CARE Fertility Bulletin Board

Loui5e · 21 Oct 2004

Just wanted to say milo is very very loving very caring and the sweetest little boy, he is very bright and like the rest of you wouldn't change him for the world.( well maybe his scream not quite as loud;) )
Felt I had been a bit hard on him.

Louise xx

Maria xXx · 03 Jul 2006

Louise,

I read your post about Milo and you could have been describing my nephew at the same age. He is now 6y6m, but at 3y the screaming was constant, also he was very clingy, he was virtually glued to my sister.

"When playing he is constantly screaming if Finn touches something he wants or doesn't let him get his own way he screams, now Finn does torment him which doesn't help."

This describes my nephews - he has an older brother too Very Happy

Like Milo, my nephew has friends, great speech, toilet trained fine, excellent motor skills, at 6y he plays for the school under 11's football team Very Happy

Unlike Milo, he did have big issues with food and would only eat a few certain foods, but he is much, much better over this now.

The thing is, my nephew has never been diagnosed or even assessed for anything but everyone in the family are convinced that he has aspergers. There are a lot of medical people in our family but it was never openly discussed, which in retrospect seems odd. It's only since Adam's diagnosis my sister has talked about her concerns about her ds.

My sister is sure he has aspergers but she feels that there is no reason to give him a label.

He is doing really well at school, has friends, into sports which is brilliant on so many levels - building self confidence, working in a team, using good eye contact, social skills.

Starting school was the best thing that happened for him (and my Adam Very Happy

) dn is the youngest in his year, he was still 4y when he finished his reception year Shocked

but he coped brilliantly.

Adam had such obvious difficulties - no speech at all - that he needed the diagnosis to get access to the extra support - speech therapy, portage, OT, extra support at nursery and then an educational statement.

Your second post made me smile, I know exactly what you mean, it feels good to get things off your chest or even just to write down your worries but you feel so disloyal to your precious child.

Maria xXx

maryrose · 04 Apr 2006

Evening Ladies,

Maria - Do spill the beans??? Or have you already done so? Did you mean that there is possibly a genetic element running in your family? I have read lots of stuff now about the strong genetic influence - one article I read [in the BMJ] proposed something like a 70% chance of a sibling having ASC as well, if you have a child diagnosed with it.

Loui5e - Your 1st step, if you feel you need help, is to go to your GP and ask for a referral to a community paediatrician, but be warned - ours was very dismissive and said that he thought Olly was simply very bright. He was obliging about the referral though.

Everyone - We have had our last session at the Child Development Team today [thank goodness, as it makes Tuesdays a total nightmare] and I had a good chat with one of the ladies, who is actually the speech therapist.
She told me that they had identified that Olly has a real need for sensory texture [I think she is right] and that they would be advocating that this was added to his curriculum, when he starts reception. Shocked

I know instinctively that they are right, but was a bit shocked that 6 weeks [no, 7wks] has gone by and they haven't mentioned it before. Nice to be kept informed!
She also said "And that is what that was all about, as well" referring to Olly coming to me for a cuddle, kissing me and telling me he loved me.
Hey, what??? I felt like saying "Ballcocks!" Honestly! sometimes, I do feel that they are abnormalising normal behaviour. Was a bit annoyed really as children with ASC are quite often 'remote' and don't like to be touched and cuddled. So, he can't win can he really, on that score??

Robbo - I am all done in this last few days and not much help! Foul start to the week, hope it gets better tomorrow as its my birthday! LOL
Aversion to noise is not an indicator on its own - my big boy was scared stiff of the hoover when he was a tot and absolutely terrified of people dressed up - like Santa! He was just a little bit timid and sensitive, bless.

Really quite fed-up after the last few days, will fill you in on peoples incompetence later Evil or Very Mad

Love Maryrose xxx

Robbo2 · 14 Mar 2007

Hi all

Oh Maryrose - here's a massive cyber (((hug))) cos I know you must have been having a very stressfull time over the past few weeks - if only with the toilet issue without all the assessments and everything else Sad

! Hope the loo problem is sorted???? Just by starting the thread and getting everyone talking about their children/fears/worries etc is a great help - and really interesting on what's normal/abnormal behaviour. What a silly woman with the comment about Olly giving you a hug?*! I have read that children with AS have a tendancy to tickle - not sure if this is true or just some complete rubbish! - but DS is always tickling - but we do it to him! So don't children follow your lead??? This is what I mean about labelling kids without real obvious signs and even with those that have they seem to look for even more! Hope things start to go back to a bit of normality now that the assessments are out of the way for you.

