Elouise

Stella, you are doing the right thing. You have told AJ what the bounderies are and you are sticking to them even when it makes your life hard. I am so proud of you for doing your best to parent AJ even though he kicks so hard.

I think that may be a 'gender' difference; boys tend to act out feelings at certain ages were as girls internalise them. Annie bursts into tears and rips her own things to pieces and the only way to calm her down is to wrap her head to foot in a soft fluffy fleecy blanket and let her curl on on the sofa with a soft schoozie ball in in each hand, light an oil burner with th orange and cininmon oil she loves and walk round on tiptoes for a bit. Your lad may be expressing his inner distress and overload in a more 'in your face' way, either can be rather wearing on the old parental nervous system though. Had a thought. I managed to access Studio 3 Low Arousal Interventions vis the NHS which proved very helpful in picking through the minefield that can happen in a family where children have taken a pick and mix approach to the potentially volitile mix of adhd, asd, dyspraxia and related sensory and other co-morbidities. I do not know if the same may be available in your area of what criteria may be used to decide which families most need access. The explosive Child does seem to be based on a similar approach.

This is Annies tentative diaognosis made by the CDC. Her pead' felt it best explained why she had boits of this, bits of that that were causing significant learning problems but did not fit the criteria for a formal label of ASD and related disorders. It comes out as a spacey dreamer who clumsly moves through a differant time and space to the rest of the world. She is hypersensitive to touch, sounds and smells. Hyposensitive in needing lots of sensory input to know where she is sitting, what she is standing on etc . This label meant she finally got he mix of physio, OT and extra support she needed in school and she is making very good progress as a result. I think this label helps by giving people a description of the areas that cause difficulty and allows a child who does not fir a full criteria who clearly has difficulties to get the help they need. I have not found anything in English that is really helpful but I can recommend the 'Explosive Child' by Ross Greene. Annie is not 'explosive' but she was becomming very withdrawn and anxious because of DAMP and this was the most helpful book I found in making her and my life easier. If I do find anyting better I will let you know. Hope having this tag helps your son access the support he needs to thrive.

I would strongly recommend contacting 'YoungMinds' as has already been suggested. Nathan was behaving in a similar fashion but not until he was 12+. He has since had a diaognosis of severe anxiety disorder, and a tentative bi-polar diaognosis. The poor lad swings between long crushing depressions that floor him and th occasional more muppety ups. If you have not been refered to tertiary CAHMS [Regional unit] for a second opinon try and push for one. Secondary CAHMS [usually in larger local hospital rather than specialised child and adolescent unit with beds!] did not have the level of expertise to diaognose Nathans additional difficulties. He had to be referred to tertiary CAHMS where his problems were looked at very seriously. I would not let an OT do an 'emotional assesemnet' on my distressed child either. Nathans was done by a clinical psychologist and a specialist peaditaic nurse [child equivilant of a Psychiatric Nurse] with support from a Snr SaLT with a specilization in ASD. Sadly there is far more support for distressed adults than distressed children and young people.

Almost dependant yet vulnerable, thats always hard. You have not let him down, parenting a young adult is very differant to parenting a child andparenting a vulnerable young adult is differant yet again. If you can face it, talk with your son and ask if you can contact adult social services on his behalf and ask for an assessment of your sons needs and ask who can help with housing him. Explain this is not to 'place him in care' but to help him to move towards having his own flat but to do so social services need to say he needs one. Strictly speaking your son is legally a 'vulnerable adult' and depending on how the policies are implemented in your area he may be entitled to semi sheltered housing and some extra community provided support. As a vulnerable adult he is entitled to 'representation' if like my son he gets picked up; again speak with social services to find out who would be considered most approbriate in your sons case. In my sons I send in his CPN as I have told him next time he ends up with the police I am making a hot cup of tea first. My son is logged with the police as a 'vulnerable adult' so yes they do call me if they have to pick him up and he asks them to let me know he is safe with the police! He also has an ASD alert card on him. SS adult teams should certainly be able to locate a supportive hostel as an interim rather than have your son on the streets or driving you to an early grave.

How blunt an instrument would the test be? Could it distinquish between a person who has ASD and SLD's from one who has ASD an an exceptional intellectual potential? More research please.

Whole heartedly agree.

