New to SN - so saying hello!

[FlyingFig]

I've lurked on here for a while now and found it a really helpful board, but now that DS has been given some official diagnoses I thought I'd pluck up the courage to post and say hello

We saw a community paed yesterday, who diagnosed DS (6) with dyspraxia, hypermobilty, auditory processing disorder and almost definite Asperger's (the Asperger's was the only one she didn't give a concrete diagnosis but gave me a checklist to complete and she's referring him to CAMHS). Oh and she diagnosed something else connected to the problems he has with certain sounds, smells and textures but it was all such a lot to take in and I've forgotten what she called it

Anyway, most of it didn't come as much of a surprise (I've had my suspicions for the past couple of years) but after I dropped DS back at school I burst into tears and I still feel shocked at the enormity of it all. He's been referred for physio, SaLT, OT and as mentioned before, CAMHS.

I really don't know where we go from here; I know the school and the education department will be getting the report also so I suppose it's just a matter of sitting back and waiting to see what happens next?

Also meant to say that a lot of my upset yesterday came from seeing him 'fail' the various tests as it seemed so negative; DS is very bright, great at reading and mental arithmetic yet none of that came into the equation and it just left me feeling quite deflated when he couldn't even answer the questions he was being asked. I hadn't realise just how much he's affected by his problems so to see it right in front of me was quite hard; he kept looking at me for clues/prompts yet I couldn't help him and that hurt

Anyway I'm just yakking away now, sorry!

First of all Hellooooo and welcome :)

I can imagine that you are shell shocked at the moment as it is certainly a lot that you have had to take in. Give yourself time to absorb it all. Even though you expect the outcome it still his a very hard thing to hear.

What happens next really depends on you. You have a lot of appointments to wait for and none of them happen overnight but what I would suggest is arrange for a meeting with the Head/Senco at his school to discuss his diagnoses and if he is struggling at school discuss the suggestion of applying for a statement of needs. This also takes a long time to get so the earlier you start the better.

Is he getting any help at school at the moment like School Action/School Action plus? If on plus then the school can make a request for a Educational Psychologist to come and assess him in school with regards to his educational needs.

Big hugs to you

hello

sorry you have to be here (iyswim) but glad you have found your way here - there is a lot of knowledge and support on this board.

I know exactly how you feel wrt the huge lists of things that our dc fail at in assessment. my dd1 has ASD, and was dx'd nearly 5 years ago. the best thing about our life at the moment is that I no longer have to go and list millions of things she cannot do - it all seems so negative, and as if no one is interested in any progress at all. the key thing to remember is that it si only by highlighting the areas your ds has difficulty with that he will get help. progress and achievement is great, and by all means celebrate it, but keep stressing the difficulties, as it is all to easy to get 'signed off' sometimes, when there is still work to be done.

Give yourself some time to absorb the news. I know you have suspected for a while, but if you are anything like me (and a lot of other mums here), you will have been hoping against hope, right up to the last second, that you were going to be told you were wrong. I knew dd1 was autistic. it was a sclear as anything - I had pushed for assessment for months, and driven the whle thing forward. I walked out of the appointment and burst into tears. it was the one time in my life that I desperately did not want to be right.

agreew ith coff33 - you might want to look into starting the Statementing process. it does take time, so the sooner the better. ask on here for help - there will be someone who is going through it all now, and up to date with current trends.

whereabouts in the country are you? what help you can expect will depend a lot on that, I am afraid. some LEAs are better at giving statements to those who need one, and some areas have better SEN depts, as well as SALT/OT etc. was the 'other' thing you mentioned Sensory Processing Disorder (or similar)? you might want to look into Retained Reflexes therapy, or Sensory Integration therapy (sadly neither likely to be available on the nhs) - there are lots of threads abut them.

The waiting lists are likely to be long for SALT, OT etc. again, ask away on here if there are areas your ds is struggling with, and there will be someone who has the knowledge and experience to help.

Hello!

Firstly, never apologise for "yakking" on here. I'm a firm believe that getting all this out is almost a form of therapy so yak away!

I'm sorry you're feeling a hurt and probably a bit lost. I completely understand that feeling. I feel like it a lot.

