School's back !

[MelowMeldrew]

I'm probably the only one (Not !), who is entirely relieved their child is going back to school, my lad is 15 and I have had the hardest 2 months of his entire life this holiday, and worried I wouldn't cope with such a long holiday again on the terms I have had this time. I've got stress headaches and head pains related to it all. I love my son to bits, I am just about on my knees now though ! I have everything including NEXT door's kitchen sink thrown at me this year. His appetite has doubled overnight, and he is grazing food 24/7 (why ?), his street behaviour completely out of control, and I was cautioned by the police last week to 'restrain' him in case he injures someone running about. I said have YOU tried to hold on to a 15yr old teen bigger than you all the time ? His OCD's (He has 3 currently), have intensified as well and meltdowns are becoming more common. All this has been on a 24/7 basis and at 2am in the morning 5am he is hyper and running about, the doc just said he is physically OK and then...left ! after he almost collapsed with the sheer exhaustion of running around for 3 hours solid ! His mum has retreated from interaction and just cannot cope with it and leaves it to me. I have consulted the child psychiatric team locally, they are making me wait months and asking for reports and the delays are not helping at all, I have campaigned constantly since my child was born and still the agencies will not talk to each other. I might have to consider medication despite a total NO from me up until now, I don't want a zombie for a son, and would look on that as a parental failure on my part. Who would I ask about it ? the GP said not his dept ?!?

[Paula]

I sympathise i realy do....hey imagine me my son 16 left school this year ive been stuck with him home since april hes driveing me bloomeing insane..........how i keep a lid on it i dont know.......thankgod my son starts a voluntary work project this thursday with mencap ill be shut of him for the whole day for the first time in months...........whats the betting ill miss the paine........

 

When my son hit 15 his appitite went through the ceiling and he also went from being 5 ft 10 to over six foot 2 no wonder he ate so much....hed eat all day and still be complaining........

 

Also if it kicked of i was unable also to anything about it.......oh you can attempt verbally to sort the situation but it doesnt always work......id to forget trying to do it physically no a cat in hells chance hes too big too strong towering above both me and his dad........

 

 

Today my son has also been hyped up hes been all weid and daft talking none stop .......id to take him to the gps for a check up and he was as daft as a brush tlaking away wildley makeing no sence he even started to rob pens of the dr and refused to hand back a note pad..god knows what had got into him....afterwards he said he was sorry for being silly and didnt know why hed been so........

 

 

Just before xmas last year wed all sorts of agro with him he ran away from home id to call the coppers out we found him........i was offered risperodone i think it is but i too refused i dont want my son drugged up because i cant cope.thats how i feel.......when he cant cope when hes got a problem with things and says mum i need help then maybe but not before.....i have said to him maybe it might help with concentration ect ect but he says no and i have to respect that.

 

I was refered to some sort of child physcologist bloke over medicateing my son this was done via the gp.......thing is though physcologist bloke just rambled on and on oh he had the fancy letters behind his name or is it in front of it knew all the fancy language but had absolutley no idea what so ever about the day to day life of liveing with an asperger teenager......he aint a bloomeing clue............Just my experiance.......

[JsMum]

Hi MM.

 

What was he like before he broke up from school and what support does he recieve at school, what type of school is he in, and does he have a statement?

 

I have struggled too this summer and that is with respite too, I have realised I can no longer keep up after three or four days, if I do my mental, phsical, pyschological health is severely comprimised.

 

My son was prescribed concerta xl 18months ago, but he refused to take it, he is going throw more assessments including an assessment of medication but the psychiatrist said that if he refuses medication again they may be very little they can do so I am aprehensive also and no parent wants to resort to medication but some children do benefit greatly from it.

 

I would write again to your local cahms/agencies and express that your sons mental health/behaviour is deteriating and you need urgent help, for more info on support for community care contact NAS and Contact a family who will help you throw the process.

 

 

There is no wonder your own health is deteriating.

 

Sympathy, understanding by the bucket load here.

