louxx Report post Posted February 23, 2007 I have a 16year old son who has a learning disability,adhd, autistic spectrum disorder and co morbid anxiety (so they call it). I would be grateful for any advice as to what help i am entitled to and how to go about it. At the moment our life is a nightmare, not just for my son but for us all as a family. I have another son 13, luckily very quite and gets on at school, i dont have any worries with him. I also have a 6yr old daughter whos very much like my middle son. I feel so much for my other children as they dont have much of a life as we are unable to go out because my 16year old is so bad he won't step out of the house or do anything else. He dosn't attend school as he cannot socialize and finds crowds very hard to cope with, this you can imagine is very hard as you can't really go anywhere without someone being around. He isn't sleeping well and is physically sick due to panic attacks through the night,he worries about everything and everyone. We have all been suffering for the past five years, this is because everything seems to be getting worse. I got in touch with autism west midlands who have provided him with a mentor for 1hour a week. I dont get any other help at all. He is under a pyschiatrist but i am unable to get him out the house to get there. Its all just getting too much to cope with and i dont know where to turn for help. I would really love to just have some time with my other children also as they miss out on so much. PLEASE can anyone offer me any advice.....? Quote Share this post Link to post Share on other sites
JsMum Report post Posted February 23, 2007 Hi Lou and welcome, I woundered if you have heard of NO PANIC they are a helpline offering support and give further support, they are on http://www.nopanic.org.uk/menu.htm they have more information on the website. also MENCAP and Natioanl Autistic Society Have further support to offer, and have you requested an assessment from your local council services and see if he can have further practical support and access the Disabilty teams. NAS and MENCAP can support you futher with Benefit entiltlements. Carers centre have supported me a lot emotionally over the year and I attend a parent group once a month that has just developed over the last few months. so do check your local ASD/AS parent support group, as some do have Teens ASD/AS support groups attatched to them. Hope this is of some use and hope to meet you soon JsMum Quote Share this post Link to post Share on other sites
louxx Report post Posted February 23, 2007 Thankyou so much i will look into these options. I have had invitations from some of our local support groups but to be honest im just so tired of it all and when you never get a break the last thing i want to do is get out and then talk about my son again, if you can understand me. The only support i have is my sister and she works and has 4children of her own so i wouldnt put any more pressures on her either. Its been about 10years since me and my husband even went out on our own. I am waiting to hear back off social services, dont hold any hope though been down that rd before. Anyway i wont winge on anymore im very grateful for your advice and will def look into all of it. Thankyou... Quote Share this post Link to post Share on other sites
smiley Report post Posted February 23, 2007 Hi louxx and welcome to the forum <'> I don't have any experience with older children, as mine is eight - but they're a knowledgable bunch on here - hopefully, some others will be along in a while with some more advice........ Have you tried The Princess Royal Trust for Carers?? http://www.carers.org/ I don't have any personal experience - but i've heard they're great. Quote Share this post Link to post Share on other sites
louxx Report post Posted February 23, 2007 Thankyou so much feel much better with all the replies, just knowing your not on your own helps Quote Share this post Link to post Share on other sites
brooke Report post Posted February 23, 2007 Hi Welcome to the forum. There is a befriending service in most areas for children with asd. They are a volunteer service where someone will come out to your house and either go out with you child or stay with them for a few hours so you can get out. If you have a look on the NAS website ther will be more infomation. This forum has helped me a lot just knowing we are not alone. <'> Brooke Quote Share this post Link to post Share on other sites
louxx Report post Posted February 23, 2007 yes i did request a befriender over 8months ago through autism west midlands but i was told there was a shortage and it all comes down to funding. Thanx anyway Quote Share this post Link to post Share on other sites
hev Report post Posted February 23, 2007 hello louxx welcome to the forum,you are definately not on your own now you have found this forum. i agree with all the advice others have given,what i would say is i used to feel like you about going to support groups,like its going over the same old things but i found they helped me so much,ive made some good friends from mine,people who i can invite for coffee knowing they understand my complicated life and dont judge cos their houses are just the same!!give it a try its so good to know you not alone in feeling like this. anyway hope to get to know you better take care love hevxx Quote Share this post Link to post Share on other sites
