100acrewood

Morning. They do say everyone has a twin somewhere I think 10 yr old may have found his. He displays as you describe. There is a lack of services I agree. Camhs have tried to help because a lot of my son's behaviour I'd related more to anxiety but the best help I have found are local parent led groups who have children with additional needs. We meet up and talk it out and share experiences and helpful hints to help reduce sensory overload. I know it sounds random but when someone told me that by taking talcum powder with to a beach you can get rid of all sand everywhere easily as it drys when it removes the sand you don't get that scratchy wet feeling. It has east this summer we have been to the beach 7 times. So much is unpredictable and so I have learnt to accept what I can't predict and gradually work on what I can. I take mine swimming nearly every day because he loves to float and spin in the water. It apparently helps them to gain balance and answers sensory needs it has helped because whilst he is there I can relax. A lot of my son's rages are related to his frustration with school I am on the ehcp path now and although my son is high functioning I know a special school will answer the environment issues that mainstream never can. He loves his tablet and eating too. When it gets towards evening time I turned all lights lower and turn loads of to reduce overload then again bath time give him half hour to just float etc it reduces the outbursts if they begin in time length. I hope you do find some groups near you. I know.little miracles has a few groups in different places and if not then maybe reach out in your local area and arrange a coffee morning. I do feel you but please always remember to look after yourselves so that you are stronger to deal with what comes. Xxx

I reckon having some fiddle toys could help or putty that he can have only when he goes to places with you. http://www.exploreyoursenses.co.uk/autism-toys.html?p=13 is a good source of a good range of stuff xxx distraction is my only idea really.

I reckon having some fiddle toys could help or putty that he can have only when he goes to places with you. http://www.exploreyoursenses.co.uk/autism-toys.html?p=13 is a good source of a good range of stuff xxx distraction is my only idea really.

http://www.exploreyoursenses.co.uk/autism-toys.html?p=13there are some pink red or blue ear defenders on this site on sale hope this helps

Oh and my son is 9 also

I am living this scenario right now and in fact my son and i are attending a family residential unit at present for 8 weeks. Part of the plan of care from the professionals is to adopt a method called 123 magic. The best thing to do is to purchase the dvd or book On Amazon And Judge For Yourself. It's simple and works for all kids aged 2 -12 no matter what additional needs or not. Have a try hun. The key is consistency once u start don't stop and be seen to do with all kids x

Micheala. So sorry to hear about your cousins too x

Thank you Micheal. Gemt08 have been thinking of you. Let us know how you both are. And any progress with getting help. One thing I would say. You can bypass any gp by going to a and e. CAMHS will see you no matter what and he cannot go home without a plan of action in place. I know this only from experience. Unfortunately limited resources mean bigger journeys but we have a choice in mode of transport. Xxx

I feel your pain gemt08. My son too has sobbed begging to die. He searched through draws for knives and told me his voices tell him bad things. Before he would say he would tell them no but now told his support worker he finds it harder to ignore them. He has become violent and told me the voices tell him to murder me. Camhs haven't been an amazing help because I too believe they are not his imagination. He also hallucinates day and night and has told various people lots of things he has seen. He thinks he has demons inside him and calls his voices angels and demons. He has started to be philosophical about God. Because of his age I was dismissed. However he has been consistent and as a result we have been referred to a family unit for further observation. We go as a family for 6 weeks. I want to stress there is help out there. I would recommend calling the camhs duty workers every time u are worried. Even if he hasn't been seen by camhs if a referral has been sent you have every right to contact then directly. Don't be deterred If his file is constantly being pulled from the bottom of the pile to the top they cannot ignore. Go to a and e every time u feel he us unsafe. I always believe low risk is not no risk hun. Hope he feeling safer now x

Can I ask what are his beliefs. How does he describe the voices. I can totally relate to your situation . My son has only just turned 9. It has been a long road. He first disclosed hearing voices to me when he was 7. I was told schizophrenia wasn't a possibility because he is not psychotic but as time goes by he is changing before my eyes. I have family who are schizophrenic so you can understand my concern. He has recently been diagnosed with atypical autism but the diagnosis needs further investigation and observation apparently because his adi r scored so high but ados low. He had extreme anxiety too and camhs keep saying to him the voices come from his imagination and so are using distraction methods which do not work. Whilst building his minecraft platforms in his head he now tells me the voices are worse but now won't tell me what they say.

