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Ask a Behavioural Support Practitioner

GinaSGinaS Member Posts: 79 Listener
edited April 9 in Guest blogs
Hi, my name is Gina and I'm working as a Behavioural Support Practitioner with adults with learning disabilities, autism and challenging behaviours in the NHS.
My role involves conducting functional assessment and analysis of challenging behaviour, devising positive behaviour support plans, training staff teams and carers and - the most important for me - challenging bad practice and advocating for the people that are a challenge for their system.
I hope to be able to offer general advice drawn from my experience. I can help you with questions you might have about behaviours seen as challenging, as well as ways to manage them using positive behaviour support strategies


  • jdodgeonjdodgeon Member Posts: 2
    i support three young adults in their own home through a personal budget from the local authority. one of our young adults who is autistic 'hones' in on a female support worker to the point where he makes their employment unbearable because he demands so much of their attention, and when he doesnt get it, will go into meltdown. how can we deal with this situation. thank you.
  • NicolaPNicolaP Member Posts: 1
    My son is going through a dreadful stage at the moment. If he's rejected in the park (by other children he wants to play with), or challenged in some way he is shouting 'idiot', or 'i will kick you/kill you'. I have no idea where this is coming from. If I also say no to something he kicks off and has a huge meltdown. I try to speak calmly to him but that doesn't work. Any ideas please? he is 6, developmentally around 4 years old. Thanks!
  • geryongeryon Member Posts: 1
    Just been told a Boxall Profile was done on my child (age 12) at school last Sept and results of a follow-up one are due soon which we will be told about. Daughter has severe learning disability and statement of SEN but don't think she has behavioural issues or had a lack of support in her early life which seem to be criteria for this test. So why would it be carried out and why without our knowledge?
  • GinaSGinaS Member Posts: 79 Listener
    Hi jdodgeon, what exactly is the young man doing to get this person's attention? The general advice we give is, if you know what person wants just give it to him without having to display the behaviour. For instance you can schedule some 1:1 time with him and remind him that he's gonna have a chat with you soon. The use of a picture/symbol for 1:1 time, as well as a visual timetable so that he knows when this time comes will help!
  • jdodgeonjdodgeon Member Posts: 2
    thank you gina. i will share this with the staff, although have to say we are doing that at the moment. when he sees NF coming on duty, he gets all excited and when she arrives wont leave her side even though she has to give some attention to one of the female service users for personal care. we dont think it is sexual, just very very intense.

  • DannyDanny Member Posts: 1
    Hi, my son, Ben, who is 16 is on the autistic spectrum as well as being a special needs child. Ben has language and can have a conversation with another person, though his language is limited. Ben is verbally repetitive and can repeat words or sentences for up to 10 minutes when conversing with another person. He targets his mother and it can become quite distressing. One thing which doesn't help is the ambiguous language which is used when Ben requests something. Rather than a yes or no there are occasions when my wife says maybe or might be. This results in Ben repeating these phrases if he doesn't get the answer he wants. There are occasions when he doesn't accept no as an answer and it can be very difficult to stop him repeating. On these occasions he will use the ambiguous language and we have to still tell him no. It develops into an argument between Ben and my wife. Any help would be welcome, for Ben and for us, thank you, Danny.
  • MaroullaMaroulla Member Posts: 1
    Hi Gina,
    A big welcome.
    There do not seem to be any organizations in the Camden borough which offer a befriending/carer/volunteer service for adults with Learning Disabilities in the Greek speaking language. This is for persons with very limited English speaking skills who require and prefer to communicate/socialize in their own (Greek) language as a way of outreach in the Camden community and to preserve local traditions. Any ideas welcome.
  • GinaSGinaS Member Posts: 79 Listener

    I just want to thank you all for the warm welcome!

    --> Jdodgeon: pass this info on to the staff and let me know what they think and how it goes

    -->NicolaP: although he is quite young it might be a quite good time to start some work around emotions with him. Have you ever used a social story? Some children find it hard to express their emotions, especially when it comes to anger or frustration. Maybe use some simple pictures and try to label them with him. Use some of the examples of his everyday life and teach him alternative ways to cope with them. I'm aware is not as simple as it sounds!! Does he get any support at school about that?

    --> Geryon: I need to be honest, I'm not very familiar with children's assessment tools. Having a quick look at it, teachers use it to understand pupils' behaviours and sometimes, underlying anxiety issues. I think I'd probably be curious and open with the psychologist/teacher who administered that, questioning the reason why they did , but also what's next. Sometimes these tools identify strengths and help professionals and carers to design interventions and come up with creative ideas, tailored to the person's needs.
  • AlistairAlistair Member Posts: 104
    Hello Gina, looking at the posts so far you are going to be in great demand!
    I am sole carer for my 13 year old daughter who has just been given a diagnosis of ASD.
    She has moderate learning difficulties and can display very challenging behaviour (she likes being a teenager!).
    My question is about clothes ripping. She is tearing off her pants and she has torn up four school shirts and several pairs of trousers so far this term. I am awaiting a sensory assessment but would really like to know how to help her now.
  • GinaSGinaS Member Posts: 79 Listener
    The strategies you can use will depend on what you think is motivating the repetitive questioning (function of the behaviour).

    If the function is information seeking a simple strategy could be to write the answer on a piece of paper and simply refer to the paper each time the question is asked again.
    Another idea is to set a limit on the number of repetitive questions that can be asked. Outline the 'rules' for Ben and explain the options. Let him know that he can choose another topic in which case you can keep talking with him. It may help to offer a few choices of topic.
    Another option is a pictorial story board or a communication book to help him change to the appropriate topic. Redirecting to another topic is important as the positive aspects of the interaction with you/your wife/others are maintained.
    Also I was wondering if Ben could be demonstrating his knowledge, reverse the question to see if he can answer it?

    If the repetitive questioning is caused by stress or anxiety, see if the underlying issue can be addressed. Was there any change in his daily routine that are upsetting, or a new change coming up?

    These are some very generic ideas but if you receive input from a Speech and Language Therapist (SaLT), they might be able to offer more help and introduce alternative ways of communication too (other than speech). I understand that this must be really hard, but minimizing the ambiguous answers will also be essential.

  • GinaSGinaS Member Posts: 79 Listener

    It's been a while since I've been trying to create links with greek community in North London as I'm greek as well!! Unfortunately I'm not aware of any services in Camden but I'm quite happy to be involved in creating a group for greek adults with learning disabilities. Maybe you can send me an email or personal message to discuss this further?
  • GinaSGinaS Member Posts: 79 Listener
    hi Alistair,
    I will try to do my best and respond asap but sometimes it might be hard since I'm working full time and I spend a large amount of time making visits in the community!!

    I'm working with a person at the moment with the same behaviour; I think having the sensory assessment is going to be very helpful. This will indicate if your daughter is hyper or hypo sensitive to particular clothing or materials. I know people who reduced the frequency of that behaviour by wearing loose clothes; in that way they don't get this annoying feeling by the clothing material. Is she tearing off only the school clothes??

    What seems to help the person I'm working with, is engaging in an activity where she's able to rip and cut clothing and fabric. When someone sees her trying to rip her clothes, she is directed to a 'box' we've purchased. This box is full of different types of fabric and she's allowed to either cut them or just play with them. We've gradually seen a reduction in her behaviour.
    I'd suggest trying that and see if it works or not! It might be more successful if you also engage in that activity with her.
  • AlistairAlistair Member Posts: 104
    Thanks for your quick response. She rips home clothes as well, at least a T shirt a week. At school they are trying the straegy you suggest and I'll try and introduce it at home. Thanks (I knew you'd be busy!).
  • GinaSGinaS Member Posts: 79 Listener
    They might already be doing that, but ask from the school to start recording the frequency of that behaviour- just to make sure that this strategy is working, otherwise we can think of sth else!
  • rosesandnettlesrosesandnettles Member Posts: 4
    Hi there.
    Good to know I can ask a difficult question.
    How can I manage my 16 old son's behavior?
    He has ADHD, and I am disable myself, so it is very difficult to try to control him, for example, send him to school proves to be impossible.
    If he doesn't want to wear his uniform and he'll just go out to the streets, what can I do?
    The situation is affecting my family life.
    My relation with my elder son is affected because he cannot tolerate the shouting and disrespect of my younger son.
    I've been advised I can apply for a council flat for my 16 year old, but I am afraid he would behave even worse if I tell him just to go and live on his own.
    Please help me with your advice, because I am absolutely lost at the moment and don't know what to do.
  • GinaSGinaS Member Posts: 79 Listener
    it does sound like a very difficult situation. What exactly is he doing? I understand that he doesn't want to put his school uniform on or he doesn't want to go to school?

