JsMum

My son had speech and language development delay and the LEA have finally excepted Js Communication impairments but Im still battling for the provisions in part 3 of his statement after reassessment of his Statement. Does Finn recieve any provisions at presant with his nursery placement such as 1.1, SALT, Social skills groups? I would recommend you contact the Cerebra Website, if Finn hasnt recieved SALT in your local authority in the last six months then Cerebra offer salt session vouchers, http://www.cerebra.org.uk/English/GetHelp/Pages/HOME.aspx As long as Finn has the right provisions and support in place it wouldnt matter if it was a school or Nursery but do you feel that Finn would better suit a more specialised Primary school placement? Also deferring him means he is not starting a provision within line his peer year group. Do you feel Finn would benefit from another year in a nursery placement, or do you think he is ready for a either special or mainstream setting but with additional support. I would contact National Autistic Society Educational help line. http://www.asd-forum.org.uk/forum/Index.php?/topic/20381-special-educational-needs-advice/ Another service to contact for more information on GDD and ASD differences or if children with a GDD have been misdiagnosed and actually have ASD instead for me if he has a communication disorder I would say he has a ASD need. I recommend Contact A Family. http://www.cafamily.org.uk/Direct/g22.html http://www.cafamily.org.uk/medicalinformation/conditions/azlistings/a84.html JsMUMX

I would contact Nas for further support reguarding the soiling if its related to PDA/ASD. There is a few topics on their website. http://community.autism.org.uk/discussions/health-wellbeing/parents-carers/soiling-issue (Mods remove if not allowed to post this) http://www.autism.org.uk/living-with-autism/understanding-behaviour/toilet-training.aspx Have you also had any support from this foundation http://www.bladderandbowelfoundation.org/ also ERIC http://www.eric.org.uk/ http://www.eric.org.uk/Constipation/constipation_soiling_leaflets I would contact these for further support also if you have not had any support so far. I dont understand why she was discharged from the contence support services in your area, if CAMHS have discharged her and she is continuing to have difficulties i would request a referal again. It must be very distressing and stressful for you. JsMumx

Here in the UK Its a new Anti D. If so would like opinions and views. JsMumx

The norfolk broads is where you begin when you begin posting, as your posts increase you start to climb up which are names of mountains, Scafell pike, Snowdon, Mt Blanc, K2 until your as good as Kathryn and cant climb any further. Your not the only person who thought that the norfolk broads was a location errorxxx http://www.asd-forum.org.uk/forum/index.php?showtopic=13337 http://www.asd-forum.org.uk/forum/Index.php?/topic/23529-how-to-change-location-please/ Im on Mt Mckinley but only here, as id never be able to climb that in realityxxx JsMumx

Hi Brainfizz Is it you is who is waiting for a dx in PD or AS? JsMumxxx

Really pleased that Glen has settled in even with the blip of your recent visit that throw him he thought he was going home again. Does Glen have any time concept, days of the week, Months of the year, would a visual calander help him with the dates he goes home and in the future the days you visit. Maybe he doesnt understand the difference between a visit and you coming to collect him, this may need further development if it can be that he could eventually understand the difference with social stories, visual cards, ect... The positive is that other than the visit distress it looks like Glen has indeed settled in and you are happy with the care and support which is very important as Ive learnt myself. It looks like the staff are able to help Glen and support him even when stratagies dont work they dont give up they continue to show concern, its a good sign he was eating his dinner it shows he wasnt too anxious not to eat. Lets hope that the next 12wks are just as positive which Jay tells me in delight isnt far off christmas. Time does litrately fly.xxx JsMumxxx

Some people with a dx of BPD have been misdiagnosed and actually have Post Truamatic Stress Disorder and Aspergers Syndrome. JsMumx

