dekra

Hope today went well. I had the first assessement for my 4 year old last week and I tried to leave things to the SALT and paediatrician to interact with him and had minimal input in their direct observations so I could not influence his behaviour and they could get the best idea of his behaviour and abilities possible. It seemed to work - these people are trained to ask the right questions and set the right tasks appropriate to assess the children referred to them so winding your son up shouldn't be neccessary.

Those would be great results for an NT kid, so amazing work by your son to do so well having so much to overcome to get there. You should be proud of him and also of yourself for helping him get there too.

LisaKaz - it is so worrying we have to think about ramifications of this choice right down to their exams in their teens! We shouldn't have to worry about that until we are registering them for a decent high school!

The Dr gave me a copy of his profile form "schedule of growing skills II" form. The following skills areas were assessed and the age Finn's skills matched are listed - Locomotor - 30 months Manipulative 30 months Visual - 48 months (he is 48 months old so this is the only thing he scored as he ought to) Hearing & Language - 24 months Speech & Language - 24 months Interactive Social - 15 months Self-Care Social - 24 months

Thanks for the replies JsMum and justine. JsMum - Finn attended local authority nursery last year and they got educational psychologist involved, more for helping them with strategies appropriate to helping him than anything else. Also after area staffing problems he does again have a SALT who saw him a few times in May/June whilst at nursery. They have agreed to give him a place at the local specialist SAL workshop probably to start late Sept or early October so he is getting educational support even without the paediatrican involved. so he will do that for 2-4 days a week shortly. I have some knowledge of the workshops as the boy next door went there for 2 years as he had speech problems and it really brought him on although he does still stutter. He has now moved to a private nursery that can do wrap around care when I start Uni next month but the private nursery has a better staff to child ratio so I feel it will be a benefit to him. As he is at the moment he is not ready for school but he does have a year to go and a lot can change so I am unsure about holding him back. The first time holding him back was mentioned was last September (just a passing comment from nursery key worker) and at that time I dismissed this idea completely. Finn doesn't have a statement and as far as I am aware they don't do them in Scotland. At the moment I am not arguing with the GDD - the Dr did know we were concerned about ASD and said whilst he's not ruling it out and it might be the ultimate dx he doesn't think it is. At the moment they are taking his problems seriously and will be doing further assessement to monitor his progress (they are having a meeting tomorrow with the wider team and I will get a copy of the letter telling me more). Justine - Finn is also an Aug baby but here in Scotland the school intake starts from March-Feb so some are 5 and half when they start and some only 4 and half so Finn is smack bam in the middle. If he was one of the younger ones I'd feel more comfortable holding him back. Although what you said about delaying full time entry is interesting assuming he is on 4 afternoons a week at the workshop he would do mornings at school and afternoons at the workshop. I guess all I can do is not worry about it until next summer and see what I feel would work best for him.

Hi guys, My 4 year old had his first assessment today and it looks like they don't think ASD but GDD with Communication Disorder. To me that looks a lot like PDD-NOS except they expect him to eventually grow out of it where as with PDD it's going to have life long difficulties so from that perspective it's positive news. Finn is due to start primary school in Aug 2012 but they think he might not be read and would benefit from an extra year in nursery school. I still have to register him for primary in Jan as it might still be too soon to say one way or another for sure but that the final decison can be made nearer the time. Has anyone else been in this position whether it's been due to ASD or GDD and can tell me of the benefits they found or the disadvantages of keeping their child back a year. Or conversely those advised to keep child back and went against the advice and sent your child to school at the normal time - again what advantages and disadvantages did you find?

It takes a weight off your mind knowing they are not dismissing you doesn't it? Hope things go well with Beth.

Had Finn's first assessment with the paediatrican and SALT(same one he's seen a few times at nursery) today. Then the Dr talked to myself and hubby for a longtime and the SALT did things with Finn then Dr did more tasks with him. We were in for over an hour and a half. Dr says at the moment he's putting down GDD and Communication Disorder and they will have further assessments. He is due to start school next Aug but they have doubts about that, and think an extra year of nursery school may be better for him. I have still to register him for primary school in January but that the decison can be taken nearer the time - a year is a long time and much can happen. I could almost cry with relief that finally people are taking our concerns seriously.

My son recieved his first payment of DLA today after asking for a reconsideration of the inital refusal he was awarded middle rate care. I agree with the above posters that you should ask them to look at it again and if that fails go to a full scale appeals tribunal. Contact your local councils welfare rights specialist or CAB for support.

I regularly use the diabled toilets in my local Tesco for myself or my son. I have never seen it used by anyone diabled and there is never a queue for the normal toilets but as I often have to go with kids in tow and my little boy is terrified of the hand dryers. I also use it in my local GP surgery as son usually needs to go when we are waiting and if I send him in and stand at the door I can watch he's ok and still hear if my name gets called into Dr. If I am unusually out alone or hubby in tow and kids not needing so can stay with him then I only use the regular toilets.

Could also be "intrusive thoughts" coming from OCD? Not nice I know to have these things going around and around your head. Hopefully the lessons learnt in CBT are aiding you but maybe you should approach someone a GP maybe for referal?

