out of step with the rest of the world

[Jimjams]

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!

socci the most important thing when starting PECS is to find a very strong motivator- can be anything. A spinning top, something she likes stimming over- anything - as long as she wants it enough to reach for it.

Butty- we went on one of the courses, although often portage workers etc are trained in the technique. DS1's school helps with some symbols but I make my own as well.

During the course they showed a video of an adult being introduced to PECS- nothing had ever worked for him- he had no way of communicating his wants (and as a result was quite violent) and he started using it really quickly. Almost moved me to tears!

socci the i wantt is another card. So he gets the I want card, then selects the card for whichever item he wants, places both on a sentence strip (a plastic thing with velcro on it) and hands the sentence strip to me.

Just gave a hollow laugh at the thought of taking my ds to the beach. He just runs straight towards the sea and nothing will distract him.

I know what you mean about the 'out of step' thing. Last week dd was visiting friends and I took ds to the park which was full of little kids riding bikes, playing swingball, football etc. I took ds in the playground first but it was too nerve-wracking as he kept trying to go under the see-saws when other kids were on them, walking in front of swings etc. The other parents were all sitting around in the sun chatting and there was me, rushing around trying to keep ds safe and persuade him to play on something properly.
Had some success with our stroll around the park as he did actually walk quite a long way instead of curling up on the ground. He's improving a lot and even holds my hand sometimes which is great. Again, constant vigilance is required as he just keeps going regardless of other walkers, dogs, bikes and I have to keep grabbing him to avoid collisions. Also he has an odd way of walking (I think it's sensory as he doesn't seem to be able to judge where the ground is and picks his feet up very high)so I have to watch he doesn't trip in case it puts him off walking again.

Then we had our big success! There is a miniature railway track in the park which they open on bank holidays. Ds actually watched the trains and I spent about half an hour trying to decide if he would like a go. In the end I decided to be brave and if he caused a scene so what? Plus, there wasn't a queue so I asked the ticket man to watch the major buggy and on we got. Ds loved it! Usually I would feel him tense and shaking and trying to climb off. Not this time! I knew that to all the other families it was a fun 5 mins out of their day but I went home absolutely thrilled. We went back a couple of days later with dd and it was just wonderful to be like all the other families for once, being able to do something together. I've got a list of all the days the railway is running and written them in my diary!

How wonderful to find something he loves to do, pixel. Your post really made me smile.

Ah, Pixel, that is fantastic
Jimjams- feel like that SO many times. And it always amazes me how much 'normality' is taken for granted. Sending positive vibes to your friends- 'wanting' it to be Retts, OMG, bless her.

Ah thats great and what a great reward that will be for him too

Butty, I was also thinking about PECs for you. I can't understand why it hasn't been suggested to you before tbh. Even if you can show him some pictures and he can choose, say Shops or Park. Socci, I'm also surprised it hasn't been suggested to you, or at least visual strategies. Of course we all want our kids to speak but we need to have a plan in the meantime or in case it doesn't happen. Even kids with speech can find visual prompts useful.
Well I've had a really sh*t holiday. I thought I had it cracked with a couple of days of play centre, someone who could take DS out for a few hours on some of the other days, a visit from my sister etc. But DS has been awful, classic "challenging behviour" to the point that he got so hysterical last night that I slapped him round the face. It didn't make any difference. I am about to email his Paediatrician and tell him we can't carry on like this and I am going to cc Soc Svs and his school. DD has also been on steroids and anti-biotics to try to clear nasal/ear congestion and she has been whining and clingy and I've had no help with her as my twice a week "nanny" went on holiday. I am ready to chuck a rope over the nearest beam.....

Just starting to read this and feeling rather emotional. Went to a DSA family disco with the kiddies last night and seeing a few of the "older" children has just got me wondering about the future again. Sorry, I really don't want to be negative. I know how lucky we are in so many ways. But I have only read the first few posts on here and I am now just sitting here in tears!

Anyway, the reason for butting in was to ask Jimjams about the sensory walk! JJ, we are staying down in Wellington, in a holiday cottage in June. Would that be a reasonable distance to visit "the sensory walk?" If so could you give me further info please.

aww dingle {{}} hope the children are better xx

I am the last person you need conributing to this thread today as i feel totally depressed! Jimjams, i am sorry your friend is "hoping" for Retts that must be really hard for her

Thanks Fio! DS still has the odd, mad rush to the loo but generally much better. DD is full of cold and her little nose/chin is red raw despite all the creams I seem to apply.

Last night was great in some ways, as it's been siad, they aren't many places you can actually let your children "roam freely".
DS was great, ran around with the other kiddies, look after some of the smaller ones, after all he is so grown up now at the tender age of 5!
But I spent nearly all my time just circling the tables with dd and stopping her from escaping to the bar!!!(a girl of my own heart!) she got there on several occasions and shouted for the bar man and signed for ice cream!! I need to give her that independence now ( I think???) but it was just so draining.
If I go to the park, I am froghtened to get her out the buggy, because I just don't want to face the fight to get her back in and I can only cope with so much running after her and keeping my eye on DS!! Oh ,,,,sorry everyone.

