Sally44

My son has OCD and that is also grouped together with Anxiety Disorders and Body Dysmorphic Disorder and is also connected to eating disorders - which are often co-morbid with those diagnosed as on the spectrum. It is most likely a mental health issue, as are eating disorders, because, as you point out, your partner is not seeing their body as it is. And stomachs should curve out normally, not in. So they are obsessing about it and having compulsions which maybe to exercise, or reduce or even stop what they are eating. He needs to see his GP and get a referal. I think an organisation such as "MIND" might be able to give you some advice on where to go and what to ask for and what to expect in terms of professional therapy. My own son is 13, so he is under CAHMS [child and adolescent mental health services]. Your partner needs some kind of therapy, and may need some medication too. It is likely he is highly anxious, and there maybe things in his past that are effecting his behaviour now. But generally cognitive behavioural therapy is the therapy with the most clinical evidence of having a positive effect. He sounds seriously underweight if you can lift him. My partner is quite thin and I could not pick him up.

I agree with the above. Do you have a diagnosis of depression/anxiety etc? Have you tried contacting MIND.org to find an advocate who maybe able to help and support you apply for ESA? Can your GP sign you off sick? Has he prescribed you any medication? From your post I just don't think you are able to seek work at the moment. You do sound completely drained. And mental health and anxiety is also taken into consideration with ESA. It isn't JUST about physical ability/disability.

Thanks. It hasn't been easy. It has taken us years to get to where we are now. And Childrens Services are scary people to deal with. I can easily see how children get taken into care that don't need to be. And yet others are left with parents who end up injuring or even killing their child. They were assuming that some of my sons behaviour was self harm, or neglect by me for not stopping him carrying out some behaviors. But thank goodness CAHMS explained that these were not intended self harm behaviours, they were ASD and/or OCD behaviors that they were not concerned about in terms of self harm, but were indications of the ASD/OCD. And I had to finally invite CAHMS and the Developmental Paediatrician because Childrens Services did not invite them for 6 months! So they were not seeking any medical advice on his diagnoses at all. Just pointing the finger at parents. Very frightening for us. So I don't know if I would feel able to 'recommend' any other family to go through the process as we did. Because it could very easily gone very wrong for my son and the family. But for now, I think we are making some headway.

<p>Just wanted to update people on the current situation with our son.</p> <p> </p> <p>Childrens Services have now offered us 5 nights a week residential during term time. And they are also providing 10-15 hours a week support during the school holidays via Direct Payments.</p> <p> </p> <p>It has been a roller coaster of a ride. We have had problems with all professionals involved. And we thought, at one point, that childrens services might take him into care. But they didn't, and they tell us that was never on the agenda anyway - but they did put that in reports as a possible outcome.</p> <p> </p> <p>It has been very scary dealing with childrens services. And that is going to be on-going contact under a section 20. But we are trying to work together for the benefit of our son.</p> <p> </p> <p>We are hoping that this residential will help him with his anxiety over transitions and will enable him to have a consistent environment where his OCD obsessions and compulsions can be supported.</p> <p> </p> <p>We have also had a breakthrough with clinical psychology now agreeing to accept a referal for CBT for our son. I have posted about that as a separate topic.</p> <p> </p> <p>So we are hoping this is all positive. And we have achieved what we were seeking to. It hasn't been easy. It has been painful. I don't really know what advice I would give to another family. Childrens Services have the power to take parental responsibility off you. And Childrens Services do not have any real understanding of ASD and mental health conditions. Some of those behaviours they attributed to our poor parenting. But we have managed to get CAHMS and the Developmental Paediatrician to attend meetings to set them straight on that. </p> <p> </p> <p>We have alot of experience and were able to turn that view around. I am sure other families may not be able to do that and could be portrayed as incapable. So think carefully before involving them. But for us it is looking like it could now have a positive outcome for our son. Which was the whole point of involving them in the first place.</p> <p> </p> <p>The only thing I would advise any other family involved with Childrens Services, is to ensure that other relevant professionals are invited to attend eg. CAHMS, or Paediatrician and make sure that YOU invite them. Don't wait for Childrens Services to do it. They kept telling me for 6 months that they were going to invite CAHMS. They never did.</p>

