dekra

I take it you are in Scotland?

Sorry I can't help Lyndalou. My 4 year old is pretty similar, he uses very little intelligible language. What he does say is mainly to myself and his dad, around other people and children he says very very little at all.

Thanks for your replies Justine Kathryn and Sally. The MDT felt he needed further observation The educational psychologist will be liasing with the new nursery even although it is a private nursery and they usually only work with the council ran ones. The EP will give feedback to the MDT and they are asking the nursery head teacher/manager to prepare a report too (the nursery manager is a primary school teacher so she is well used to these sort of things) He starts 2 afternoon sessions with the Early Years Language Resource on 2nd November and they expect this to increase to the full 4 sessions after he has settled in and they have evaluated him fully. This is likely to be after Christmas. The EYLR has a teacher SALT EP plus SAL assistants and they are all trained for these type of issues. They will be providing feedback to the MDT too. The MDT are meeting later in November to discuss him again hopefully with a fuller picture so they can plan whether to proceed with further specialised observation. Another thing I noted about the letter was the Dr noted that his eye contact with Finn was very fleeting when encouraged. I remember him asking about our observations of this and I have to admit we had never noticed a particular eye contact problem but once we began thinking autism seriously it was something we tried to check for and best we could say was it's not a lot and never for long but it's not absent. I was concerned that we may have been seeing a problem where there was none just because we were expecting it. I do think he has some sensory issues - certain sounds upset him and can make him upset - this varies from outright screaming (almost in terror to listen to it) to hands over ears and a refusal to move. We have managed to overcome on of these issues with the echoy noise of the swimming pool. He loves swimming so much he now only covers his ears but will walk to the pool and once he's in the water it's all forgotten. Does is return to problems in the toiletting department count as sensory issues? He's been having urinary accidents again during the day for the last 6 months after an extended period being dry and has to wear nappy pants at nights again as he is wet every night. Over the last couple of weeks we have had 4 or 5 incidents where he has poo'd himself too, this has been mostly at home but was once at nursery too. I am just so confused over that one I can tell you as I put in a post about it he's not poo'd himself for a long long time - well before he was out of nappies he was going to the toilet for a poo (not asking just going). The SALT has said that his receptive language is working at the 1 or 2 word level and his speech is jargonistic and is mostly unintelligible with the odd clear word. So there is not a lot to work on. He does not use pro-nouns ( still doesn't understand that there are he's and she's so even if he used them he wouldn't know the appropriate one to use), he rarely even uses the term "my" or "mine" although recently he's doing that a bit more. Mostly he talks about himself in the 3rd person. He does repeat back a lot but not always so I am not sure about echolalia and the SALT hasn't raised it specifically. She has said that most of his speech beyond single words are learnt phrases. I am not going to chase the MDT until after the review meeting - I am happy at the moment that they are taking the appropriate action. I will review their review and decide from there if I need to get more pro-active with them.

After my son's inital assessment back in Aug I was told they would have a review meeting with the multi-disciplinary team the next day including the paed and SALT that assessed him but also the consultant paed and consultant clinical psychologist. They have said from the review he has many features within the traid of impairment as well as GDD and will be continuing observations for a period of time. So I am confused, they said don't think ASD just GDD and communication disorder but now the letter is mentioning all 3 with his problems listed as 1. On going assessemnt of communication disorder including Autism and 2. Generalised Developmental Delay (I'm assuming Generalised and Global are interchangeable terms for same thing). I know it's just a name whatever dx he eventually gets but I'm as confused as heck over their wording. I THINK it seems to mean they are not ruling out ASD and will be continuing to observe him and decide further after more observation and input from HCP's involved in his care.

I agree with Tally, whilst what they are saying can be construed at them not understand it could also be that they are trying to understand, to put themselves in your position and give advice they think would help. It maybe that they've not done this successfully but it's nice that they have tried.

Hi Brian, I don't have anything to add that's helpful but I think I saw an advertising board for you guys in Braehead last weekend. Both hubby and I thought it was a good idea.