Sam and nativity plays always made me cringe, I knew how he would respond and he rarely let me down. The first year he was meant to be a snowflake and refused to be a snowflake as it was not school uniform and he was at school. The second year they asked if he would like to be one of the shepherds and he refused on the grounds he was a Sam not a Shepherd. The third year the school began to wise up and asked if he wanted to help by shining a torch at the star to make it look sparkly but he also went to a very good primary that deservedly won awards for inclusive practice. Nathan was awful. Even in his special school he needed at least one TA to help him sit with others. By the end of his very special secondary he was operating the pa system. The star of the show was a painfully shy lad who was wheeled on stage inside a box and half way through he managed to lit out his arm and hold up the star. He really wanted to take part but could not bear anyone looking at him and suggested the box so he could not see people and they could not see him. Wish their were more schools like it for other kids. With Annie the school does not make her take part or go on stage poor girl freezes and chokes; instead she has been allowed to make the stage props for the play whilst the rest of her class have rehearsed. I still have to go and see the play as Annie expects a report from me on how well the large turkey she has made from papermache looks to the audience and I know the other mums will want to know what role my kid played. I don't think there is an easy answer to any of this; I made the choice to go with what worked for each of my children and brazen it out with the other parents. Making them do something other kids enjoyed that either terrified them or they really hated just did not seem to be what christmas should be about.

Sam thought he would love it based on the trailers he saw, he nagged me ceaselessly to take him......so I took him to the cinema He started screaming after the first few minutes and could not stop, then began yelling NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO in terrified hysterics. Then he could not go to sleep for over a week until exhaustion finally laid him out. The poor kid has a scientific bent and went OTT because he could believe we would make such a mess of the planet and no amount of its just animation and all made a jot of difference. I must have one of the few kids who have made me promise NOT to buy the DVD ever. He is getting KungFu Panda at Christmas instead.

Sam loved Marble runs to death! Best marble run that is still in one piece and Sam has used hammered and re-used for years was made by Techno-gears. The boy is a maths and science geek so something he could constantly re-tweak to work better kept him happy for hours. Some of the other makes are in a more friable brittle form of plastic that cannot withstand Sam getting cross with them. This one could. http://www.marblemaniaextreme.com/ She may also be happier with boys toys like lego technic mecanno WH Smiths have a nice range of 'science museam' toys. I know because Sam and his dad found them and we left them to it whilst me and Annie ran off into the books. One thing to add, Sam cannot cope with 'surprises' he needs to see his presents wrapped and placed under the tree regardless of what they are. He still wants to rip the paper off on Christmas day like everyone else but the worry over what might me hiding in that paper is way to much for the lad to cope with.

Stella, I am so glad that someone is offering AJ something positive to help him. I also hope the supervision order gives him the space he needs to think a bit about what he would like to get out of life and more constructive ways of dealing with life. Sadly teens with ADHD and ASD do tend to end up in the youth justice service thanks to the mix of poor social skills and risk taking. Unlike SS they have some funding to offer help. {got to love budget restraints!] IF I have remembered correctly a supervison order is kind of halfway as it allows the youth justice to offer support to a kid whose struggling but who is not really a harded criminal. The idea is to give them one last big chance to get thier lives on track rather than end up being eaten alive in the adult system. Warrenpenalver- it is not that SS and CAHMS are incompetant it is just that child services are governed by thier own policies, their own very limited budgets and remain seperate agencies, youth justice is seperate too so unlike adult services that offer a combeined Mental health SS package you have to fight each individual service for what your kid needs. CAHMS tends to only be able to offer drugs for ADHD, SS can only offer for those most at risk of being harmed rather than causing harm and youth justice is the one who was goiven the funding. What is needed is a parity of services and better communication and a policy of interagency working together...and whilst I am dreaming....*sighs*

Have a look at Semantic Pragmatic Disorder and see if that makes you think of your son; its on the edge of the spectrum and whilst it does not 'fit' the DSM for Aspergers it is classed as a disorder in its own right. CAHMS will not diagonose unless they are 100% sure they have the right disorder. My youngest daughter has some of the traits, over tactile, collector of strange things, over friendly because she does not spot someone is not perhaps 'safe' etc; she also has an Ed Psych and we also did the dance through the system. I think because she does have two brothers who are in the spectrum people were willing to look at what she was doing over a period of time rather than dismiss her. She left with a tentative diagnosis of DAMP, she does not get DLA but it did help to access a lot of help in school for her. They thought Annie had dyspraxia but agian she does not fit the full criteria for that either. Bless her. Sometimes a kid takes a pick and mix approach to DNA and can present with a mix of traits from various disorders making it hard for doctors who have to use tick boxes to find some place to fit them. This is the support group online for semantic pragmatic disorder http://www.spdsupport.org.uk/ Annie was given the label of tentative DAMP because she did not fit anything well but clearly had many minor to moderate problems that cobeined caused her big difficulties in school just so we could prise extra help from the education authority who refused to move without a label.

