dekra

Well I have been refused as expected. F needs must arise from a disability and I haven't proven that or shown that his needs are greater than that of a child his age. The lady on the helpline I called when the DM didn't call me back as she said she would told me to dispute it once my letter arrives.

I have just had a phonecall from the DM at DLA office. She was asking me lots of questions and saying my main issue (as some of you predicted) is lack of dx and medical reports. She is going to phone my HV for more info as HV has know of Finn's ongoing issues for years. Hopefully that will be enough but I seriously doubt it.

I get sedation, it's marvelous. I get it due to a bad experience of an extraction (dentists knee on my chest) and a resultant phobia that developed. I would highly recommend the sedation it's not as invasive as the general and it will prevent your son becoming traumatised with just a local.

A good read thank you Karen.

That does make sense about a longer term commitment. I could consider putting DLA and extra tc money in an account and see if it is enough to convert the loft into another room. Depends on a lot of things including the level of any award if one is made. Best no to start spending money we don't have! I guess I am a bit frustrated at the moment that there is nothing I can do to help get answers regarding dx. Hopefully I will be more settled and less worried after inital assessment.

Thanks Lynne. That must have been a tough time for you realising there was a problem and going through the diagnosis process so young. With F we were lucky enough to be able to enjoy his time as a baby and small toddler with only faint concerns on his development that we just put down to normal fluctuations in childrens development (e.g He crawled and was cruising the furniture at 7 months but didn't walk until 16 months and his lack of verbal skills just seemed like he was a quiet, "chilled" child). The differences started to appear more and more obvious after about 1 year old and the gulf has just grown wider. Part of me still partly expects to go to this assessment and be told the same as everyone has been telling me for years (family and friends who only see him infrequently love to give their opinions) and he's just "a little behind". Then my common sense kicks in, he has too many issues and is obviously not a "normal" little boy for his age, if he does not have asd of some sort then there is still something going on - hopefully whatever it is the doctors etc can guide us to a dx that will help us understand and and plan for him so that he gets the right support. BTW - What does NT mean please? I know from the context it's used what it is but was just after the literal translation. One other thing! My daughter is now 10 months old and so far has not displayed any signs of the issues that F has had but it might be early yet. How common is it for siblings to be on the spectrum even if it's different dx's? From various posts there seem to be a lot of people with more than 1 child affected.

Tally, I feel a bit self-conscious about approaching my GP regarding the DLA - I feel so money grabbing. But I will be making an appointment to discuss things further after F's initial assessment in a few weeks. I will hopefully have more info from the assessment team and be able to discuss that and my needs more with the GP. Until recently I have not really approached the Dr's about F and his support needs as unless it was something I was concerned about medically (like when he started to become incontinent after months of being dry) then I felt I was just supposed to be getting on with it as a Mum should. My HV has always been my first port of call with his behavioural and speech issues but even then she's not been that much practical help, beyond a referal for speech and language and to get his hearing checked. In fact the nursery school were much more proactive and were the ones that got the educational psychologist involved quickly and chased up the localised issues with speech therapy (staffing issues grrrr). I think I buried my head in the sand about things too long, hubby and I had concerns about F's development for a couple of years before we really started pushing for some answers - the number of times we were told it's normal for some kids to be slower at talking ect than others was a joke but we didn't listen to our instints and should have.

Thanks again Spam. I will be letting tax credits know when and if I get an award. I am unsure if I will apply for carers allowance as I would be eligible at the moment as I only get £96 a week for working part time. But when I start uni in Sept that is specifically disallowed for carers allowance. Depending on how long it takes to get an award not sure if it would be worth applying. I have been thinking a lot about the difference the extra money would make for F and for the whole family and if you combine the DLA and the extra tax credits I think the best use I could make of it would be for us to move to a bigger house. At the moment we live in a 2 bed terraced house and as well as F we have a 10 month old daughter. She has slept through the night from before she was 4 weeks old (after the years of constant night time disruption with F this was astounding) and at the moment we just cannot consider putting her in the room with her brother. So moving to rent a 3 bed house and renting this place out with the DLA would mean she could get her own room, hubby and I get our room to ourselves again for first time since F was 17 months old and F would benefit from his room being his own, probabally giving him the largest room and putting a trolley bed in there for bad nights so I have somewhere to crash. Does that seem fair?

