Things being so tough

[dmtam]

Hiya how does everybody cope with things being so tough, we have 3 with aspergers/adhd out of our 5 boys, they went to a youth group and got barred last week as set all the fire alarms off , on the way back we had to beg to be allowed on the train as they said we couldnt control them, we cant take them anywhere, cahms have given up, the social worker got suspended so we dont have one anymore as she sent us on a course not suitable for the kids needs and put them in danger, we took action but now have no support.

they are on concerta 36 mg and an 18 mg but after 5/6pm it doesnt touch the sides, meletonin doesnt seem to have any effect, cahms offered us resperidone gave us the script but have since told us not to give it as they never approved it with the paed and he needs a blood test first.

everythings a joke just when we think getting somewhere it backfires again.

its so draining we got refused transport for schooling since sept so we have 4 out of the 5 school runs to do each day, 3 goto a school only 10 mins away, we dont drive so walk it but 2nd son goes to one 40 mins away so we spend all days doing school runs and cleaning up.

sorry to moan just wondered how others cope with it all

thanks x

[JsMum]

I have one asd/adhd boy and I get exhausted drained its hard with just one, never mind 5 boys and 3 on the spectrum

wow hats to you for coping this long, I would contact NAS and Contact a family who give great advise on having your childrens needs assessed and reguarding transport.

 

My sons statement includes Transport but before that I had transport under exceptional circumstances, it was funded because otherwise he wouldnt of been able to attend school without great distress on the family and contributed to medical needs.

 

I am going throw a process at the moment for a Core assessment, have you looked at having one done, if so how long ago and what support could be offered.

 

Its clear you desprately need respite or a short break, now the social club have also banned the children this will increase thier isolation and prevent any oportunites on learning to control thier behaviours.

 

So at the core assessment if you go for one ensure that you request spersific needs such as social and recreational provisions that meet their needs.

 

I struggle too, so your not on your own.

 

JsMumxx

 

[dmtam]

I have one asd/adhd boy and I get exhausted drained its hard with just one, never mind 5 boys and 3 on the spectrum

wow hats to you for coping this long, I would contact NAS and Contact a family who give great advise on having your childrens needs assessed and reguarding transport.

 

My sons statement includes Transport but before that I had transport under exceptional circumstances, it was funded because otherwise he wouldnt of been able to attend school without great distress on the family and contributed to medical needs.

 

I am going throw a process at the moment for a Core assessment, have you looked at having one done, if so how long ago and what support could be offered.

 

Its clear you desprately need respite or a short break, now the social club have also banned the children this will increase thier isolation and prevent any oportunites on learning to control thier behaviours.

 

So at the core assessment if you go for one ensure that you request spersific needs such as social and recreational provisions that meet their needs.

 

I struggle too, so your not on your own.

 

JsMumxx

 

 

Hiya thanks for replying I'm not sure what a core assesment is if honest

I have 1 statmented , 1 I have been told is to bright doesn't qualify, he is top in school work but talks to anybody, wanders off no danger sence,

No stranger danger , and 1 who is only just been assessed. Son no 2 who doesn't get transport we keep being told should go to our nearest school, I wouldn't put the dog in there

That rough , he self harms and to take him out were settled to put him in there would kill him, I have explained this but nobody intrested

I have heard of contact a family but never spoken to them, so I'll give that a go,

Thanks again x

[justine1]

Hi and welcome to the group.

I have one son with AS and he is six and I have another with suspected ASD,not sure where on the spectrum on waiting list for an assesment.I also have two other boys,so I have four altogether.It really does sound like things are wearing you down a bit.I would say you need to speak to them again about the transport because I know school runs are really hard and take up a good portion of the day if you going to many different schools.

 

Also I dont know if you do this already but it is extremely important to have a daily plan up on a wall where everyone can see it,prehaps the kitchen?I used to use card but now in the process of getting a whiteboard,they are not that expensive.I was very disorganised until two years ago,and I paid the price because Sam would run riot without a proper routine.It may be good to add pictures,for Sam its easier to understand visual commands/explanations.

 

I also read your other post,I would recommend getting a lock put on the cupboard or maybe even getting a small locker,I know Argos sells them.Then you can store sugar foods away and other "junk food" prehaps use a reward once a week.I know your son is 13 but maybe a reward chart maybe worth a shot,consistency is the key though.Another member suggested getting a jar and marbles and when he has a wash or brushes his teeth he puts the marble in the jar,then when he has for example 20 marbles he can have a treat,a magazine of something he likes,trading cards?Something inexpensive,I get my son something every friday if he has had a good week at school I just get something from the 99p store,he gets so excited.

 

Also social stories are very good way of explaining right from wrong and be sure again to use pictures,try and do it at a quiet time if possible.

 

I think you come to the right place I get lots of very helpful advice.

[got the tshirt]

You must be exhausted ! I have 2 girls at home and eldest comes round regularly with grandaughter. It gets fairly hectic when we are all together but it's not every day. Would definatly go for the routine chart and the marble in the jar thing worked really well with Dd1. The only thing I would say is use a plastic cup and balls because jars break and marbles do a lot of damage if/when they get thrown!! Apart from that not much help sorry.