    Depending on the difficulties your son experiences, as well the impact of ADHD, he would benefit from some input from CAMHS or a specialist ADHD service from your local authority/NHS trust.
    About accommodation, it's hard to say. Do you think he has the capacity to make that decision? I apologize if I bombard you with questions, rather than providing an advice but I'm trying to understand the situation first!
  • rosesandnettlesrosesandnettles Member Posts: 4
    Thanks for your prompt response.
    I'll try to explain his situation.
    He is absolutly opositional. Doesn't want to go to school, because his situation is very difficult.
    His behavior has taken him to esclusion more than too many times and there he finds an enviroment absolutly hostile at school and wants to put an image of " tough boy " in front of his peers.
    He used to be a very good and sweet boy until he became part of a dificult group of friends, and now, he fits perfectly there.
    He tries every trick in the book to avoid going to school and lies are part of his daily reality.
    CAHMS sugested to let him do whatever he wants for him to realize the extent of his behavior, but near to GCSEs is a very bad timing, so | still insist on homework, revision, etc.
    I don't know what to do, because his behavior affects the whole family.
  • GinaSGinaS Member Posts: 79 Listener
    hi, it does sound like he's a hard teenager to control. I think sometimes, especially young boys, need to feel they're in control and not follow their parents' advice - be a rebel! Do you think that it'd be possible to make a kind of "agreement/deal" with him, ie ask him to do the revision/homework for a particular time and he will get something he wants from you. So you both get what you want from each other!

    I can imagine that he's also having some difficult time at school too, what about liaising with his teacher? Would he be willing to speak with someone? Also, ADHD might be difficult for a teacher to manage if they don't have specialist knowledge, CAMHS might be able to help the school and offer some training and advice.

    I'm sure that you've already been doing that, but try to speak with him too, see what his own plans are about his future, GCSE, etc. Is he happy with the life he's leading right now? I can understand that this sounds very difficult situation, but you might need more support from CAMHS but also from his tutors too. I think that he needs to feel truly supported by his family, especially if he has negative experiences at school.
  • bun107bun107 Member Posts: 2
    Hello Gina
    I have a lovely son who is 8 years old. He has epilepsy, some brain damage (acquired as a result of prolonged seizures lasting >2 hours between the ages of 2 and 3 years). This has resulted in damage in his termporal lobe - the area of the brain that deals with concentration, learning & attention span and memory function! He has traits of Aspergers! can be very literal, finds it hard to pick up on social cues or understand body language of others.

    After a really stressful first year at school where we had to FIGHT for assessment, support (!) etc he started to soil himself (after having been clean and dry for a year and a half!) CAMHS said it was down to stress and the lack of support from school.

    The worrying thing for me is that the soiling is now a HUGE issue. We moved his school and he got all kinds of support he never had in his first school - he has friends and is happy, we've had all kinds of physical examinations and mental health CAMHS involvement but he still soils himself.

    My lovely son can't see that the older he gets the more of a problem the soiling is! I am really worried as going out to activities is a problem as it means that we have to go with him - he is never invited to anyones house (understandably) and i'm concerned that if we can't get to the bottom of the problem it will go on forever.

    He says he doesn't like soiling, and that he is sorry, but despite all kinds of things like star charts, good behaviour incentives, asking him to wash the soiled pants! etc nothing seems to work.

    CAMHS think he can't control his soiling, but HE can, there is no rhyme nor reason. At school it seems to follow a pattern of once he's out to play at playtime or just after his lunch he has an accident.

    I've contacted ERIC and tried their suggestions but it seems to get better for a while then returns with a vengance. Last summer he had only one accident in six weeks but on the return to school - it was a completely new teacher to the school and her way of teaching was quite different - he has found it a struggle, thus soiling a lot - sometimes to get out of things!

    sorry for such a long message but i really cannot see any light at the end of the tunnel
  • GinaSGinaS Member Posts: 79 Listener
    thanks for taking the time and giving these details, it's really helpful. I can understand how this situation affects your son and yourself as well.

    I would like to explore one of your last sentences "soiling, sometimes to get out of things". If you've observed a pattern of him soling when he wants to "escape" from a situation (for whatever reason),maybe teaching him how to express that need in an alternative way could help? For instance, he could have a "break card" and present it to the teacher whenever he wants to leave an unpleasant situation.

    I would also ask the teacher to keep a record of the times he's soiling, you might be able to find another pattern of his behaviour. What does he usually get after he soils himself? If you can identify the times where soiling is most and least likely to happen, you can intervene and maybe help/train him and the school to pick up on the signs that precede soiling and manage to prevent them.

    During summer, you said he only had one accident in 6 weeks! That's great - so what was happening during these 6 weeks? Was he on holidays? It does sound like changes might make soiling more likely to occur.

    Have doctors ruled out the physical causes of that behaviour? I'm wondering how CAMHS reached the conclusion that he can't control it.

    Now, if it is caused by stress and lack of support from school that is another big issue; if he does have concentration difficulties, as well as Autistic traits, the teachers would need to adapt more in his needs in order to reduce his stress at school and support him more effectively. Creating opportunities for success might help and also consistent school environment and avoidance of changes.

    He had made it for 6 weeks in the past so the light might not be as clear yet, but you know you will be able to see it again!
  • rosesandnettlesrosesandnettles Member Posts: 4
    Hi. Its me again with the same problem.
    We had tried to be as loving and understanding as possible, but my son's atitude has changed so much, that is hard to recognise my lovely son in this tall and angry faced boy i see from time to time, because he prefers to stay overnight with friends or at his girlfriend's house; this makes comunication more difficult and now, his studies are seriously affected.
    Sadly, the school has never helped, but all the opposite, because they don't consider adhd as a problen but something my son is able to control, so instead of giving him the help needed, he has been excluded too many times and put in a place that is difficult to retourn
    Revision is ignored, course work is in tatters. I cannot negociate, because " He doesn't need anything and he doesn't want anything either" as he said.
    What can I do????????????
    Thanks for taking the time to listen.
  • GinaSGinaS Member Posts: 79 Listener
    hi, it does sound a difficult situation for the whole family - thank you for sharing this with us. It's really sad that school is not supportive, I'm wondering if an external professional could help, you mentioned speaking with CAMHS, could they offer some more practical support to you and maybe the teachers? Some people might say that he's just going through teenage, but I'm wondering about the impact on your family life.

    I'm also curious if other parents have been through similar situations and if there are any ideas about what have helped them and their teenage son/daughter?
  • rosesandnettlesrosesandnettles Member Posts: 4
    There has been some changes in the family.
    My son is living at his girlfriend's house with the permission of her mother - I don't agree with this, but my view has not being taken into account-
    I'd tried to contact the mother without succes and now, my input in my son's studies, or behaviour in none.
    He feels this girl's house is his, and when comes home is to collect clothes or whatever he needs at the time of night he considers appropriate the strugle appears inmediatly.
    I don't know how to comunicate with him; please help.
  • GinaSGinaS Member Posts: 79 Listener
    hi, it does sound very difficult. What I hear from you is that you want to "have your son back". I believe that small steps are needed, one at a time to try and build this relationship with him. What about approaching him in his girlfriend house and being quite positive about his move and try maybe to get a bit more involved in his "new" life? I guess that his girlfriend has now an important role in his life, so building a good relationship with her too might be reassuring for him. You said you've tried to contact her mother, what would you like to tell her if you were able to get hold of her? What do you think would be helpful?
  • mazzymmazzym Member Posts: 12 Listener
    Hi Gina

    My son has just turned 18, he has a chromosome disorder and no communication.He also has epilepsy.

    He broke his ankle and foot in November 2011. I don't know if that is relevant or not but basically since he recovered he has started seeking out paper, any kind of paper, newspaper, catalogues, card, he is tearing some of the pages and liking the sound.
    He has never shown any interest in any paper of any kind until recently.

    I am quite worried about him, as it will keep him quiet for ages and of course he wrecks everything, it is very difficult to keep it out of his reach and hide every single piece of paper.
    I think something is going on in his mind or he is doing it to cover up pain or something?

    He never cries, never has and when he broke his foot we didn't know until I saw how badly his ankle was swollen.

    Do you know what this behaviour means and is then anything we can do to stop it?

  • GinaSGinaS Member Posts: 79 Listener
    apologies for the late reply but I was away and had no access to the internet!

