It's all going a bit wrong (and son has Aspergers).

Rummer

I just wondered how things were going?

WantToBeSE

Hi Rummer

Things are pretty much the same. His Anxiety and Depression are getting worse though

He has his psychiatrist appointment next Thursday, when he will be put on meds for this. I hope that he sleeps better, as i am so tired (as usual!).

He is, as usual, not really talking much about how he feels. Although today he has decided that he is going to start a blog I feel its something positive for him to concentrate on.

Rummer

Good to hear from you

Although things seem the same it sounds as if small steps are being made. The blog sounds like a positive idea, maybe a trip to the library to get some books on blogging could be a trip out.

Good to hear that there is not long until his appointment too, if you are going with him then you will have a chance to ask questions about support available and maybe get some suggestions for different strategies to use at home.

I hope you are getting some you time too.

WantToBeSE

I am just posting some of the posts that were on my other thread. I want to keep this as the main thread, so will answer the Qs here.

killmymortgage wrote: »

Not sure what stage you are at, but sounds like you need an Education and Health care plan, if you haven't got one.

You have to apply to your local council to have the assessment and have a care plan written.

They have a statutory duty to do this and there is a legal time frame in which they have to carry out this duty.

This will then put in place support for your child and enable him to access school or be schooled in a different way. This is an involved process but you can have an independent free supporter to guide you through this time.

See here:-
https://www.salford.gov.uk/whatisanehcp.htm

I also suggest that you talk to someone from Autism UK on their helpline, as Aspergers is now seen by some as a form of High functioning autism. http://www.autism.org.uk/


They are a very helpful charity and will be able to give you the much needed advice you deserve about EHC plans, and advice on how to cope day to day.

Just make sure you talk to as many people as you can, including those who are the parents of children with aspergers.

I would also recommend looking on Facebook for the asperger's forums.

Good luck and keep asking and talking to as many people as possible.:D

stephnyc wrote: »

Hi WantToBeSE

I dont have practical advice, just wanted to show you some support

My brother has Aspergers and was diagnosed around the same age. He left school and almost never leaves the house either. However he has said that being accepted by my mum as he is, and being allowed to leave school and stay indoors was the best thing that ever happened to him. That he knows its hard on the people around him, but that being forced to go to school was torture.

I hope you get some help. The assessment will help and he might even qualify for home study.

He is 15. Is he safe at home (even if not particularly clean!)? My brother was also a 'night owl' - getting up well after lunchtime and not sleeping until 3am or later. However he has learned to shower, tidy a bit, and even 'cook' (ok he makes bowls of cereal & sandwiches) - in other words, he can be left for hours and come to no harm.

Start small. Set up a routine. Write it out so he knows whats happening & when. Make sure he eats and washes when you are there. Make sure he is safe when you are not.

It will be ok. Maybe not what you had expected, but ok. You can do this x

deannatrois wrote: »

My 19 year old has aspergers. He had a really tough time in school. But I am afraid I forced him to go.., although we did move 130 miles to find him a school more able to cope with his needs. He was a lot happier there although it wasn't perfect.

He's now in college, just about to leave one course and start another. Once again, hasn't received the help he should have done so I'm finally starting an EHCP for him.

He has felt very isolated, very different and at times has found it difficult to leave the house. But I've persisted with that, and do get him out of the house even when he doesn't really want to. I've taught him to do the washing up. It took years but he now does it as well as I would. He can't tidy up (organising things confuses him totally in spite of being very intelligent) but he can hoover and prepare simple meals. He still goes into meltdown and gets angry at times but I'm lucky, there's always been good channels of communication between us.

And he has a gf! She has aspergers too. This is a new thing so its a major change. He's dealing with it very well.

I think its a case of pick your battles. Expect him to do things. Just one or two things. But always provide support and understanding. I have got my son a specialist social worker who is helping bring some services in (someone for him to talk to as 'respite'). He still doesn't sleep well so there are times I'm boss eyed from lack of sleep.

I did manage to get my son referred to the Bethlehem Royal Behavioural and Genetics Clinic as they help young people with aspergers with coping skills. Could you try something like that?

WantToBeSE

Just an update really.

Yesterday he saw the Psychiatrist for the 1st time. She asked a lot of questions and Diagnosed him as having Social Anxiety, General Anxiety and severe Depression. All of which we knew anyway. He is still not wanting a diagnosis of Aspergers, although he definitely has it. That is OK with me, its his choice, although it's making support very hard to get.

I spoke with his MHW and a few other professionals today at a meeting about his care. A few things came of that:

- They have said that they are going to make a referral to SS so that i can get a Family Support Worker. This made me quite nervous, but they said its definitely NOT a child protection issue, more of a Child In Need issue. As such, they can provide a Youth Support Worker for my son, who can (hopefully, after time) take him out places etc.

- They have all encouraged me to make a claim for him to get DLA and will all write letters of support for me to do this for him.

-They understand it is important for my son to have his own bedroom, instead of sharing with his little brother. This means they will both have their own personal space, and my older son will have somewhere he can go and calm down, or read, or chill out. Equally, my younger son will have somewhere to relax in, without worrying about his brother telling him to get out. So they are going to contact the council about this. We live in a 2 bed CH at the moment, so i have to apply to be able to bid for a 3 bed (not sure how it all works really, will look more into that tomorrow).

