dekra

Thanks Justine and DS Results today - Show's it's not ASD. So of course the next question ok so what is causing all his problems because there is so much more than just his communication. They say that he has a language disorder and confirm that it is a disorder not a delay. He also has a developmental delay. Since his last schedule of skills or whatever it is called was done last August he's continued to develop and is behind at a level of around 24 months for everything except visual abilities which is age appropriate or even slightly better. His social communication skills have improved from 15 month level to 24 month level so that is something. His language skills whilst they have very definately improved are still only on the level of a 24 month old. They say that even the areas in the ADOS he was weak (lack of imaginative play for example) is primarily down to his lack of language skills because without the language skills to understand things and therefore relate to his surroundings and circumstances. This is also why they say he does not understand things like birthdays and Christmas. They also say his sleep issues are probably connected with the developmental delay as a lot of 2 year olds (which developmentally he is on many levels) still don't sleep properly. They do not think the language disorder and developmental delay are not directly connected.

I had a quick look over the contents of the different modules and it was module 1 that was given today.

Finn's ADOS assessment was carried out this afternoon. It took about 45 mins. I'm not sure what module they did but it certainly didn't require a lot of spoken language so must have been either 1 or 2. They mostly played with some toys and encouraged him to interact with the assessor. He did a lot better on the birthday party scenario than I would have expected with him pretending to blow candles out (on holiday last week we had a candle on our table one night and he spent the whole night getting his dad to relight it so he could blow it out again). he wouldn't pretend the playdough was cake after the candles were gone but would tear chunks and stick it in the mug. He then did with a tiny bit of prompting pretend it was coffee. They were playing with a toy airplane and he was flying it but despite a few attempts when a wooden block was substituted for the plane and he was told it too was a plane he ignored it. His eye contact with the assessor was non existant for the first 10-15 mins then brilliant for the next 15 mins when they were playing with the bubbles and balloons which he loved, the last 15 mins it was significantly reduced again during snack and other play. On the whole he did really well, it was a good day for him and I think it's better to have him on a good day than a bad day. I know a bad day might have shown certain tendancies clearer but I don't just want a dx I want an accurate dx and I think getting him on a good day and showing the top end of his capabilities is the right way to get it right. Results tomorrow afternoon.

My husband has OCD to I understand the frustration of people not directly suffering or helping sufferers. Even myself I get impatient and frustrated at him at times and want to scream at him to just get over it! I know however that won't help but I do tell him afterwards that I have felt that way and he understands on an intellectual level but when in the grip that doesn't help either of us. As for the washing machine/sofa debacle all I do is offer to give the washing machine a metaphorical kick for you hope it's easily mended.

I am guessing having Glen home really exausts you both emotionally and physically so no wonder you feel low at times Jeanne. Try thinking of the time between visits as your recharge time so you are as fully rested and prepared as you can be for a visit and can then make it the best experience possible for you both. Whilst each visit will have it's ups and downs try to focus on the ups and making the most of them. I might be reading too much into situations but I am guessing when Glen was at home full time there was not a lot of the good times left for you both as things had gotten too much so visits with both good and bad are an improvement. I also think you still feel guilt at Glen going residential but you know it's been the best thing for you both.

Forgot to say the biggest thing I noticed was he was asking for bed by 7/8pm (his normal bedtime at home) even though he was only getting his evening meal at 7. He seemed to have his internal body clock tuned to tell him it was bed time and was quite distressed at not going. A lot of distraction techniques were employed to let us sit up later although there were 3 nights I either took kids to bed back of 8 and read to let hubby relax with a beer in the bar or we both just came back and chatted in our room together. As already said just a minor adaption really and I'm sure one people with NT kids have had to do at somepoints too.