    I understand that he is non verbal, how does he usually communicate pain? Is Speech and Language therapist involved? Does he generally use gestures, signs, Makaton or any pictures/symbols?

    My first thought is very similar with yours; this behaviour might be a coping strategy or a way to communicate pain. However, it's difficult to say.

    Have you noticed if he tears the paper at any particular time, ie meal time or in the evening? What about when he is out, for instance at school or just for activities? Also, you said he likes the sound of it. Do you think he would still enjoy it if you for instance tear a piece of paper?
  • mazzymmazzym Member Posts: 12 Listener
    He doesnt communicate pain, we dont know when he is in pain.
    he cannot sign or speak. he has no gestures or any communication whatsoever.

    The tearing paper has only started since he recovered from a broken foot.

    he is attracted to paper wherever he is, school or home where previously he didnt go near it.

    he will pcik it ups at anytime of the day

    I am at a loss to understand why he is doing it
  • GinaSGinaS Member Posts: 79 Listener
    I think he'd benefit from some help from Speech and Language Therapy (for communication) and OT (if it's sensory).

    He might be in pain or this might be a coping strategy he developed after the broken foot. However, if it is sensory (so he likes the "sensation" of tearing paper, perhaps the sound or feel of it, or the sight of it fluttering) you might need to think of an alternative that would give him the same feeling/sensation.Also, how about storing up appropriate ripping material and allow him for a particular time period to do that? You can use an egg timer and limit the time you allow this. You might need to have a preferred activity in mind to engage afterwards (so that he is motivated to stop)

    I'm sorry I'm not that helpful, I'd love to ask you loads of questions to understand what's happening! But I think a further assessment might be needed and I'd ask some help from school and community team for further input.
  • Hello. My 12 year old grandson has autism, intellectually challenged, cerebral palsy, multiple disabilities, speech impairment and learning difficulties. He is very lovable and gentle, just out of the wheel chair and walk a few steps without support. Never aggressive or hurtful - assessed 100 % disabled.
    The more difficult problems we face are:
    1. Does not like to leave the bed in the mornings
    2. Does not know to spit out the paste after brushing
    3. Extremely difficult to have his hair and nails cut
    4. Resistance to going out or coming in (cries a lot on both occasions).

    Any suggestions please ?
  • GinaSGinaS Member Posts: 79 Listener
    I'm sure your grandson is gentle and lovable but sounds that he'd benefit from lots of specialist support! It's hard to make suggestions without knowing him but I will try to make some helpful "comments" in relation to the challenges you mention:

    1. Does not like to leave the bed in the mornings
    Showing him a picture of what he is going to do might "motivate" him to get up easier? It's hard to say to be honest, because I find it difficult to get up in the morning too! However, if for instance he's having his favourite cereals/breakfast show him a picture and prompt him verbally to get up. Also, establishing a morning routine can be very helpful; people in the autistic spectrum are really good at following routines and helps them to know what is happening now and what is next. Ie could you wake him up with his favourite song and then bring his cup of tea near the bed?

    2. Does not know to spit out the paste after brushing
    Is he able to spit out water on a different occasion , other than brushing his teeth? One suggestion is to break down the activity of brushing his teeth (depending on what he can do independently and what he might need support with) and prompt him to complete each step. Maybe someone could do it alongside him and demonstrate how to do it.

    3. Extremely difficult to have his hair and nails cut
    This is something common in people with autism. One of the reasons might be because of the sensory difficulties, ie what he feels (maybe pain?) when he is having his hair and nails cut. I think in a previous thread we shared some useful ideas, including using clippers instead of scissors.

    4. Resistance to going out or coming in (cries a lot on both occasions).
    It sounds that he might find transitions difficult to manage; again I would recommend having a pictorial "now-next" reminder/timetable, so that he knows that the activity/task he was doing is finished and something new is happening next (ie time watching TV finished and now is time to go out).
  • EmmaEmma Member Posts: 88 Connected
    Could I also jump in here and say do take a look at Netbuddy's tips sections on nails, hair and teeth, as well as all the tips we've got on behaviour, routines etc. You may well find some useful ideas you can either try or adapt to suit your grandson.
  • mommy3tmommy3t Member Posts: 6
    My daughter is 3 an has yet to be formally diagnosed we get results n 3 weeks but she has a habit of attacking her siblings n the car an I can't seperate her due to the size of my car an I can't afford a new one. She also has pica an rips off his toe nails an eats them. Any advice to keep her from hurting the other children?
  • GinaSGinaS Member Posts: 79 Listener
    it's interesting that she's "attacking" her siblings in the it only happening there? Where exactly does she sit while in the car?
  • mommy3tmommy3t Member Posts: 6
    No she dose it everywhere an to almost anyone if u make her angry or if she feels like it she will hit, bite,kick,scratch,spit,pinch anything to make the other child cry. She sit in car seat by the passangerside door.
  • moragmorag Member Posts: 1
    I have a 3 1/2 year old that has numerous social/sensory problems, some that she has overcome and some that are ongoing. The main problem just now is that she refuses point blank to sit on a potty or toilet. She knows and tells us if her nappy is too wet or if she has done a poo but gets so upset at the mention of "being a big girl" and trying to sit on the potty. we have tried numerous times taking her nappy off and just wearing pants but it is upsetting her too much. Psychologist/ health visitor and OT all just keep saying sit her on it as often as possible but the problem is not her understanding of going to the toilet but the fear of no nappy. Am at total wits end!
  • EmmaEmma Member Posts: 88 Connected
    edited September 2015
    Have you tried sitting her on the toliet with her nappy on? There's a tip in our toilet issues section where a netbuddy has found this successful. Take it in small steps - just being in the bathroom wearing a nappy to do a poo first, then actually sitting on the toilet still wearing nappy and so on.
  • pinklisa2010pinklisa2010 Member Posts: 7
    Hi i wondering if you can help me? i have a son that is 3 1/2 he was born 15 weeks early he has GDD, serve language delay hyper mobile joints sensory issues feeding issues etc. What i am asking is that i think my son may have son ASD he has a lot of traits but not all i had a look on the NAS website at their red flag list and he meets 17 out of the 26 on there. But im not sure whether the assessment process will pick these issues up as some are very subtle. Also he appears very social at times will point at objects, get people to do things for him, very smiley and happy at school and at home loves interacting with his family and fairly good eye contact. But at birthday parties he cant handle the situation at all he will cover his ears and even fall asleep if he cant cope he hates going out for meals as he finds it hard to sit still he likes being able to run around alot. He likes routine and will get cross if we don't do the same things in the park or drive where he is expecting. He plays along side children but not with and is happy on his own. He loves books and will wake up in the night to look at them. He flaps his hands and shakes his head toe walks when excited etc. i guess what im asking is how do i make sure that they really see his issues as i don't want him to fall through the cracks thank you
  • GinaSGinaS Member Posts: 79 Listener
    apologies for being quiet but for some reason I didn't get the notification that there was a message on the forum and it just happened to check now!

    I will get back to you all asap!
  • GinaSGinaS Member Posts: 79 Listener
    Hi pinklisa2010,
    I understand that you want to make sure the professional who does the assessment picks up all the issues you mentioned above. I believe that he/she (I imagine it will be a Psychologist?) will conduct an interview/ have a very detailed conversation with you, and you will be able to share all the concerns re: sensory, social interaction, etc.

    I do understand your worry, but in order for clinicians to give a diagnosis they will have to ask you loots of questions, and I believe you will have the opportunity to give enough information for them to decide if your son is in the Autistic Spectrum or not.

    My opinion, after having worked with adults, is that the diagnosis can be sometimes helpful in order to access services in the future. However, it sounds that you have identified all the needs your son has and working closely with professionals you will be able to provide your son with appropriate help! Let us know how it goes!
  • pinklisa2010pinklisa2010 Member Posts: 7
    Hi Gina

    Thank you for your reply

    Harley is going to be starting on the assessment pathway in the new year maybe a bit sooner, which i'm really pleased about even if it turns out that he doesn't have it the multi assessment will be really good for when he starts school next year. I am pleased to hear that i will be able to tell them everything. We are seeing a ASD support worker tomorrow so am hoping she will be able to help with his behaviour. I will keep you updated. Lisa :)
  • JimJamsJimJams Member Posts: 175 Listener
    Why is my son so moody, my son has autism and is very moody and impatient, he seems to get teary quite easily and is asking to do a few things himself, I am just wondering if he is looking for more independence and finds us stalking him all the time a bit frustrating, any suggestions
  • GinaSGinaS Member Posts: 79 Listener
    Hi Marie.
    I guess you are right and he might be looking for some more independence, how old is he? Regarding being impatient, many people with autism find it hard to understand the concept of time and having to wait. If you think about it, time is a very abstract concept for someone to understand. When someone is asking us for something and we reply "hold on a minute", we all know that is never going to be just a minute! Using concrete concepts helps people understand what is happening. For instance, try an egg timer to explain your son how long he has to wait for.