My son recieved DLA at five after Tribunal and he had NO Diagnosis at all at the time, he did have Developmental delays though and behavioural, emotional and learning difficulties identified, his school at the time J was on school action and was recieving SALT both at school and at the clinic, we recieved DLA Care later on in renewals he recieved DLA Mobility and Care and later we went to tribunal for high rate mobility. My son has recieved diagnosis from 7 upwards as he has comorbids and comlex needs. You do not need a diagnosis for DLA as others have said sometimes diagnosis dont come throw until their older even though they had NEEDS before their daignosis came throw and for some children diagnosis never come at all only arriving in their adulthood or some adults remain undiagnosed throw out there life but they still have had needs. DLA Mobility you have to prove he requires supervision, guidance and preventative mesures to ensure his safety, fore example restraint, visual support, preparing a task before hand. There is DLA support guide with the National Autistic Society. http://www.autism.org.uk/living-with-autism/benefits-and-community-care/disability-living-allowance.aspx http://www.cafamily.org.uk/families/rightsandentitlements/benefitstaxcredits/dla.html http://www.cafamily.org.uk/families/adviceandsupport/helpline/faq.html Also reguarding the Loft instulation if you require more rooms due to your sons ASD needs you can apply for a Disability Facilities Grant though again this can be lengthy and stressful. http://www.direct.gov.uk/en/DisabledPeople/HomeAndHousingOptions/YourHome/DG_4000642 My son also had fiv.e hearing tests because many people thought he was deaf, he has been assessed as having a Auditory Processing Impairment, he is not deaf, infact he has hypersensitive hearing, but certain tones and volumes he has impairments. Look up Auditory Processing Disorder/Impairment. http://www.apduk.org/ http://www.cafamily.org.uk/Direct/a82.html I really do recommend that you do appeal and go to tribunal if you are turned down. JsMumx

Wow well he certainly sounds happier and having his own bike will have done wonders to help him along the way, its fab he doesnt mind wearing a Helmetxxx good luck with Glen coming home, I visit J this weekend too, The time has flown by, cant believe its already two week ago that he started his new school. Im staying the weekend in a lovely lakeside youth hostel close by his school, J has settled in with no problems, staff have said its like he has lived there for ever. The staff take him to the Park everyday and they have their own facilities for activies as well to keep him entertained. I feel better within myself too now Ive got time to do the things I otherwise wouldnt when caring for J full time. It sure does help a lot when we know their well cared for and happy. Good Luck to Glen coming homexxxx JsMumx

The fact you had to hurry could of been the trigger. Planning, preparing, time and organisation is a real key to helping a person manage and cope with a task. Doing tasks in a hurry can cause stress and anxiety and overwhelment. If you have been stressed yourself because your going to be late or delayed this can also esculate the situation, so look at your own reactions, when were in a hurry we may not give as much patience, we may change our vioce tone and volume, we become hasseled. so it maybe your reactions are feeding the situation too. Some tasks need to be broken down and allow more time to do that task, if your son has processing impairments he will require additional time so he can process the task and then act on the task in mind. The behaviour your describing about not coperating to walk and to just sit there I would describe as an Aviodant behaviour, avidant behaviours are a childs own coping stratagie to put off a task for as long as possible because they are going to struggle with a task for what ever reason. So my advise is to break down the tasks into small size pieces and look at preperation stratagies. I feel that there is always a trigger to a behaviour, sometime the behaviour isnt displayed until hours, days, even weeks later. JsMuMX

BD Oh PS: Just seen your post to J's Mum. If your son at four doesn't display these behaviours at school then they are far more likely to be situational and 'controlling' rather than medical, BD J at four did display the same behaviurs at school just for the record, some schools dont recognise, achknowledge our childrens distress, or difficulties and some schools lye and buck to system to save their own SEN funding because they want to spend it on basket ball hoops. Just because a child with ASD/ADHD ECT is fine at school doesnt mean that they dont have a medical reason, J has complex special needs including ADHD and Autistic Spectrum Disorder and in a specialist school to meet his special educational Needs which took me years to fight LEA/SS/NHS to ensure he accessed the right provision and one that actually achknowledge his needs and meet his needs. Just because there is a difference in behaviour at school to home doesnt mean that its purely situational (parents fault)!!!! Here is an interesting links on behaviour at school and Home. http://www.autism.org.uk/living-with-autism/understanding-behaviour/behaviour-common-questions-answered/different-behaviour-between-school-and-home.aspx http://www.asd-forum.org.uk/forum/index.php?/topic/192-the-passive-childpretending-to-be-normal/ JsMumx

