Still wondering where we fit...

[szxmum]

Hello again everyone,

 

Haven't posted in a long while - I hope everyone is keeping well.

 

Just a quick recap of our story - ds (17) was diagnosed five months ago with AS after years of struggling in mainstream secondary school and developing mental health problems. He dropped out of sixth form and was awarded medium rate DLA for care, low rate for mobility. I left my job and was awarded carer's allowance.

 

Since my last post, I have joined two local parent support groups and have investigated every possible source of local support that is applicable to my son. To give my son credit, he has tried these options and taster sessions but cannot seem to find his niche in life.

 

We have passed "control" over to him, encouraged him that no-one is going to force him to do anything that he does not want to - this approach is working in that his confidence to try new things is returning and we have not seen a return of the severe anxiety related mental health problems that plagued his school life. He still has a germ phobia and low-level OCD but compared to what we were coping with, this is manageable.

 

The support groups in our area focus on high level physical disability, learning disabilities and low functioning autism. He has tried them but with the best will in the world, they are not appropriate for ds - I cannot find anyone else like him in our area. He is high functioning in that he is very intelligent but he is also highly autistic in that his social skills are minimal. I find him very childlike - his social development seems to have stalled at that of a twelve year old.

 

He now has a social worker who is also struggling with how best to support him - she agrees that the support in our area is not appropriate for him and the only other thing on offer is a return to mainstream school or college with a support worker. This is far too early days for ds - he has only just escaped the source of his "torture" (his words) and a support worker would just be yet another reason for him to be ridiculed and made to feel different.

 

So I feel isolated, I feel he is unique (but my head says we can't be the only family in this predicament), I feel exhausted trying to access support that is NOT out there. I know what ds needs / would like - he wants to be part of a small group (4-6) of people like him who can continue with their education - so simple but it's pink-flying pig land.

 

It feels like, here's your diagnosis, we don't have the support you need, these are the only choices you have, sorry, you are on your own - aarrrggghhhh. The social worked has also told me that ds will not be classed as having needs that social services are required to meet, wants yes but not needs - he is too high functioning, we have adjusted and are coping well as a family, there is no crisis which warrants intervention. So we have to go into crisis and the solution they would provide then would be to take my son into care - that's really going to help us - aarrrgghhhh. I feel like I am my son's only advocate and I am trying to fix an "unfixable" situation.

 

Does this ring bells with anyone out there? How did you move forward? Where did you start to build a new life for yourselves? How did you come to terms with it? From full-time employment, I am now at home, with no money and come with attached 17 year old son who hates social situations. Sorry if that last bit feels like self-pity but I am struggling to see my way forward in all this.

 

Any thoughts or observations welcome, szxmumxxx

Edited October 24, 2009 by szxmum

[jb1964]

Hi Szxmum,

 

Can't offer any advice but just wanted to say we're at the same point with our 16 yr old. She's actually started College in Sept - but has only been for 6 days over these past few weeks and is struggling. We have no support CAMHS have been totally useless this past year and are now ready to discharge/transfer because of her age - they have suggested social services but I really don't want to go down that route.

 

It is just soul destroying to have to keep fighting when you're knocked back at each hurdle.

 

Take care,

Jb x

[JsMum]

Hi My son is 12 and also high functioning autistic, with comorbids and additional mental health disorders, like you we too have been fobbed off from one service to another because one service was inadequate to support us and another service aparently J didnt meet their criteria because he is highly intelligence even though that has nothing at all to do with his high level needs, I fought on and have requested a Reassessment of his needs and I too have requested a carers assessments as we need to fund specialist provisions, I was told the same as you and I have requested that there reasons for refusal be put in writing so I can appeal and then go throw the process of complaint, they have not done this yet, after contacting NAS and CAF and MENCAP I have since had an assessment for a solisitor to look at community laws as my sons NEEDS are not been met, your service should go by NEEDS and they can not use excuses as the ones they have given, you need to get them to put it in writing so you can APPEAL and COMPLAIN, contact a family and NAS have booklets on the procedures and Community Legal Advice put me intouch with a solisitor.

 

Your son has NEEDs in Social, Communication, Mental, Emotional and Behavioural and requires services and provisions.

 

Ask for a reassessment of his needs and also a Carers Assessment.

 

Your son should have a detailed 52 week care plan of all the services and provisions he accesses to meet his NEEDS.

 

Basically your council can not use his intelligence as a way of not meeting his needs because he does have needs as he has impaired Social, Communication, Mental, Behavioural and emotional needs.

 

No matter how much that costs or where the services come from if he is assessed as requiring services and provisions for his needs then they have to meet those needs.

 

Contact

 

NAS

Contact A family

MENCAP

 

Good Luck, we are ongoing with our situation but already it is making a difference, he has support throw his half term holiday something that didnt happen in the summer holiday were I did it all on my own 24-7 without a break.