I like numbers but mostly prefer even numbers too. 5 is fine as I think of 5 as half of a pair that makes a nice round 10. I hate being an age where I am an even number and then an odd number. Dreading 41 but for some reason I don't mind double odd numbers. I wasn't keen on 31, liked 33 as it was a repeated number, I am currently 35 (well for just over 2 more days) and I don't mind that as it's the midpoint between 2 decades. I think 37 will be ok as it adds to 10 and 39 I think will be ok as 9 is 3x3. I can justify most of the numbers IYKWIM. 41 though, that's just wrong

That's positive news Justine - hopefully the letter this morning is just a clerical error and you will be moving to the correct bands soon. I think I am struggling for room with 2, I can't imagine how you cope with 4 and a bit! That said you just do don't you. It's the same when I read about people here with children with difficulties that are significantly more than my son has, I wonder how they cope but before they HAD to cope I bet they never expected they'd be able to if you had asked them. The medical points for my application were uploaded today and we have 50 points. This is the lowest possible award for medical points but having spoken to a few housing area offices it's not impossible to get what I am after with that number of points. One area had 2 houses allocated last year to people with the same number of points. It just comes down to how many people are on the medical priority list as that gets a smaller proportion of properties allocated to it than other groups but I am hoping there are a smaller number of people waiting on it. That I am aware they don't tell you "where you are on the list" like they would years ago so it's pretty much ask about the number of houses they get and the number of points they go for and then just guestimate from there.

A lot of what you said sounds very complicated and must have been difficult to put together. I really hope you have a successful outcome for your son.

Hi Suzanne, A lot of what you are saying is similar to my son also but so far he has only been dx with global developmental delay. The important thing is that you have the right people on board with your concerns and they are taking you seriously. It too until well after my son's 3rd birthday for anyone to agree there was a significant issue and he was 4 before he finally saw a paeditrician and got a dx. In the approx 6 months since my husband and I first shared our concern to anyone other than each other of possible ASD I have managed to achieve things for him that were not possible before - all through being able to have my concerns taken seriously. You seem to be doing all the right things although I'm a novice and you've already had some great advice from more experienced members.

We had the OT visit today from the council for accessable needs (posh name for medical) points allocation. Although Finn's dx is GGD (with CD) the OT said she sees many ASD and ADHD children and the needs are pretty similar and she will be recommending we are put down for a 3 bed property. We will be allocated medical points for Finn although she was unable to tell me how many. She did say it would be a lot less than someone with a physical disability and that is fair imo. She also said that although there are less points we may have a shorter wait as we can take any type of 3 bed house not just ones that are adapted with a ramp or wet room etc. So fingers crossed - I know there is still going to be a wait to be rehoused but maybe now it will only be a year or 2 rather than 6-8 years or more.

I don't have bother with constipation now but a year and a half ago he did have lots of constipation problems and this was put down to his not drinking enough so we try to keep his fluids up. His eating can be hit and miss, some days he will eat well other days he doesn't want to eat and as I was a bad eater as a child and have awful memories of being forced to eat (then subsequently went on to become obese ironically) I try not to make a big issue of it on the principle that if he is hungry enough he will eat. Very recently he has started to tell me he is hot but that is literally just in the last couple of weeks. Other than than he's not shown much expression of any sort of phsycial discomfort. He's said his tummy is sore a few times during the last few months but that was always shortly before going to the toilet to open his bowels. I actually just had a convo with my hubby about our son after writing that last paragraph and I have just realised that whilst we are having more issues and old issues are not resolving he seems in general to be a happier child than he was 6 months to 18 months ago. For a long long time he was an unhappy little boy and I was upset I couldn't make that right for him. Now whilst there is still problems and worries he is happier and I think that is important. I don't know if he's just coming to terms with his limitations or his communication is enough he's not completely frustrated all the time or just that my hubby and I have a better understanding of F and his needs but he seems more relaxed and happy now.

My son is 4 now and has been going to the toilet for poos for about 18 months. He was using the toilet for those long before he was dry enough to take out of nappies. Back in April he started wetting himself again out of the blue and although this has lessened so it's not several times a day like it was before we do now need to be on top of things. He needs to be reminded to pee hourly and we get accidents a few times a week. If we are going on a car journey of more than 30 mins there is a high chance of him having an accident. we try not to put him in nappy pants unless we know we are going to be on an extended trip and unable to make bathroom stops as we don't want to encourage him not to try to hold it. At night he is still back in the nappy pants that he had to go back into in April. On Wednesday at bedtime I as normal told him to go peepee and get his clothes off - he pulled down his trousers and pants and load of balls of poo went everywhere! He'd pooed his pants, it was not diarrhea - he would have definately needed to make a consious effort to poo I think. We put it down to him being allowed to play the wii that evening and he was too distracted to go until it was too late (he was wet too). This didn't explain why he had not gone after he had done the deed. We explained to him that he needs to go to the toilet for a peepee and poopoo and have no idea if he understood what we said even though he does know to go to the bathroom for toiletting needs. We tried to underline his behaviour was not good without getting angry at him. We hoped it was a 1 off incident. The next day nursery noticed he was wet and went to take him to the toilet and change him when they noticed the smell and he'd pooed there too. At nursery he doesn't have accidents often as there is usually one child or another being asked if they need the bathroom so he tends to go several times an hour anytime anyone is reminded. Last night again I realised he had wet himself even though he'd been not long before and when I went to change him there was more poo in his pants. Again he got the lecture of peepee and poopoo's need to go in the toilet not in pants but if he understood is unknown. No problems today thankfully. I just don't know what to make of it. I am worried it is a reaction to being in nursery longer hours now that I am at University. He is there 2 and half to 3 full days now and seems to be enjoying it. His speech whilst still far far behind is coming on and he's interacting with other kids (3 of them locked themselves in the toilet and were heard to be giggling hiding from the staff) at a level he's never done so far. Any insight from people that have gone through this would be useful please - but please please don't recommend a star chart, he just doesn't understand the concept.

