverable is his buggy? We try and do a lot of walks as that's one thing both boys can do (and ds1 will sometimes). We had a success on Saturday morning (took him somewhere he goes with school). We had to split up- dh with ds1 and me with ds2 and ds3, but it worked as it lasted more than 5 seconds. Both your ds's may enjoy a walk?

butty Sun 03-Apr-05 20:16:05

YES!!!!!!! At least then things would feel normal if such a thing!!!!
Its hard on my lass as she wants to do things that we cant due to her bros needs, She is starting to resent him and in a way i relate to her but yet feel angry that poor little man is trapped in his own bod and until the speech and walking is there which could be never i fear things will spiral out of control.

motherinferior Sun 03-Apr-05 20:17:29

it's my thread about custard that has the posts, isn't it. I am sorry. I do realise that the same platitudes do not apply everywhere, and in fact I think everyone else does too

butty Sun 03-Apr-05 20:18:19

My lad cant walk and his hips are rotating more outwards which is the opposite of what should be happening, he refuses to use frames or walkers and after 2 steps he ends up in a heap on the floor!!!!

Jimjams Sun 03-Apr-05 20:19:18

don't worry about the thread mi- it's something people say all the time! As dh points out I allways feel this way in holidays anyway. Seriously (that's why I puut perfectly nice thread etc) it's just life!

butty Sun 03-Apr-05 20:20:14

I wish the local council would provide facilities for families with similar situ's to mine.
Sometimes my head hurts from banging on that good old brickwall!!!!!!!!

tamum Sun 03-Apr-05 20:21:03

Yes, I'm really sorry too. I would, obviously, not have been so crass as to go on like that if the children in question had SN.

Jimjams Sun 03-Apr-05 20:21:52

Is he happy in his buggy? It is hard - especially if your dd is older I think. DS2 has never known any different so doesn't actually realise that he is missing out (which he is!)

Does he use PECS if he's not using sign? PECS helps us a lot in reducing frustration.

butty Sun 03-Apr-05 20:22:03

Life is hard at the best of times but i pick the pieces up and live day by day but i agree the holidays are of great pleasure but somewhat torture at the same time!!!!

Jimjams Sun 03-Apr-05 20:24:19

actually butty the walk we went on on Saturday was on Dartmoor and had been made with wheelchair access (grass but flat and easy). Enclosed and safe (which is why schoool take the kids there) and was described as a "sensory walk" . I didn't know it was there (and I've been going somewhere near there since I was a kid)- school told me- brilliant- biggest success we've had in years.

butty Sun 03-Apr-05 20:24:25

lets just say he tolerates his buggy as there is not much else he can do about it and the only signing at the moment is makaton although he doesnt sign to me or anyone else. What is PECS??

butty Sun 03-Apr-05 20:26:55

there is'nt really anywhere here like that.

The beach will be a good thing in the summer if he doesnt mind eating sand!!!!!!!!!!

Really nice area with flat packed sand and the tide never comes in just a 2 minute drive, but never seem to get the weather!!!

Jimjams Sun 03-Apr-05 20:27:52

picture exchange communnication system - here It was developed initiallly for children with autism but is used successfully for children with cp\learning difficulties etc as well.

butty Sun 03-Apr-05 20:29:34

cheers, i will have a glance at that later.

Socci Sun 03-Apr-05 20:30:24

Message withdrawn

Jimjams Sun 03-Apr-05 20:31:58

PECS has been lifechanging for us - seriously. BUt right now I have to go and start coooking tea and try and put the baby in his hammock. If all goes well will post more in about 20 mins!

butty Sun 03-Apr-05 20:34:41

Okey doke,will speak soon.

happymerryberries Sun 03-Apr-05 20:39:49

Jimjams, lol at him charging wildly! Sand dunes would be great for that.

Jimjams Sun 03-Apr-05 20:50:47

right tea on!

OK PECS involves the child chooosing pictures from a board or book and putting them on a sentence strip and passing it to us.

The reason it is so good is that to teach it requires no attention. So in phase 1 - you need 2 adults and the child sat at a table. One sits behind the child and one opposite. The one opposite holds up a desired item (choc button in our case) and as the child reaches for it the person sitting behind takes the child's hand and physically prompts (so guides initially) the child to pick up a PECS card for choc button and pass it to the person sitting opposite. The person opposite says "oh you want chocolarte button" and passes it across. You do this repeatedly until the child is exchanging (ie picking up the card and passing it to get the button) without prompting.

Youe then move onto phase 2 which gets the child travelling- so they pick up the card and have to walk to the adult (obviously important for autistic kids who ooften don't realise they need to seek you out- it's encouraging spontaneous communication as well).

Then you move ont phase 3 where they learn to discriminate symbols

then phase 4 when you introduce "I want" X

then you move onto things like commenting "I see" X

We have boards at home and ds1 does use them to spontaneously request (usually biscuits!) but also things like light on or light off. Also if he's screaming we can say "get a PECS" and he will go and get it so we can work out what's wrong. If he stands blankly in front screaming then I know its not something on the board which narrows it down a bit. He's also quite clever and will use eg "I want car" if he wants to look outside the front door.

His school uses PECS for everythign. mThey sent home a lesson he had done where he had to follow instructions on building in the soft play area- all in PECS. Also they have to request things like " I want orange drink" "I want brown biscuit" etc at breakfast club. And the school take them out and use it in the community- so he'll reuqest "I want biscuit" in a cafe- exchanging with the (tipped off) cafe worker.

I think its more useful than signing as anyone can understand it. And its usually more successful than signing with autistic kids- as to start using it they don't have to want to communicate- they just have to want something (eg a choc button).

Jimjams Sun 03-Apr-05 20:52:28

Must emphasise - when teaching say phase 1- no attention is needed at all- you do not need to establish eye contact or anything. You just do the work for them and they get the reward.

It's ABA really!

I'd recommend the pyramid course. Expensive but worth it.

butty Sun 03-Apr-05 21:15:28

how do i get involved with this and can it be reccomended to his therapists.
Also do you get help with the costs for the cards and boards as i have been on the site and it does cost money that i dont have.
Other than that i think it looks fab and i am sure that My son would hopefully get a grip of this as he is far from stupid!!!

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