I would get the ball rolling now then if you want him in a specialist school as it can take a long time to get in place, its getting harder and harder to get children with suspected/diagnosed/undiagnosed children into special schools as there closing and new Acadamies with Enhanced Learning units are opening which are still totally unsuitable for some childrens SENs. So I would get intouch with IPSEA and Other Educational Services to help you, there is a NAS Educational advise line too so contact them too. It has been openly widely discussed here that lack of support in the school can and does have a knock on effect on childrens behaviour when thier needs are not been met and can affect their behaviour within the home. So I would look into what support could be offered in the here and now and the future. You said that the Nursery said that he will need more attention when he goes to school, what kind of attention and why would he need more attention, you have to show specific and presise reasons for your child needing the support. Anyway recommend you get support now for his educational needs. http://www.asd-forum.org.uk/forum/Index.php?/topic/20381-special-educational-needs-advice/ What is the enviroement like when he is outdoors and in the middle of the road? Busy, Traffic, Crowds, ect.... JsMumxxx

I had lots of difficulties managing J when he was younger in time out so it can be very hard when the child is lashing out and hurting themselves and others, in the end we had to stop time out and take away privilidges and we used tokens and star charts which where fine for a week or two, what helped me a lot was courses from National Autistic Society called HELP programmes and J recieved therapies from Bibic and other independant children developmental clinics that gave us practical support. http://www.autism.org.uk/our-services/residential-community-and-social-support/parent-and-family-training-and-support/help-seminars.aspx http://www.bibic.org.uk/ I also recieved loads of help from CONTACT A FAMILY fab organisation, if you contact them they send you loads of information and booklets similair to this one here. http://www.cafamily.org.uk/pdfs/behaviour.pdf'>http://www.cafamily.org.uk/pdfs/behaviour.pdf http://www.cafamily.org.uk/ I didnt get to do the early Birds myself as J recieved dx later on so we missed out. I have had friends though have attended them and the comments are positive. Have a look here on a NAS LINK. http://www.autism.org.uk/our-services/residential-community-and-social-support/parent-and-family-training-and-support/early-intervention-training/find-out-more/parents-views.aspx http://www.autism.org.uk/our-services/residential-community-and-social-support/parent-and-family-training-and-support/early-intervention-training.aspx The Naked running could possibly to do with Sensory needs, to understand more about sensory issues read The out of Syncs Child a fantastic book. http://www.amazon.co.uk/-Sync-Child-Carol-Stock-Kranowitz/dp/0399531653/ref=sr_1_1?s=books&ie=UTF8&qid=1312844928&sr=1-1r I do agree that the aggression issue does need to be dealt with because I learnt that as they do get bigger, stronger it only gets more serious and if not dealt with now the assualts will only get more serious and dangerous. So do ensure you get the right support to deal and manage your sons aggressive behaviour before it really does become a real area of concern. JsMumxxx

Have you tried a ABC chart? http://www.autism.org.uk/living-with-autism/understanding-behaviour/behaviour-guidelines.aspx I recommend a ABC for about a week. That way you will begin to see a trigger but also what consequences your child has with a particular behaviour. I do agree that there is no real consequences to his aggressive behaviouru for example he was allowed to watch Bumbles DVD later on after his outburst. However there may be triggers that are leading to the behaviour in the first place so hopefully by preparing, planning taks for your son will react less aggressivly. A picture symbol Visual Timetable can be helpful if he understands the tasks and is routinly followed. Look at activities and therapy that will help him express his feelings in a more productive way and give him opportunity to use his anger in more safe ways, Anger is natural and normal, its how we deal with it that matters. So look at Feelings, Emotions Stratagies for children with communication impairments, as Aggression can be a form of communication when a child can not verbally express. Look at relaxation activities as reducing stress can also help reduce aggressive tendencies. Your son is four years old and I remember that this period was the hardest time for me so it is a difficult journey. Hopefully when you get the outcome of the possible dx you will be offered more specific parenting support such as Early Birds and Behaviour therapy related to SEN. What support does your son recieve from School? JsMumx