Fio I was thinking of you when I started the thread!

Prob tooo far from Wellington Dingle- unless you like driving. It's in southern Dartmoor- not far from Yelverton- let me know if you fancy it and I'll send further directions (have a meet up?).

Davros- sounds dreadful What sort of help are you hoping to get? Any chance of more direct payments? Not residential? I know we'll come to that one day but I'm hoping to get to adulthoood first- soooooo hard though). My cleaner/mothers help has taken this week off as well (ill last week, holiday this week) so I have just resigned myself to living in a shit hole. DS1 is big into climbing, but otherwise has been much more relaxd than expected. We're going on a lot of drives though! (and getting in and out of the car is a nightmare).

Just discovered all the boys have been potentially exposed to measles- have my doubts (because of the history)- but will be well pissed off if they all need 2 weeks off following the holidays! The girl has had her MMR, but I'm cross with the mum as after being told it may be measles she took her to a children's farm!!! Not on!

pixel- so know what you mean about everyone sitting round chatting whilst you're rushing around like a lunatic!

Guess what the first thread I signed into this morning said? (different thread) "it's get better as they get older". Aaagghhhh off to find a bucket of vomit! anyone care to join me?

Save me a space around that bucket!!!!

Pass the bucket! As you know JJ, every now and then i threaten to consider residential but have also thought we would get past school and into adulthood before being serious about it. Today though we have started with tension and some crying/screaming already. Lots of teeth picking (form of SIB) and non stop "uh, uh, uh, uh" which is a stimmy form of constant requesting things he couldn't care less about. I've just got to try to do better with him, if I can't then who can?

Oh I know that feeling. After awful days I tend to say something like "if we can't handle him and we love him then what on earth is going to happen when we're not here" It's so hard when they're like that though. Does seem to go in cycles though- you'll be on an up soon. Difficult when a downturn coincides with a schoool holiday.

Hope things miraculously improve today, Davros. Sounds like the last few days have been truly grim.

Well it is better today, nothing lasts forever!! I don't think the underlying problems have gone away and this time I'm determined to do something about them, but today it is easier to manage. My lovely girl who looks after DD twice a week has just got back from her trip, only to tell me that her other family is away and she is available every day this week Am I going to take her up on it? Is the P...... oh, bad phrase to choose!! Today is the first day I've been able to spend some time on my own with DS and it seems to have made all the difference, although I don't think that's the answer or the real issue. Being brave I agreed to meet a friend at a play centre, she was sure it wouldn't be busy, so I sat in Clown Town wondering where she was and she was at Treasure Island! It was very crowded but OK and we left after half an hour and went shopping in M&S where DS went round with me and a trolley, reasonably easy to manage apart from other shoppers' alarm at the bunny hopping! He is back at school tomorrow so I can't complain, especially as his holidays are always short. But I don't think going back to school means that I can relax, it just gives me some time to sort out contacting Paediatrician, going to contact Gilly Baird too to see if she knows someone specialising in ASD children his age and I think I will start to creep up on finding out about residential options..... He's happy as Larry now, DD is out and I've just been able to watch Neighbours for the first time in 2 weeks. So life isn't always so grim!! Thanks for letting me vent everyone!

Yay! Great news- long may it continue and I hope all your sorting out is as painless as these things possibly can be.

Hey- next time things are grim you could always look at this beautiful anecdote which I'm sure will instantly calm and soothe you with the beauty, truth and pathos of its prose, so pertinent is it to a special mother such as yourself.

ROFL Scummy! At least it wasn't the bat.

I really wish the holidays were shorter, a week here and there maybe instead of big blocks

Silly thing is my ds has carried on going to nursery in the mornings but I am still finding things difficult

After reading that beautiful anecdote I don't need to search far for a bucket of vomit. Cheers scummy!

DS1 spoke twice today. he pointed at ds3 and said his name and he said "bye bye daddy".

i spoke with my portage worker today and mentioned the PECS system and she feel that it would be a good thing and so do the nursery workers at my CDC centre although when speaking to speech therapist she seemed somewhat against it.
I dont know why as the portage worker tried a few picture cards at session today and dyl sure loved it and even did the noise and action of a pig and dog once he saw thw cards so it obvious that he would benefit from such a thing as any sounds are better than no sounds!!!!!!!!!! And pointing when prompted which animal is a vast imp!!!!

Has the SALT been trained in it butty- sometims they're against it as they haven't been trained in it!

Just a word of warning though- PECS is not designed as a way of getting speech- often speech does follow (in the case of autistic kids anyway) but it is designed to encourage communication - not speech.

A speech therapist against PECs? What is her alternative suggestion then? Let him struggle to communicate until he pipes out the works of Shakespeare? Visual strategies are often useful, not least because the kids like the pictures!
Socci, I suspect that UKYAP has not suggested PECs as they think your DD doesn't need it to communicate. I would ask them though about visual strategies. As I said, these can be useful even for verbal children to organise their thoughts, retrieve words from their memory, visualise how long something may take, how many things need to be done, what happens next etc etc.

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