I don't think there are any easy choices for you here. Obviously he knows he should be paying maintenance and isn't. Can you have a 1:1 conversation with him saying that your son needs to spend time with his father and that some of that time should be 1:1 without the other children/wife. And that your son needs that to feel valued and for them to build a bond between them. How often do they see eachother now, and could every other visit be a 1:1 where he meets your son and they go somewhere together alone? His wife and other children have access to him all the time. When your son sees him he will want to feel valued by his father. Would your ex understand that? See what his response is to that. Does he understand what you are saying. Is he prepared to do that. And also tell him that he asked you to stop the CSA because he said he would pay you himself. I suspect he has said that because the CSA would investigate how much money he actually earns and from your description it sounds like he is earning alot more than the CSA knew before and his maintenance payments were calculated on his previous level of earnings, and not what he gets now. I understand what you are saying about your son just getting the 'crumbs', but at least that is something. But your son maybe entitled to a third of the loaf and you may need to take a stand on that issue. You and your son may need to say "we are worth your time and if you are not prepared to give it then access stops." Because your son does deserve to be treated fairly. You could make a stand and get what you want, or it could go the other way and your son loses access to his dad. Without the CSA you have no idea what is earning and what maintenance he should pay for his son. He has agreed to continue paying you maintenance at the old level he was paying before. And he hasn't kept his word. Have you ever talked with your son about how he would feel if he stopped seeing his father? Would his father stop seeing his son if you contacted CSA again? And if he did, what does that tell you about him? I don't know if there is any service that you can call to talk through these options. Maybe Citizens Advice? At least you would be talking with someone that would have some experience of CSA and the wider issues. I just thought I would also mention "short breaks". This is something that children can access whereby the LA pays a provider to spend some time with your son. You can phone your local authority and ask who is responsible for short breaks provision. It is usually Childrens Services. This could get your son 1:1 provision for a number of hours each year, for someone to take your son out to do things he likes. And one of the reasons you could say you want this service is that your son has an ASD diagnosis and is isolated. He has social communication difficulties. He has few [or no] friends. He does not have a consistent male figure in his life and you want him to spend some time 1:1 with a male mentor. And I would suggest you get this up and running before you challenge your ex, so that there is something else in your son's life that he looks forward to doing on a weekly basis.

Just wanted to post about my recent experience with PALS at our local hospital. And this is a link to PALS http://www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68 My son has ASD and OCD, and we have been trying to get CBT therapy for him for years. Clinical Psychology had recently refused a referral to them from both the CAHMS Psychiatrist and his school. That left my son with a diagnosis of OCD and no medical input/therapy for that. And OCD does not go away on its own. It can be a chronic lifelong mental health issue. So I thought I would give PALS a shot. I spoke to the woman, and explained the situation and what had happened and what had not happened. She got in touch with the Clinical Psychologist, and they have now agreed to accept a referral. So this is a major breakthrough for us. What I would advise other parents, adults to do is to get the relevant professional to refer you to whatever professional department needs to see you. Even if the GP or other NHS professional says that they don't think a referal will be accepted. The fact that you have been referred will enable you to ask PALS to become involved to find out why the referral was not accepted and to challenge that decision, especially if it contradicts NICE Guidance. It is also useful to get the relevent NHS guidance for that particular medical condition or disorder to find out what the NHS guidance says should happen to patients presenting with that condition/disorder. This is a link to the NICE Guidance. It basically says what the NHS should do for each medical condition/mental health disorder. http://www.nice.org.uk/Guidance/Topic In our case it clearly states that the most effective form of treatment for OCD is cognitive behavioural therapy and that that should be offered to the patient.

It is difficult trying to decide between a local or out of county school. How is your daughter now? Does he have friends in school? Does she socialise with them out of school? What do you feel her social skills are like compared to your other boys? My advice would be that she is NOT making progress in the small school and small class sizes she has now. So you need smaller classes, specialist teaching. In any school that does not provide specialist teaching as part of their standard delivery, that means that any specialist teaching will be reviewed every year under your daughters Statement, and so that could potentially be reduced, or increased every year [but usually LAs are looking to reduce]. So you need to get specific Dyslexia qualified teacher to come into whatever secondary school she attends. And they would deliver the specific literacy [and numeracy if needed] programme for a set time each week eg. 1 hour each week for literacy or numeracy [the specialist teacher SHOULD detail what length of time the session should be]. That same teacher should train/liaise and give advice to the class teacher and a specific teaching assistant who should practice that literacy programme [and numeracy?] every day for xx minutes. The specialist teacher should also advise school on how her work should be presented in class eg. does your daughter need all her work on a laptop. Does she need voice recognition software. Does she need a reader/writer etc. What is MOST IMPORTANT is that the specialist teacher is trained to a level to both teach AND ASSESS. Because you need that specialist teacher to be able to assess and monitor if your daughter is making progress. At the time we sought this out they needed to be qualified to a LEVEL 7. There is a website https://www.patoss-dyslexia.org/ where you can find the level of teacher you are looking for. Then you also want including in the Statement, which must be in the specialist teachers report of assessment and recommendations. That they attend the Annual Review. That they give IEP targets to school. That they train/laise with the class teacher, TA and parents. They must quantify and specify as above so that you know exactly what they are doing. As you know that is the most important. So try to find a teacher that does know about the SEN Statementing and Annual Review process. Visit any potential school and see what they can provide. I think the most important is to remember how she is not making progress in the current setting so she needs significantly more than she is receiving now.