Bagpuss Report post Posted February 23, 2007 Welcome to the forum louxx <'> <'> I hope some of the links left by other members are helpful for you. Your not alone...take care <'> Quote Share this post Link to post Share on other sites
fairynormal Report post Posted February 23, 2007 Hi from me too. My AS son is almost 10 and my daughter is 17. She misses out on a lot of stuff too as Isaac can be so difficult. He is particularly nasty to her all the time yet cries for her when she isn't around. It is hard for the siblings I agree. I am currently trying to get support from social services but it appears that we don't fit the criteria for any services/department. I am so fed up of battling along alone that I have submitted a formal complaint and my local MP and councillors are on the case. Fingers crossed. I do go to a local support group when I can which is great. We go on outings and activities during the holidays and it's just great knowing that other people understand and don't judge your child no matter how he behaves. Hang in there. I know it's hard. I have no social life at all, not even the chats in the school playground with other parents as he is excluded from school. Most days see me in tears but I wake up each morning and it's a new day. Each new morning proves I got through yesterday so it's not all bad (or maybe that's the anti-depressants talking lol!) Hugs Sam x Quote Share this post Link to post Share on other sites
smiley Report post Posted February 23, 2007 Had you tried the PARIS website? http://www.info.autism.org.uk/Pages/Index.aspx?gn=292 <'> Quote Share this post Link to post Share on other sites
louxx Report post Posted February 24, 2007 thankyou all so much for your advice its much appreciated, i feel so much better now to be honest. My son hasn't been in school for the past 2years either and the education are useless, i just got to the stage where it was less stress to just keep him at home and give up. I understand what you say about social services, they came to me 4yrs ago now, they looked at the house saw he was well looked after and that was it never saw them again. It just dosnt seem right. One day i saw a couple of lads my son went to school with they were came past my house with a couple of girls all laughing, i ended up locking myself in the bathroom and crying my eyes out. It hurts so much. I would just love one normal day were we could all go out as a family without any worries....... Its true what you say everydays a new day. thanx to you all for replying xxxx Quote Share this post Link to post Share on other sites
Kathryn Report post Posted February 24, 2007 One day i saw a couple of lads my son went to school with they were came past my house with a couple of girls all laughing, i ended up locking myself in the bathroom and crying my eyes out. It hurts so much. <'> <'> <'> I know. When my daughter was unable to go out to appointments for similar reasons to your son, she was eventually referred to the Camhs adolescent outreach team who did home visits. The consultant psychiatrist from that team came regularly and did a lot to help her. Is there such a service in your area? Doing this the wrong way round lou - welcome to the forum. Although we can't all rush round and give you the respite you need, alas, we are here when you need to offload. K x Quote Share this post Link to post Share on other sites
louxx Report post Posted February 24, 2007 Thanx for that and its great i have found this site.. I have actually rang his psychiatirst and told her how bad things are even to the point that my son wants to burn the house down with us all in it so we can all go together, I was hoping that would make them realise how bad all this is for him and us. Well she just sent us another appointment again I couldn't get him out the house to attend. I find that all his psychiatrist wants to do is keep trying different medication. Quote Share this post Link to post Share on other sites
Clare63 Report post Posted February 24, 2007 Oh Lou <'> I don't have any knowledge or experience for respite care, but can see the others have come up with lots of ideas, I truly hope they help. As you have discovered this forum is great, everyone is so kind and lovely and to be honest the best form of support I have found. Clare x Quote Share this post Link to post Share on other sites
Deedee Report post Posted February 24, 2007 Hi Lou just wanted to say keep at it for SServices,it took us nearly 3 years to get them out for a carers assess but they came in the end and we now have set up direct payments for 3hrs respite a week (7 in the school hols) so I can spend time with our other 2 boys. I felt the same as you but believe me when they have grown up with a special brother or sister in some ways they really are a lot more understanding than we realise as parents.Ok mine do get resentful sometimes but not very often,they accept thats just the way things are..try not to beat yourself up over it. I think we all worry about 'neglecting' our other kids although none of us do,if you think about it they probably have a more stable life really as we are always around Quote Share this post Link to post Share on other sites
louxx Report post Posted February 24, 2007 thanx clare and deedee your advice really helps. I will really push it with the social services at least they have rung back this time. thanx luv louxx Quote Share this post Link to post Share on other sites