[baranigirl]

Am curently having 2 weeks respite from my aprtner and 4 yr old daughter!

 

DP is awaiting psych referral for AS and I am getting more certain daily that DD3 shows traits of AS too, she can unlock locked cupboards even those locked with a key! She uses any implement she finds to unlock them!

 

She will climb anything with no sense of danger

 

Anyways my respite has come about cos DP father lives in Ireland and they have gone to visit him for 2 weeks

 

Poor you with 3 boys all volatile, no suggestions except as the above as charts / timetables have really made a huge difference here to DP and his explosions, DD3 is too small to grasp the chart thing, but she gets very distressed when her routine is affected, ie she likes 3 bowls of cereal each morning and can't cope if she is told there is only time for one etc she HAS to have three!

[JsMum]

Hiya thanks for replying I'm not sure what a core assesment is if honest

I have 1 statmented , 1 I have been told is to bright doesn't qualify, he is top in school work but talks to anybody, wanders off no danger sence,

No stranger danger , and 1 who is only just been assessed. Son no 2 who doesn't get transport we keep being told should go to our nearest school, I wouldn't put the dog in there

That rough , he self harms and to take him out were settled to put him in there would kill him, I have explained this but nobody intrested

I have heard of contact a family but never spoken to them, so I'll give that a go,

Thanks again x

Hi i have found this link from contact a family.

 

http://www.cafamily.org.uk/pdfs/disabled_c...ns_services.pdf

 

This website maybe out of your area but it details quite well what a Core assessment is.

http://www.newcastle.gov.uk/core.nsf/a/childneedca

 

As for the statement and been told your son wont qualify because he is too bright is incorrect, my son is bright and in a specialist school, as he has severe impairements in other areas of his development.

 

Contact National Autistic Societys educational line who have information on Assessments of SEN and AS.

 

 

Also Contact a Family have further information on Education issues too.

 

http://www.cafamily.org.uk/pdfs/educatio.pdf

 

Its a mindfeild I know but its your childs Rights at the end of the dayx

JsMumxx

 

[smiley1590]

i know your family personal situation different to mine but .....i have AS,dyspraxia ,mental health probs and my twin brother got different SEN he is deafblind and sometimes my parents find it hard with both of us at home supporting trying to find middleground without gettting muddled confused,frustrated or tired my mum also has serious health problems everyone that hears of our family history reckons my parents should right an SEN book!!! be interesting anyways!!! certainly a special challenge daily kkeeps parents on their toes that's for sure i know mentall exhausting and draining wearing and also demanding on family relationships are put under extreme pressure and strain! hard to deal and cope with!!!

 

you not entitled to respite care??? or NAS support workers?

 

not any local support group for spectrum disorders for parents such as A.D.H.D or A.S???

 

not being funny your family sounds like the jacksons ( AS luke family) unit

 

http://www.jacquijackson.com/books/multicolouredmayhem.html

http://www.bbc.co.uk/drama/magnificent7/

 

 

good luck

take care

XKLX

[Sally44]

I would also add that it is not true that a child can be too bright to have a Statement. A Statement is for SEN and those can include all the behaviours associated with ADHD and the professional input they need. A Statement also means that you are able to get a place at a special school or independen one if the LEA cannot meet their needs.

So your child may need input from EP and SALT and OT due to sensory issues, impulsiveness, emotional regulartion etc. He may need teaching in smaller groups, or need frequent breaks to let off steam etc etc. That is nothing to do with academic achievement.

Also speak with www.IPSEA.org as well.

 

The school placement should be able to meet their needs, and if they have a Statement the LEA should fund transport. If the LEA are refusing because they say that the child can be at a more local school, then you need to prove that that school cannot meet his needs. His current school should be able to help you with that.

 

But it is a long hard slog to get three Statements.

 

Also social services should be assessing each of the boys and you as carers. You could get direct payments to help with providing a sitting service, or respite etc. Again this is something you usually have to really push for.

[dmtam]

Thanks my eldest has a statment , my ds2 is the one who won't give one too, he goes learning support unit in school he is in

My 5yr old is under sen in school and coping, the 3yr old is whole new ball game as cp got a risk assessment on weds in view to starting nursey

Eldest is in special school others mainstream.

We don't get any help at present due to social worker issues, we took action got her suspended she came back and told us still our social worker and they wouldn't change due to short staff, she put the boys in danger

So we can't trust her, she sent me on a course not suitable for the boys needs and ds2 tryed to suffercate Ds1

Now and again we used to get few days in holidays but now they can't cope nobody got back in touch

We are a very complicated family but we never knew this would happen, had genetics after the loss of our only daughter 10 yrs ago and got told all clear

Now last month been told it is genetic and all 5 boys will have some form asd/adhd

Luckily ds 3 is mild and little one sadly his cp masks it quite a bit but only age will tell

 

We have never asked for help as always coped so don't really know what's out there, social workers are a no go though as we can't trust her

Cahms have said can't help , paed we only see twice a year

Eldest doesn't have speech therapy or anything anymore , pyshio goes the nursery ect

Awaiting speech for 2 on waiting list been a year now

Thanks

[Sally44]

I think with so much going on you need to make a list and prioritise which you will attack first.