The doctor actually admitted that Ritalin was cheaper than giving these boys (girls if its ever picked up) what they need such as TAs extra. No daught Ritalin was a cheaper option for the summer holidays, surely there is other provisions available to give the Mum a Break! Such as specialist respite provisions, special needs holiday clubs, sessional workers and home support but ritalin is defo cheaper than ensuring the families have more practicle support. If ritalin is required surely its in a classroom context not a home or holiday context and certainly not to give Mums a break. One of the mums had to wait two years for a parenting course. Ive done the Family Effective Training course which did help with ADHD however Js needs are not just ADHD he has comorbids and learning difficulties that mean he needs additional needs parenting courses, our council did not buy in these parenting courses and so for families like mine the courses where aimed at normally develpmental children. The investment needed for many children with additional needs is outweighed by funding and so medication is going to be going to be a short sticky festering plaster eventually it falls off. What is needed is a Wholistic aproach, medication, provisions and services. Thats not going to happen is it. JsMumx

I managed to watch the programme and I do agree that in the situation with Ryan he needed much more than medication, I was impressed with his school he attended, even the behaviourist felt that he needed his medication increasing yet it was the six weeks holidays, usually kids taking ADHD medication they have a medication vacation, they dont take it in the holidays. What I didnt understand was why where they in agreement for Ryans medication to be increased if it wasnt a cure, that he would still be unhappy, that bit I was confused with. JsMumx

Here is a link on the ITV PLayer. http://www.itv.com/itvplayer/video/?Filter=259926 JsMum

Enid Ive come to terms with the fact I can no longer manage J on my own, I was contemplating a section 20 but the solisitor advised me against it saying It would be hard to get him back home again in the near future, kind of wished I had of done a section 20 now because social services have a section 38 now and soon a section 31. If it needs a section 20 at the resi to secure funding then Id do that but ensure you get legal advise first maybe a solisiotor in SEN. Js still on his Prozac which the new school ensured he had a fresh supply as I was to distracted to sort out his prescription but they took in their stride and got him sorted out. J says he really feels the difference when he takes the proper dose. I dont regret the decisions Ive made, he has his needs met now and that is what matters. J seemed very settled last night the sign is that our phone call was short and he seemed very happy. JsMumx

Happy you had a nice day out with the family defo a yes. Your son has different needs compaired to the family thats all so its obvous that the results are going to be different when you spend a day with your family than when you spend it with your son. Try and not feel bad that youve enjoyed todayx Your son has different needs thats all. JsMumxx

I have severe obsession issues: I will eat the same food for every meal, every day until eventually I find a new favourite and will do the same again. I once listened to the same CD every day, non-stop for over a year. The internet is probably my best friend and worst enemy, I have the answers to any question I could ask but I can easily spend 16 hours a day reading about the same things, day in, day out. I would say you could be engraving some predictability in your day, needing a familair routine/structure ect... Any changes you possibly aviod, obstuct, distract because its not predictable, Just my guess. It is unfortunate that you went to a GP and was not listened, I would advise you to contact a local Autistic Service for more information on accessing a referral for a Adult Aspergers Syndrome Diagnosis. I read yur from Newcastle, A town I keep meaning to visit for the day as Im in the North too, anyway have a look at this link to see if its any use to you. http://www.autism.org.uk/Our-services/Find-NAS-services-in-your-area/Local-services/Newcastle-service.aspx Have you changed Gps since your experience with your Gp? I recently changed my Gp and within a day I have accessed Mental health services, councilling and other support, thats just with a CHANGE of GP. So think about changing to a different surgery if your not happy with your GP. I wouldnt let one Doctor ruin the possibility of getting further support for your present and future health needs. If you really do feel an assessment would help you then go for it. JsMumx

Hi, I agree that maybe going away for a couple of days, maybe camping or even youth hostels which can be fun getting away from the usual mondane stuff and a descrete excuse to get your son away from the xbox. What about getting your son involved in some volunteering, this would help fill the void and gap of the daily day routine. There are supported living scemes for Adults with Aspergers Syndrome that have a full indepenant living skills package with support as and when however as always this is a postcode lottery and only in certain areas. What are his interests and hobbies? Could he get involved with youth work if he is more comfortable with younger people. As for yourselves, do you get any support yourself, a break, time out for yourselves? JsMumxx