Hey guys, We are now back from our week in Tunisia and everyone has managed to enjoy it. We had absolutely no issues with Finn on the plane, he took vague interest in the flight and mostly just played with his Nintendo DS. He loved the swimming pool and would have been happy to spend the whole holiday there. Luckily his little sister who has previously hated the pool suddenly decided it's the greatest fun and she was content to spend a lot of time there after the first day. Had 2 main incidents of note - firstly he had a complete melt down at the attempt to get him on a camel at the animal park so we didn't force the issue. Secondly he would not go anywhere near the the entertainment, I don't know how he knew but the hands were over the ears. body frozen and anxiety levels through the roof half way down the stairs to attend the mini disco even though no music was even on yet. After that we just sat in the lobby of an evening with a few drinks and chatted to each other and other guests. I would take the little one down for the 30 min mini disco and Finn would stay up with his Dad. We found our way of adapting so wee one didn't lose out. Other than that he was mostly just either uncommunicative to people talking to him (then again so was his sister) or overly friendly to the occaisional people he liked. Oh the whole, although we didn't have the freedom to do some of the things we'd have liked to do it was nothing that spoilt our holiday. We just have to accept that we make adjustments and know that certain activities will just have to be either limited to one parent and our other child or be avoided completely. I tihnk the balance should work out fine in future, We now have the ADOS coming up on Wednesday at 2 then a second appointment to discuss what happened and the results on Thursdayat 3. This will then be when we get his dx assuming one is appropriate. Given there were a few behaviours become apparent during the holiday that although not disruptive were weird and I felt could be ASD related (as the week went on he became more and more obsessed with the salt and pepper pots and having them on his food. There were points in the last 2 days of holiday when all he was doing was using his finger and rubbing the salt and pepper on the plate then licking his finger and it wasn't because he didn't like the food, he enjoyed it greatly. I had to clamp down on it when he was even trying to put it on his icecream. We then had to have one of us arrive at the table a few seconds ahead of the rest and hide them and hubby had to put his own salt and pepper on at another table. Weird and not one I've heard before but it did feel ASD related IYKWIM, Feeling very positive at the moment, we've managed to adapt and take our little family and have some normal rest and relaxation with a little twist.

I had a phone call at 5pm last night to confirm Finn has an appointment for his ADOS on 9th May. If the paediatrician is correct we should get the dx within a couple of days (assuming the ADOS does give an ASD dx). I have mixed emotions about it all now, I am hopeful that we can get a dx for him but I am also worried we won't get a dx and we are then left wondering what is causing the issues if it is not ASD. I also feel guilty that I want the ASD dx, but it's not that I want him to have these issues I just want them identified in the manner I feel is correct. Very nervous about upcoming holiday and how he will cope with the flight but looking forward to a week of relaxation in the sun (first time husband and I have had a holiday together in 8 1/2 years) and hope the kids have fun too. Repeating myself I know but all that keeps going through my head is what if the test says it's not ASD? This is more about me than about him as I have convinced myself it's ASD and concerned I am projecting but although he has some areas not meeting common ASD traits (he has no issues with routines for example) there is so much that does match ASD. Confused much.

I have recently done some research on homeopathy for university. It seems the concentrations in many solutions are so dilute there is virtually none of the original material in the finished product. There is however some evidence of efficacy from the "placebo effect" and there is debate in the nhs about whether it can therefore be used as such since placebo's themselves are not used due to ethical considerations. The "it won't hurt to try it" attitiude might be the best. Either it will have a desired effect even if we don't fully understand the reasonings for it, or it will have the desired effect due to placebo effect or it will have no effect. As long as there is no negative effect all is well really imo.

Hear hear! Yes there are good times. Things that will make me smile everytime I think about it. Just waiting on a transatlantic skype call from my bosses (pay rise woohoo) then I am off to bed but I will definately share a great tale or two tomorrow.

I blame myself at times. Especially since I am a type 2 diabetic and I was obese when I was carrying both children and there is a significantly increased chance of ASD in children of obese mothers (and there is a significant study to show this increased chance). I cannot however dwell on that. I may or may not have been a contributing factor. It might not have happened if only blah blah or it might still have done so. It is what it is and I need to focus on that and just get on with it. Feeling guilty is just indulging in self-pity and it is of no benefit to me, my son or the rest of the family. That's what I say now but not what I think in my darker moments.