What a relief to finally get the Decision letter. I know the feeling. Well done. I know you have more infront of you, but this is a good start. Now you really need to be looking for secondary placement. Somewhere that can meet all her needs. Are any of the schools her brothers are at a possibility? Anyway, take some time off, while we have this glorious weather, because it cannot last for ever.

Can Glen communicate discomfort or if he is in pain? My son often does not say anything unless you ask him the direct question "is your ear hurting you", then he might say "Yes, I've not been able to sleep for days!" But he never gives up that information unless he is asked. Could Glen be the same and he needs to be asked the question? And can he give a response verbally or using PECS or similar?

Do you mean your mum and brother have an untidy house? Could these be OCD obsessions? Is he worried about germs and contamination?

Although another operation might not help his sight, could Glen be hitting his eye because it is irritating or hurting him? Can he communicate that using PECS?

How does or can the home access psychiatric input [advice and not just medication]? And I know you will also be thinking that hospitalisation will be yet another change for Glen. Can you go and see the hospitals that might take Glen. Or is there any other hospital elsewhere that is more appropriate? Is there anything you can think of that might have started this downward spiral? And how does Glen respond to medication, and is he on medication for depression? Has Glen been hospitalised before?

Sorry to hear about Glen. It is horrible being a parent and knowing there is nothing you can do to make it better or easier. I'm glad he's somewhere you have such confidence in. Mental health services for children/young adults is scare. I've been trying to find some organisation that can advocate for my son and the family regarding mental health issues, and there is nothing for children at all. We are having problems with childrens services who just have no understanding of ASD and OCD. I just get so fed up of going round and round in circles. And we've had very unhelpful and damaging 'advice' from the school psychotherapist who is of the opinion that his anxiety, OCD and even some ASD behaviours are due to some emotional 'trauma', and is pointing the finger at the home environment! Beggers belief. Especially as he does not even talk to my son and my son does not talk to him. He sits and watches him play with plastercine! He is from the Freud school of thinking. I've told school I am not happy for my son to see this person anymore.

I know it is very stressful and draining. But that is the process and we just have to methodically plod through it. I'm sure they will be Ordered to assess. So something positive will come from this Tribunal. And once she is statemented she has access to other types of schools. Yes you will need to appeal the final Statement. But it should get your daughter into a school that can meet her needs and where she can make progress. You've already done it with your other two boys. Are any of the schools they attend suitable for your daughter?

Is Quinoa pasta any good? I've tried GF Pasta and Maize pasta and it was horrible.

I am thinking of trying my son on this type of diet to see if it helps with his extreme fatigue, wind and loose stools. But first I am trying it on myself so I know what tastes nice and where to get it. I have fibromyalgia and this diet can sometimes be beneficial for that condition, so i'm having a go. What I have found almost immediately is that I feel very nauseous most of the time. I am also full of wind [whereas I wasn't before], and I keep burping sulphur smelling burbs. Not nice. I have now also cut out Soy incase that was the cause. But does anyone have any other suggestions as to the cause of the sickness and wind? Or could it just be a reaction to the change in diet and will get better in a few days?