It really depends on the individual child. Nathan tried mainstream as he was too bright for the ocal MLD secondary schools and the ASD one was way over subscribed and Nathan was far brighter than most of the others going.....he eventually tried to set the school on fire. Lots of case conferences later he was moved to specilaist school able to handle the explosive mix of autism and serious mental health issues. The mainstream school did everything to make Nathans placement work but Nathan is not really 'mainstream' and his statement meant 1 child, 1 classroom, 1 teacher, three assistants and a very small school. Sam moved from a special nursary in an ASD specific school to supportive mainstream and is now fully intergrated in a large secondary with Technology college status, he choose it over the much smaller grammer. it is also the same school Nathan tried to burn down. Same support is in place but with Sam it works. The best advice I was ever given was off another parent; go to each school your thinking of and see if you can spot a child who reminds you of your kid and see if they look happy to be there. Moving my youngest [has severe dyslexia and DAMP= disorders of attention, motor and perception] into a secondary school scares me the most, I am sure she is not living in the same space and time continuum and we have not a Steiner school or similar any where within traveling distance even though the authority said they would pay for neighbouring authority provision if I could find a suitable school. IF........ha.

Whilst hyperactivity is generally thought of as swinging form the rafters all day long as kids get older this can settle into 'fiddling' none stop The ADDISS website is worth a visit as is the Milton Keynes ADHD support groups. The impluse and risk taking it brings can be a real problem in adhd. ADD is differant- in Annies case it produces a 'space cadet' dreamer who struggles to stay on task with anything.

Stella, I do not think you can afford to back down, I guess the ODD combiened with the ADHD makes taking any responsibility very hard. It might be worth contacting the Challenging Behaviour Foundation as AJ has such a fiery mix of conditions, http://www.thecbf.org.uk/ Whilst the majority of their work is with severe learning disabilities they do offer support to parents of children with ADHD+++. Might be worth calling them so they can point you in the right direction. ADDISS may also be able to help as may 'Positive Parenting', some facilitors are trained to help parents come up with strategies for mind numbing behaviours from their little bundles of joy. BIBIC http://www.bibic.org.uk/ have some folk trained to give advice and practical ideas to parents whose children have 'behavioural challenges that impact on their education or ability to cope in society with law and rules enforcement' Hope that is of some help in a grim situation.

I guess it depends on the supermarket. Here they are all huge, noisy and over full with normal people behaving very badly. I do take my kids shopping with me occasionally BUT I go when the supermarket is quiter like after 8pm in the evening or 7am in a morning and normally during a weekday. Have an 'escape' plan in mind just in case it all goes to rubble; these things work best if we can set our kids up for some success.

What Mossgrove said.

Nathan recieved the higher rate betwwen the ages of 7 and 11 BUT he also had a maclaren major buggy toe walked and fell [dyspraxia] absolutely NO sense of danger bit people screamed constantly was suspected of having severe learning disabilities on top of the rather challenging behaviour. It was not just because of autism. It is not really a 'free car' you have to find the petrol and most hospitals charge disabled to park and a child's needs can change. I suggest the Disability Rights Handbook to find out what may be consdiered for higher rate mobility.

Sam used to do this a lot; he also used to walk up rise bolt upright and scream. It used to leave us more shaken than Sam who was normally fast asleep even when he had his eyes wide open. Make sure your son is safe and when he does settle back to sleep sounder go make yourself a hot drink and allow yourself a little TLC. I think we parents suffer more seeing a child with night terrors whilst the kids stay blissfully ignorant. You may find this webpage of help. http://www.bbc.co.uk/health/conditions/nightmare2.shtml In Sams case he was also an abysmal sleeper and now he is older he tends to sleep walk and talk, equally weird but not quite as terrifying as the scream in the night. If things are really awful it might be worth chatting with his consultant and asking for a refferral to a sleep disorders clinic for your own peace of mind and to offer real advice on managing this. Most kids do grow out of this but its horrible whilst it lasts.