Louise - strange thing is if I had read your post maybe 3-4 years ago I would have maybe just said there was a bit of jealousy at play and nothing more. Now knowing what I know and having read about Aspergers I'm really not so sure anymore. However I do think - and as Maria has said - that unless you have a child with obvious signs such as Maria had with Adam then it's realy difficult to know what is normal for age and abnormal that it overlaps into ASC. As Maryrose said previously - the 2 do intermesh. I also know from friends with children that they ALL could find some behaviour that fits into the Aspergers Syndrome. I was speaking to a friend who is an early years teacher and she said to me if there are no REAL signs and you are not overly concerned then leave it until he's approaching the end of his first year at school as DS (just coming upto 4.5 years old) is still too young to be assessed for Aspergers. Particularly when he's an only child that has no real children of his own age group around on a regular basis - somethings just have to be learned. So unless anything starts that makes me overly concerned I think I intend to watch and wait and see how DS progresses with things. Particularly now this threads started - cos there is always someone to pass concerns by. If you do feel concerned at all then as Maryrose suggests get in touch with your GP.

Maria - I too would agree with your sister regarding giving a label to DN if he's doing so well. The main reason for this is that I came across an Aspergers Forum the other day (in my search for info!) and the kids (and adults) on there that felt so hard done to was scarey. Now I know living with something (I've had diabetes since the age of 5!) can in certain areas be restricting but I also think it's how things are portraid to you - and some of these kids were literally sounding suicidal!!! I'm a big believer in it's only a problem if you make it so. My mum and dad were brilliant with me as a child and encouraged me to try and do anything and everything - and not to use diabetes as an excuse for not doing so. I never had time off from school or work becasue of it unless it was because I was in hospital (back in my childhood they used to hospitalise you to change insulin etc Smile

!) Now they don't even admit you for more than an overnight stay when first diagnosed - I was in a month!!! But I'm sure you get what I'm trying to say with regards to DN.

Anyway here's a little story totally O/T but I'm sure will make you smile (and probably frighten you to death with the state of our medical staff today!)

Been to hospital for yearly diabetic check up. Got weighed - I asked had I put any weight on nurse said - I'm not even looking cos if I said you've put a pound on you'll worry Rolling Eyes

. So go to Blood Pressure - she puts cuff on arm then starts the machine up - then tried to take my BP but switches the machine off. I tell her this she says "Oh" and does exactly the same thing again! I tell her again and she starts again - AAAAnd does exactly the same thing AGAIN! So I tell her again - and guess what - yes does it again. I tell her and she presses the start button too early so it still didn't read Shocked

. I was so exasperated by the time she got a reading guess what - BP through the roof! Sooo continue to see the consultant and we are chatting - normal consultant on mat leave so I get someone I've never seen before. We're chatting and she didn't even re-do my BP, check my eyes or my feet (which should be done at this clinic!). She then turns to me and says "Are you in the profession Shocked

" Well I was giggling so much I couldn't ask what profession she meant for at least a minute cos every time I started I would set off again - she didn't get the joke Rolling Eyes

. She eventually said well you know so much about diabetes and have all the terminology correct I thought you were in the medical profession. I was sooooo gobsmacked I just responded with no 37 years of having it, reading and being half educated gives me my knowledge - How scarey is that???? And a friend has just had 44 letters (yes 44!!!!) for the same appointment - our life in their hands*!?

Sorry for the huge post - about 25 mins that one Maryrose Smile

!

Looking forward to hearing/reading more - best go and do some cleaning!

Robbo x

Maria xXx · 03 Jul 2006

Happy Birthday Maryrose Very Happy

really hope you had a good one.

Maryrose, I totally agree that when they start assessing a child they see behaviours and label them without considering that it could just be normal.

During one of Adam's assessments they stated that he "hand flapped" Adam doesn't "hand flap" in an autistic way - he flapped his hands and jumped up and down in excitement because he was 3 and she was blowing up balloons and letting them go, whizzing round a big room Rolling Eyes

To be fair to them they only get to see a snapshot of your child, in often unfamiliar surroundings. This is why the parental reports are so important - have you done one yet?

Hope Olly is feeling better after his poo problems, it sounded horrific for everyone. To be honest it's made me a little bit nervous about Adam,
he has a night time nappy, but he will wait until his bedtime nappy is on and will do a poo straight away and I change him and he goes to bed. More often than not he will do a poo in his nappy when he gets up in the morning.

So he obviously has control and his nappies are only slightly wet in the mornings, I was going to stop using nappies next week (Easter holidays) but after hearing what poor Olly and poor you went through Confused

I don't know.