Hi everyone, My son is 4 in two weeks time and has his inital assessment by what I believe will be a multi-disciplinary team 3 weeks after that. Can anyone give me an idea of what to expect in the initial assessment please? I realise they can take many months to come to a dx but will they say to me at the time, "yes there are signs you are correct it might be asd of some form, we will do more testing/assessments" or will they stay tight lipped and sit on the fence until they are prepared to give a definative dx?

I am not AS but I do have certain AS-type traits that as I have grown I have learnt to deal with. For example, I am socially inept, I have very few friends and find it hard to have a conversation with people. As a child I was the loner - not by choice but because I just didn't fit in anywhere. I tend to be obsesive about hobbies and interests etc. I am about to start my nursing training in Sept and at times feel physically sick at the idea of meeting so many new people and venturing into placements with staff and patients who I have to interact with. But true to my obsessive nature I am not going to let this get in the way of doing something I really want to. As an adult I have learnt to accept I don't have friends (my wonderful hubby is my best friend) and all I need conversation for is to get by and as long as I manage to convey my needs and can manage some general unimportant "chit-chat" I get by. I am guessing here but my social inadequeces are similar to AS but as an AS sufferer you will have this 10 time worse plus other stuff I don't even know about. All I can suggest is that as you obviously are aware of your limitations to try coping strategies that will prepare you for some basic things. It's a cliche (sp?) but talk about the weather, ask after families and ask about holidays etc. All that rubbish the hairdresser drives me nuts babbling on about lol. When certain things don't come naturally use these simple "tools" to help you out.

I first approached our GP in April this year when my son was 3 yrs 8 months old, the GP was sceptical to say the least he told me he "wasn't convinced" but that he would make the referal anyway. I had no concerns discussing it front of the dr as although F is very bright in some areas (numbers, computers etc) he doesn't have the understanding of complex conversations such as that. His speech delay is more than just an inability to say words, his whole language comprehension is significantly behind a child of the same age. A couple of weeks later we were back at the same GP as F's toilet training had deteriorated and GP examined him and was asking him if it was sore pressing his tummy. F said yes although he was NOT in pain, he didn't understand the question but understood it was a question that required an answer so he choose to answer in the positive. I think the GP got a better understanding then of the everyday things F is incapable of and he mentioned the referal again in a more positive manner. Sometimes when you talk about the things you go through they seem small and insignificant or things that anyone with a child of similar age might encounter. But you add the things up and the frequency they occur and it's a different picture. If your GP is less than helpful still insist on a referal for EXPERT review.

Thanks Spam. I will definately look out for that book, my forms have been sent now but if I am rejected or when it is time for renewal it sounds invaluable. I really do hope we can get this award, I am starting university to do nursing in september and want to be able to give up my part time job so I have time with the family. DLA will allow me to do that and still be able to do the things that my son enjoys and to have the time with him to do them.

Hi everyone, I am in the early stages of getting my son assessed as we suspect he may be on the spectrum. It has taken months just to get the inital referal done correctly and an appointment made for next month. I know the diagnostic process is slow and it could be around 18 months before we get a dx. Having had to cut my hours at work as my son requires so much more supervision than an average 4 year old and because he has me awake so often each night I have applied for DLA for him in the hope that they will recognise the stresses and strains this puts on the whole household. Can anyone shed a light on the processes after the application has been sent in please? I used the cerebra website guide for filling my form in and have a section filled in by the health visitor that knows us and my sons issues. Will they contact the HV and GP (I have given them permission to do so) and do they require a medical assessment by their own Dr? I am doubtful he will be awarded the DLA as at 2 weeks short of 4 they may say that night waking and supervision is a natural part of a childs life. If he was observed for a short period my son seems a average little boy that just doesn't say much. Also I have heard that with the financial situation in the country as it is that they are refusing many more claims than normal. Has anyone else been refused DLA and if so is it worth appealing? Thanks in advance everyone.

