nikrix Report post Posted January 4, 2006 I was just wandering How many of you get support after you have had dx? If you do in what form and how long has it been going on? I am still in contact with my daughter Paediatric Consultant and I can make a appointment any time I feel that P has a problem, that she can deal with. I know this is not the case for alot of parents. Quote Share this post Link to post Share on other sites
Suze Report post Posted January 4, 2006 We have,nt seen the physch since he dx my son 2yrs ago.We have had contact with the autism team via school.I think services are given on how great the need/and the amount you shout.I know alot of camhs services are seriously over subscribed. Quote Share this post Link to post Share on other sites
lindy-lou Report post Posted January 4, 2006 so far i have had no support whatsoever. Quote Share this post Link to post Share on other sites
elaine1 Report post Posted January 4, 2006 had none at all and still dont really. Quote Share this post Link to post Share on other sites
madmooch Report post Posted January 4, 2006 Not much support from SS but he see's the pschologist regular and the paed twice a year, not that she's much help Madmooch Quote Share this post Link to post Share on other sites
Tez Report post Posted January 4, 2006 See the Consultant at CAHMS whenever we want, but she does like to see my son at least once every 6 months if we haven't asked for an appointment. She has given us her mobile number and email address to enable us to contact her whenever we want. Quote Share this post Link to post Share on other sites
Jill Report post Posted January 4, 2006 Our LEA is excellent and get good support from them (they suggested the special nursery for The Boy and arranged the transport for us). We have quarterly appts with the paed to talk about how The Boy's coming on, any problem areas or areas of concern. We also have 6 monthly appts with the educational psych. The Boy has weekly speech therapy sessions at the special nursery. Our Health Visitor is rubbish, but we did manage to get her to arrange free nappies after much harrassment. It's all a postcode lottery - we're just lucky to live where we do. Quote Share this post Link to post Share on other sites
LizC Report post Posted January 4, 2006 Hi Matthew was dx in september. so far we have met the nurse 2 times (working along side the pyschologist) she was supposed to come on 28th nov, but it got cancelled and not heard anything since. she is supposed to be helped us get Matthew to settle on a night, before moving on to sorting out potty training at night. she was supposed to have gone into the school too but hasn't! the school haven't even been officially been told of his dx either which is highly frustrating! so I have photocopied to letter we got (and the gp) for them to read! Quote Share this post Link to post Share on other sites
adamsmum Report post Posted January 4, 2006 Thats what you get when you ask for help where i live. I've heard of some getting respite but they have s w and get loads of probs so i steer clear of them Quote Share this post Link to post Share on other sites
lil_me Report post Posted January 5, 2006 The local support group, and CAHMS after I requested a referal. I wouldn't consider even asking for respite. ASD team pops into school every 6 months but very few of the 'recommendations' made have been used. Quote Share this post Link to post Share on other sites
UltraMum Report post Posted January 5, 2006 We see the consultant once a year - mainly cos J takes ritalin ... most support we've gone out and found ourselves ... all we were given at diagnosis was a 'Teachers' guide to Asperger Syndrome' or similar We managed to get a place on the EarlyBird Plus course last year and that has been a Godsend - we learnt a lot and are still putting the lessons learnt into practice. I started a poll on something similar - see this thread Quote Share this post Link to post Share on other sites
mossgrove Report post Posted January 5, 2006 Each of our two Autistic children sees the paed roughly every six months. We have had sporadic involvement with SALT but they are very keen on group work which doesn't suit our boys. A SALT visits the school regularly. We have a nominated suport worker from CAMHS who we see every few weeks. We had a portage worker weekly before H started school, she cointinued to do some work with him while we were still trying to integrate him into mainstream. CAMHS will be visiting J's school once a week this term to work with him on understanding and managing his emtions (a BIG area of difficulty) Minimal involvement from OT, but they have put a programme together for his Special School to work with. Both boys are in Special School, J currently has addtional 1:1 support most of the time. Overall we are pretty happy with the level of support we receive, but I do now this isn't the case everywhere. I think the fact that we have two children on the spectrum has made it slighly easier for us to get help. Simon Quote Share this post Link to post Share on other sites
