ARGH school holidays!!!

[mandyque]

Is anyone else having a rough time at the moment? We have managed one good day so far, the rest have been completely dominated by her obsessions, the same videos over and over and over again, the constant demands for things and the meltdowns when we go anywhere. Last week we had 3 meltdowns in public, by the end of it I was a bruised tired wreck. I'm going insane with boredom and having to listen to the same cr*p over and over again on the TV. I daren't take her anywhere because I'm on my own and when she has a meltdown I simply can't manage her alone.

 

She was excluded from our special needs playscheme because of her special needs believe it or not, she needs 1 to 1 and they can't supply it so she misses out, how ridiculous is that? Her community nurse managed to get only 2 playscheme days in the whole of the 6 weeks holiday which completely defeats the object. It's not like I don't get respite, it's not that, it's giving her some sort of routine to get her through the holidays, at the moment the whole structure of her life is torn apart and she and I are not coping well at all. I am in the process of sending a letter of complain to the community nurses big boss to point out that their system is greatly discriminatory and families are going into crisis because of it.

[Guest flutter]

<'> <'> <'>

for u

are you having probs at home cos there is no structure?

my daughter is so bored, but i am soo tired?

could you make a plan, only go places where she will not wnat things, or make a decision afore you go out, " we are not buyin anything today for you"

could you go and help for a bit at the playscheme and then she could get one to one? ( not you workiing with her)

trying to think of something that would help sorry if i not mamanged it

C x

[mandyque]

She is very low functioning autistic, non verbal so I can't sit and talk to her about what is happening or plan anything with her, she simply doesn't understand. They won't have her at all in playscheme and if I am there she will just play up more, we've tried most things before.

 

In addition to her difficulties I suffer from depression and anxiety and I have to pluck up the courage to leave the house with her most days. Then if she has a meltdown I daren't go out again until I feel strong enough to manage. I have no family support, I am completely alone apart from the professional help we get, they understand but are tightly restrained by resources. The community nurse was the one who suggested writing to his boss and claiming discrimination, she is not the only one who is excluded from the playscheme because her needs are greater than they can cope with.

Edited August 3, 2005 by mandyque

[lil_me]

Know how you are feeling on some things, most of the holidays so far have revolved around my sons interests, taking my boys anywhere alone has proved to be complete chaos, and we don't have any play schemes or other practical support in the area unfortunately at all and family all work, so its just me and my boys.

 

Got to try and get some shopping today, fingers crossed it doesn't take 3 hours like last time

[Kazzen161]

I have three boys - two have AS, and so far although I have planned what we will do I have not been able to get all three to agree to go - if two want to go, the other one doesn't! I am really bored too, and very fed up. The boys will go to their Dad's for a week (I can't wait!!), but that is the only respite I will get.

 

The kids aren't going to sleep until gone 11, so I am getting no time at all to myself.

 

And the lovely person over the road who insists on running his motor(super)bike for several minutes before he leaves at 7, is really getting on my nerves!!!

 

Karen

[lorryw]

Hello Mandy,

Sorry you are having such a tough time. Im afraid I can only offer a hug and a sympathetic ear.

Please write to your community nurse and complain. We had the same thing with my son many years ago. I was the founder member of a support group who arranged funding etc for a play scheme and was then told my son was too low functioning to attend! I was livid but they couldnt guarantee his safety so he didnt go. I think if you mention that she is being discriminated against because of her disability they will sit up and take notice. I didnt have access to all the information available now and had no idea how to fight my corner.

Have you applied to the family fund, would she enjoy a trampoline which is wonderful for wearing out our kids

I really feel for you, been there and got the tshirt. My son loves water and I would run him a bubble bath mid afternoon just to keep him occupied. He is now 20 (its his birthday today) he is still non verbal but comunicates with a variety of sounds and a wave of the hand, never points.

If you are ever feeling really cheesed off just send me an email, Im always around

and happy to listen.

Take care, Loraine

[elaine1]

aww hope something comes of your letter. My son is ok with no structure, he just plays his playstation of the pc. Its only if i say were going out that he protests. Both kids had dental appts today and we had to go on the bus. Two of his pet peeves.

He refuses to sit by anyone on the bus and this time of year you cant pick and choose your seats.

There are so many moms and kids on the buses.

 

Then we got to dentist. Hes ok with the checkup, he lies there stiff as a board, but hes ok. The dentist then says im going to put fissure sealant on the back teeth. This involved putting liquid on them then drying it with ultra violet.