The LA have been fobbing you off. That is what they do. They try to keep funding to a minimum. But now the Panel have listed her needs, the LA have to agree. The LA cannot fob off the Panel and the Panel go with the Code of Practice - as they stated. They are not interested in the LA internal criteria, they go on law. It does not matter how much the school gushed about the amount of support she gets. That actually works in your favour because even with that support she is not making progress. So she needs more. That is why you need a notebook with you because you could have said something like that as a summing up statement ie. "The LA have now agreed that my daughter has needs as you have identified them. That is something they have always denied to us. The school have detailed how much support she receives and yet she is not making progress. She has a twin brother with an ASD who attends an independent special school and we believe our daughter needs thorough assessing as she too maybe on the spectrum." etc etc But the Panel are not stupid. They can see the evidence and what it means for themselves. The NHS OT will not be able to provide much if anything for your daughter. I think I sent you the information from the college of OT's regarding Dyspraxia? The NHS do not provide any therapy for Dyspraxia. And if she has a sensory processing disorder the NHS do not provide Sensory Integration Therapy. That is why if these are needs your daughter has, that you need an independent OT to state that, and to detail exactly what therapy she needs. Then you write to the Head of the NHS OT department in your area and ask them "What 1:1 therapy does the NHS services provide in school for Dyspraxia and Sensory Processing Disorder and do you have any OTs trained to level [can't remember what level it has to be for sensory processing disorder, but an independent OT would know]. I can tell you now that the NHS will not have anyone. And when you find the school that does have OT's and SALT's employed on site, that is the reason you appeal for that placement as the ONLY one that can meet your daughters needs, because you already have letters from the NHS saying that they don't provide 1:1 therapy in school for Dyspraxia and Sensory Processing. The same applies to the LA specialist teaching service. Again write to the head of that service and ask them how many specialist teachers the LA has. How many of them go into mainstream schools and deliver a 1:1 dyslexia teaching programme. Ask them how many of their specialist teachers are trained to level 7 to both teach and assess. Again they won't have anyone. They will have a teacher with 'experience' or 'training' in dyslexia who might give advice to the school or TA. That is not the same thing. Your daughter is now years behind and needs a specialist teacher and that provision is listed as they type of provision that can be provided [listed in the SEN Code of Practice]. Have a look on the PATOSS website [independent specialist dyslexia teachers]. And they need to be trained to level 7 so that they can both teach and assess because without proper assessment you don't know if they are making progress, so how can you monitor progress without proper assessment? Even a specialist ASD Independent school may not have a suitable specialist dyslexia teacher. The one my son goes to didn't. So we had to get costs for the LA to buy that in on top of paying the Independent School fees. And the Panel agreed and Ordered the LA to pay it. So your arguments for your choice of school will be similar to the arguments we used. That our son was average cognitive ability but would be unable to cope mainstream - but not LA special school material. And that the ONLY school that could provide the SALT, OT, specialist ASD teaching and who had an Educational Psychologist on site was our parental choice of school PLUS we needed additional funding for a specialist teacher for his dyslexia and dyscalculia. It really depends on what her main needs are as to whether you look for a dyslexia school with SALT and OT that also has able children on the spectrum, or an ASD school with SALT and OT and buy in additional specialist teaching. It is illegal to use another child's statemented time. The school may not know this [but I doubt it], but the LA definately knows this is illegal. You are not the only mother with SEN children. The LA do know the law inside out. They just don't apply it for as long as they can get away with it. Just keep monitoring assessment results because they cannot keep faking it. Yes she maybe able to have a reader and writer and that will probably increase her scores. So if she needs it why aren't they providing it full time?? Plus a reader/writer does just that. They don't 'help' by explaining what things mean. If she has difficulties with Speech and Language then that is a SEN. My son would also do much better if someone sat with him explaining what everything meant. So would any child. I'll eat my hat if they don't Order an assessment for a Statement. And I think you need to start thinking and looking for the right secondary school from now on. But remember you will probably be seeking that as part of an appeal for the finalised Statement - which as you know will probably be pants. Try to do something nice this weekend to take your mind off it.

I think they will order an assessment by the LA as she has dyslexia plus other needs identified by the panel by the SALT and OT. So it is a complex case, and so she needs assessing and it is even more important as she is in year 5 and you need the time to get the Statement, and then appeal the Statement. If she is not making progress in the primary classes of xx pupils. How are they expecting her to cope in a larger mainstream environment? She needs to really be up to a level 3a/4c as a minimum, and she is lower than that. But that does not necessarily mean special school - but maybe dyslexia specific. But with the SALT and OT needs, do you think she could be on the spectrum? I know there's no point saying not to worry. But I think it will go in your favour.