I think the most important thing to remember is that your ds is the same boy he was before all this was officially diagnosed. It sounds as though he has a lot going for him and the fact that he's so academic is obviously a huge positive and if you can just focus on the positives that will really help you cope with the negatives. I'm not saying ignore them, but I speak from experience and I tend not to dwel too much on my dd's negatives anymore, but i really praise the good now! I didn't always. I used to be really quite critical but now I have so many proud moments, like yesterday when I saw her sing in the school concert. It was parents evening recently and the teacher told us she was a bit of a loner, which at first felt bloody awful, but then her creativity and fantastic manners got brought up and I have to remember that.

Can I ask, what exactly is it that your ds struggles with. Does he struggle more at home or at school? Does he have friends? You say you've had your suspisions for a couple of years, did school/pre school?

Thank you for the welcome coff33pot

No there's no School Action Plan in place - we got off to a shaky start with the school; in nursery they said he was 'overly tactile' (he used to stroke the other children, try touching their faces, generally being a nuisance) but the nursery teacher was quite horrible about it and asked my permission to keep a 'diary of his touching others'. I said no, I didn't want a diary kept as he was only 3 and whilst he was invading people's personal space, I knew there must be more to it than him just being 'naughty'. Then in reception they put him on a 'behaviour' chart (on the wall, for everyone to see!) as he couldn't sit still and concentrate on the carpet. The teacher didn't tell me she'd done it and it was only when DS started coming out with things like 'I've been a good boy today and got all 4 ticks' that I found out about it. He was so distressed as he didn't know what he was doing that was 'naughty', it really confused him.

Apart from that bumpy start, his teacher he has now is much more understanding and has put up a wall-planner so that DS can see his daily routine (and also to stop him asking her the time every 5 minutes, how many minutes until hometime etc, I suspect!) and she's sympathetic when he has a meltdown as she can see herself how frustrated he gets over the smallest things. But apart from that, we have nothing official in place.

The paed yesterday said that his problems will have a major impact on his educational needs and that in order to cope in mainstream school he'll need extra support. So will I have to ask the school directly or will they read it in the report they get and act on it themselves?

Sorry for all the waffle - there's that much gone on in his life that it's hard to keep it brief!

Ah cross-posted with others there, will have a read now, thank you!

Fig, the bit you mentioned about your ds's nursery putting up a chart on the wall without your knowing or permission has made me really cross!!! The bloody cheek!!

Dd's behaviour was rather "unusal" at preschool and one day I was pulled to one side(again!!) to be told that a lot of parents had actually complained to the staff about my dd NOT hurting or bullying their children but.......................wait for it, HUGGING their children too much!! Now, don't get me wrong, I understand the importance of personal space and I understand that it probably should have been mentioned, but the fact that these cliquey up there own backside mums had nothing better to do with their time than go in and discuss how distressed their dc's were with my dd occasionally giving them a little hug. Grrrrrrrrrrrrrrrrr!! Sorry, i've gone off track slightly.

Fig - so sorry to hear what nursery have done, that's utterly unacceptable.

Welcome to MNSN x

Ok so they havent got anything in place really. Personally I would still have a meeting with your reports to hand. Request that they apply for a statement. If they say something like "oh no we dont feel we need to at this stage".......do it yourself.

Its easy and IPSEA have standard letters for application for you to copy. A very informative site. When you apply for a statement and if they agree to assess then the LA will automatically send an Educational Psychologist to his school to assess him anyway.

Keep a diary of events too about home and about school. You could even ask for a home-school book. Use the excuse that he is unable to tell you about his whole day and is sometimes distressed when he gets home and cant explain why. This will give you a reasonable record of what is going on in school and how his day has been and also information to pass on to other proffessionals that you are currently waiting to see.

Thanks silverfrog and makemineaquadruple - it's really reassuring to speak to people who understand.

Silverfrog - we're in Cumbria. The OT appointment has come through for the 15th of November (DS's general paed that he sees for unrelated health problems referred him at the same time that he referred him to the Comm Paed). DS is in a very small school (60 pupils in total) but there's one child with ASD in juniors and I know he gets additional support so I'm hopeful the school know how this all works!