Baddad - I like that "out of 10" idea. At the moment he wouldn't understand the concept but I will definately file it away for future use, thanks.

Another little update. If nothing else it gives me a record I can look back on myself. We've got the toiletting issue mostly resolved. He's back out of nappy pants and going to the toilet during the day again, we are prompting him especially if he is out playing to make sure he doesn't forget and have only had one accident in the last week. He's still in night time nappy pants though and only dry about a half the time. As he had so many months dry at night I'm still unsure if the problem is physical, psychological or behavioural but I'm happy with his progress. I have an appointment for an assessment on 24th August, by which time he will have turned 4. I feel relieved things are out of limbo at last.

Thought I would just update this thread a little. My GP did a referal to the local CAMHS but they rejected the referal and sent it back to the GP to advice that the referal should have been made to the childrens assessemnt, diagnosis and treatment service. It was only when I chased things up I was told this and my GP didn't bother doing the re-referal so I had to repeatedly call and push fo rit to be done. After a couple of weeks when the GP's surgery insisted they had sent it the records office at the assessement centre actually called up chasing it for me and got them to refax it directly to her. The referal will now by reviewed by the panel next Thursday where they will decide how to proceed. At the time of my last post my son had started to wet the bed at night and have accidents through the day despite having been dry in the daytime for 8 months and at night for 7 month with only 1 or 2 accidents in all that time. Now suddenly I have a boy who is almost 4 and back in nappy pants. The GP's have treated him twice for suspected infections but his samples always come back as clear. One GP recommended star-charts as it is probably behavioural. Unfortunately my son has not the slightest interest in or appear to understand the function of a star chart so we are back at square on, reminding him to go pee-pee every half hour. Not having any issues with his bowel thankfully, he always goes to toilet for that. We are wondering if he has maybe developed sensory issues that is dulling his sense of needing to go for a pee. I am very frustrated, still having broken nights again, got an unhappy child and despite being 2 months down the line from when we asked for a referal we are not much further forward. I should be starting university in September as a student nurse but I don't know if it's the right thing to do at the moment with so much in our lives unknown.

Thanks for the reply Bid. Sorry this is the first time I've had a chance to reply myself I've had a hectic couple of weeks and son's sleep has been very distrubed again so mine has too. I've spoken to my health visitor who is reffering to the community paed and I have an appointment to see GP next week and HV says he will refer him to the hospital paed so things are moving. We have more words and they are getting put together independent a bit more over the last couple of week so he is making progress. Small things but they give me hope. I still want to pursue a closer review for him as I still have huge concerns.

I am just waiting on the Dr's surgery to open back after lunch and I am making him an appointment. I had thought the Educational psychologist would have been the better person to approach but the more I read the more it seems the GP should be first port of call.

Thanks Mel. There has been a bit of a time getting help for him. When I first approached the health visitor with concerns almost 2 years ago he was refered for hearing tests and speech therapy. Due to the hospital cancelling the hearing test and my own health issues (very bad second pregnancy) and waiting list time it took almost a year for the hearing test to be done (all was clear) and the first speech therapy appointment. He was due for speech therapy review in November but due to staffing issues that is only happening next week now. The health visitor also refered him to the Early needs nursery but he was refused a place due to insufficient needs (priority is given to kids with parents with social issues not kids with developmental problems). Once he turned 3 and started regular nursery school they picked up on his speech right away and asked permission to refer to educational psychologist. I have my 3rd meeting with her in 2 weeks and this is why I have been researching ASD as many of the things he does makes me think he may be effected and the more I read the more I can match things to the triad of impairments. The nursery not only picked up on his speech but were querying his comprehension when you speak to him. This bothers me at times too but I also know he understands more than he always lets on - think that's typical for any child however. Once the nursery key worker had gotten to know him a bit better she now agrees whilst his comprehension is not always there it's not completely absent even when he doesn't let on he understands. Reading some topics on this forum have rung yet more bells. There are also somethings that people seem to mention regularly about children on the spectrum that are not issues for my son. No lining things up or major problem with changes to daily routine being the two that stand out. I assume that not all aspects are there in all types of ASD. The more I think about it the more I am going to ask the school and educational psychologist, because if he does have ASD then getting diagnosed and finding out where he sits on the spectrum might help me understand him more so I can anticipate new issues that might arise rather than learn to deal with them blind as I have been so far.