Having just started Uni I am once again facing my problems with social interaction. I have been on my course for 3 weeks now and whilst I have gotten to know some people I generally sit alone and when I don't I feel I am intruding. Some of the other people on the course have made an effort with me and whilst I very much appreciate it I also think are they just doing this because they feel sorry for me or do they like me? Rather than worry about if I am welcome if I join a group I detatch myself purposely. During our 1st few days in Uni we were told about they support the uni has for anyone with disabilities or support needs. I have made an appointment for later in the month to discuss my concerns with them and see if they know of a referal point - however I am also worried they will tell me to go to my GP and ask there. I feel so paranoid about approaching my GP about my concerns about possibally having AS myself after I went to one of them with my concerns over my son and his reaction was "I am not convinced". Ok the GP was sort of right when he said he was not convinced about my son's possible ASD as at the moment his dx is GDD and communication disorder but I still have a feeling it will change to ASD eventually. I also think the coping tactics I have learnt over the years will be viewed not as coping tactics but just that I don't have issues with things. I don't want to go tell my GP personal things like personal hygene being a struggle when I am studying to be a nurse and hygene is such a hugely important area. Again these things are areas I know I have issues with so I make a point of paying attention to them. Doing basic things because I force myself to rather than it being second nature are two different things. It's even hard to write this and admit to things in the anonymity of a forum, going into enough detail to convince a professional will be difficult. Maybe I should just forget it. I don't know if there is really anything they can do at uni to support me anyway. But then again I nearly skipped a lecture last week as there was group work and a poster making session - stuff of nightmares. Honestly if I was not so determined to do this course then I'd have skipped that class and been on a slipperly slope to dropping out or being kicked off. So maybe pursuing a dx for myself (or geting told there is nothing wrong and give myself a shake, people just don't like me and I should wash more etc etc) would be useful - if I do have AS then if I can't cope with some of the group sessions then maybe some consideration might be given. I too when I had my eldest thought that being a mum would open doors for me socially and help me fit in - it didn't. Infact it just emphasised to me how difficult I found social situations. I tried to go to the local toddler group and was coping with it (just) until some helpful person thought they would try to help me fit in more by asking me to help with the snacks. It was hell. All I wanted to do was sit in the corner and let my son explore and hopefully play with other children (this was when he was first crawling so his lack of interaction with other children was put down to his not seeing other children often).

Oh yes, that mythical thing called a full 8 hours! Had a few extra bad nights so far this week. With a lot of crying and sobbing in his sleep for hours on end. How can I soothe someone that isn't even awake and aware of my presence? I can't fully awaken him, but partially waking him seems to lessen it a little for about 2-5 mins by which time I have just crawled back into my own bed. I really think I need a spare bed in there for nights like that but we are struggling for room as it is. He is only in a little jr bed so it's uncomfy for me to cuddle up with him and I've resisted getting him a full size single bed as firstly I don't want to encourage tired sleep deprived me to climb in with him too much and secondly he often climbs out of bed to sleep on the floor. (And no it's not the bed as we thought it might be and got a new bed and better quality mattress and he still does it - puzzling). I'm worried the bad nights are linked to my starting University but he does seem to have settled into his new nursery much better than his old one. They have a better staff ratio and he gets a good mix of activities. He actually now asks to go to nusery if we get in the car on a morning - even if it's not a nursery day. Huge huge progress from last year although not sure if it's he likes this nusery or that he only now has the ability to recognise the routine and possible destination and vocalise it or not. Also when he's saying going to nusery I'm still not sure if it's a request or just an observation. I am choosing to take a positive outlook that he wants to go.