Makemineaquadruple - I think I noticed DS was different as a toddler, I tried to put it down to him being a boy (he has 2 older sisters) but things just didn't sit comfortably with me. I'll try and summarise the past few years:

• developed a fixation with light switches at 18 months old, it was all he wanted to do, switch them on and off, over and over again. Also had a phobia of hand driers, terrified him.

• at 3 years he wouldn't leave the house unless all electrical appliances were switched off, could be the only one to open the door, used to stand and watch the oven timer counting down, for anything up to 20 minutes without moving

• fixated on clocks, time, signs, always spotted things so minute that no one else would have even seen them

-would have to go re-enact things if they hadn't gone how he'd intended

-went through a phase of hating anything on the right, only liked turning left etc if we were out for a walk/in town

-now he's obsessed with computer games and would play all day if I allowed it. He plays the same games, over and over again, doesn't like 'going out' or playing outside, ever. He also rewinds sections of cartoons over and over again.

-he has 'friends' but he only likes to play games that involve him acting out computer games such as Super Mario. He doesn't get team games and won't join in as he doesn't automatically understand the rules, they have to be explained in detail (but then he'll stick to them, he loves rules and regulations). He likes his own company, never asks to see friends out of school, if they come to play he only wants to play on the Wii with them, that's it. He doesn't play with toys, other than a marble run which he likes but even that doesn't last and he's soon harping on about getting back on the computer or Wii)

• one-sided conversations, usually either asking a question or to tell us about something (nearly always about a computer game). If I say I've heard enough about Mario Kart he'll turn to the side and say what he 'needed' to say, to himself. He has to get it out of his head, if that makes sense?

-swings arms and legs a lot, never can sit still for very long, lies around chatting to himself/making odd noises if he's not on the Wii or watching TV

-can't use scissors, can't walk for long without breaking into skipping, can't undo or fasten buttons, tries to eat everything with his hands (even baked beans) and needs reminding all the time to use a fork/spoon

There's loads more but I won't carry on, I think I'd be here all day if i remembered everything!

Fig, quite a few points/traits you mentioned ring true with my dd. The bit where you said your ds will turn to the side and carry on talking about Mario Kart I can especially relate to. My dd will also babble to herself and will pick up on the tiniest of details that nobody else would notice. She's only 5(nearly), but can remember so far back, but the little things iyswim. For example she might not remember what she got for christmas 3 years ago, but she'll remember who was in the room, what they were wearing, where they were standing, what they said etc. It used to freak me out, but now I see it as an amazing talent that most people don't have.

gosh he sounds so much like mine!

Every 'game' DS plays is from a TV clip or computer game. Team games are out. He acts out his 'games' by himself and woe be tide his sister suggesting he does it differently as he shouts "thats not in this level!" The repetitive questions are a nightmare arent they? For the last 6 weeks DS has gone on and on about rankings of films. Can I watch that? no its a 12 you have to be 12. Why? and so you tell them. Next day "why do I have to be 12" can I watch this one then? no you have to be 18!! Same every day with the same film clips he sees or posters on cinema or game adverts. Drives me potty

DS has an excellent long-term memory as well, he recalls the most random things and expects everyone else to know what he's on about!

Coff33pot - yes, all sounds familiar! The other day I got "when you're dead, I'll be allowed to play on Call of Duty" I was like oh, thanks for that The questions are endless and I find it exhausting, even driving the car's a challenge as goes on and on about the pedals, buttons, heaters plus randomly shouting out road signs and their meanings. He's got a thing about people who break speed limits and says he wants them all locked up!

Oh and thanks for the tip about the diary - at the moment the teacher comes to me after school and tells me what's upset him but all the other parents are there and I find it a bit embarrassing. His answer to everything about his school day is "I can't remember" so a book that went between home and school would definitely help us.

We actually had a home/school diary, but luckily haven't actually had anything written in it for a few months now!! They are handy and keeping in the loop and be less embarassed in the process.