 

Something I cant do ever again as it really caused great distress emotionally and mentally to the both of us.

 

JsMumxx

 

 

 

Edited October 24, 2009 by JsMum

[Cat]

Hello again everyone,

 

Haven't posted in a long while - I hope everyone is keeping well.

 

Just a quick recap of our story - ds (17) was diagnosed five months ago with AS after years of struggling in mainstream secondary school and developing mental health problems. He dropped out of sixth form and was awarded medium rate DLA for care, low rate for mobility. I left my job and was awarded carer's allowance.

 

Since my last post, I have joined two local parent support groups and have investigated every possible source of local support that is applicable to my son. To give my son credit, he has tried these options and taster sessions but cannot seem to find his niche in life.

 

We have passed "control" over to him, encouraged him that no-one is going to force him to do anything that he does not want to - this approach is working in that his confidence to try new things is returning and we have not seen a return of the severe anxiety related mental health problems that plagued his school life. He still has a germ phobia and low-level OCD but compared to what we were coping with, this is manageable.

 

The support groups in our area focus on high level physical disability, learning disabilities and low functioning autism. He has tried them but with the best will in the world, they are not appropriate for ds - I cannot find anyone else like him in our area. He is high functioning in that he is very intelligent but he is also highly autistic in that his social skills are minimal. I find him very childlike - his social development seems to have stalled at that of a twelve year old.

 

He now has a social worker who is also struggling with how best to support him - she agrees that the support in our area is not appropriate for him and the only other thing on offer is a return to mainstream school or college with a support worker. This is far too early days for ds - he has only just escaped the source of his "torture" (his words) and a support worker would just be yet another reason for him to be ridiculed and made to feel different.

 

So I feel isolated, I feel he is unique (but my head says we can't be the only family in this predicament), I feel exhausted trying to access support that is NOT out there. I know what ds needs / would like - he wants to be part of a small group (4-6) of people like him who can continue with their education - so simple but it's pink-flying pig land.

 

It feels like, here's your diagnosis, we don't have the support you need, these are the only choices you have, sorry, you are on your own - aarrrggghhhh. The social worked has also told me that ds will not be classed as having needs that social services are required to meet, wants yes but not needs - he is too high functioning, we have adjusted and are coping well as a family, there is no crisis which warrants intervention. So we have to go into crisis and the solution they would provide then would be to take my son into care - that's really going to help us - aarrrgghhhh. I feel like I am my son's only advocate and I am trying to fix an "unfixable" situation.

 

Does this ring bells with anyone out there? How did you move forward? Where did you start to build a new life for yourselves? How did you come to terms with it? From full-time employment, I am now at home, with no money and come with attached 17 year old son who hates social situations. Sorry if that last bit feels like self-pity but I am struggling to see my way forward in all this.

 

Any thoughts or observations welcome, szxmumxxx

 

Welcome to the world that those of us who have children 16 and over often inhabit <'> My own son who is now 22 years old has seen no one from the age of 16 and even though he also has a serious visual impairment he does not have a SW either. We have really had to get on with things alone. My son is probably gifted and talented academically but he has never been able to find that out for sure because he was never able to attend a mainstream college and although we have ESPA sitting on our doorstep because he had never had a statement he could not attend there either. However I am pretty sure that ESPA admit pupils now without a statement.

 

What would your son think about distance learning? It’s not ideal but there are lots of subjects on offer and it is at least a way for your son to continue learning is that is what he wants to do. Here is a link that will at least give you an idea as to what is on offer http://www.distance-learning-centre.co.uk/ but there are lots of other places that offer distance learning. There is also the OU they have quite a lot on offer too http://www3.open.ac.uk/about/

 

Has your son managed to make any on-line friends? It took my son a while but he now posts on some groups and forums and actually has his own you tube channel where he has become on-line friends with several other teens and adults who also have AS. It really has helped our son a great deal and he now also talks to his friends via skpe or whatever it is called.

 

The emotional and chronological age of young people with autism rarely match up. Even though my son is 22 emotionally he is nowhere near that age but he is slowly getting there.

 

I have just finished helping to draft the National Autism Strategy for Adults, goodness only knows how much of it the DOH will actually write up – but it is now well documented that there is nothing out that for the majority of young people aged 16 and over who have a diagnosis of autism. We are hoping that now that the Autism Bill has just been passed and will some become an Act that things will change. But I still think that it is going to take autistic adults and parents and carers to affect change in their own back yards, which is wrong but if we can make this happen then it is something that I personally will do.

 

Cat

Edited October 24, 2009 by Cat

[Sally44]

My son is much younger, age 8 - but we seem to be in a similar situation ie. services available are for more severe children, and other supports that only last a few weeks to enable a child to 'access' a certain club etc are not enough due to his language difficulties. I am in the process of getting SS involved, as at his age I think I would be able to access something like an adult or mentor to accompany him to places he wishes to go. But when he is older, I am sure he will be considered 'too able'.