 

If the eldest is in a special school then is he getting help in the area of behaviour, social skills, life skills etc?

 

For the others in mainstream, if you ask for an assessment towards a Statement the LEA has to respond. You don't need the school to agree, you can request it yourself. So the LEA will either agree to assess or refuse. If they refuse you can appeal. Many LEAs refuse as a matter of course to see which parents bother to appeal. When the LEA agrees to assess they have to ask all professionals to produce reports. In that way the SALT must see him as part of the assessment process - that might cut out your waiting for a SALT assessment. If the LEA then agrees to produce a Statement you need to ensure the wording is as per the Code of Practice ie. it specifies all needs in section 2 and in section 3 it states how each individual need will be met in school with provision quantified and specified in terms of staffing provision, professional input and quantified in terms of hours eg. 6 hours direct SALT therapy per term.

 

Now what do you do out of school and regarding respite. I think it might be useful to speak with IPSEA.org and NAS.org or any ADHD organisation and ask them what support is available. Do you have Umbrella services in your area? You might be eligible for someone to help. But the best way forward might be with direct payments. With that money you can employ someone yourself to help with the children so that they can either sit with one of them whilst you take another one out, or who would come with you with the sole responsibility for that one child. Because it sounds like it is the times when you are all together and trying to go out and do things that it is impossible.

 

The only other route might be a residential school. But they are not easy to get a place.

[dmtam]

I think with so much going on you need to make a list and prioritise which you will attack first.

 

If the eldest is in a special school then is he getting help in the area of behaviour, social skills, life skills etc?

 

For the others in mainstream, if you ask for an assessment towards a Statement the LEA has to respond. You don't need the school to agree, you can request it yourself. So the LEA will either agree to assess or refuse. If they refuse you can appeal. Many LEAs refuse as a matter of course to see which parents bother to appeal. When the LEA agrees to assess they have to ask all professionals to produce reports. In that way the SALT must see him as part of the assessment process - that might cut out your waiting for a SALT assessment. If the LEA then agrees to produce a Statement you need to ensure the wording is as per the Code of Practice ie. it specifies all needs in section 2 and in section 3 it states how each individual need will be met in school with provision quantified and specified in terms of staffing provision, professional input and quantified in terms of hours eg. 6 hours direct SALT therapy per term.

 

Now what do you do out of school and regarding respite. I think it might be useful to speak with IPSEA.org and NAS.org or any ADHD organisation and ask them what support is available. Do you have Umbrella services in your area? You might be eligible for someone to help. But the best way forward might be with direct payments. With that money you can employ someone yourself to help with the children so that they can either sit with one of them whilst you take another one out, or who would come with you with the sole responsibility for that one child. Because it sounds like it is the times when you are all together and trying to go out and do things that it is impossible.

 

The only other route might be a residential school. But they are not easy to get a place.

 

 

Hiya thanks again everybody, sorry not been done has schooling issues with eldest, quick to the point we are going through the process to change schools for him as current one is not meeting his needs.

I also have a youth group on friday with all the boys run by DAISY? the charity who do family sessions for allboys to attend , we have just finished the FAST project with my sons school ds2 and loved it and the teachers were great, I saw the diffecrence too , school is between 8.30am and 2pm when my sons meds have kicked in and he is calm, last night we met at 6pm and for the 1st time the school saw what we deal with on a daily basis, ds2 was high as a kite , the youngest was walking and fell twice and was a hard night juggling the boys as we do. the school even admitted they had never seen ds2 like this. they are already in support for our transport but even more so now .

Ds2 goes past it his eyes seem to glaze over and he seems vacant but is wild with it , theres no telling him off, you just have to hold him and quieten him down which can take time , school now have seen this which i think will help us.

 

I have taken note of evberything everybody has said and really apprecaite it.

thanks again

 

 

[JsMum]

I would defo look at having a core assessment done, it identifys all your family household and your social services can not refuse to do one, they certainly cant use high IQ thats for sure as an excuse not to carry out a core assessment, this is different to a CAF too as they are usually done throw school.

 

The assessment can identify services needed such as regular respite care, sessional support workers, 1-1 support worker for social activities that are trained in special needs children, day centres, transport, financial support and referal for Benefits and welfare rights so there is a lot they can do, its just that social services tell parents they dont meet criteria when its not about that, its about the family and childs NEEDS.

 

As reguarding restrianing your son we are using multi sensory aroaches, such as weighted blankets, sensory room, we are now looking into assessment for something similair to this.

 

My son is now too big and strong to restrain soley.

 

http://www.safespaces.co.uk/safespace/

 

Anyway hope that you get some very needed support soonx

 

JsMumxx

 

Edited March 25, 2010 by JsMum