Do you feel that there could be something here, ASD/Sensory? your son is still very young yet, normall diagnosis for AS are around 8 upwards and educational psychologists appointments can take months. You have described a lot of similairties with AS and your sons Teacher has also raised concerns. They do need your permission for a Educational Pyschologist and the forms have to be detailed so that the Ed Psch can have the right assessments. It may look formal to you but to the Ed Psych there just standard practice. I would attend a local AS parent group to get a feeling about AS and to be with other parents who have children AS. You can request an information pack from the National Autistic Society that has more information and facts on AS. http://www.autism.org.uk/asperger http://www.autism.org.uk/en-GB/Our-services/Advice-and-information-services/Autism-Helpline.aspx My son also has Sensory issues, under and overactive, so it could be that there is a mixture of sensory processing functions. All the lovely Positive traits that you described your boy can accompany children with AS too AS is a triad of impairments in social interaction, social functioning, theory of mind. JsMumxxx

Has CAHMS wrote to the Hospital and Home Tuition Services to request Home Tuition or Hospital Tuition? what are his abscences classed as at the moment? Do you have covering letters to prove his Medical abscences? I would defo be making plans for alterantive education, such as Hospital / home tuition for september. If cams says he cant be in school then the LEA should be prividing an alterantive education. JsMumx

UPDATE J started his new 52wk residential special school on Monday, I met him at his new Priory group school and I unpacked his TV, XBOX, Books, Games, DVDS, Orniments, trophies and got his room all organised and his stuff set up. We spent the day together and I stayed the night locally then the next day was his Looked After Care Review 3 months have passed since the ICO. Its flown passed to be honest and it went well, Im going to be visiting fortnightly staying over locally. Ive had the Psychiatrict report and it sadly says that without support I will not manage J on my own for weekends and due to my own mental health difficulties I wont manage on my own so its daughtful J will come home overnights. The psychiatrict report was very distressing however, very detailed and very personal, dreadging up my life which was hard to read, nothing the social services didnt already know! Its looking very probable that Social Services will obtain a full care order. I am back in court at the end of September. The most important thing however is that J now has a new school, a fresh start and he is in one provision no more traveling the breagths of the country, he has been throw so much bless him. J has taken to the new schools like a duck to water though, he has done so well, Im so proud of him. He loves the outdoor astroterf and they have loads to do, he hired a DVD yesterday and watched that in his bedroom. J has a visual Timetable and weekly menu now and for the first time he knows in advance what he is doing at school. I dont see J now for another two weeks then I visit again for the weekend, the school are taking J and other boys on holiday, the boys on the unit have excepted J no problems, one of them played yesterday with me and J playing a very good game of football. The staff have been brill, very patient and understanding. Ive slept better the last few days than I ever have done. Im relaxing and taking it easy for the rest of this week and then on Monday Im going to start my fitness regime and get fit. Its a fresh start for the pair of usxxx JsMumx

You need to go throw your GP for a referral but I would also look into contact National Autisctic Society who can help you with understand what AS is and the process for assessment, diagnosis. http://www.autism.org.uk/ There is information on NAS for specific areas too you listed Bolton on your profile so if thats were you live then Manchester is not far from you and they have support for that area. http://www.autism.org.uk/local-services/find-local-services/manchester-services.aspx Other ASD support services in the manchester are here. http://www.asgma.org.uk/ and a NHS link here that may be of interest http://www.salford-pct.nhs.uk/healthguide/thedirectory_listing.php?id=268 There is support throw Relate who also have experience of couple who have AS/Other specific needs so just express you suspect your husband has AS. http://www.relate.org.uk/home/index.html It is increasingly more difficult to access the right professionals to get a proper assessments but if you feel strongly and your Husband wants to go ahead with the assessments just keep trying until you have got somewhere, put it in writing so you have evidence of the request of referral of date. Let us know how you get on. JsMumx