Now that I have has time to digest yesterday's feedback following his neuro assessments I feel I can ask if anyone else has had similar. He apparently didn't score so high on his ados but very high from adi r for autism so was told without doubt he is autistic but possibly atypical. They were more concerned with his anxiety level haĺlucinations and aggression etc quite right too. They had a list of referrals but the first did shock me. 1. Residential family unit for all 3 of us ( gulp) for 6 weeks. Very intensive. Has anyone done this before ? Will have to wait for a space. They could further his diagnosis and clarify his autistic status SPD. OCD. anxiety, poss depression, sleep disorder 2. Neuro referral query epilepsy because he hallucinate colour changes? 3. OT but none in my area. 4. Camhs key worker 5. Social worker. Someone I had asked for in past but not taken seriously.. Quite a lot to take in

Oh and you mentioned asking who else I could refer him to at the ados. They didn't speak to me. I was left in waiting room. Very proud he went on his own but proves in my eyes the theory of separation anxiety from me is not true he is just afraid of being anywhere physically alone. Even if another child is with him. He wants adults around in case he hallucinate. He did tell me he told them in the meeting he hears voices and sees things but he said that today was all about enjoying himself

Oh and you mentioned asking who else I could refer him to at the ados. They didn't speak to me. I was left in waiting room. Very proud he went on his own but proves in my eyes the theory of separation anxiety from me is not true he is just afraid of being anywhere physically alone. Even if another child is with him. He wants adults around in case he hallucinate. He did tell me he told them in the meeting he hears voices and sees things but he said that today was all about enjoying himself

Thank you Sally44. I am still fighting for further referrals. I had his parents evening last Thursday. On his IEP it states further services needed as outreach and ot but no sign of either. It's was quite enlightening. They can now "tell" when he needs time away because his face goes blank. Time Out is 121 time to talk with TA. This is now added in iep. He doesn't go to assembly. He spends time helping teachers at lunch. He has now been given ear defenders and apparently they leave him to chat because they think it's better for him. They described any format of test as petrifying to the point he freezes and although very bright doesn't perform to his ability. He now does not read aloud or at all unless an adult is sat next to him. I said this sounds like the ed psych needs to come in asap but no response. I have been asking gor ed psych for my rldest to as due gor reassessment on dyslecia profile. Again no joy. School still waiting for assessments to be done. Friday I was the taxi driver for his ados. All that was said was he took part in everything and see you on the 9th March. Since Friday ( maybe a coincidence) he has had 3 nose bleeds bad tummy ache and not eaten telling me his tummy feels like it's been spiked and fitfull sleep. He hasn't been at school. However feels better today. I have finally got the camhs appt for tomorrow. They seemed reluctant because again said they should wait till after assessment even though in hospital I was told he will be given a camhs key worker. Well adi r on Mon and camhs tomorrow. 😯

Hi thank you for replying. Camhs have pointed to a strong possibility of asd. And anxiety disorder maybe related to ocd or ptsd and also pretty sure of SPD. He has auditory and visual hallucinating. He is now under camhs and neuro to assess. It's been a long wretched journey for a could of years but he suddenly shot to top of list when he saw camhs. I think they try the waiting list cure for all referrals hoping the majority do not require assessment as time goes on but for my son he has just become so poorly and anxious. It's a positive step tomorrow for sure but definitely so much more to do. .... what things are a seemingly clever 8 yr old likely to expect from tomorrow. He has already had 2 melt downs tonight worrying about it.

This is true. The appointment after is with the consultant and states feedback on the asd assessment? _ parent only.. and they are a consultant within the neuro developmental team so I guess a psychologist? Is this normal part of the process. Maybe they won't do anymore if they strongly believe from ados and adi r that he isn't ?