Thanks Robert, no it does not matter to me or his family that he fits the mold but I just want to be able to help and support him as best I can. What I do want is to help him become that happy little boy that he was as a baby - the last 2 years have not been good for him with lots of broken sleep and many frustrations and tantrums mostly to do with his lack of communication skills.

Hi everyone, I just posted the following on the Welcome forum but thought this forum might actually be the more relevant place so sorry to anyone that is reading the following twice but I really would like to hear from opinions from people that have experience with ASD's. For over a year my husband and I have had suspicions that our sons problems combine to possibly be something within the Autistic Sectrum. His speach is very very behind although in the 7 months since he started nursery school it has inproved. He will be 4 in August and he has only recently started putting sentences together, even then the ones he does use are learnt/mimiced he doesn't make independent sentences. He has only recently started to learn that other people have names. This is a big step forward for him as he does not mix very well with other children. He plays along side them not with them IYSWIM. Mostly he likes to play in a wee world of his own however. He understands basic instructions but you cannot have a conversation with him. Even at nearly 4 he mostly parrots back to you. When he was a baby he wasn't a great sleeper or a bad one. Just what I guessed was average. After 7 months he went into his own bedroom and was fine until he was 19 months when he woke screaming one night. After that we had him in bed with us for 13 months then progressed to having him in his own bed but in our room for another 10 months. During all this time he would wake in the night frequently terrified and upset. Speaking to the health visitor it was put down to night terrors. January this year we tried to move him to his own room once again and with the addition of his own TV. Finally he has a good bedtime regime, happily goes to bed at 8pm and if he isn't sleepy will watch tv, when he wakes in the night as he still does at least 2-3 times he calls me (I am a very light sleeper) and all I need to do is re-arrange his covers and pop the tv on low and he settles back down. This has been a welcome relief to us all. With his serious lack of speach his toilet training was seriously behind, but we got that sorted soon after this 3rd birthday. Other things that concern me is that although in many ways he is a smart little boy there are basic concepts he doesn't grasp. Put him in front of a computer and he can play Mahjong but he doesn't understand basic social factors like boys and girls. When I mentioned names earlier he has started to call other children by their names but their parents he generally calls them by their childs name also or calls them Mum. He likes rituals but not to a crippling extent. He likes to have set things he will say to you then you must give the expected reply so he can again give his next set reply. If you don't say your part of the dialogue there can be hell to pay. Getting his teeth brushed has always been in issue. For a long time he would not allow the toothbrush into his mouth then later he has become obsessed with brushing his teeth and we now go through 3 or 4 brushes a week. I need to hide the brush and paste after he has used it but I have to distract him first to prevent a tantrum. Finally after that first night he woke screaming he developed a problem with noises. He will scream and hold his ears at various noises. The local chip van that blows a whistle to annouce it's arrival in the street, the noise in a large echoy public place like the swimming pool. I tried taking him to Disney Live last month and it was a disaster. Another childs birthday party was a disaster. He gets very upset and cannot be consoled. It is not just loud noises. In our local Argos there is a conveyor belt that rattled quietly, nothing more than white noise but it results in the hands over the ears and whimpering. Hand dryers in a public toilet are a huge problem. Depending on the noise he can almost completely become rigid and will not move or only move if it is away from the noise. On more than one occasion one of us have had to pick him up to get him someplace he can't hear the noise for him to settle down. He has had his hearing checked for both this and the problems with his speach. He also has obsessions with yogurts, likes to count things repeatedly (other than Mum and Dad his first words were numbers and he was counting into the teens by about 18 months old) and prefers to play in things that have more of a sensory imput such as water/bubble or on the computer/ds rather than with normal toys. He has attended speach therapy once and was supposed to be reviewed last year but staffing issues has meant that is only happening next week now. Since he started nursery I have met with his key worker, and educational psychologist twice and he has another review due early next month. Whilst there has been improvement there is still huge delays in his development. I think that is the majority of the issues we have with him. What I wanted to ask was does this add up to a possible ASD? If so what sort of things should I be asking the psychologist when we meet again and how would I go about asking for him to be tested? Am I just paranoid or does some of what I have said her sound like it should be investigated further?