Depends if your lad is hypo or hyper sensitive. Nathans is hypersensitive. His room is palest of lemons, same colour carpet, same colour bed and tiny little glow light plus hummungous sound system (well he is an 18 year old lad ) Sam is hyposensitive and oh boy he cannot get enough sensory input. His room is painted in a mix of brilliant neon green and the same orange they use in traffic hazard warnings. He topped it off with strips of reflective fabric, glow stickers, posters, ribbons, broken lumps of glass that he shines lights through, room sprays and he has to have the radio on almost all the time. Did I mention the bright red and purple fleece huggies he likes to curl up in.....I get a headache when I have to clean in there but it makes Sam very happy. You know Bim best, work out if he needs a calm room or a lively room then narrow down the colour choices.

The good news is I now know why Nathan has seemed so loud so irritating and why I have not had the energy to cope with him. The bad news is its atypical neuralgia that hurts like * and Sam has taken into his head he is going to look after me. help The really good news is the hefty duty anticonvulscents and major other drugs have notched the pain down to the point Nathan looks like a sweetie and I can cope with him again. Good job too as he is still in a leg brace and splint and on crutches at home. I darn't drive at the moment though.

I am an idealist....no wonder I keep lobbying for change.

Silly reporter. It is ADHD type behaviours that are linked to watching far too much TV, although having seen Sam in action him staying in the same room as the TV for long enough to have too much TV beats me. It is the normal kids displaying such ADHD behaviours get a lot better when they get some good TLC and attention from their parents.

Today.... Ended up at the dentist after spending last night wondering if I could pull my own tooth out with pliers...ended up having an emergency endodontic appointment on the tooth that has recently been crowned after I fractured it on a piece of grit hiding in the lentils...OW. I feel like someone has punched me in the face and this time it was not Nathan..... feeling like all I want to do is curl up in bed with a hot drink pain killers and get some sleep but Sam decided to have a meltdown over homework and annouced he is leaving school (again) taken two hours to calm him down so he can rest as I doubt the boy will sleep. Had to whip out the 'hotty bear' and the cold eye pack with the blanket over his head routine. Tomorow I have to get up extra flaming early as I have to take Nathan in to hospital for surgery on the knee he wrecked to rebuild the joint. He is not supposed to eat or drink from 10pm tonight and has not got a good grasp of time and I do not think I will have the energy to work with the staff on the surgical ward. [As a very vulnerable adult he is entitled to have his made carer in hospital to help with his communication and other needs. Not fair!] I wish carers could have sick leave. I have only just got shot of the effects of pneumonia that nailed me end of february and right now I could kill for some sleep.

I have to admit when things where REALLY bad with Nathan I thought the SW was a complete [insert word of choice] We had a case conferance at his hospital school; CAHMS, Rep from ed authority, school, ed psyc, Nathans SWAsssistant (lovely woman did all she could to fight his corner) and a SW acting for Social services. It was a huge meeting that took months to organise. Half way through the meeting there came sounds of a child exploding, furniture thrown, screams, yells from members of staff, fleeing children running down the stairs. I looked at Rich and he looked at me and went 'Nathan' at just the same time Nathans Teacher came in asking for back up from the head as she was trained to deal with extreme behaviours. It took her an hour to defuse the boy and arrange a trip to A&E for the teacher Natahn had kicked down the stairs. All through the * meeting all we could here was our son being himself as hard as he knew how and a social worker who was having a very hard time explaining that Natahn did not meet the criteria for social services support to other agencies. Freakin social services finally said his needs were 'complex' and that we should have one weeks respite every four weeks and the (!) used THAT as a reason to not pay their part of the residential school CAHMS, Education and his special school recommended. Nathan did not go to the school. SS could not find anyone to take Nathan including their special childrens homes; something about him being rather large and liable to be a risk to staff and other children. Nathan ended up being taken in by CAHMS at the regional unit as soon as his psychiatrist could get him a bed in a room on his own. I think for Nathan that was the best thing that could have happened at that point for all of us. I kept the letter from the director of said social services appologising for the complete cena cannis that was made of it all. His school and CAHMS faught long and hard and went through LSC with CAHMS funding to get his current special college placement. CAHMS were fantastic giving of their limited resources, we used grandparent back up too. Thank God for grandparents who help. It is horrible watching one of the statutory support services mess things up. LouLou, your his mom you love him to bits even if there are days you wish you could hand him over. I know that comes from pure exhuastion, concern for your other kids and being at the end of your teather. It sounds as if he has a good school. Is there anything the head could suggest that might help? If Kai has input form CAHMS contact them too.