 

he sank lower and lower in the chair, his mouth kept shutting and he had white knuckles!!!

 

phew i lost 2 stone just sitting there watching it all.

 

we got home and he sprinted upstairs to his bedroom and back to normal lol

[Mother in Need]

And the lovely person over the road who insists on running his motor(super)bike for several minutes before he leaves at 7, is really getting on my nerves!!!

Karen. could you talk to this guy and explain to him? WE had a similar problem with a parrot of all things, which was put out at 7 am and was making more noise than my boys (and that's saying something!). However, when I suggested that 7 was a bit early and could he maybe wait till 8 before putting the parrot outside, he actually listened, then asked other people and they all agreed that the creature was rather noisy. He now often doesn't put him outside till 10 am but never before 8!

 

I too have no family, am completely alone, their dad is useless and non interested in them (AS son won't stay alone with him anyway) , I've three boys incl 12 year old with AS and ODD, life can get pretty tough. However, the holidays so far aren't too bad, which shows that school is harder on him than I thought. Mind you, he still locked me in the bathroom this morning, and was very grumpy and irritable most day; we had a HUGE scene also when his older brother wanted to spend some time with his friend alone (a neighbour came over to ask if everything was alright...);when dropping off a letter to the GP at the surgery I really couldn't leave him alone in the car, and yet he blatantly refused to come out, you know the scene, screaming, shouting, holding on with full weight to something so I can't shift him (he's too heavy for me anyway), so what could I do................

What do you all do in those moments, who do you get them to cooperate?

However, everything became so worth it when I bought him this life vest and took him to a nearby lake in which he loves to swim; he is very over-confident but can't really swim all that well, s

[Mother in Need]

And the lovely person over the road who insists on running his motor(super)bike for several minutes before he leaves at 7, is really getting on my nerves!!!

Karen. could you talk to this guy and explain to him? WE had a similar problem with a parrot of all things, which was put out at 7 am and was making more noise than my boys (and that's saying something!). However, when I suggested that 7 was a bit early and could he maybe wait till 8 before putting the parrot outside, he actually listened, then asked other people and they all agreed that the creature was rather noisy. He now often doesn't put him outside till 10 am but never before 8!

 

I too have no family, am completely alone, their dad is useless and non interested in them (AS son won't stay alone with him anyway) , I've three boys incl 12 year old with AS and ODD, life can get pretty tough. However, the holidays so far aren't too bad, which shows that school is harder on him than I thought. Mind you, he still locked me in the bathroom this morning, and was very grumpy and irritable most day; we had a HUGE scene also when his older brother wanted to spend some time with his friend alone (a neighbour came over to ask if everything was alright...);when dropping off a letter to the GP at the surgery I really couldn't leave him alone in the car, and yet he blatantly refused to come out, you know the scene, screaming, shouting, holding on with full weight to something so I can't shift him (he's too heavy for me anyway), so what could I do................

What do you all do in those moments, who do you get them to cooperate?

However, everything became so worth it when I bought him this life vest and took him to a nearby lake in which he loves to swim; he is very over-confident but can't really swim all that well, so I have been worried re his safety in the water a lot, but now with the vest he can go as far as he likes! He enjoyed it greatly and was jumping up and down for joy!

 

My structure (if you can really call it such) is home in the morning (which means computer and videos for the boys and should mean some work work for me (not that the internal/infernal interruptions really help me to get anything done) and then in the afternoon we go out somewhere, preferably low cost like a walk around or a swim in some nice cold lake.

 

First week over, only 5 more to go.........and I'm still sane.........!?

[mandyque]

Thank you all for the replies, I appreciate them, I just get so down sometimes, usually just need a rant to feel better

 

Lorry, I do get help from family fund, have done for a few years now, but I can't apply again until January now, I'm going to ask them to fund a patio or something for the back garden so she has somewhere to ride her trike and scooter, she can't play in the street and the garden path is too narrow for the trike. She has a small trampoline, one of those little kiddy ones which she likes to jump on, I don't have a very big garden though, otherwise I would love a big 8ft one, she would really love it. It is well stocked for a little garden though, she has a tractor, a picnic bench, a bike, a swing, a slide, paddling/ball pool, pushchair etc etc

 

I had her community nurses colleague out today for a chat, I told her exactly what is going on, what has happened and how I feel about the whole situation. She was very sympathetic and very angry at the situation, all her colleagues are stressed to hell about it all because of the lack of resources and the number of families having difficulties because of it. I found out that the playscheme that they got her into last year didn't get paid for it so they were reluctant to take another SN child until they came up with the money Someone high up has got to start taking responsibility for this mess, it's getting beyond ridiculous, I' m seriously considering getting hold of some of the other parents involved and contacting the press about it.