Just to update on this - I found out today they HAVE changed Finn's award to HRC. Although they have reduced the length of the award from until June 13 to until Oct 12 but I think this is fair. Hopefully by Oct 12 the night time issues will have resolved (I can live in hope - I've been telling myself that it will resolve in a few months for the last 2 and half years). So I am completely astounded at DLA - inital refusal, then awarded MRC when I requested a reconsideration. I inadvertantly triggered another reconsideration when I only asked for the date to be corrected and they have chosen to award HRC. To those of you being refused or given a lower award than your circumstances merit then please please do not give up and ask for that reconsideration or go to appeal triunal.

Glad things have improved to a certain extend Matzoball. The others on the spectrum doing this should think themselves lucky they too are on the spectrum - it essentially gets them out of being disciplined for discrimination on disability reasons. Doesn't stop them being utter ###### though. Unfortunately you find them in all workplaces, on the spectrum or off it.

Hi all, My 4 year old son was recently awarded MRC after a reconsideration when he was initially refused any DLA at all. I had hoped he might be awarded HRC as he has extensive disturbances during the night as well as having needs during the day, however I was ok with MRC and certainly wasn't going to appeal incase they decided the first DM was correct and took MRC away. They made the award from 20th July. I queried this as I was told it would be from 12th July when I first asked for the forms. Unfortunately I had printed form off computer instead of using the one they sent me so I had all the space on the back of the forms to give additional information. This didn't have the date stamp so they only awarded from the date they recieved the form in the office. I was told it was no big problem, just to pop the double dated letter in the post with a covering letter which I did. Today I received a phonecall from the DLA reconsideration dept - just asking for the date of the award to be amended triggered a full scale reconsideration of the entire claim. The lady that called me has done so specifically to ask about nights. We chatted for over 10 mins about Finn's sleeping habits and disturbances and she was asking lots of questions all of which I was answering with detailed descriptions. The lady didn't say for sure but I have a feeling she might also have felt that given the day time and night time care needs that HRC is appropriate. The questions she was asking didn't seem relevant to her taking away the DLA and the only reason I can think is that she is considering awarding HRC instead of the current MRC. Has anyone else had this happen where they've been awarded a higher level of DLA when the reconsideration was not asking for it? (I know people have lost DLA or had it reduced just never heard of them increasing it).

Great news about your daughter Kathryn. How she kept it together during the application and interview process I do not know - I certainly barely didn't! OMG I start my course in 5 days!! I hope Uni is everything she wants it to be and make sure the enabling support dept (or what ever the eqivalent is at her Uni) are fully aware of her needs. They are usually pretty on the ball and will do everything they can do to assist her. Use the facilties that are there to make sure she has the best experience possible. Finally and importantly - I hope she learns more than just academically. Uni is about growth and development and about FUN!

Sorry to hear things are not going so well at the moment Jeanne. I have no advice to offer but can wish you all the best for improvement in the situation soon.

Thanks! That's a good thought, my husband has involvement with the mh service due to his OCD. I might ask him to contact his psychiatrist to see if he is willing to do a letter of support to show the benefit he will gain from it also.

I completely agree with the other posters. This girl is jealous of you and is trying to hurt you. Take her sick twisted little game and turn it around - take it as a complement that your life seems so full of promise that she has to try to sabotage your happiness. Also I would not even give her the satisfaction of cutting her off.....just distance yourself discreetly but quickly without making a display of a falling out which will just give her more ammo against you.

That sounds awful justine, have the council amended their records to show you are now in their area as well as over-crowded? If I were you I'd chase up and make sure they have you correctly on their system. I'm also a student nurse (well I will be in 15 days time) and can't wait to start my placements in the new year, it's a 30 min drive to my placement hospital however,, wish it were just behind me lol.

That's great that you got the points jollypig. Hope something suitable comes up for you soon. We also own our current home on a mortgage and are unable to get a mortgage to move to a bigger house so a council house is our only hope as with me starting University soon we won't have the finances to do a loft conversion as we'd hoped to.

Does anyone have any experience of council housing and being awarded medical points? Finn's sleep issues are now at the stage they are preventing normal progression of his baby sister (who is 1 next week) to the childrens room. We have put in a housing application to the local council and housing associations for a 3 bedroom property. Under normal circumstances we would not be allowed to apply for a 3 bedroom house as both children are under 8 but we have put in the special form for extra points due to Finn and his sleep disturbances. The special request form gets sent to an occupational therapy nurse and if she agrees then we are on the housing list for a 3 bedroom house. Does anyone have any experience of applying for an additional bedroom and if so were you sucessful in being awarded medical points and being allowed to apply only for a bigger house than normal allocation rules would have dictated.