Do you feel that they did a thorough assessment? Was it all based on talking about past history, or did you undergo a specific standardised assessment? Did you and your mum know exactly what this consultant was going to do prior to the appointment? And did they do that? If you did complain, what would you be complaining about? His timekeeping? Or do you feel he did not do a thorough consultation?

Make sure you still take her report/letter with you to submit as late evidence. Make sure you take a notebook to write down anything you need to address or counter. Write a short opening statement about your daughter and why you are at tribunal. Take a photo of your daughter on her own, or a family shot. Make it a nice happy one. And put it in the middle of the table. Use your notes from your note book to make a summing up statement at the end. And ask the Panel if you can make a final statement at the end. The Panel usually ask you to say something about your daughter or why you are appealing at the start of the hearing. Good luck. Write down what the main points are. Don't let the LA sidetrack things by bringing up small things that are irrelevent or minor or just take up the time.

My son was allowed to use a staff toilet because he had problems with the hand dryer suddenly going on [and this was an ASD school, so I didn't understand WHY they had those things in the toilets in the first place!]. The other thing I wondered if whether he has any worries or fears about germs or contamination? My son started with sensory issues, but his anxiety grew until it became diagnosed as a separate disorder, and he also now has a diagnosis of OCD. I recognise that he has had OCD traits [because OCD type traits are also typical of an ASD], but it is now a separate disorder. So can your son tell you WHY he does not like to use public toilets?

I agree with Bed32. You just need to appeal at this stage within the timescale. All you need to say is that you are appealing against the LA decision to cease the Statement. Then you have your deadline within which to submit your evidence. And that is best submitted just inside of the deadline date. The reason for that is that it gives the SEND Panel time to read it all. But it gives very little time for the LA to see what your evidence is and counter it in any way. You can put whatever you want as part of your evidence. But try to keep it short and relevent. If the LA do not give you reasons why they intend to cease the Statement, you can complete a "Request for Changes Form", which you download from SEND. You can ask the judge to Order the LA to give their reasons for ceasing the Statement so that you know what the main issues of the appeal are. A Judge will then read your request, and make a decision. The Judge may order the LA to detail what the main issues are for ceasing the Statement. That then gives you the time to counter whatever the LA have said.

If the LA do not get this teachers advice - which is the reason they sought the adjournment - your late evidence is that very same teachers advice. So give it to the panel on the day and say that: "The LA wanted xxxxx advice to be included in the evidence, and is why the LA sought an adjournment when it became evident that she could not attend in person. The LA have failed to get her written advice, but I have it here and want it to be admitted as late evidence." The LA would find it very hard to explain to the Panel why they refused to admit advice they had sought an adjourment to get. And i'm sure the Panel will agree to admit it anyway, even if the LA refuse. It is relevent up to date advice from the current teacher.

It could any or all of the reasons you've mentioned. If he does not like using toilets [for whatever reason], and he knows that drinking = going to the loo, then he maybe restricting the liquids for that reason. Or it might be a sensory thing that he does not feel thirsty, feel the need for the toilet. Or it could be because it is sore and again he is avoiding drinking to avoid having to wee. I think the first step would be to get a sample tested to make sure there is no infection. Then you need cream for the soreness. Your son is 10 with a diagnosis of Aspergers. Can he give you any help as to what would help him to drink more, and what would help him to go to the toilet out of the home and in the home. My son also had the soreness [is his foreskin tight?]. And he has OCD and fears of germs and contamination make it so that he does not like to use any toilet other than that at home. He also has a sensory processing disorder and often cannot tell if he needs the loo, or what he needs it for ie. cannot distinguish between a wee and a poo sensation. But he isn't limiting his drinking. That is the main thing out of everything you've said that is worrying. Can you see the GP and be able to tell him that your son has drunk xx ml in a 24 hour period. It maybe that the GP will say he is drinking enough - or not. Is there anything he likes to drink? My son drinks milk and nesquick by the litre. Infact i've now changed to fat free milk because of the amount he was getting through. BUT he drinks two or three very large drinks a day. Not smaller drinks throughout the day.

At this stage you are simply looking for SEND to Order the LA to assess for a Statement. What you are thinking about is what the actual Statement could or should contain. You are thinking too far ahead. At this stage it is simply that your daughter has a, b and c difficulties. She is in a school where there are xx children per class and a ratio of x adults per x children. She is falling further and further behind. And the current SENCO agrees that that is the case. So she needs properly assessing so that all her needs are identified and so that the right support, provision, specialist teaching/therapy is in place so that she makes progress.