    I think is great that your son is asking do some things himself! What you can do is, break down a task in simple steps, allow him to do the things/steps that he can independently and support him (maybe for instance, providing hand over hand guidance at the beginning) to do the rest. Providing praise and be enthusiastic about the things he does independently is very important too.
    Does he attend a school/day service?
  • vcw91vcw91 Member Posts: 4
    Hi Gena, we have a 21 year old daughter Vicki who has a moderate learning disability. She has an obsession with a 24 year old female Zumba Teacher and carries photo's on her phone, and laptop. The obsession even extends to the teachers car, music, and shops she likes to use, and the clothes she wears.
    Vicki sits in her room night after night staring at photo's of the teacher (including a picture of her car) on her laptop. Vicki attends the Zumba class on a Wednesday and looks forward to this, however we try to explain that there are other people to meet and we encourage her to go out to meet new people etc but she is not interested, and it seems she is happy to sit in her room waiting for the Wednesday class.
    We are frustrated trying to motivate her and to stop her staring at the laptop photo's and have thought about taking the laptop away (maybe by altering this so that there appears to be a fault rather than being confrontational).
    I wonder if you have any ideas we could try.
    Many thanks. Jim
  • GinaSGinaS Member Posts: 79 Listener
    Hi Jim,
    how long has your daughter been particularly interested in the zumba teacher? I guess, there could be many different reasons why she's "fixated" to the teacher. They do have a similar age and I'm wondering if she sees her as somebody she really admires, or she interested in getting to know her. It could be, however, a more typical obsession, meaning that getting so concentrated on a particular person, helps her to cope, relax and just feel happy/calm (especially, if you consider how chaotic and unstructured daily life can be).
    I'm wondering if you could try 2 things; first, help her to self-manage the time she spends looking at the pictures and introduce reasonable limits you can put in place that your daughter can manage. Gradually increase time restrictions and introduce other limits (instead of taking the laptop away). .At the same time, try to distract her and offer equally interesting activities, ie another dance group, or activities she finds motivating (although, I'm very sure you've already tried that!). Support her to make a choice and help her to "commit" to that choice, offer something rewarding at the end of the activity.

    Does she have other activities during the day that she enjoys? And also, have you thought of trying different zumba classes too or for instance, zumba in PS3/wii , etc? (without taking away the Wednesday session)
  • AutismAutism Member Posts: 1
    Hello . Just been out with my son who has ASD . I feel quite able to understand and empathise with him most of the time now ..but today was completely at a loss and I ended up in tears in public. He was on a bit of an off day anyway,but went berserk when he dropped a bit of paper from his kinder egg into a drain! We looked at it and thought it best for him to see that it was not possible to get it out as he couldnt lift it. Normally these days that would have been ok after a while. He threw cafe chairs ,started kicking me and dribble/spitting .
    For the first time in ages I felt really worried that there may be a time when It is out of my reach to help him which really frightens me for his future.
  • vcw91vcw91 Member Posts: 4
    Hi Gena, and many thanks for your reply. We do have a Wii Fit, and she has Zumba DVD's which she uses, however she has a photo of the Zumba teacher which is usually placed so she can see this whilst doing her Zumba with the DVD. We have tried to keep her occupied with other activities however she seems to be withdrawing even more into her room. We have talked about looking at the picture, and will try to get her to self manage more so. Kind regards, Jim
  • GinaSGinaS Member Posts: 79 Listener
    it sounds like you had a very difficult day with your son. I completely understand the confusion when your son is behaving in a very unpredictable way. Unfortunately it is very hard to control every aspect of a situation, especially when you are out in the community. I'm sure you did the best to manage the behaviour, and I would agree that sometimes is helpful for someone to see that is not possible to get something he wants. However, I assume that this was one of the triggers for his (difficult) behaviour.
    I'd suggest talking/communicating with him about what happened and explain what it means when something is finished (ie create some similar situations in the house and support him to behave in a more appropriate way). Having a desirable item for distraction can be helpful when you are out too (have something with you, that you know he really likes).

    I think that it might be useful to keep a record of these difficult situations and ask for some help from the local health team. They will help you with some specific advice about these situations. It is true that sometimes, as people are getting older and bigger is more difficult to manage some of the behaviours, however, you are proactive enough and I'm sure with appropriate help you will both manage. Feel free to drop a message if you want to discuss any of these difficult moments further, you're not alone! All the best
  • knackeredmumknackeredmum Member Posts: 2
    Hi, my daughter has Down's syndrome, has just started at a special needs secondary school (she is 11) and is very happy there. However, she is constantly wetting her pants. This started during the summer holidays. The school has been very helpful, and are encouraging her to go to the toilet as much as possible, and are even washing her clothes. She has had three urine tests, two of which were negative for infection, the third is being sent to the lab and I'm waiting for results. The GP said she might be referred to a Bowel & Bladder clinic (eventually), but what could be the reason for this? She is also wetting at the weekends everywhere we go, and I feel sorry for her, as she seems to to be unable to control it, and get to the toilet on time. She does not appear stressed byt he new school though is pretty moody, and can be pretty challenging lately. I am assuming this is the start of puberty. Any advice would be gratefully received. Thankyou.
  • GinaSGinaS Member Posts: 79 Listener
    it sounds like this is a new behaviour. Before the summer holidays, was she using the toilet independently?

    Generally speaking, there can be a number of reasons for this behaviour. For instance someone:
    - may not recognise when they need to wee
    - may not be able to ‘hold on' until they get to the toilet
    - may need help to find or to get to the toilet
    - may need help to lift clothing or take down underclothes
    - may have an infection, or constipation
    - may have side effects from medication

    I think ruling out any physical causes is the most reasonable thing to do first. Now, if this started during holidays and prior to the start of new school, it might be due to anxiety or stress of something totally new. Problems with wetting yourself may get worse in strange or new surroundings.

    I believe that the referral her GP made is to check whether it's stress urinary incontinence (or bladder weakness as it's often known), and if she can control her bladder.

    Probably you have tried some of them, but until you get the results I'd suggest:
    - Use a structured program in order to prompt her to use the toilet regularly (ie initially every 15') and ask staff at school to record how many times she was prompted and how many times she wet herself. You can also keep a simple record at home (maybe in a diary, just tick the time she was prompted and the time she got wet)
    - use a sign/symbol/picture of toilet

    Have you noticed any particular times/places when this is NOT happenning?
  • AmumAmum Member Posts: 5 Listener
    Hi Gina,

    my daughter is 7 and to me seems to be a regular 7-year old, very outgoing, extremely creative and imaginative and slightly too talkative. She has many friends, 3 best friends she sees in school, after school and often on weekends. So far there were no problems with her performance in school, she is good at Maths, does a lot of reading and is slightly lazy on writing but nothing out of ordinary.

    However this summer we were summoned to a meeting with associate headmistress who said that Liza had problems and needs to see Learning Mentor. The main reason we understood was that Liza complained a lot about being ill in school (which we think might have been prompted by her not having a good relationship with the teacher in year 2).

    After having seen the mentor for a few weeks this year we were asked to come for a meeting yet again. Apparently now "school action" was needed, they were going to fill in Boxall profile and see how to proceed. When asked what was wrong with our daughter the main reasons they gave us was that she likes to play on her own during playtime. And apparently she likes to talk and is not easily stirred off the subject she has chosen so the learning Mentor had trouble talking to her within the 20 minutes allocated for the sessions (I have no trouble stopping Liza and neither have parents of her friends, I did gently enquire). When pressed they admitted that it did not seem to affect her learning and that she did seem happy. Liza's teachers were not present at the meeting.

    We were so shocked by this meeting we hardly had anything to say, but is it a normal procedure? I used to like playing alone so have no problem with that as long as Liza is happy. She seems to have lots of friends, her learning is not affected by all these "deviations" and the fact that Learning Mentor could not talk to Liza properly in my opinion is teacher's lack of experience.

    I am now worried that once Liza gets on the system they will keep stigmatising her as a difficult child and finding "abnormalities" but I cannot judge whether the need for assessment was genuine.