So just wanted to say thanks to everyone for the encouragement and guidence. And anyone else in the same boat - reconsideration is worth it and the cerebra website is so helpful with your forms!

Great news, Finn has been awarded MRC for 2 years! I am so relieved, not so much for the money but that someone has taken me seriously regarding his needs IFKWIM!

Childhood for me also was not a happy time, my inability to make friends and my more formal way of talking was put down to the fact my mother was widowed when pregnant so she lived with her parents and 4 younger siblings. I was born into a house full of adults and was very outgoing with them but away from the family I was introverted (but very outspoken if I felt something was "unfair"). As the family left home and grand-dad died when I was 5 it was myself my mum and gran for many many years. They brought me up well but my school life was hellish. My time as a younger adult was worse, I was isolated and a loner. I was miserable and depressed. Now in my 30's I have a wonderful hubby and 2 beauiful kids and I appriciate how much I have in my life. I am not a happy person but I have a happy life now IWSWIM.

I hate to hear the "buzz" of electricity through the alarm clock or a tv etc on stand by. Day time is fine but at nights they can keep me awake for hours. Solution - I do not and have not had a tv in my bedroom for over a decade. My mobile phone is my alarm clock but even then I can't have it charging overnight as there is a faint thrum of the power transfer. I've only had lightbulb issues a few times and I thought that was due to a problem with the fitting. Drove me crazy til I found out the cause of the problem though! I generally hate white noise, can't have the tv on or music/radio unless I am specifically watching/listening. I have spent hundreds of pounds changing my fridge freezer when the background noise of that during the night had me going nuts. Even daytime my hubby leaves his computer on and the faint whir of the cooling fan distracts me something awful (I work from home) - I've nearly put it through the window a few times when he's left it on. I am (probably) NT although I do have some AS traits and these peculiarities of mine are just another puzzle for me. Nice to know there are others out there I can tell this to who don't think I am crazy.

It was mostly tongue in cheek Mumble BUT not outwith the realms of possibility. I am more inclined to think it's a normal interview tactic to keep a suspect uncomfortable and off balance.

That's great about the possible Loft grant JsMum ty! And I shall be reading up more on auditory processing problems for the rest of the afternoon! Won't know if it's anything that effects Finn but if it is all the info I can get helps me understand him and anticipate his needs better.

Has anyone considered the fact the police officer himself may have undx as? Would be an irony and might explain less than subtle queries? It's unlikely but it's as discriminatory to completly dismiss the idea as in any other circumstance.

Thank you cmuir. It's very frustrating, I called today - a decision has been made but it's off to dataimput to be entered on the system so no-one can tell me one way or another at the moment. I'm a bit negative nellie today and expecting another refusal. I will fight it however, his needs are so much more than other 4 year olds and new idiosyncratic behaviours are developing all the time. His latest means complete hysterics if you move into the anything but the left hand lane on a dual carriageway or motorway. That includes slip roads joining and leaving the road. Over-taking is a no-no now but I can't do anything about slip roads and exits.

Deafness never occured to me as that had been ruled out by a hearing test last year, can't remember if I mentioned that on the application form.

Had a phonecall from DLA today about the reconsideration. She asked me a lot of questions again, about night-time, about Finn's toileting and about giving him instructions. One of the questins she asked was if I told him to go get a biscuit was he capable of understanding and doing it. Yes he is. Then she asked me if I need to have him facing me when I give him that instruction or if I can just do it without him looking. I never realised before but yes I do need him to be right infront of me. It's just so second nature to tell him things that way I never thought twice about it. Is this something often common in ASD children and if it is I am wondering if that means the decison maker that is re-assessing the claim has knowlesge of ASD if she is asking this question specifically. So I don't know the decision at the moment, she said she will be making the decision in the next couple of days and I should get a letter in the next 7-10 days. So I might know by the time we go for Finn's assessment next Wednesday.

Amen to that!

I'm a bit "socially inept" but don't have any sort of dx but just thought I'd share one of my family tales that still gets dusted off every so often. I was a dreadful eater as a young child and would often be at the table for hours as I would not eat. Anyway one of the things I did like was the "scrap" ends off of deli meats. Desperate to get me to eat my mum would go to the butcher and discretely ask to buy them. I was less discrete annoucing to the suddenly full butchers shop that "Those scraps are for my tea!" Mum was mortified and still casts it up to me every so often to this day. Strange that from about 8 yrs old upwards I went from not eating to compulsive eating that lead to obesity and took 27 years to get in check.

Jeanne my heart breaks reading your posts about Glen. I can't put it all into words correctly but I admire the strength you've had to have and still need for it all.

My husband went to CBT for his OCD. There was what could be called a clash of personalities between himself and the therapist. He never went back. Having discussed it with his Psychiatrist he is back on the exceedingly long waiting list for it once more (first therapist has now left) and Dr H told him that CBT is 60% the actual CBT and 40% the person doing the therapy with you. If there are issues the patient/therapist don't gel then it can be fruitless. Don't want to be negative on CBT but just telling his tale so that anyone getting this treatment and not getting results can look at if this may be a personal issue with the bond between patient/therapist rather than the CBT just not working.