[Kazzen161]

Mother in need, I haven't spoken to him yet, but T (being ever so tactful, like a typical Aspie!) was talking very loudly about them and their bikes, and that they always park their cars in front of our house, so they can get the bikes in and out of the garage + that they often leave their bikes parked in front of our drive whilst waiting for their biking buddies to arrive - and didn't hear him this morning.

 

 

The neighbours over the road are all RAF personnel, and most of them don't have children. They are typical young couples - loud music and little thought for the neighbours. I did complain to one man cos he was still drumming at 11pm - he obviously didn't realise how loud it sounded - but I haven't heard any drumming from his place since + knocked on another's door cos they had all their windows open and loud music playing at 11pm gone - it seems likely I interrupted an "intimate" moment - but he apologised, and turned music down (could still hear a few moans and groans though!).

 

Karen

[lil_me]

I think I am lucky, the house that joins on to mine belongs to a retired couple, although he is the nosiest neighbour I have ever known there is no noise etc and since I explained to them that if they can warn me in advance of any big noises (they were having a brick wall built and my little guy kicked off because of the noise) then I can take him out or occupy him with something else they have been ok. I haddn't mentioned before then my sons problems but I had to in the end.

 

So far this week my house has been chaos because we have been seperating the boys bedroom so they have one each, from being small they were in together and had the other as a play room but Mikey wouldn't go in there if his brother was there and was blocking himself in my room to get his own space, the seperate rooms have given him the space he needs and its working better so far. My main problem is the NT 4 year old who wants to play with his brother all the time but his brother is not interested so keeping him busy and out of his way has been a major challenge.

 

I still haven't found any play schemes in my local area, don't think anyone does them

[mandyque]

The most ridiculous part of it all is that our local authority do provide a playscheme for special needs kids, but only if they can cope with a 3 children to 1 staff ratio, which therefore excludes any child who needs more supervision and care. It's not just the autistic kids who miss out either, it's the ones who have medical needs and physical disabilities too, they are discriminating between different types of special needs which is very wrong. I have written to the big boss who is in charge of it all with a very strongly worded letter so we shall see what comes of it. I'm fired up on the subject now though and i'm not letting it drop!

[punky]

I am starting to struggle with the holidays now. 3 kids no partner, exhausted, my kids are going to bed gone 11 aswell and what with the sleep walking and babies feeding etc I am on my last legs, tired miserable and dont know how to cope with the whining every five minutes about each other. its all doing my head in today. I was really looking forward to the holidays aswell. now I realise I havent got anyone as a friend to chat to. oh poor old me I am a hopeless case today

[Minxygal]

My son seems to have made his own structure and as usual this involves locking himself happily in his room with the TV guide and feeding one of his obsessions with involves the video recorder and various blank tapes.

 

The problem we have with this is that we have to keep forcing him out of there, as the longer he sits in isolation the louder and angrier the outburst when he has to then take part in some kind of social interaction, like a trip to the shops or a visit to the library etc. If we leave him in there we actually build a rod for our own backs as it becomes harder and harder to force him out.

 

My other son, who has Aspergers seems to spend much of his time keeping watch over our car and reporting any occasion when someone has walked a little too close to it or looked at it for too long.

In his mind every child on the street is only there to cause him harm.

 

The provision for kids like mine during the holidays is minimal where we live and what is available is usually age approprite and unfortunately my youngest doesn't find groups that are approprite for his age at all interesting and would much prefer groups that cater for ages well below his.

[Kazzen161]

Had a tough day today, and only had the Twins here (my Mum took T out for the day).

 

The Twins started fighting in their bedroom - I could hear thumps and bumps - then a pillow and a duvet came flying down the stairs - then a mattress!

 

Afterwards R (AS) was sobbing his heart out in the bedroom, but M came down and had some breakfast as if nothing had happened!

 

When they had both calmed down, I asked what they were fighting about, and neither could remember!

 

Their fights are scary now - M is getting stronger as he is going through puberty, and R has immense strength when he looses it. Last time I tried to separate them, I hurt my wrist.