    Can you please give some comment based on information above and what would be the best way to proceed for us as parents if we do not want school to interfere with our child's behaviour unless it is disruptive, she is unhappy or it is affecting her learning?

    Many thanks,
  • GinaSGinaS Member Posts: 79 Listener
    Hi Lana,

    I can understand your worries and I find it strange that her teachers were not involved in the meeting.

    To be honest, I'm not very familiar with Boxall profile or the procedures in mainstream schools but my understanding is that the profile makes people explore and understand about what lies behind a behaviour of concern (ie anxiety or difficulties engaging in school life). If you believe that the Mentor just doesn't know your daughter I'd recommend talking with her again and the teachers to give you more evidence about their concerns, ie how long does she spend on her own and how long with her friends, how does the teacher find it when she is talking about a favourite subject?

    However, I would expect that the teachers notified the Mentor and they all made a joint decision regarding the profile and further assessment. As a parent you play an extremely important (if not the most important) role in your daughter's life and any decision cannot be made without your consent.

    I would definitely ask for more explanations/evidence regarding school's concerns. It is common for children to exhibit different behaviours at school and at home and a joint approach (family with school/professionals) is always the best way forward. Keep in mind that if they clearly explain to you what is the behaviour that they find it difficult to manage, you might be able to help them with some ideas, as you are the person who knows your daughter best.

    Let us know how it goes
  • kandersonkanderson Member Posts: 3
    Hi. Wondering if you can help. My daughter is nearly 3 and has down syndrome. Recently she's begun to pull her hair out and eat it. She's always had a thing for hair but she's now going bald and I'm worried about the amount of hair she is eating. Any ideas to stop this behaviour? Thank you.
  • GinaSGinaS Member Posts: 79 Listener
    Hi Kanderson,

    I understand that this is a new behaviour of your daughter and you are concerned; have you noticed any particular times of the day or settings she does it? How do you respond to that? Does she stop if you ask her to?

    As far as I know, the behaviour of pulling hair is either anxiety or sensory related (she gets some sensory feedback while she's doing it) - for example try some chewy tubes that keep her hands out of her hair and also give her sensory input through her mouth. Also, if you notice that she's doing it when she's bored or has nothing else to do, try to keep her hands busy - maybe through something she can squeeze, hold or play with.

    It is difficult to suggest ways to stop the behaviour as there are a number of interventions that can successfully address it, but a specific assessment of the conditions when the behaviour occurs and doesn't occur is important to understand why it is happening.

    In addition, there is a condition called "trichotilomania" - (comes from the greek word for hair- this is your useless information of the day!) where people have the compulsive urge to pull out and sometimes eat their hair - however, this is not usually observed in so young children.

    What I'd suggest for now, is to have a look around for some sensory toys and ideas and get an Occupational Therapist on board - they are the experts in providing sensory stimulation!

    Let us know how it goes if you try any of the above!

  • kandersonkanderson Member Posts: 3
    Thank you so much for the advice. It's a shame I couldn't have got anything half as useful from the paediatrician on monday. She's always had a thing for hair a bits of string so the sensory thing makes sense. I found a think to some chewy things so might try that and see if I can get some further assistance from OT. Thanks again.
  • GinaSGinaS Member Posts: 79 Listener
    I think the sensory input then might be quite important for her. Have a look around Netbuddy, I remember seeing a topic about cheap sensory items/ don't always need to go for the fancy/expensive ones!

    Let us know how she gets one!
  • kandersonkanderson Member Posts: 3
    Thanks again. I'll let you know how we get on.
  • AmumAmum Member Posts: 5 Listener
    Dear Gina,

    many thanks for your prompt reply. I had a meeting with the teachers and they seemed to be surprised to learn that there were any "problems". They said that while our daughter was certainly an "individual" (her own person was the expression they used) they never noticed that it affected her learning or social interactions. So I do not understand anything now. We decided to wait till the next meeting with the Mentor and associate head and try to get to the bottom of the issue and if necessary express our concerns and stop the procedure before it is too late.

    Many thanks again
  • bun107bun107 Member Posts: 2
    Hello, firstly thank you for your helpful netbuddy tips - i read them with interest!

    My son has just turned 9, he has epilepsy, an acquired brain injury (caused by prolonged seizures when he was two) - temporal lobe sclerosis - the area of the brain that deals with memory, concentration span & attention!

    We have had some support from the Barnardos (BIBS) team who have explained to us that our son is considered to have a learning disability - it sounds so stupid - how could we not have realised this?!

    We knew that he was physically 9 but not mentally 9 in terms of the gaps between him and his peers was noticeably growing in terms of education and understanding.

    The main reason for asking for your help today is my son has always been fascinated with hair, primarily mine! and recently it seems to have been almost obsessive. He wants to touch my hair, and twiddle it - i try to distract him, and brush his hand away and wear my hair up as much as possible. But i've noticed even in the line at school he will stand behind a girl and play with their hair!

    How do i get him to understand that this is not appropriate! Especially when he gets rough! What doesn't help is when his Grandma visits from down south she positively welcomes him playing with her hair despite my requests for him not to do so!

    I get the feeling that he is getting some kind of sensory stimuli from it.

    Also he just WON'T put his shoes on properly! he flattens the heels down and slides his feet in - and has ruined countless pairs of shoes this way - so i now just get cheap and cheerful ones. We tried giving him his own shoe horn, but it causes endless problems at school also with him running out of his shoes because he doesn't have them on properly.

    Finally, (as if the above two were not enough!) he is still having problems with toileting. He toilet trained ok at 3 and a half, but after a very stressful first year in primary school he started to soil - which was investigated via medical channels with no apparent physical cause - it was put down to 'stress' caused by the lack of support from teaching staff and expectation from them to be the same as his peers (despite his diagnosis). Now this seems to occur at times of stress, change and sometimes just almost as if he cannot be bothered. Obviously the older he physically gets the more acute the problem becomes - i worry about high school, I fear that he would not manage in mainstream, but in another way he would be more able than some of the others in specialist provision - i've already been told by a Educational Psychologist that he is "not bad enough for specialist provision, but not "good enough" for mainstream without support.

    It just seems these little things seem like massive obstacles at the moment!
  • GinaSGinaS Member Posts: 79 Listener

    It sounds like you've got a good understanding of his behaviour playing with hair and it's very possible to have a sensory element. Consistency is always very important, as all people around him should give the same response. I know how grandmas are and you need to make sure she doesn't give a different message from yours. I think trying to give him something to do with his hands while he can still get the same sensory feedback is very important. Have a look for sensory toys/objects, keeping in mind that he's more likely to play with something that gives him the same feeling as twiddling someone's hair.

    It's quite interesting what he's doing with his shoes, I remember doing that when my shoes were a bit tight - have you tried slightly bigger shoes and maybe some help with laces to make them more loose? How about trying teaching him with some soft slippers that look like shoes (and require exactly the same method/skills but it's a bit easier to put them on) and move gradually to shoes?

    As far as the toileting is concerned, if he's got the skills he will come back to that - try to reassure him as much as possible and prompt him to go to the toilet regularly. Make sure you reinforce him afterwards with something that he likes and hopefully this might not be an issue by the time he goes to high school! Stress is a common cause, so he will need more emotional support and reassurance when he goes through changes or stressful situations. What about creating a visual sequence of the steps?

    The debate between mainstream vs specialist placement is a tricky one; it really depends on your son's skills and plans for the future; what would he like to do after school? Each setting has pros and cons and I think your son needs to be supported as much as possible to make an informed choice. Ask him about his friends in the current school (I assume he goes to mainstream?) and the psychologist will need to be involved too; hopefully she will have done some observations and will be able to contribute. I believe that person centred planning could be a very good tool to help you make a decision.

    It sounds like you both go through a difficult period at the moment! I do hope that things settle down for you soon. Let us know if you try any of the above!

    all the best

  • HeatherHeather Member Posts: 171 Listener
    Hi Gina. Can I ask if there are any special guidelines in place within schools for handling aggressive behaviour and to report it back to parents? I know that sounds vague, but when my son was in a severe special needs school, if he refused to work he was carried by 3 adults to an isolation room- repeatedly. We were NEVER told and only found out in a heated argument. We removed our son after repeated injuries,(the adults dropped him and he hurt himself lashing out at them) and he is now in a school who are teaching our son, if he feels stressed he can touch a "time out" card and they have a tent in the class room for him to sit in if he chooses. Not a punishment room, but an understanding of, we all have off days! But when he was repeatedly punished at his old school, without our knowledge and he is non verbal, how can parents expect to understand why their child is so scared and regressing? Surely there must be some guidelines that schools should tell parents?
  • GinaSGinaS Member Posts: 79 Listener
    Hi Heather,

    I believe each school should have a reporting and recording policy and have to keep a "Pupil Accident book".