Hi everyone I am new here and was looking for some advice/recommendations regarding my 3 year old son. For over a year my husband and I have had suspicions that our sons problems combine to possibly be something within the Autistic Sectrum. His speech is very very behind although in the 7 months since he started nursery school it has inproved. He will be 4 in August and he has only recently started putting sentences together, even then the ones he does use are learnt/mimiced he doesn't make independent sentences. He has only recently started to learn that other people have names. This is a big step forward for him as he does not mix very well with other children. He plays along side them not with them IYSWIM. Mostly he likes to play in a wee world of his own however. He understands basic instructions but you cannot have a conversation with him. Even at nearly 4 he mostly parrots back to you which in itself is progress as last year he didn't even parrot. When he was a baby he wasn't a great sleeper or a bad one. Just what I guessed was average. After 7 months he went into his own bedroom and was fine until he was 19 months when he woke screaming one night. After that we had him in bed with us for 13 months then progressed to having him in his own bed but in our room for another 10 months. During all this time he would wake in the night frequently terrified and upset. Speaking to the health visitor it was put down to night terrors. January this year we tried to move him to his own room once again and with the addition of his own TV. Finally he has a good bedtime regime, happily goes to bed at 8pm and if he isn't sleepy will watch tv, when he wakes in the night as he still does at least 2-3 times he calls me (I am a very light sleeper) and all I need to do is re-arrange his covers and pop the tv on low and he settles back down. This has been a welcome relief to us all. With his serious lack of speach his toilet training was seriously behind, but we got that sorted soon after this 3rd birthday. Other things that concern me is that although in many ways he is a smart little boy there are basic concepts he doesn't grasp. Put him in front of a computer and he can play Mahjong but he doesn't understand basic social factors like boys and girls. When I mentioned names earlier he has started to call other children by their names but their parents he generally calls them by their childs name also or calls them Mum. He likes rituals but not to a crippling extent. He likes to have set things he will say to you then you must give the expected reply so he can again give his next set reply. If you don't say your part of the dialogue there can be hell to pay. Getting his teeth brushed has always been in issue. For a long time he would not allow the toothbrush into his mouth then later he has become obsessed with brushing his teeth and we now go through 3 or 4 brushes a week. I need to hide the brush and paste after he has used it but I have to distract him first to prevent a tantrum. Finally after that first night he woke screaming he developed a problem with noises. He will scream and hold his ears at various noises. The local chip van that blows a whistle to annouce it's arrival in the street, the noise in a large echoy public place like the swimming pool. I tried taking him to Disney Live last month and it was a disaster. Another childs birthday party was a disaster. He gets very upset and cannot be consoled. It is not just loud noises. In our local Argos there is a conveyor belt that rattled quietly, nothing more than white noise but it results in the hands over the ears and whimpering. Hand dryers in a public toilet are a huge problem. Depending on the noise he can almost completely become rigid and will not move or only move if it is away from the noise. On more than one occasion one of us have had to pick him up to get him someplace he can't hear the noise for him to settle down. He has had his hearing checked for both this and the problems with his speach. He also has obsessions with yogurts, likes to count things repeatedly (other than Mum and Dad his first words were numbers and he was counting into the teens by about 18 months old) and prefers to play in things that have more of a sensory imput such as water/bubble or on the computer/ds rather than with normal toys. He has attended speach therapy once and was supposed to be reviewed last year but staffing issues has meant that is only happening next week now. Since he started nursery I have met with his key worker, and educational psychologist twice and he has another review due early next month. Whilst there has been improvement there is still huge delays in his development. I think that is the majority of the issues we have with him. What I wanted to ask was does this add up to a possible ASD? If so what sort of things should I be asking the psychologist when we meet again and how would I go about asking for him to be tested? Am I just paranoid or does some of what I have said her sound like it should be investigated further?