I think Dark that as a parent you just have to do it! I tell myself it's part of what I signed up for having a child/children. Some of them will have more needs that others and I am just thankful that even though my son has problems they are not as bad as they could be - there are a lot of other children out there with worse ASD or cancer etc. I just try to do my best for my son and only time will tell if what I think is best turns out to be so. I'm hoping not only with Finn's problems but with my parenting in general it turns out both my husband and I when they are older the children can look back and say we got more right than we got wrong. I'm glad that whilst your parents weren't able to support you in the way you need you are now coming to terms with this. This is why parents need support themselves so they can support their children.

I had a letter from Edu Psy today saying she'd sent the referal to SS and to please call them as she still only had my old telephone number which was now disconnected to pass o them. I called them and they had had it on their system but they also did have my tel no as I'd given it to them yesterday. They only got the referal today and already have sent it to their OT's to contact me next week. Impressed so far.

I used to hate babies. They terrified me. I hadn't anything to do with babies since I was about 11 or younger until I had my eldest at 31. You quickly get used to them lol! I still do not particularly like other people's children but over the last 2 weeks I've been around a lot of young babies of complete strangers and as a student nurse been in the privledged position of automatically been trusted to have a cuddle and I loved it. It's probably the maternal instinct and hormones but it's lovely and I love the silly talk I can make naturally with a tiny one and the way they watch you and those that are old enough you can illicit a smile or giggle. Uncomplicated stuff!

I am trying not to let me previous experience colour my opinion in this instance. I truely believe that it is situations like this that social services are supposed to be there for people to go to. Ok they have a whole lot of child protection work that we never want to need or be suspected of needing. But the support of normal families in need ought to be a priority too and I am awaiting to see how it goes. Actually I did have a small positive experience with them last year - when my original DLA application was turned down I went to them for advice on getting them to help me with my appeal. It turned out that I didn't need them as the verbal request for reconsideration was enough. However they did go through things with me on the phone and sent me out paperwork for sending in a written appeal. They were also going to attend a oral hearing with me if it had come to that situation.

I fully understand where Darkshine is coming from with the smiling. I can and do smile when I am happy but I don't go around with a smile on my face. My face in it's natural relaxed state is a bit miserable looking and I spent years getting told "oh smile will you" and the like. Whilst I have never really had eye contact issues that I know of (I always make a point of having good eye contact, maybe the fact I have to make a point of it says more than the fact I am good at it) I do feel I have to force myself to smile appropriately in social situations. I don't like doing it. Infact I find it downright distasteful and uncomfortable. If I have to plaster a fake grin on my face it looks and I feel a fraud.

I had a bad experience a couple of years ago (involving a naked 2 year old sneeking into garden in the rain at 7.30am - long story but no where near as bad as it sounds or they made it out as he was only out 2 mins but the wrong 2 mins for someone to see him). I have however just 2 hours ago phoned them myself so see if they had the referal for support the edu psy was supposed to be sending a couple of weeks ago. They had't. So I gave them all our details and said it's about help to get a bath installed here as SS are in the best position to get the OT's involved in this area and they also supposedly have access to funding so if the housing dept still aren't willing to pay for a bath they might be able to organise one anyway. It really is that or we have to move house again, the bedroom situation is much much better but I can't go forever with a child that won't shower and has no access to a bath other than fortnightly visits to grandparents. I have been told I'll be allocated a case worker and they will contact me to arrange a home visit to discuss Finn's needs. Part of me wanted to avoid involving them I hate the label of being "known to social services". And having a child with a social worker is very stigmatised. But at the end of the day, my reservations aside I need to take the path I believe is best for our family and hope this sick knot in my stomach turns out not to be warrented.