 

JsMumxxx

[MelowMeldrew]

I sympathise i realy do....hey imagine me my son 16 left school this year ive been stuck with him home since april hes driveing me bloomeing insane..........how i keep a lid on it i dont know.......thankgod my son starts a voluntary work project this thursday with mencap ill be shut of him for the whole day for the first time in months...........whats the betting ill miss the paine........

 

When my son hit 15 his appitite went through the ceiling and he also went from being 5 ft 10 to over six foot 2 no wonder he ate so much....hed eat all day and still be complaining........

 

Also if it kicked of i was unable also to anything about it.......oh you can attempt verbally to sort the situation but it doesnt always work......id to forget trying to do it physically no a cat in hells chance hes too big too strong towering above both me and his dad........

 

 

Today my son has also been hyped up hes been all weid and daft talking none stop .......id to take him to the gps for a check up and he was as daft as a brush tlaking away wildley makeing no sence he even started to rob pens of the dr and refused to hand back a note pad..god knows what had got into him....afterwards he said he was sorry for being silly and didnt know why hed been so........

 

 

Just before xmas last year wed all sorts of agro with him he ran away from home id to call the coppers out we found him........i was offered risperodone i think it is but i too refused i dont want my son drugged up because i cant cope.thats how i feel.......when he cant cope when hes got a problem with things and says mum i need help then maybe but not before.....i have said to him maybe it might help with concentration ect ect but he says no and i have to respect that.

 

I was refered to some sort of child physcologist bloke over medicateing my son this was done via the gp.......thing is though physcologist bloke just rambled on and on oh he had the fancy letters behind his name or is it in front of it knew all the fancy language but had absolutley no idea what so ever about the day to day life of liveing with an asperger teenager......he aint a bloomeing clue............Just my experiance.......

 

I'm holding fire at present on the psychiatric team until they actually do something I have no way of seeing if it has a point or not. I'm not put off by titles, if the results are no good I'll soon let them know, life is too short to listen to them rambling on about theory. They asked me "Would you like us to help you understand what autistics do ?" after I finished laughing on the floor, I said "After near 16 years I have got a fair idea thanks !" I KNOW what mine does, what I want to know is how can he and us as parents help ? I don't want a load of bumpf about it, or sit there being told to be 'patient' I said my patience has been pretty good despite considerable pressures, and listening to experts drone on doing nothing practical. I told them if there is no concerted effort to support I am going to be a very real pain his posterior. You have to fight for your kids don't you ? it's a lifetime of fighting really...

 

I'm surprised you are abandoned at 16 with your child ? mine is staying in special school until 19 and then college after, although I am unsure a college is practical, as he resisted reading and writing and communicating at present as well as totally avoiding peers or inclusive aspects, he refuses sport too,just what he will actually DO at college is a mystery. I am watching the LEA to see if it is just a ruse to pull him from special schooling to save money. If it is a choice between special school or college I'd go against college. I'm totally unimpressed with present 'FE support' options. I feel awful I want a break, but we are increasingly needing one if we're honest.

[MelowMeldrew]

Hi MM.

 

What was he like before he broke up from school and what support does he recieve at school, what type of school is he in, and does he have a statement?

 

I have struggled too this summer and that is with respite too, I have realised I can no longer keep up after three or four days, if I do my mental, phsical, pyschological health is severely comprimised.

 

My son was prescribed concerta xl 18months ago, but he refused to take it, he is going throw more assessments including an assessment of medication but the psychiatrist said that if he refuses medication again they may be very little they can do so I am aprehensive also and no parent wants to resort to medication but some children do benefit greatly from it.

 

I would write again to your local cahms/agencies and express that your sons mental health/behaviour is deteriating and you need urgent help, for more info on support for community care contact NAS and Contact a family who will help you throw the process.

 

 

There is no wonder your own health is deteriating.

 

Sympathy, understanding by the bucket load here.