DAS999 Report post Posted January 5, 2006 Time line of DX and after Saw GP - 2 months - saw Psych - 1 month - saw second psych (ASD specialist) - 2 weeks - DX of ASD, OCD, Challenging behaviours, Communication problems assoiciated with ASD - 1 week - saw GP (referral to Social Services) - 4 moths later (this month) seeing Social Services (two weeks time) for care assessment and awaiting next Psych appointment. I think we have been lucky. I think it has been made easier as they have look at her old notes from childhood which stated communication and language delay and problems, OCD, Education statement and so on. I think the DX would have been easier if it was given when she was a child but ASD was not that well know back then I guess and her parents did not want a DX. gone slightly off topic but in conclusion, we have had to push for the SS assessment which is in a couple of weeks but our GP has been v good and so has the psych. Would like to add that this forum has given me more support than any doctor Quote Share this post Link to post Share on other sites
LizK Report post Posted January 5, 2006 We see the paediatrician every four months. We get blocks of ST several times a year. Main support and intervention at the moment is from The Early Years Intervention Service. EYIS have been fab, we get weekly home visits from a preschool teacher who does play based work with Adam and she also goes into nursery every month or so to keep an eye on things there. She is liasing with school to arrange a settling in programme there. Nursery is in a different LEA so they also get visits from their EYIS SENCO on a monthly basis to ensure Adam's programme and IEP is being carried out. I think we are very fortunate at the moment in the degree of support we are getting though we did have to fight for it. The EYIS pull out after the summer and I will really miss that degree of help. School can access the learning Support Team and Autisitc Outreach but it has been nice having support at home Lx Quote Share this post Link to post Share on other sites
bevalee Report post Posted January 5, 2006 There has been no support at all! We did have an appointment at Camhs last week. Apparently my childs aggression is still due to my poor parenting skills, when he loses his temper it is becauce i have not laid down firm ground rules! Quote Share this post Link to post Share on other sites
hev Report post Posted January 5, 2006 absolutely no support from anyone,ss useless,cahms useless Quote Share this post Link to post Share on other sites
shell Report post Posted January 5, 2006 none the only help and suport i get is from family and you guys no one is intrested in us the health visator told us that once he had turned 5 there was nothing she could do think she was glad to see the back of us Quote Share this post Link to post Share on other sites
nikrix Report post Posted January 5, 2006 Finding this very interesting, I wanderer if it depends on where you live? Thanks for all your replys, keep them coming Nikrix Quote Share this post Link to post Share on other sites
UltraMum Report post Posted January 6, 2006 health visator told us that once he had turned 5 there was nothing she could do think she was glad to see the back of us She was wrong: As a Health Visitor, you will undertake a range of work. You may be working with mothers of young babies - advising on such areas as feeding, safety, physical and emotional development and other aspects of health and childcare. You might also work with people of any age who suffer from a chronic illness or live with a disability. Your role here will include helping them to overcome difficulties they may face in coping with their illness or disability. from the NHS careers website (I added the bold formatting) Quote Share this post Link to post Share on other sites
smiley Report post Posted January 6, 2006 We're fairly lucky in that our Paed can see us as often as we need her - the wait for an appointment is usually only a couple of weeks (she's has seen us within a week when M was very unhappy). The SALT lady is fantastic - we've seen her regularily and she attends school - again, she's on the end of the phone whenever needed. The OT - We're still waiting for, and have been for over a year. Camhs - They came into the school before dx. Great in that they pushed for a dx - but haven't been seem since. The thing i really need is a support group. There is one reasonably close to me, but it is during the school day which i can't do as i work. It would be great to meet face-to-face with other parents. Oh and something for M would be wonderful. A social skills group - or just club he could go to. All the normal swimming clubs, beavers etc just wouldn't be suitable for him. Quote Share this post Link to post Share on other sites
baileyj Report post Posted January 6, 2006 Max DXd 2 years ago. During DX loads of assessments off everyone. Then saw CAMHS once back then, supposed to see paeid yearly, but haven't for 18 months. Used to get weekly portage visits before Max started reception, brilliant. After DX saw SALT quite alot, but now SALT once every half term goes into school, but I can ring here whenever I want. OT cr*p, but now got new one who I can ring whenever I like, school also in contact. Best support initially was pre-school learning alliance, they helped us no end find a playgroup that could work with Max. And now his school are fantastic, his LSA is very experienced and knows how to tap into all the resources. Other than that, this forum has been my best support. Today, Ive been asked by the pre-school learning alliance if I will talk to parents of a newly DXd 3 year old, have agreed cus I want to help, hope I get it right. Jo Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted January 6, 2006 Can't complain at all We've had support from paedetrician, psychiatrist, GP and Health Visitor (my son's 9 years old and was dx earlier this year). We have paed's mobile number in case we've got a problem and we have been sent plenty of support material. We live in Newcastle upon Tyne Daisy Quote Share this post Link to post Share on other sites