At dd's school we have a boy with moderate to severe autism and a boy with down syndrome and I have to say I hate how their new TA's handle letting their parents know what's happened in the day which needed reporting. Most days the autistic boy's TA will usually push her way through all the other children and parents holding his hand and looking really cross. She'll then hand his mum the book and literally list on her hand ALL the things that he's done. I've overheard a lot of things she's said and sometimes it's just that he's been "making silly noises for most of the day" or that he "didn't want to sit down and they had a lot of trouble getting him to concentrate". I'm sorry but for a dc with severe autism this isn't bad behaviour, this is classic autistic behaviour. There's never any subtlty in her approach. The mum must feel awful. I'm not suggesting atall that this will be the case for you atall. Overall they are very helpful and I would definately reccommend them.

Coff and Flyingfig do you have my 6 year old son in triplicate in Cumbria and Cornwall?!

triplets from outer space!!!

At the moment we cringe at the word Call of Duty, Tombraider or Ghost Squad. And the when when when can I play them AHHHH!

At the moment its Pirates of the Carribean after a film clip on TV which he has now made up the whole film in his head and its his AWSOME game!

In the same breath his fav DS games are super mario, pepa pig and cooking mama

TV: Fireman Sam, Bananas in Pyjamas, Iron Man and Justice League Manga, Thundercats, Phineas and Ferb

Films: Space Jam, Power Rangers, Peter Pan, Mickey Donald and Goofy the 3 muskateers and his very favourite at the moment the Phineas and Ferb movie ARRRRRRRRRRRRRRHHHHHHHHHHHHHH.

The whole screen thing is not helped by DH being a tech freak. We have a wii, 2 x ps3, DS, XBOX kinect, ipod touch not to mention DH with ipad, iphone and touch screen PC It is every kid that probably has AS's dream!

Mario Kart on the wii:( WE have Kustom Kart and some other kart as well (don't think that these are entirely kosher . Not to mention Sims racing which appears to be Mario Kart in another guise

Same here! we got 2 x ps3, Wii, 2 x DS and 1 x dsi, ipod is out of bounds as DH pride and joy (dont want to listen to the bloody nolans anyhow lol)

Main obsession TV wise is Keenan & Kel, Phineas & Ferb and Horrid Henry. Just cost DH £8 for a series 1 box set of Horrid so that we could delete 47 episodes from the sky 9 hours of Horrid Henry AHHHHHH! Film wise is Harry Potter 1 to 4 and the very first Pirates of Carribean (as I like Johnny Depp I can cope with that lol)

Film of the month is Casper's Scare School, he watches the same film for ages and then will switch to something else; game-wise it's Little Big Planet on the PS3 and Super Mario Galaxy on the Wii. he likes Phineas and Ferb, Horrid Henry Chowder and The Regular show (but drives me bonkers rewinding segments over and over, damned Sky+

Don't get me started on Club Penguin, argh, he gets really upset if others 'walk away from him' and he would stalk them until they 'spoke back' to him, it's taking ages to try and get him to understand that they're not being mean, they just want to Club Penguin in peace! Then there's his game whereby he'll only communicate with me via the medium of 'Puffle' and he cries because I don't work out what he's trying to tell me with his facial expressions (I'm supposed to know the faces for hungry, tired etc but to be fair I struggle to read him at the best of times, never mind when he's being a Puffle!).

I just convinced DH to sell the 3DS as it made him feel sick I am sure our husbands and DS's would get on. They can all "play side by side" LOL!!!!

So suffice to say FlyingFig we completely understand where you are coming from. So welcome - sorry I forgot to say that bit!

flyingFig Know where you are coming from with puffle! DS talked for 7 days in parseltongue lol

Welcome to the in club!

Hello flyingfig. I have a (supposedly) NT DS3 who has an infestation of puffles, including a pink one, all named and all living in his bed! My ASD DS2 isn't fussed, but he loves Super Mario Galaxy. Welcome.

Please don't expect the school to do an awful lot for your DS off their own back. They might do, but I'd get a meeting with the SENCo, with your DX in hand and find out what support they are going to provide for your DS. They may want to go through the School Action, school action plus route, which will slowly get your DS some extra support. It depends what you think he needs. If you think he needs 1:1 support then he will need a statement. If he just needs a bit if understanding then maybe not. But the school probably won't request statutory assessment for a statement unless they think he needs more support than they can offer from their own staff. It is often better to request statutory assessment yourself, with the support of the school, as it gives you some control and more rights to appeal than if the school requests it.