3rd son diagnosed

[dmtam]

Hiya we got a diagnosis yesterday for our 3rd son who is 5 and half of aspergers and adhd, we already have a 13yr old with aspergers, adhd, dispraxia and global delay, 12yr oldwith asd and severe adhd self harms and has no stranger danger, and now our 3rd son has been told aspergers and adhd test scores were 18 out of 20

We have 5 sons in total and although our 8yr old has many traits he is not severe enough to diagnose as can concentrate in school and is very bright, also our 3yr old has minor brain damage and cerabal palsy so they dont know if he will have asd or adhd yet we will have to wait and see.

We are being referred to asd pathway and we have got some medication to see if that will try and calm him down a bit 5mg mepheniate (sp) , other boys are on concerta 56mg

 

just wondering if anybody else has such a large family with various needs and what support they have as we dont get any, social worker said cant help us and ceased all contact , we get help once in a while during the holidays with play schemes but nothing for us as a family when it gets hard no body to talk to ect

thanks

[mossgrove]

It is a bit of a postcode lottery I am afraid.

 

We have four children

 

Boy (12) - Aspergers and ASD

 

Boy (10) - ASD

 

Girl (8) - NT

 

Boy (6) - under assessment but probably ADHD

 

We have been quite lucky with support.

 

DLA for twe eldest boys

 

SALT for both boys via their Special Schools

 

Regular meetings with CAMHS

 

In process of arranging counselling for daughter as it isn't an easy household for er to grow up in.

 

Have applied to Social Services for Direct Payments to facilitate care for ASD children while we do things woth the pthers (Going very slowly!)

 

Limited OT input for eldest son but this is proving a struggle as OT service is sevelrely overstretched.

 

Local Authority run playschemes for children with special needs (not just ASD) in the summer.

 

There is a local autistic charity that does organise eventsfor Autistic Children and their families but we have not had much contact with them recently.

 

Simon

 

 

 

 

 

 

 

 

 

 

 

 

[JsMum]

Hiya we got a diagnosis yesterday for our 3rd son who is 5 and half of aspergers and adhd, we already have a 13yr old with aspergers, adhd, dispraxia and global delay, 12yr oldwith asd and severe adhd self harms and has no stranger danger, and now our 3rd son has been told aspergers and adhd test scores were 18 out of 20

We have 5 sons in total and although our 8yr old has many traits he is not severe enough to diagnose as can concentrate in school and is very bright, also our 3yr old has minor brain damage and cerabal palsy so they dont know if he will have asd or adhd yet we will have to wait and see.

We are being referred to asd pathway and we have got some medication to see if that will try and calm him down a bit 5mg mepheniate (sp) , other boys are on concerta 56mg

 

just wondering if anybody else has such a large family with various needs and what support they have as we dont get any, social worker said cant help us and ceased all contact , we get help once in a while during the holidays with play schemes but nothing for us as a family when it gets hard no body to talk to ect

thanks

 

Hi It must still be quite a shock for you no matter how many other children you have who are affected by special needs especially a combination of comorbids, so take it easy.

 

I only have one son, but it is suspected his Father had Aspergers Syndrome, so it is heridetary, well thats what I feel anyway.

 

As for the home support I would contact National Autistic Society who can throw the process, I had to get a letter to say that the social services could not help my son, when we asked for that, they couldnt write it, because they hadnt done a proper assessment, so request a core assessment, this is a detailed assessment that looks at NEEDS not intelligence or other capabilities, but what support that child needs, if after the assessment they still refuse to offer provisions and support ask them to put it in writing, then APPEAL, it then goes to court but not one like where they can take your children off you, but a judicial review, where a judge looks at what your son needs and then instructs that in a care plan.

 

It takes around a year to get throw the process, but it is worth it in the end, we have just gone throw the process and we have recieved much more support, in the beginning they told me the same thing they told you, and we where going into crisis throw the lack of support.

 

 

My advice is that you ring NAS and request legal advice, and the full procedure of community care laws, short breaks and support from your local Authority.

 

It can not be easy with five sons, especially with three with ASD, one with traits and then 1 with cerebal palsy, and ADHD traits, so you should be entitled to some support.

 

Good luckx

 

JsMumx

 

Edited July 23, 2010 by JsMum

[justine1]

Hi

Take your time to "digest" this.Definatly think you need help,I would contact SS and see if they have some suggestions.

 

I got four boys,my eldest 9,is NT but he is gifted,although that sounds like a good thing its difficult because he needs constant stimulation,gets bored and destructive and is very argumentative.

 

My almost 7 year old has an ASD/Aspergers diagnosis.

 

My 4 year old is going for assessment on 2 August.Most likely HFA,he has speech problems and Sensory problems,amoung other things.

 

My youngest is two and is the easiest,he is NT, and so far no problems at all health wise.

 

Please take it easy <'>

[call me jaded]

You wouldn't qualify for services where I live unless the self harm was at a level that the SWT or CAMHS thought he was at risk. Then it would be his needs that would be addressed, not anyone else's.

 

Have you ever had a carer's assessment? Not sure that it ever produces much but I would think that yours is one kind of case where it is a combination of demands on you as the carer that would push you over the threshold for services.

 

I have one child with ASD (see signature) plus three very 'normal' ones. We qualify for services but I don't use them. Between home and school we don't need more, but I wouldn't be saying that if his school wasn't fantastic. The only thing we do is send him to Activenture for 6 nights once a year and he has a ball.

 

Have you looked for voluntary sector services locally?

[dmtam]

Hiya we keep being told nobody can help us, ss have ceased all contact as said cant help but we are struggling

[call me jaded]

Whereabouts are you? Maybe we could help find you a local support group/voluntary sector organisation that can help.

[dmtam]

Hiya we are in Liverpool, paed said will contact asd pathway tea so fingers crossed but we never got anything off them when had our other sons as they went via the school

thanks x

[call me jaded]

Contact a Family have a list of local organisations - they should be able to help you find someone to talk to.

[trekster]

Hiya we are in Liverpool, paed said will contact asd pathway tea so fingers crossed but we never got anything off them when had our other sons as they went via the school

thanks x

 

Liverpool Asperger team? i realise this covers only a few areas. Also the Wirral Autistic Society.