 

JsMumxxx

 

His issues have been deteriorating by degrees a year at least, last summer holidays was a hard time, but this year !!! It's not all bad news some communications and confidence has emerged.....He is in his world more and more now, and likes it. I will see the NAS in 11 days after 8 years trying to involve them. I really do not have much idea what the NAS does to be honest, I've no doubt as its a charity continuity may be a problem and that is an extra worry. I asked for peer support for my son basically, and somewhere he can go to develop a hobby or interest, as he has none at present. I am chicken to ask for respite, I'd fear we would lose him (Silly I know!), but his Mum is not coping well and the reliance totally on me is putting me under pressure as after 15 years I can really do with 5 minutes on my own, or even with his mum if it comes to that lol Without her supporting me it could have been worse. His care is totally consuming and there is little or nil time for anything social or holidays or things others may assume as normality. I'm not even sure what I or Mum would do IF we had respite, it's been so long... what if we like it ? I'd feel awful again... However there are signs he is wanting to do his own thing, it is what teens do after all, it's a matter of us finding out what that is, and hoping it is not total immersion into his own world, or we lost him already.

[call me jaded]

I was writing a lengthy reply yesterday but fell asleep from sheer exhaustion in the middle of it!

 

The short reply is that we found the anticipation of booking DS into something like Activenture for a week once a year is enough to keep me going for the rest of the year. No referral from SS needed, you get to decide when and although we saved up DLA to pay for it originally DPs now do the job.

 

Even going on holiday was 24 hour care in a home from home environment. We were lucky to find a couple of babysitters from the holiday apartments at the top of the road where we went for icecream everyday and had a night out on the last night. Apart from that it was really the same old same old except going to the beach instead of the park every day.

 

We made a decision long ago to try and do normal things as much as possible. Sometimes to do that the effort is enormous but my fear is that we would be completely housebound very swiftly if DS's overwhelming preferences were accommodated and I don't think that would be healthy for me. With holidays we did caravans for years - Haven is fantastic for disability awareness. I would just encourage you to give it a go. I'm sure there's plenty of bargains around. If you qualify for Family Fund they give vouchers for Haven (and Thomas Cook). Again no SS referral needed for FF.

 

Don't be fearful of asking SS for help. They will be amazed that you have coped so far. I took NAS advice to get them involved before transferring to adult services. TBH they haven't made an enormous difference - a couple of hours out is beneficial to my son but barely touches my needs. My own personnal de-stress is to talk about the difficulties with other parents at our parents group and that's how I retain sanity. Not for everyone I grant you. DH doesn't get that at all. He immerses himself in work - barely seen him since we got back, lol.

[MelowMeldrew]

I was writing a lengthy reply yesterday but fell asleep from sheer exhaustion in the middle of it!

 

The short reply is that we found the anticipation of booking DS into something like Activenture for a week once a year is enough to keep me going for the rest of the year. No referral from SS needed, you get to decide when and although we saved up DLA to pay for it originally DPs now do the job.

 

Even going on holiday was 24 hour care in a home from home environment. We were lucky to find a couple of babysitters from the holiday apartments at the top of the road where we went for icecream everyday and had a night out on the last night. Apart from that it was really the same old same old except going to the beach instead of the park every day.

 

We made a decision long ago to try and do normal things as much as possible. Sometimes to do that the effort is enormous but my fear is that we would be completely housebound very swiftly if DS's overwhelming preferences were accommodated and I don't think that would be healthy for me. With holidays we did caravans for years - Haven is fantastic for disability awareness. I would just encourage you to give it a go. I'm sure there's plenty of bargains around. If you qualify for Family Fund they give vouchers for Haven (and Thomas Cook). Again no SS referral needed for FF.

 

Don't be fearful of asking SS for help. They will be amazed that you have coped so far. I took NAS advice to get them involved before transferring to adult services. TBH they haven't made an enormous difference - a couple of hours out is beneficial to my son but barely touches my needs. My own personnal de-stress is to talk about the difficulties with other parents at our parents group and that's how I retain sanity. Not for everyone I grant you. DH doesn't get that at all. He immerses himself in work - barely seen him since we got back, lol.