 

I am trying to keep them "entertained", but I am shattered!

 

They went to their Dad's at 4, and I fell asleep on the sofa until 7!

 

Karen

[oracle]

Today was going well with Matthew.We met some friends at our local Fun Shack. Had two hours of peace and harmony until his Dad was conned into buying Matthew a bottle of Lucozade because he was thirsty. Lucozade is a definate no no and Matthew knows this but Dad forgot Within 3O minutes he went into melt down and for the next four hours he was super hyper and almost swinging off the curtain pole.

 

I don't think Dad will forget the 'NO LUCOZADE' policy in a hurry.

 

Carole

[smallworld]

We're back on the 'no cocacola' diet after letting kids have kfc for dinner tonight, they've just gone to sleep. I hope, I daren't go and check !

It's my fault, today I am grumpy and down and refused to cook anything else after lunch when no-one even took their plates away afterwards.Am threatening an all out strike ! or perhaps I'll just run off,and leave em all to it. It's that bad !

Does anyone else entertain these fantastical thoughts of escape ?

I think I really know the answer, but feeling like especially bad mother today.Should be tucked up in bed to prepare for a better day tomorrow.

But have realised that the big problem for me in the hols is that I don't get any time on my own. I seriously need it, or I turn into total witch.

hence, I'm still here, albeit on auto-pilot !!

[mandyque]

I can totally relate to that waccoe, the lack of time to yourself is so hard to cope with for so long, even if it is to just see a tidy room for once in 6 weeks. Even though my autistic daughter goes to respite and to her dads, I still have her older brother, which, while he does look after himself, doesn't afford me any time totally to myself to completely relax. Even when he is out I worry that he could get in bother

[MelowMeldrew]

We're getting the meltdowns and erratic behaviour increases too, currently he enjoys turning every tap in the house on at all hours of the day and night running us ragged, he cannot be diverted ! He's also discoverd throwing the post away is a new pastime too, and throwing stones at the neighbours constantly and they aren't amused !, and, is destroying his gameboys when the he hit's a difficult spot, and he won't play with anything else. So far in the last 12 months he's written off 6 of the 50 quid variety, (and 2 of the 100 quid variety in the last 9 weeks). Buying him 2 new game games for the holidays, (He only wants to play one all the time), resulted in him throwing 80 quids worth out the door. Oh, and he likes hiding all our house keys now as well

[Kazzen161]

>>Does anyone else entertain these fantastical thoughts of escape ?

 

 

Yes - I imagine getting into the car and just driving off!

 

Feel better at the moment, cos had a lie-in, had a bath and washed my hair today while the kids were at their Dad's. It's bad when washing your hair and having a bath is a luxury!

 

Karen

[MelowMeldrew]

I must be weird ! Despite everything I wouldn't change him for the world, (I would like a day off though and not think I was selfish for thinking it)

[michbooth]

Well, reading about your problems has sort of made me feel better about things as I realise that I am not alone.

 

I also have no extended family help at all and my husband is away a lot of the time. I have found the holidays so far an absolute ordeal!! My AS/ADHD 7 year old son has been his worst ever. I have been unable to go out with him at all as when I did try he was extremely ragey and agressive. I would consider him to be a danger to others when he is in that state and I am reduced to a snivelling wreck. When we are at home he is no better and is very hyperactive and constantly demanding things.

 

Having tried the GF/CF diet and fish oils and recently took him to a chiropractor to see if that helped I am now thinking that he may need medication. We await a further report from the Psychiatrist. He is due to start Junior school in September so I am a bag of nerves worrying about how this will affect him.

 

Well, enough of my moaning - it does do you good sometimes though. Just to let you all know that I totally sympathise with you and your circumstances. BIG hug to everyone <'>

 

Michelle

[Suze]

....my head feels like it,s gonna pop! today .... .Have been the queen of play doh, picnics in the garden, hide and seek, play in the tent, play in the paddling pool, and drive mum up the wall.Today I,m done in and eldest (asd) is full of don,t speak don,t talk don,t come near me , very hard as middle sister is relishing winding him up.Sick of being the referee.Need to hide in the cupboard for a while.OOH!...perhaps we could turn that into a game ......need a very early night ...please.