- They have basically all said that i am doing all the right things. That helps a lot. I feel so helpless against his SA/GAD and Depression and it takes so much effort for him to talk to me about anything- or to talk in general.

Killmy mortgage- He is already being schooled in a different way, he is being schooled at home.So we dont need a Education and health plan.

I dont really feel like i fit in with other mums/parents of Aspergers kids, as the predominant problem for my son is the Social Anxiety and Depression (he now has a diagnosis of both of these things- but still refuses the Aspergers diagnosis).

I havent been able to talk to anyone about any of this, as my son doesn't want anyone to know.

Stephnyc- yes he is perfectly safe at home alone, but i have to limit the time he spends alone because his Anxiety and Depression can often get much worse if left alone for long periods. Thanks for your kind words

deanna- it's not the aspergers that stops him leaving the house, it's the Social Anxiety (and GA) and Depression that stops him. So forcing him to leave the house, especially to go to school, is most definitely NOT an option- he has severe panic attacks.

Indie_Kid

You can self refer to SS.

WantToBeSE

Thank You Indie. I dont need to now, as CAMHS have done it for me. Hopefully they'll be quick.

Corelli

Hi, I think our situations are very similar regarding our sons. Mine is 16 and has Depression and Anxietiy, his diagnosis was GAD but the psychiatrist he has occasionally seen reckons it's more SAD. He was also diagnosed with Asperger's but tbh, when he is not knocked into a petrified little lump of terrifiedness, you wouldn't know he was on the spectrum. A casual observer wouldn't anyway, I can see it in the way he approaches life, and more, but it is not the main source of his difficulties.

WantToBeSE, it can change. My son was nocturnal and would not leave his room for school, to see his home tutors and cut his torso frequently and bloodily. He hasn't done that for a few months now and is signed up for college this September and has just come back from the first part of the National Citizenship Scheme. Admittedly he had to be persuaded onto that, but I guess that somewhere deep inside he remembered and accepted that at one point he had thought it a good idea.

Your boy is accepting help from CAHMS, this is good. My son has had intensive psychiatric intervention as he has had two long term hospital inpatient stays, of 6 months and 10 month, the 6 months as a compulsory patient under the Mental Health Act. He now refuses to deal with psychiatrists although we did have an EP come to the house for a while, courtesy of the school. Some of me wanted to return to home education but he was very unwilling and I didn't want the responsibility at that stage. Anyway, all his school years have not given him much educational input, but he is working at GCSE level so he is going into college a little above the very basic level. The college have been very supportive and given him opportunities to go in, to get used to going there and meeting staff. He was not able to do much of that but after this outdoor (intensive!) activity with peers I have more confidence about college working.

I really do hope you get some more appropriate housing very soon, and that the support and interventions you are getting help you all. Be prepared to push. Resources are limited and I'm sorry to say that if you seem to be coping at all less will be offered you. Suffering in silence is not a good approach.

WantToBeSE

Thanks Corelli. Sorry to hear about your sons struggles too, but it sounds like he is doing a bit better now? Do you know what caused the change, or has it been very gradual?

I worry for my sons future really. He wants to go to college and get a job and do all the normal things, but his SA/GAD & Depression are so extreme at the moment that he struggles to mke conversation with me sometimes.

It's so hard because i love him so much, and watching him struggle and say that he hates himself and that he is a rubbish,useless person is so heart breaking. I just want to make him all better, and i cant.

Corelli

It has been very gradual, and in an erratic way, two steps forwards, one step back sort of thing. He went on meds - Pregabalin and Sertraline and it seemed like that had a miraculous effect but then he went downhill very fast. I think that as his hormones settled down a bit that helped but then as he got interested in girls romantically and got disappointed that was an awful blow too. The more he has been in a peer group the better he has been, but getting him to do anything with others has been nigh on impossible.

I think the bottom line is parental support but it needs backing up by professionals. With the cuts to everything we felt very much left alone, when he came of hospital the first time we went from weekly family therapy and daily updates from staff and more, to seeing someone at CAHMS once a month. No we see no one, the psychiatrist fails to keep in contact, it was great when the EP came here even if T didn't see her. Because it an ENORMOUS strain parenting a child/adolescent with difficulties like this.

So, meds, a tiny bit of therapy, a gradual intro into activities with peers, maturity, non stop encouragement and support from family ... it all looks so easy written down like that, but it's not. As you know. That non stop support ... when he refused to go on the Citizenship thing ... gt hit by fears etc and refused to get out of the bath ... I went away and howled. Knowing that a summer of no other young people, knowing he'd opted out of something good. Thank every deity listening that he managed to do it.

It sounds like you will be getting what they call a mentor around here. If you get a good person your boy will engage with that could be a great thing. We had one - a young psychology graduate. A great lad but my boy was having none of it. This chap was trying to get T to go out with him and had learned from me that T liked Subway. In the end he ended up ging to Subway and bringing back a Sub, all with T refusing to see him. In the end, T would look over the bannisters at him as he left. He's a cynic my boy, and is very dubious of people acting like they are his friend when they are getting paid to do so. Not because they do really like him.

Your son has the desires, that is a good step. The thing he needs to do is look at the steps he needs to do to achieve those things. We had getting out of bed as the first step, and even that wasn't achievable most of the time, but if your boy is accepting counseling he may well accept trying the little steps he needs to take. Do keep posting here and letting us know how you and the rest of the family are getting on.

C X