    I can't see how someone can justify why they used an isolation room and how he got the injuries, however, parents have the right to be informed about their son's/daughter's physical and mental health and school is responsible to sustain channels of open communication. I haven't worked in a school so I'm not familiar with specific laws and policies, but I'm happy to explore this further and let you know.

    As far the new school is concerned, it seems that you made a very good choice! I appreciate that it's very upsetting as a parent knowing that your child was scared. A positive approach, lots of reassurance and teaching communication skills will help your son to express his feelings in the future. Also, it will be important to use the "time out" card while he is at home or out, to build on existing skills.

  • SBSB Member Posts: 1
    Hello Gina,
    Are you able to post details of PBS practitioners in the London area to whom a referral can be made?
  • GinaSGinaS Member Posts: 79 Listener
    I am not aware of a list with PBS practitioners and I believe some of the reasons might be that practitioners have different qualifications and background, and there isn't a professional body/registry as such.

    You can request help from a Board Certified Behaviour Analyst ( who work using the principles of ABA and Positive Behaviour Support and/or you can always refer to your local Community Learning Disabilities team (usually PBS practitioners work within Psychology team) asking for some help to manage certain behaviours.

    Please let me know if you require any other information.
  • DelDel Member Posts: 1
    Hi Gina not sure if you can give me any tips because of the age of my niece she is three and is downs. My sister is pulling her hair out trying to find a way to get her daughter to keep her nappy on every time she turns her back the nappy is off and she is wetting the carpet. My niece is delayed and she feels is not ready for toilet training. Could you help or, tell me who to contact thank you Worried Auntie.
  • GinaSGinaS Member Posts: 79 Listener
    Hi Del,
    i'm afraid i'm not an expert in toilet training or working with such a young age group.

    In terms of keeping the diaper on, I'm wondering if it's sensory (there might be something in the texture of the nappy that she can't tolerate)? If not, can you try some pullup over the diaper? Does she take the diaper off when she's wearing her pyjamas?

    You could also try to introduce a routine for toileting and back it up with some pictures. NAS recommends this website, check in case you find it helpful:
    I understand that she is very young and it might be a slow process, but you will need to start with very small and simple steps for toilet training, one at a time.

    I am also wondering what other families'/parents'/carers' experiences are and if they have any useful tips?
  • andria_2012andria_2012 Member Posts: 3
    Hi. My son is only 7yr old. But displays alot of behavioural problems. He has hit teachers pupils. Disturbed classes. All becos he didnt want to it or got annoyed. The teachers are saying its just stubborness. But I dont think so. He gets easily distracted . He was recently removed from school for 2 days for biting another class mate .I dont know wat I can do to help. Do you have any adbice that may help
  • GinaSGinaS Member Posts: 79 Listener
    Hi Andria,
    sorry to hear that about your son. I hope you are both coping well at home.

    Does he attend a specialist or mainstream school? In any case you would expect a better understanding of his behaviours from staff. Behaviour always has meaning and there are different ways of helping him. It is very important to identify when it is happening and how his teachers/staff respond. Do they have any in-house specialists?

    You mention he might display difficult behaviours if he doesn't want to do something or got annoyed. Maybe the task is too complex for him and they need to break it down? Or teach him how to request a break during class? How does he usually communicate if he doesn't like something?

    it is difficult to give specific advice as I don't know what he does exactly, but is worth having a conversation with the teacher and/or a behaviour specialist/practitioner within the school, to further assess his behaviour and understand how they can help him better.

    I think it might also be important to give him some reassurance, as he might find it difficult to understand why he's been removed from the school.
  • andria_2012andria_2012 Member Posts: 3
    My sons behaviour. He hit the teachers . Hit myself . Hit his social worker. Fighting with other pupils in school. The other day. He was being none stop checky repeating the teachers words. Lookinv for relaliation and confrontation. When he didnt get it he continued. Then told the teachers he was the boss of the class. He said he was annoyed. Seems when he gets annoyed he cant control himself . We have tried many different ways to try avoid this situation. But just seems to get worse. When he kicks off can be more than 45minutes at a time for him to calm down. Teachers dont know why he acts like this. Just says he gets distracted easy and annoyed. Doesnt like being told what to do .. the other day I had 40 minutes of him screaming the house down all becos he didnt want to get ready for school.  Even to the point of screaming no ur going to strangle me. When trying to put his tie on. Im really at the end of mg wits. I dont know what to try now .
  • GinaSGinaS Member Posts: 79 Listener
    Thanks for sharing with us Andria.

    It might be helpful to teach him some coping skills in order to manage his behaviours and express his dissatisfaction (did he actually say I'm annoyed? If yes, could you teach him to express his emotions and walk away/take a break or do something else?). There are definitely events (some things/others' behaviours/situations) that trigger/cause his behaviours but is quite difficult to pinpoint them without an assessment. I'd definitely suggest involving the local health team to get some input around his behaviours. A behaviour analyst or behaviour practitioner will work closely with you and the school and provide some help to manage his behaviours proactively.

    In the meantime, it might be good to keep a simple diary of these difficult situations as they occur, as you might be able to identify any patterns. I'd expect staff at school to do the same.

    What you mention about trying to put his tie on might be related to some hypersensitivity to touch; for example, some people (esp with Autism) can be sensitive to touch or certain fabrics and what we experience as "typical" or pleasant can even be painful for them. An Occupational therapist might be able to provide some useful advice on this topic. In the meantime, try different, softer fabrics to see if that makes a difference.

    Also, I'm wondering if communication plays a role as well. If he doesn't like being told what to do (and I think most of us don't like it!!) , you can use an alternative communication system (e.g. a visual schedule with photographs or pictures) to communicate a series of tasks/things to be done. In this way, he will also feel in control.

    Last thing I can think of has to do with physical exercise and ways to channel his energy. You might have already tried that, but is worth exploring activities in your local area, e.g. sports, trampolining, etc.

  • AdrienneAdrienne Member Posts: 1
    My Daughter Evie is 5 and has learning difficulties. I am really struggling with her behaviour at the moment. This just seems to have started around the time she began school. If she doesn't want to do something she hits me. This could be something as simple as putting on her shoes? She tells me to "shut up" all the time. She realises as soon as she has done something wrong and will immediately say "sorry mummy". Its almost as if she cant stop herself? My main concern is her 2 year old wee brother. She has pushed him through a shower door (smashing it and traumatising him) She has grabbed him by the hair and thrown him accross a room. She hits him over the head. (I would say on a min three times a day ). The naughty step doesn't appear to be working. I have been doing this for sometime. Although she cries when I put her on there and will say sorry. Minutes later she will hit him again. Like I mentioned its almost as if she can't stop herself. After school when she is tired is particulary bad. I am a single parent and I work 30 hours a week. Trying to make the dinner and managing Evie's behaviour at this time is very testing ;-) I worry for my sons safety. Her crying fits also last from anything to 20 minutes to an hour. Am finding things very difficult just now. Any advice would be much appreciated. Thank you.
  • GinaSGinaS Member Posts: 79 Listener
    hi Adrienne,
    seems that you have already identified the "difficult" times for your daughter and the rest of the family. Going to school for the first time is a big transition for most children as they have to interact with lots of people, learn to follow instructions and it's overall a new world for them.

    You write that the worst time is after school when she is very tired - how about working closer with school to identify why she feels so tired? Is it her attention span, would she benefit from shorter activities or even a shorter day? How difficult are the tasks they ask her to complete?

    You also said that she hits you when she doesn't want to do something. It might be a good idea to work alongside school (and maybe a Speech therapist too) to teach her how to communicate she doesn't want to do something. What about using a card with a red X she can show you when she needs some more time? Also, is it possible to follow the task she has to do (putting her shoes on) with something she really likes ? Do you think she might even find some tasks quite challenging to do? Could you break them down at all (e.g. help her put her shoes on and ask her just to do the velcro straps or the last bit in tieing the laces)?

    The incidents involving your son sound quite serious, I would recommend asking for some support from school and the local LD team as you don't want him to be hurt. A psychologist and/or Behaviour Analyst would try to figure out what purpose these behaviours serve (understand why they occur) and will work closely with you and her teachers to share ideas and manage these difficult times.

    Time out or naughty step seem not to be working, as they don't teach her what she needs to do instead. She might have learned that she needs to apologise and say sorry, but doesn't mean she won't do it again.