Maria xXx

maryrose · 04 Apr 2006

Evening Ladies,

Robbo - epic post! I wanted to reply last night but I was totally whacked.
I didn't sleep the night before because I was so stressed about 2 things. One - an issue with the preschool - which I had to complain about yesterday morning, having fretted all night about it, and Two - I am so worried that these IPF forms will be filled in erroniously, as the lead professional in Olly's case, who is filling them, in has never done anything like it before and already has made a couple of mistakes.

Here is a little example for you of a 'behaviour' which is ASC related, but which one might never realise ...
Olly is quite number orientated, which is a common theme and Daddy is Mr Maths!
But Olly has got a real thing about the number 4. Goodness knows why??? He recognises it immediately, looks for it and its his favourite number.
I have been thinking that this is probably and ASC thing, but also wondering whether it or not. Then, last Tuesday, at his final session at the CDT, I was speaking to another Mum and I have started to see parallels between Olly's behaviours and her L.O. and she just dropped into the conversation that her son has a real thing about the number 2.
It was a bit of a lightbulb moment! I told her about Olly and his 4 and it became apparent that its not a coincidence.
But if you didn't know anything about ASC, you would never think of that as a symptom, would you? Confused

DH has got this thing about things being in perfect symmetry [sp?]. I just thought it was a bit quirky until I read about the fixation with patterns. DH HAS a big thing about patterns and admits to having.

Your nurse story did not surprise me one bit. I have had the same with IVF tx. Because I am well informed and can speak with the correct terminology, I was thought to work in the health profession. Well, I did tbh, but totally unrelated [substance misuse].

Maria - Ta very muchly for the birthday wishes! Very Happy

It was one to forget actually, but hoping this weekend away will be nicer. I was horribly stressed yesterday.

Yes, I did a 4 page document for the Early Years Intervention Group [we got an app with a consultant paediatrician immediately afterwards] and we have a recording book, which everyone contributes to. I am about to do our part of the IPF forms, which will take a bit of thought and time to do.

Olly hand flaps big time! I wanted to post you a pic of him in action, but something has happened to Photobucket on my 'puter and I can't access the upload, so stuffed at the mo! Its very annoying.
He also jumps up and down on the spot loads and I know this is an indicator too. The hand flapping started very early - it was my SIL who commented that it was unusual and I googled it after that. That was the very 1st thing that brought ASC to my consciousness.

Must go, dindins! Back when I can, love Maryrose xxx

sarah w · 26 Oct 2005

Hi ladies ,

the more i read your posts the more similarities i see with my DS . Me & Dh have always said DS got a V complicated personality , he hand flaps we ask him to stop flapping , he has certain things that get him in a real pickle eg sitting on the toilet !! we have a toilet seat connected to step which he uses when needs a no 2 , ( although he still trys to hold onto it ) I have to tell him to sit on loo !! He has a real fear of the toilet so if he needs to go whilst out he gets in a panic & flaps it's v difficult to calm him down when he get like that.

He extremely fussy eater , his menu is so limited & he has never really enjoyed eating or food , got too much else to do. His behaviour V ridged , you cannot talk him round to do something he doesn't want to do . He's still got a slight problem with having a poo , which im hopeing he will grow out of !!!

I guess that these things among others could just part of his personality ???? He's like marmite , kids either love him or not , he's v full on all of the time , he actually thinks he's a dinosaur Very Happy

most of the time , absolutely obsesed with them .

Surely if there was anything there playgroup & nursery also the hospital would have picked up on it ????
How do you recognise the difference's from just someones personalities ???

I always presumed autism was accessed from unable to have eye contact , i had no idea there was so many other factors ,

I would welcome any veiws ladies,

Sarah x

maryrose · 04 Apr 2006

I'm back!

I remembered that i forgot to reply to Maria [and everyone] about the bowel probs.
I'm pleased to report that normal service has been resumed.
I put Olly on a high fibre diet and its worked the oracle. In fact, he's been caught short a few times Confused

Olly has the opposite to the food aversion thing which is a common indicator. I wouldn't say he is an indiscriminate eater [thankfully] but he loves his grub and will put totally unsuitable things in his mouth - as well as pick the dried pasta off the pictures in Playschool and chomp on it!
So, changing his diet a little is not a big a deal as it might be for the opposite end of the spectrum.

I took him off all the meds and the doc was a bit frowny! But he said not to restart them, unless he didn't poo all day. So, if no poo by teatime, give him a small dose of Lactulose. never tried the other stuff as didn't need to.
He's going 3 times a day at the mo., and thank goodness, he seems to have forgotten how much it hurt. That was my real worry.