hev Report post Posted February 24, 2007 louxx i know exactly what you mean when you say you got upset seeing those boys with girls,i was on the bus today and saw about 5 boys get on and go to the big shopping centre,i got a big lump in my throat thinking about my steve keep pushing with social services,make a pest of yourself,i got my mp involved and he helped,keep strong love hev xx Quote Share this post Link to post Share on other sites
louxx Report post Posted February 24, 2007 thanx hev it does hurt and my sons missed out on such alot of his life and i can understand him when he says he wants to end it all theres nothing for him to look forward to. He worries so much about anything happening to us and being left alone, its such ashame. I just tell im here and will always be here for him no matter what, thats all you can do isnt it. luv lou Quote Share this post Link to post Share on other sites
elun1 Report post Posted February 24, 2007 Hi Lou Welcome to the forum. I have 2 boys aged 5 qnd 7. My 5 yr old severe autism with SLD. I know exactly what you mean about seeing other kids and getting upset. I find birthday parties and soft play places the worst. My ds just runs up and down without playing or jumps up and down. He also rocks from side to side all the time. That's when he's not tantrumming! Ialso feel sorry for my other boy so know what you mean. Wish I had some good advice to give but it's so difficult as I know there's a big lack of funding and resources for our children. Have you had a carer's assessment recently? Just a thought. Take care Elun xxx <'> Quote Share this post Link to post Share on other sites
loupin Report post Posted February 24, 2007 hi welcome to the forum, its a great place to be especially on a down day!! I'm also in the midlands. I think that Barnardos offer respite carers. They have an office in Droitwich(nr Worcester) where they coordinate their respite work from. It may not be the right kind of help that you are looking for but they may be a ble to point you in the right direction to other useful agencies. I'm frustrated for you that your psychiatrist is missing the point and still sending your son appointments instead of coming out!!! is your Gp any help, could they not speak to the psychiatrist and explain the situation? Good luck <'> Quote Share this post Link to post Share on other sites
louxx Report post Posted February 25, 2007 hi elun and loupin thanx for your concerns. I dont get the psychiatrist either. I was actually thinking of calling my doctor out to see if he could do anything for him, i will def look into that thanx. My life is just so restricted as my son dosn't like being on his own in the house and i wouldnt rest knowing he was there alone anyway, you just cant win. As for respite i really dont think he would go hes never been away from us in 16years and getting him out the house would be the big problem. Im just hoping i get a call from social services now. thanx again luv lou Quote Share this post Link to post Share on other sites
Deedee Report post Posted February 25, 2007 Hi Lou me again! I resisted even thinking about respite too but there are allsorts of different services about..fortunately our socialworker asked what would suit us..(I know I nearly fainted myself) We came up with the idea of someone to come to us and just literally stay and playor chill with M while we did whatever we needed to with the other 2 either in the house or now sometimes out and about..We have a wonderful teenage boy who has a bro same age as M who is also on the spectrum.He's become a good friend to all our boys and I can honestly say its worked out better than I could have hoped for.Our DPayments are all sorted out by a local carers centre I literally just sign his hours sheet and they take care of all the paperwork.They also advertise for you and attend any interviews too.Hope you find something that suits you and your family too XX Quote Share this post Link to post Share on other sites
louxx Report post Posted March 8, 2007 Hello everyone, just to let you know ive had a call from social services telling me reece dosn't meet the criteria so they can't offer any help. I was so angry, i told them what i thought of them on the phone. So there you go good luck to anyone else who tries. I have a family support worker next week so hopefully she might be able to offer some help. thanx for listening, luv louxx Quote Share this post Link to post Share on other sites
elun1 Report post Posted March 8, 2007 <'> Hi Lou <'> That's absolutely terrible. So sorry they say they won't help. Can't understand it at all. When I had initial assessment and carer's assessment they did take my other child's needs into account and I think that played the biggest part in us getting respite. My sister based in west mids and has an autistic daughter - want me to see if she knows of any services and pm you. She also works with adults with asd now so may know of something Elun xxx Quote Share this post Link to post Share on other sites
louxx Report post Posted March 8, 2007 Hi elun, thanx so much that would be great help, im grateful to try anything. I have a family support worker tuesday through autism west midlands, hope she might be able to help abit more. cheers Louxx Quote Share this post Link to post Share on other sites