[mandyque]

Could you play hide and seek, tell the kids to hide, you tell them you will do the seeking then lock yourself away in a room by yourself with a nice glass of wine and a big slice of cake

[mandyque]

Yet another major meltdown today My arms are so sore with her scratching I feel totally rotten now

[KarenT]

Our holiday bubble has burst too. Things had been going incredibly well until last Thursday when I took James to stay with a friend in Wales for a few days. While there he behaved like one of God's own cherry-cheeked angels but had turned back into Beelzebub by the time we reached Warrington on the way home...

 

Since then it's been screaming, yelling, violence and aggression throughout. Demanding and defiant. I can't get him to the table to eat (again) and he's talking to everyone like they're something he's trodden in. He smashed his plate on Tuesday because the sausages weren't right, bit me on the backside and walloped his dad over the head (twice) with a plastic shield. Worst of all, he almost drowned himself yesterday morning. He'd got out of the bath and I wrapped him in a towel around his shoulders and tucked in at the back - he won't dry himself so I do this so that he can dry in the towel. As an experiment he decided to see how far he could tip himself into the bath and in he went, head first, but because his arms were pinned to his side by the towel he couldn't free himself. It was only a matter of luck that I hadn't left the room because I've always considered that once he was out of the water he was safe. A very narrow escape. Still, it's something to tell the DLA appeal when the insist that he's not a danger to himself or others.

 

Karen

x

[Lesley]

In the middle of my respite week & have had to sit with my leg up for 3 days due to 2 humungous allergic reactions to insect bites on my leg!

 

Had a call from my dad who has got J for a week - sounds like things were going well until my dad didn't realise that when I told him J's toilet skills were awful I MEANT IT!

Apparently he relieved himself up a wall in Sainsbury's yesterday (yes - inside)......

 

L

xxx

[madmooch]

My son is 4 & severe autism and today i feel like strangling him!

The guinea pig has been pushed off his unit, luckily he's not hurt, but there's wood shavings from one end of the house to the other he also turns all the taps on and lights and whenever i try to put something away he drags it out, empties all his toys allover the floor and tips his toy unit over he's puuled all of his daddy's shoes out of the wardrobe and now he's at his daddy's aftershave and he's only been up since 8.30.

I feel like crying

 

Clare

[Suze]

<'> <'> , hugs Clare I guess some days are meant to be really sh*t, so you can tell when your having a good one. My little poppet is acting like he,s had one 4 -pack to many , swearing and behaving like a bit of an idiot,throwing stuff, trashing his room and throwing water everywhere.Very hyper today......worn out .

[lil_me]

My hoovers just had a meltdown after the NT 4 year old split loads of polystyrene all over the place, was spitting more out than it sucked up room was like a dust storm, time for a new Noo Noo me thinks

[Lesley]

Oh lil me I can really relate to that

I called it a day on my old vac after my son decided to be arty (so of course I encouraged him - imagination & all that) and we got the glue & glitter out one day. Of course the imagination lasted only 5 mins before we had meltdown & glitter all over the floor.

After an hour of the vac just moving the glitter around the room no matter how heavy handed I tried to be I ran to my computer & immediately bought a dyson called 'animal' at Tescos online and it made me feel soooooooo much better

 

L

xxx

[nellie]

I love my animal ....the dysons not bad either

 

Nellie xx

[Lesley]

Nellie -

 

I waked into that - Good answer!

 

So nice to hear spontaneous jokes

Neither sponteneity nor jokes happen in our house

 

Thanks for putting a smile on my face this afternoon!!!

 

L

x

[Suze]

Do you know, I love my dyson too , never thought I,d fall foul of such an obsession (my ASD son,s first obsession at the tender age of 8mnths was the vaccum cleaner! ) ........now it always amazes me....I empty the thing ......then do a bit of hoovering.....then it,s full again ....where does all the muck come from ......sorry I,ve gone off thread again .

[Guest flutter]

well we were doin ok

till the bully came back to visit ( she used to live down street)

i in the end told her off,

so am waiting for mother to appear on doorstep to have a go

or if she does her other trick , social services 2morw

i wants a new planet

Cx

[mandyque]

Sorry I'm whinging again She kept attacking kids at soft play this morning then has been in my face constantly since. Starting to wonder whether staying at her fathers house is unsettling her, I feel great after a couple of nights' break, then she comes home and behaves awfully.

 

Is anyone elses kid so anti social? She just wants to be away from everyone, doesn't want to play with kids even if they try to play with her, she just pushes them and kicks and nips It's the only chance of company I get too when we go to these special needs sessions, otherwise I'm at home alone feeling lonely.