I have an older sister with learning disabilities, and one of our constant frustrations that it is always the 'crisis management' approach, ie. nothing is put into place until there is a disaster and then they go in to mop up the mess. But they won't do anything beforehand or be proactive in any way, shape or form.

Would you son be able to access Direct Payments? If so he would be able to pay for someone to accompany him if he wanted to go the cinema or to somewhere to eat etc.

There are some adult support groups for more able adults. There is one in our area for those with AS their families etc. But that seems to be geared towards adult AS who are working with families - that might not be the criteria, as there are probably many single adults as well. So there is stuff out there.

You might find yourself in the situation where you have to start something yourself. For example to meet once a fortnight with an aim to socialising and making contact with other similar aged individuals who could maybe go to certain things together??

Regarding the education environment. When and if that becomes an area of interest to your son, it might be worth approaching colleages that do have others with AS and seeing if they already have any kind of group meeting. Your son might be able to go to those groups before he even goes to that particular college.

It is very frustrating because there is no infastructure, no networking, no contacts. Every family does end up feeling very isolated, when in fact, with a diagnosis rate of around 1+ in 100 (for adults and children), there must be people all around us every day with the same kinds of difficulties. But the more able the person is the more 'invisible' they appear to be.

 

[szxmum]

Thank you all for your replies

 

I hear what you are saying JsMum and yes that is how it "should" be - but believe me, in our area, post-16 unless you are in crisis or have severe physical and learning disabilities there is no support out there and no "need" for that support to be provided. Yes - it sucks but you are basically left to get on with it on your own.

 

Where we are at the moment with ds is "trying things on for size" and because the options open to us are either mainstream (large groups with support) or small special needs groups we are "bombing out" time and time again. I will give ds credit though, he is in a much healthier place emotionally and has found the confidence to try special olympics, sailing for the disabled, a community business venture scheme for the disabled, a day-time walking and activity group (mainly retired people) and an explorer scouts group. But... we are failing again and again because he wants to be able to interact with small groups of people who are "like him".

 

Our local NAS is starting a youth group for 16+ so this will be something to try once it's established next year. The good thing is this will have trained youth workers who will facilitate conversation and interaction so I'm keeping my fingers crossed.

 

I guess the point of my post is the realisation that I have a 17 year old son with AS to care for full-time. He is now classed as a vulnerable adult and I have a responsibility to him, to care for his physical and mental well-being. I think it is the realisation that this is a chronic condition that has hit me. There is no "magic bullet" to fix this. The "normal" developmental timescale no longer applies, at 17 he is not ready for further education or employment BUT society does not provide anything else for him as he does not fit special needs groups that are out there.

 

I am trying to wrap my brain around this, trying to accept our new reality and trying to create a new life for us but we don't fit anywhere. I hate being in the house all day, every day. During the day there are mother and tots groups, there are retirement groups and there are disabled groups none of which we fit. Ds doesn't have the confidence to try voluntary work but I am holding onto that hope for the future.

 

I can't leave ds to his own devices in the day (we tried that) because then we end up with a depressed, suicidal teenager on our hands. Round and round in my circle I go.

 

I need inspiration, I need a new direction for me, something to spur me on and get my brain functioning again, something to achieve, I need people contact and I'm stuck - can't see the wood for the trees.

 

Sorry for the rant - just deperate to make contact with anyone who is stuck in the same mud,

 

szxmumxxx

 

Hi Sally - just read your post, thanks as always. We have tried the adult group route but the adults are just too adult if you see what I mean - maybe a route for later years. Ds just wants peer contact so I am keeping everything crossed for this new NAS youth club.

Edited October 24, 2009 by szxmum

[lisac]

.

 

So I feel isolated, I feel he is unique (but my head says we can't be the only family in this predicament), I feel exhausted trying to access support that is NOT out there. I know what ds needs / would like - he wants to be part of a small group (4-6) of people like him who can continue with their education - so simple but it's pink-flying pig land.

 

szxmum, this is exactly what I have always been looking for ,I dont think it exists, not to my knowledge any way. Infact I just emailed the NAS and Mencap yesterday asking if there is anything like this at all in the UK. Ive always thought he cant be the only one who would greatly benefit from some sort of on-going- structured- educational learning, delivered by autism experts in a small group setting. My son has quite severe autism with very little social awareness and has challenging behaviours yet can multiply any prime number given and can read and write any thing. Day centres are not for him as he is bright and energetic, so there is really no where for him to go. At the moment we have a direct payments package from social services where i employ someone to taje him out and about , swimming etc, it is not ideal, but the best that social services could come up with, if i get any info i'll let you know, x

 

[Sally44]

Can you access Direct Payments through Social Services?

Even if you are not able to now because he is living at home. If that situation were to change he part of his difficulties are planning, organising housekeeping, money, or shopping, then I think he would be able to get direct payments and pay for a carer to come on certain days or to oversee certain things.