 

 

We're virtually house bound already have been for years really ! we've never had a baby sitter, hence we don't socialise of an evening either we did do a haven caravan holiday once we were lucky to get through 5 days, he did nothing but run around in circles threw stones at the other caravans and refused to go with us for meals or anything else. NO thing social at all transpired I hardly was able to talk to the people next door. We found SS totally unreliable, indeed of the 6 we had in his 15 years he has met in person only 2 of them. The others left the job lol..... one, 10 days after being assigned to my son, we waited 9 months for another one.... we cannot talk to other parents except like this, my partner would need extensive communication support charities and 'groups' cannot afford to provide. To be honest we're talked out. I feel I know what is needed and know what our limitations are, we have failed to get anyone to stand still long enough to tell them. The only time I can de-stress is when he goes to bed, that is little respite at present either because 5 am he is up and about again running around the house with lights on. He was up at 4.45am today school taxi didn't arrive until 8am, by 10:30am I was falling asleep in the chair. Looks like I am going to sleep the day shift while he stays awake most of the night again. I told his SW we are reaching a limit soon... even I need to sleep even if the lad doesn't.

[Sally44]

I think one of the hardest things to cope with is lack of sleep. Afterall it is a form of torture!

I don't know anything about medication other than what other parents have told me.

Melatonin seems to help alot of children get to sleep and stay asleep. That then leaves you to be able to get a good nights sleep.

As far as I know melatonin is a normal hormone. Maybe others that use it can post about if it has any side effects.

If your child and you are not getting enough sleep you are all going to be suffering. I would go back to the GP or the paediatrician that diagnosed and talk to them about it.

[call me jaded]

Have you asked SS for respite? I thought you'd said you were frightened to ask for it in case you lose him? What are their reasons for not supporting you? There is a constant turnover of SWs here too. I gave up on them and went and found the break we needed. I think I'd still be waiting if I'd left it to them.

 

Years ago I got a friend to bring back some melatonin from the States - you can buy it OTC in health food shops there - and gave it a trial but it made DS very hyper. From what I recall of my research it helps with going to sleep but won't necessarily keep them asleep. As our problem was with staying asleep we were grasping at straws anyway. I don't recall that there is anything that helps to maintain sleep.

 

Hope you manage to catch up on your own sleep soon - there's nothing worse than sleep deprivation.

[MelowMeldrew]

Have you asked SS for respite? I thought you'd said you were frightened to ask for it in case you lose him? What are their reasons for not supporting you? There is a constant turnover of SWs here too. I gave up on them and went and found the break we needed. I think I'd still be waiting if I'd left it to them.

 

Years ago I got a friend to bring back some melatonin from the States - you can buy it OTC in health food shops there - and gave it a trial but it made DS very hyper. From what I recall of my research it helps with going to sleep but won't necessarily keep them asleep. As our problem was with staying asleep we were grasping at straws anyway. I don't recall that there is anything that helps to maintain sleep.

 

Hope you manage to catch up on your own sleep soon - there's nothing worse than sleep deprivation.

 

We're falling asleep in the day now he is back in school lol. SS are a complete waste of space, it's just not worth my time chasing them up except when I want a form signed. Basically they cannot offer what they haven't got. Most I have got I told them about and still had to lobby for it alone. They ask me how he is doing so their records are up to date and to justify their existence, that's about it. I've been trying to link the school with the SS and with the psychiatric support here, and guess who is dragging ? yup SS again ! I gave them the contact of the support team, who wanted feedback from them, and I just got an e-mail asking, 'what is a child psychiatric support team ?' DOH ! He could not have even read the contact form he was sent or noted the address or anything. The issue is unless these no-marks sign forms I am ignored, and nothing proceeds. It smacks of an archaic SS system that died out 18 years ago.... They won't take a parents concern about anything it has to be 'official' I'd just be happy with PROFESSIONAL ! As regards to medication, it was just one means I asked about along with therapeutic support for my son to handle his issues himself if possible, we cannot handle them 24hrs a day.... 3 at the same time we are getting nowhere. OCD's cannot be cured, they can be managed, and I assumed some form of medication initially might be necessary (Not long term), to slow him down enough to basically listen to what is being said to him, the only time he is static is when he is asleep otherwise he is pacing the rooms, running around the streets or in headlong flight everywhere. I am assuming counselling cannot take place unless they can stop him doing this for a while. Maybe they can fit him with bluetooth in his ears and counsel him on the hoof lol..........