Only 4 days to go. Worried my son (8) may slip through the net. I have my adi r on the 9th March then apparently a meeting straight after with the consultant for a diagnosis? No visit to school no questionnaires and no OT ED PSYCH or SALT have ever seen him and yet just like a diagnosis? What are everyone's experiences and does this seem right. It was camhs and the school and gp who referred him. Is this enough?

Thank u for asking Arctic. I have done everything to keep him occupied and we went to friends for most of day who is more understanding than I thought. So we had a better day. But with a few glitches. I am counting down the days to ados. Which is a week tomorrow. The support worker was amazing cos actually said everything I have done so far has been perfect and he can clearly see they are loved and they love me. Amazing for someone to see this. It was a comfort. I am going to chase camhs again tomorrow. ☺

Artic thanks for the reply. The list of things you see and hear seem to ring true for him. Although today after seeing the beginning of a music video he said he saw people who jump scared him appear out of the ground and keeps seeing faces in the TV. And just appearing out of nowhere. We had a half hour of panic and anger. Not as bad as usual. He also heard music and whispering but no one in particular this time. Still trying to quiet him down with bath and supper but still on edge. Other times he describes a voice of a 30 year old man. He's angry and gruffly ( his words). Everyone just wants to wait till ados and adi r done.am on stand by tonight if he goes into any panic fear mode I will be taking him to a and e. Did u find that when other people spoke to you about things you could remain matter of fact and calm.

Sorry meant separation anxiety

Sorry meant separation anxiety

Thank u for reading about this xx he has no medication. They do not want to give him anything. Even to help him sleep. Till the ados is complete. In total he has seen camhs 3 times as emer appt with quick assessments once when he first told me he hears voices and sees things. A year and a a half ago. Then just before Xmas when he was top listed for neuro but they felt no camhs input needed even when he sat there a quite clearly told them how he had thought about killing himself. And what the voices tell him to do. The nurse peactitioner told me he didn't think he was psychotic. But needed urgent assessment. My son is so calm and collected when he meets them ? And lastly in hospital. No psychiatrist has even thought this urgent enough to see him. In fact apart from a name on paper I almost believed they don't exist. They are so far out of reach. It's half term. I am just managing each day as best I can. As I always do. I am dreading tonight. My mum had my boys to sleep last night. He settles better in her bungalow but now he is home to sleep. I just feel that all this is downplayed all the time. The last time he was seen the letter tried to focus on sprration anxiety. Trust me my son doesn't have a problem speaking. He is just scared to be on his own

They are the same intensity at school and at home. He first said he was hearing and seeing things a year and a half ago but said he had done for some time. Then was scared to keep talking about them. It's only just before Christmas that it all came to light again when he had he also has said he doesn't want to be here anymore and wants to kill himself. He said he bangs his head against a wall to stop the voices. The voices do tell him to do awful things but he tells them no. He is so frightened to be on his own. He feels something is out to get him. The stairs are his biggest fear. He feels people are coming down them to get him. We live a very restricted life in the house. He is very aggressive and angry but suffers a lot of panic attacks too.

I have been trying to rack my brains for a long time a out the things he does see. They are not things relating to what he has previously see or known. For instance. He Was running the tap for a drink at school and he said the water was red. When he asked someone they told him don't be silly. When he liked again it was red and so went without drinks for a few days. He also offer saw women pushing pushchairs in the playground at playtime. All the kids wee running through them but when he tried they were like brick walls. He also sees 3 shadows start in the corner of his room creep up and over him blocking out light. He here's 2 sorts of voices. He calls them demons and angels. The demons tell him to do dreadful things. Camhs believe it's sensory but it just doesn't feel right to me. There are a few peeps with schizophrenia on my side of family. All female though. He does fit the bill for SPD and poss ASD.

May I ask how old you are. The reason I ask is my son is due to have an ados at the end of the month. He is 8. He is very explicit about the things he hears and sees. I would love to know what it is u see and hear. He suffers extreme anxiety as a result. Camhs tell me it is too rare to be schizophrenia and more likely sensory but the voices are outside his head and the hallucinations anytime anywhere and no actual explanation .....