    You said that she seems like she can't control it. What is it that you saw? If that's the case what about giving her something "safe" to do instead, if you think she has a lot of energy she needs to take out?

    I can't even imagine how difficult the situation must be for you and I'd recommend asking for more help and input.
  • ana2ana2 Member Posts: 1
    Hello everyone, I'm new here and glad I found you all!
    A couple weeks ago when GFG and I were arguing about my right to curse in my own
    he punched me in the mouth. He never did that before and I didn't handle it well. If he ever does it again, I've told him I will call the police and send him to juv.

    Don't get me wrong, GFG can also be very loving and gives me hugs and kisses and tells me how much he loves me. I just need some help in how I can '"deal" with him being a teen.:angry:

  • GinaSGinaS Member Posts: 79 Listener
    Hi Ana,
    welcome to Netbuddy!

    We find that different things or strategies work for different people when it comes to dealing with anger. From my experience, natural consequences (such as calling the police) are not always effective as some people find it difficult to make the connection between their behaviour (e.g. punching) and consequence (police).

    It is important to understand what triggered the punch - there is always a reason, without saying that there is something you did.

    When we see that someone is getting upset, redirection might work - try to engage him in something you know he likes, or pretend you need help with something. Also, acknowledging he is upset might help too and ask him to tell you what is wrong. It is very difficult sometimes to recognise these "warning signs" but if you do, it's better to do something then, rather than waiting for the behaviour to escalate.

    Just remember that when people are quite anxious or upset with something, they find it difficult to communicate using speech and some visuals might help you. It is also important to teach someone coping skills, what to do when they get upset. I am working now with a young lady who puts her earphones on to listen to her favourite music and starts squeezing a stress ball when something goes wrong. Other people engage in relaxation (deep breaths, counting to 10, etc)

    That might have been an isolated incident (I'm wondering if you have any thoughts about what might have caused that?), however, it is important to ask for some help if it happens again.
  • LornammLornamm Member Posts: 1
    Hi there, I'm in desperate need of some advice about my 7 (soon to be 8) year old son. He has been having trouble at school now since Reception. He hits his peers and is often in trouble for calling out, not sitting stil and is very impulsive. His behaviour has improved a great deal at home and I have very little trouble with him now. However school doesn't seem to be improving much at all. Other parents tell their children not to play with him and he has now developed a 'label' and gets in trouble for things other children do etc etc. the school have told me they think he has ADHD which I'm not really so sure about. He does show signs but they are very mild. I joined a website forum and heard what other parents go through and it made me realise how mild his behaviour really is. I took him to the optician to rule out any problems with his vision as a teacher friend of mine suggested light sensitivity issues. The optician said all is well with his eyes and that in his opinion my son is extremely bright and is bored. This is something I've heard on more than one occasion about him, but never from the school. I am currently due for an appointment with his GP to update and ask for help. The GP did refer him to the community peadiatrician who asked for the school to provide evidence that they have done everything they can to rule out learning difficulties.however, the school simply wrote a letter talking about his behaviour. I just don't know if I'm coming or going me where to turn to next. If you can give me any information or advice I would be so grateful.
  • GinaSGinaS Member Posts: 79 Listener
    edited June 2014
    Hi Lornamm, thank you for your post and sorry to hear about the difficulties you have with school.
    As far as his behaviour is concerned, most people tend to exhibit different behaviours in different settings (eg school, home, playground, etc), however, I'd suggest you work with school closely and advise his teachers how to manage his behaviours. It would be useful if you share with them what's working/not working at home and you can come up together with some ideas on how they can implement these strategies at school (especially if you have seen a lot of improvement - there is definitely something you are doing very well!).
    In terms of diagnosis, GP is always the first person to ask for help and I believe that the GP jointly with the community paediatrician will have to push the school for a proper handover of information. I am wondering if the GP could also refer you to another healthcare professional who will be able to diagnose ADHD or other relevant conditions (if any).
    It is very interesting to bear in mind what the optician said! Let us know how the appointment with the GP goes!
  • chizzychizzy Member Posts: 1
    Advice please. Our son is 13 not attended school for the last 2 yrs diagnosed with adhd pda & many austic traits but not got any other labels as yet other than complex
    He won't engage with professionals so really not getting any support due to lack of engagement as he's worse at home after someone has visited currently in the precession of Lea agreeing on our specialist school chosen so awaiting cmahs report before they decide when he falls out with friends he threatens them & there families which leads to great problems involving police on many occasions any advice please ?
  • GinaSGinaS Member Posts: 79 Listener
    Hi chizzy,
    apologies for the late reply!

    I understand that it's difficult for your son to engage with professionals. If he struggles with his friends, some social skills teaching might be appropriate. I think staff at the specialist school will be best placed to help you with that. Would you like to give me some more details in terms of his behaviours?
  • charlimaisdadcharlimaisdad Member Posts: 8
    hi, my name is mark. i have a daughter named charli mai whom has down syndrome. i am also a support worker for adults with learning difficulties and challenging behaviors. i have been searching high and low for a sensory toy that can be fixed on the wall in the shape of a big button and if you hit the button it plays nursery rhymes. any help would be greatly appreciated.
  • GinaSGinaS Member Posts: 79 Listener
    Hi Mark, I'm afraid I haven't come across something like that!

    I have used different types of switches (e.g. the Blue2 Bluetooth switch which provides switch access to Apple devices) but I guess you need something less pricey to play nursery rhymes!

    There is a Rhymes CD player by Fisher Price which you may be able to fix on the wall? I'm wondering if it's also worth posting in the "equipment and technology" forum as some other parents might be able to help!

  • ab474ab474 Member Posts: 1

    I am a Behavior Specialist with adults with developmental disabilities in New Jersey, USA. I currently have a client that is new to the Day Program I work at. He is fairly "low functioning" and tends to grab other people often, including when being fed. His grabbing seems to be occurring because he wants people's attention/interaction. This client is in a wheel chair and has limited speech abilities. Any ideas on how we can get him to stop grabbing people? Maybe using some item he could hold, etc.? Any ideas/help would be very much appreciated. THANK YOU
  • GinaSGinaS Member Posts: 79 Listener
    Hi, it's so nice to hear from that side of the world :)

    If you have identified why he is exhibiting the behaviour of grabbing (have you done a functional assessment? If not, that's a good starting point!) it's a good idea to teach him how to request your attention in a more appropriate way! If he has limited communication skills, it's worth looking into functional communication training and also some other ways to communicate other than speech; does he use pictures/photos/objects/signs?

    In terms of giving him something to hold, it's a good idea for these "difficult times" - when you know the behaviour is most likely to occur. For example, if you know this is more likely to happen when you're coming back from shopping or when he is in the car, give him items to hold with both hands, so he can't physically grab people at the same time (what we call incompatible behaviour).

    But again, I think it's worth doing a functional assessment and try to identify what function the behaviour serves for the individual. This will help you to come up with the right interventions.

    Hope that's helpful!
  • seauserseauser Member Posts: 5

    Hi Gina

    Thanks for having a look at my post - hugely appreciated. My brother is a 28 year old CP sufferer who also has fairly severe learning difficulties but is capable of speech. When he is not tired he is chatty, polite, happy and generally very cheerful. However when he gets tired he has a habit of stopping talking. He usually then proceeds to make a groaning noise as (we think) a form of control as we believe he is choosing to make this noise. Perhaps he is too tired to chat and is trying to cause irritation by making the noise. When he is not tired I ask him about it and he explains he doesn't know why he does it (we're quite confident it's not a physical thing causing him to grown). This is also accompanied by uncontrollable giggling/laughter - he also says he has little control over this and asks why he does it when tired? I half wonder if the noise is a control thing - trying to own the conversation and be the one in control rather than being made to chat? Please let me know your thoughts and ask for any more info you think would be helpful! Thanks again!

  • GinaSGinaS Member Posts: 79 Listener

    Hi Seasuer,

    thank you for your post.

    I am wondering if you can support him to use alternative ways of communication when he's tired? For example, have a booklet with pictures available so he could point instead of groaning? I've also used some apps (e.g. Gridplayer which is free) with people to offer choices and have a conversation (much easier to tap than speak when you are tired or even anxious!).

    As far as the "noise" is concerned, does he make it only when he is tired? Any particular time of the day? And how do you usually respond (e.g. do you ask him to stop/speak instead)?