He's 4 yrs 8 months at moment and starts school in Aug. We've been ok for help, as his nursery key worker last year was pretty good and got edu psy involved pretty quickly and although SALT were theoretically already involved by that time there were staffing issues so things slipped by the wayside there and nursery and ep got that back on track. Have had some negativity from SALT about my assertion I think it is ASD. Some people within SALT have said he is too affectionate so can't have ASD or that he wants to communiate just can't due to his lack of expressive and receptive language skills so can't have ASD. I dispute this as just because he is affectionate he is inappropriately so and communication difficulties are integral to ASD but that doesn't mean someone with an ASD doesn't want to they just can't do it correctly. On the other hand SALT have a special language unit which they got him a place at. So from October - Feb he went to that 2 afternoons a week and since March has upped that to 4 afternoons. I do see an improvement which I think is aided by their sessions. It's a specialist unit and has 6-8 kids in it at the moment depending on days as some are not the full 4 days. They have a special needs teacher and SALT in there and some days a TA too. He will continue to be bused to that 4 days even when he starts school - probably for at least a year. School are arranging extra assistance in his change over from nursery (a private one not council run one as I am a student and he has wrap around care there too) and they are including him in their special needs funding application for next year. Have had to fight the system a little bit in getting ball rolling for assessment, that was all my doing. Nursery and first edu psy were happy enough as long as they were putting plans in place to help him they we're interested in what caused the probs or what probs he has outside of nursery. Once I raised it with the keyworker finally she was first person to agree it was a possibility and back my request for referal from Dr. When I finally decided I had had enough and was looking for referal I went to HV who referred us to a community paed (but staffing issues meant waiting time was bad) so I also went to GP who despite telling me he was "not convinced" refered him to CAMHS who refused the referal and it had to be resent to the local assessment centre for various childhood illnesses and conditions. That finally got things moving and paeds have acknowledged there are difficulties within the triad! What a vindication that was for me, even though SALT at that assessment was pretty negative (insists it's communication disorder nothing else, well she's qualified to dx the communication disorder nothing else!!). But at this review appt last month was a different SALT and she was much better. They still think there are a few inconsistancies with ASD but also said there are enough markers there that a few years ago they'd have given a dx by now. But they don't do that now until an ADOS is done too as they don't want to label a child that might just have a delay and grow out of it and who is therefore not Autistic. I can see their point but it's still frustrating. Also there is a part of me wonders what if I am wrong, what if this test show's he's not got ASD, I've been wrong and insisting on all this assessment for nothing. But whatever the dx doesn't change the needs he has so if it does turn out not to be ASD (which is doubt - I predict dx of HFA) then at least that's one thing ruled out and they can get looking into other issue. But as I have said I think it has to be ASD - although some things don't fit so many things do.

Hi Jeanne, Still not actually got the dx. Have been told we should get it after the ADOS which should be next month (assuming of course the ADOS backs up everything else - if it doesn't I'm really going to be scratching my head).

Finn was fine as a baby, bit coliccy but nothing too bad. He crawled at 5 months and by 7 months he was standing and cruising the furniture. We thought he was going to be an early walker. Finn never had any problems with any of his immunisations. At 9 months old he seemed very lethergic and out of sorts in the morning but not actually ill although he was off his food, by afternoon we took him to GP who said he'd probably just had a dip in his blood sugar and to encourage him to eat. Soon after that he did take a small feed and perked up, By late afternoon he was a lot better and next day completely normal. However after this he didn't progress in any meaningful way until he finally started walking at 16 months. This however, although much slower than we had expected was within normal scope so we weren't too concerned. At 13 months he was able to use a mouse at a computer and had enough fine motor skills to navigate menu's with the mouse to get what he wanted. As a young baby even before that funny turn however he had no interest in the slightest of other children, they were nothing more than mobile furniture. By about 18 months we were getting concerned about his talking however, He could say yes no mum dad and count to 14 (there were 14 steps on our staircase). Little things were starting to concern us but we kept getting told boys are slower to talk they will catch up. Some time between this 18 month point and about 2 we started having those late night conversations in the dark "I'm worried, he's going to be ok, I'm not worried, I am worried". Kept trying to tell ourselves it would sort itself out. The sleep issues had started suddenly at 17 months and the little speech he did develop became very ritualised. By 2 we were pretty sure he was autistic but didn't feel confident enough to speak those words to someone else until he was 3 and half, although we had gotten speech and language referal and his hearing checked out and nursery had asked for educational psychologist referal to be done which we had agreed to. I do not subscribe to the MMR link but I know a lot do. Personally I think the scare has contributed to more illhealth and even deaths due to lack of uptake of immunisations and resultant preventable infections. I definately do not think MMR has caused it in my son's case. However I also do believe that there are multifaceted causes and MMR maybe a contributing factor in some cases. Even so I still had a few seconds apprehension as I sat waiting on my youngest getting her MMR. Fear is not a nice thing!