  • seauserseauser Member Posts: 5
    Wow thanks for the quick and very useful response Gina. The app is an excellent idea but we've previously tried using a chart and I think he is genuinely reluctant to use these things which made me consider the "control" aspect of it. He does it usually if he is tired so it would usually be late afternoon/evening when he does it. I think it may also be slightly linked to uncontrollable laughing - unsure if you have ever come across that? In terms of response we usually try and keep chatting to him but then if he doesn't stop after we have asked him we explain we won't continue chatting if he does that. It really is a remarkable change how much improvement we see when not tired. Thanks again for your support it's greatly appreciated!
  • karenchutterkarenchutter Member Posts: 2
    Hi Gina, would like some advice to help a lady I support who has Turner's syndrome. She is currently buying surplus amounts of teabags, baby shampoo, ladies razors, cotton wool, etc etc, she has been doing this from time onwards of 2001 when her mother had died and her elderly father was no longer to shop due to crippling arthritis, she has access to a visa debit card which she uses and unforunately does not understand the value of what she is spending and also £1000.00 cash a month in envelopes of a hundred pounds given to her by her trustees whom one is her neighbour this system of spending is now seen to be a problem as where as before the neighbour did not realise the extent of he spending until taking over as her trustee in the last month. I have been asked to try and think of a way to help her understand the value of what she is spending, is it possible to do this as and have you any suggestions. In my experience of working with adults with learning disabilities in the community they have all been limited on how much money they have access to and had cash boxes and books to keep accounts in helped by the support worker, the spending was itemised in to sections such as bills, food etc, she has never had anyone support her with this before and is resistant to changes and when told by her trustees that they felt she was spending to much money on teabags etc she retorted with its my money and I can decide what to spend it on. The trustee who is also her neigbour has asked me to help her because when she has used all her current account money up her trust fund will not be hers to spend at will, and the trustees have responsibility to ensure money is spent wisely.
    I suggested cash boxes limited money etc, it will be difficult because of the freedom she has so far, we also can not get her to try social activities she is stuck in a routine of watching tv going to shop for groceries and the only social conversation she has is with support workers in her home.
    your gratefully Karen
  • GinaSGinaS Member Posts: 79 Listener
    Hi Karen,
    thank you for your message and apologies for the delay getting back to you.

    I would go back to the person who is funding that lady's service (does she have a care manager?) and request a capacity assessment (does she understand the risk/consequences of spending that amount of money every month?) Does she have an advocate or other family/friends/significant others?

    You can help her to budget by setting small goals - e.g. help her to save a small amount every day for something big she can get on Sunday or for a "special" activity. A visual chart could also make it more powerful and help her understand why she is saving.

    Can she read, write or count?

    In terms of engaging her in activities, is about trying to "break" that routine but making very tiny steps each time - try to pop in to the coffee shop on the way back from groceries (or something else that you know she likes doing) and introduce a visual schedule to help her organise her day.

  • Emzy21Emzy21 Member Posts: 1
    I'm desperate for some help. My son is 16- he has a variety of disabilities including CP and global developmental delay. He is also deafblind so has very limited communication. Up until 18 months ago he was a very happy, placid boy but since then he has become a different person completely.
    He has very challenging behaviour and he spends a lot of time screaming, shouting and hitting himself on the head and face. If I try to comfort him sometimes he will nip or scratch me. Sometimes he can do this constantly and then other times he has more settled periods but we don't have a day without a number of these outbursts. He is like this at school as well and they are constantly trying to find a route cause- which sometimes can be stressful because they are constantly asking me to take him to GP, dentist and many other professionals- none have a clue how to tackle this behaviour.
    There doesn't seem to be any triggers to this behaviour and it just comes out of the blue- we go through a series of steps each time- food, drink, change pads, change positions etc and sometimes one of these will alleviate the situation but sometimes it won't make the slightest difference. As a family this is putting a lot of strain on us- my partner is not his father and although he is amazing sometimes he looses patience which causes tension and I also have a 2 year old toddler who does not understand why her brother is shouting and hurting himself.
    Can you offer me any advice or places to go for help? We have been referred to our local CAHMS team but have been waiting 4 months and so far no appointment
  • GinaSGinaS Member Posts: 79 Listener
    Hi, thank you for your email.

    I believe the reason why they've advised you to visit different health professionals is to rule out physical causes - it's always our first call. Did the GP or dentist find anything? What about having a blood test or test for urine infection?

    You have done the right thing - a referral to the CAHMS. Hopefully, they will be able to come out and assess his behaviours. Also, do you receive any input from SaLT considering his sensory impairment?

    In the meantime, it might be helpful to keep a simple diary of his behaviours, to help and speed up the assessment. Make a quick note on the time he exhibited the behaviour and what did you offer him/ how did you respond to help him? Did it work? If yes, try the same strategy for over a week consistently to see if it makes a difference or not.

    It's so difficult sometimes to see or observe the trigger but we know that there are events/factors that lead to behaviours we find difficult to manage (but sometimes we can't observe them, for example pain, discomfort, etc). The key is to record what and when happened and go back (maybe after 3-4 days or a week) to see if there is a pattern. What do you think is he trying to communicate through his behaviour? How would you know if he's in pain?

    It's disappointing that you have to wait for so long! Maybe it's worth chasing it up with the referral administrator or even his social worker/care manager - sometimes on a referral it's very difficult to assess the risk (how immediately should the team respond) and from what you've said, since it affects your family's quality of life it's important to get help.
  • Cheryl PozzutoCheryl Pozzuto Member Posts: 3
    edited December 2015
    I need help with my son he is 11years old. He has mild cerebral palsy, pvl,asd trats, behaviour problems, problems understanding emotions, goble development delays, learning delays, ect. He is now in his 2nd secondary school and it looks like he might be permanently expelled I have been told that only a special unit for young offenders will except him now which is not right for him at all even though if managed properly his is a amazing child. And had the last 2years of primary school with no behaviour outburst at all as the staff learned his triggers and put thinks in place to support him inc anger management therapy. What can I do my 11 year old son with Sen is facing the fact that he may never go to school again and how can I help him with his social skills if there is no school available.
  • GinaSGinaS Member Posts: 79 Listener
    Hi Cheryl,
    apologies for the delay getting back to you.

    Looking at worked during the last 2 years of primary school might help his current school - as you said, they had identified the triggers and put right interventions in place. Maybe his new school needs some support too in order to work with him effectively and avoid being expelled.

    I think it's worth involving your local health team and the social worker to find the right place and support for your son.

    Let us know how you're getting on.

  • Cheryl PozzutoCheryl Pozzuto Member Posts: 3
    Hi thank you for the reply. He has some support in place and the head teacher and senco worker from his primary school have met with the secondary school to offer them support, so they said they will give him one more chance put if he has another melt down he will be permanently expelled from school and as he dosnt meet the need for a special needs school as his condions are all mild. So he would have to go to a unit for naughty children or be home tutored. I am still concern as how am I ment to stop a child with Sen from having a melt down?
  • GinaSGinaS Member Posts: 79 Listener
    Glad to hear that there is at least some support in place, and they will all try to work together. I'm afraid there isn't a clear answer as to how to stop him from having meltdowns and it's definitely something you need support with.
    There is a reason why he is having these incidents at school (maybe it's not obvious which is what makes it a "challenge"). Has he been referred to a Behaviour support practitioner or psychologist? They could help understand the "why" behind the behaviour and put some strategies in place to support him and his school.
  • Cheryl PozzutoCheryl Pozzuto Member Posts: 3
    Yes his had behaviour support and management but as far as we can tell its sudden changes in his routine that can trigger meld downs inc just seeing a new face on way to school or a sub teacher small things like that. Sometimes I just don't understand why in this day and age people with disabilities still have to try and fit in with non disabled peoples views and not be accepted by schools because they can't cope and is not disabled enough to go to a special needs school.
  • stmartin72stmartin72 Member Posts: 2
    Hi Gina,

    Me and my wife recently became aware that I'm on the autistic spectrum, as I share many traits of Aspergers Syndrome. I often have trouble with my anger, misinterpreting what my wife says to me. When she asks me questions, I get put on the defensive, and sometimes I storm out of the conversation, which leaves my wife feeling numb. Can you recommend any coping strategies for dealing with my anger because it has affected my relationships, my work, etc in the past, and I don't want it to affect my future?

  • CommunityTeamCommunityTeam Posts: 87

    Scope community team

    Unfortunately Gina can no longer support Scope's community as an advisor. She will remain on the community as a champion and can still offer her more unofficial thoughts on behaviours that challenge, autism, and applied behaviour analysis. Just chat to her @GinaS :)
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