Thanks, was a false alarm involving blackcurrant juice I feel silly now lol. How's baby Justine?

I can't stand tags myself and I can't have bare shoulders in bed, even little strappy straps I can't cope with urgh! I have had a funny morning, we are having a lazy Sunday and Finn is running around just in a t-shirt as he usually does but is not interested in stripping. The baby on the other hand has been stripping all day! Not something she's ever done before and I thought uh-oh not another one (she already has developed her brothers yoghurt obession now that he's finally over it) but just before I put her up for her afternoon nap and she'd suddenly covered in chicken pox spots poor baby lol but explains the stripping!

Thanks got your input Justine and LancsLad. Personally I have always been happy to let him run around scantily clad but after a bad experience a couple of years ago when he sneeked into the back garden at 7.30 am in the rain (I was pregnant and it took me a couple mins to waddle out there and get him back in) and some binman decided to phone the police and social services I have become a bit paranoid. The police laughed it off as a false alarm but social workers decided to lecture me about parental responsibility and made comments about his stripping (at this time ASD was still something hubby and I were only talking about in those late night in bed convos) and how it was inappropriate. I told them then I couldn't promise he'd not do it again which I don't think they liked. I think shorts might be the way to go or even boxer shorts. I also need to consider he can't run totally naked for long even inside as he has a younger sister. I am just a little puzzled about why he's been happy with stripping just to undies for the last year but suddenly it's back to totally naked. I guess just got to go with the flow on this one.

Well it has started again. Finn would always strip off from the earliest time he was capable until maybe a year ago when he seemed to improve. The last fortnight it has returned with a vengance. I don't know what to do, as it is only inside at home we are pretty much ignoring it just now as we don't want to make an issue of it but we are also exceedingly aware the nice weather is approaching and if it is anything like last time he may do it outside in the garden which we would rather avoid as he is going to be 5 in August. The only plus point is our back garden is not as exposed as the old one but we'd still rather avoid potential problems. Does anyone have some advice on encouraging him to keep clothes on without it becoming a pitched battle? Also I am sure someone will suggest star-charts but they just don't work for him.

I have flitted from one thing to another over the years, been unable to settle and get comfortable. Office politics are awful and make me seriously depressed and I struggle to cope. After 4 years working from home I have returned to Uni as a student nurse which involves 50% of my time in work placement. I still cannot cope socially but I can to a certain extend ignore office politics except when negative aspects are directed right at me. I have decided after my last placement I am not going to allow someone else and their pettiness to dictate how I live my life. I am lucky in I have a very clear goal - to qualify as a nurse with the best results I can then to train as a midwife. That keeps me going in the dark times. I would recommend not just jacking it all in right away but to take a break (did someone mention holidays? ) and reassess what you want from life. There will always be people that want to rain on your party and only you can find the right coping strategy for you. I would say that although you have a good paying job that it doesn't seem to fulfil you and that I think is key. You don't have a wife/children and your job is not something you are for greatly. I do truly believe everyone needs something in their live (does not have to be a family or a job it can be as simple as an enjoyable hobby) otherwise it's not living it's just existing. Think about how you want to LIVE not to exist. But on a sensible note of caution, sometimes the things we want to live and experience can be expensive so you need to balance them with the crappy need to earn a living. That does not work for everyone but that's the focus I use too, I can put up with somethings I hate if it gets me something I love. If jacking it all in is the right choice for you then go for it! Hell even if it isn't then it's your right to make that call too - you'll never know til you try and all the good advice and bad advice on the planet is just that, advice and opinions. Live your life for you!