Mind you, he is saying his tummy hurts tonight which is worrying me. I might have to take the high fibre back a little bit. Confused

3 poops a day is quite a lot, I guess.

Going to turn off my puter now and restart it, to see if it affects Photof*ckit!
Love Maryrose xxx

maryrose · 04 Apr 2006

Sarah - have a look at the National Autism Website, hun. Olly has never had a problem with eye contact. I have just had a report from the CDT and the speech therapist reported that he does the opposite at times. He eyeballs! lol. I hadn't really noticed this, but I am taking her word for it.

Lack of eye contact and developmental speech problems DO NOT rule out autism. It is a common misconception.
Its such a complicated condition and affects everyone differently. But there are common denomitators [sp?] and if you have enough of them then it is time to seek help.

Rigid thinking is a huge marker. My Dh has this in a big way - it s nightmare! But its helped to realise that its caused by a condition rather than him being an awkward git! LOL
Olly has this too, i think, but its kind of hard to assess in him at the moment.

A really important thing to remember is that when it is spotted in the early years and acted upon, much progress can be made. I have already seen this in just a few months in my boy.

Please don't panic if you are thinking your DS might be on the spectrum. Really, there are far worse things to have and some LOs are far FAR more badly affected. We have much to be thankful for.

XXX

Maria xXx · 03 Jul 2006

Hiya,

Adam is a jumper not a flapper Very Happy

His number is 6 (at the moment -it does change) He also loves numbers and more recently maths. His colour used to be yellow but he's not too bothered with colour now. Just remembered a cute picture showing his love of yellow Very Happy

He is 16m, he would only play with the yellow balls Laughing

But Adams one true love and passion is Thomas the Bl**dy Tank Rolling Eyes

He always and I mean always has a train with him, constantly talks about them. We went through a short phase of the naughty corner not working and out of desperation I put Thomas in the corner Twisted Evil

you would not believe how devastated he was. It worked in that situation but I've never felt brave or cruel enough to do it again.

Maryrose, I found the form filling hard, really depressing having to focus on the negatives. I can't remember, why are they doing the IPF and not a statement?
Personally I would also recommend applying for a statement. It's the only legal way to guarantee a level of support for Olly and you could make a complaint if the provision in a statement is not upheld - you have no such legal rights with an IPF.

Sarah, there seems to be so many traits to indicate autism also conflicting traits like early talking/late talking, lack of eye contact/too much, as Maryrose said it's how many traits you have.

Thinking about eye contact, Adam finds this difficult and has to be reminded to look at the person he his talking to. But my nephew does "eyeball" you and he has the biggest blue eyes I've ever seen and it's sometimes disconcerting how he looks at you.

Got to go now, Adam is awake again, he is having bad dreams a lot at the mo.

Maria xXx

Maryrose, I will tell you about my dh, I always thought that he was just really anal Very Happy

but we have realised that it's probably so much more than that Rolling Eyes

maryrose · 04 Apr 2006

Maria - That last sentence could have been from me, re my Dh - I have used that phrase soooooo often in description of him.

I got him to do an on-line test for ASC in adults, prompted by someone else on this BB.
He got a high score. Ho hummm...
I did it too btw, just to be fair. Got v low score.

Might not be on for 48hrs as off on a little jaunt. Will be back as soon as I can though.

Oh and Photobucket b*ggered for me at mo. Not sure what I can do.

Love Maryrose xxx

maryrose · 04 Apr 2006

Maria - forgot to say, because we have been advised that Olly has 'high function' IF he has it, then we may be blooming years and maybe never, get a diagnosis.
Its hard to get a statement fullstop.
Its very hard to get one without a diagnosis, but we will see..... First stop IPF.

XXX

Robbo2 · 14 Mar 2007

Hi ladies

Maryrose - sorry birthday not very good (and so rude not to have sent Birthday wishes in my last post - sorry Embarassed

. Hopefully the weekend away will be better - where are you off to? Glad toilet prob seems to sorted - one less thing to worry about! 3 times per day may be a bit extreme - but don't let him get constipated again cos we thought we'd cracked it then it came back 10 times worse Sad

! Sorry about nursery worries - hate it when something is niggling me and I just HAVE to have my say Neutral

. I take it from your posts DH has some ASC markers? Has he ever been diagnosed or is it just something you/he took as part of his personality?

Strange about the No 4! The only reason I say that is cos when DS was in SCBU the nurse asked me if I was coping (cos I was more likely to have PND after IVF, being diabetic and then DS being in SCBU!!!) I jokingly said I didn't have time to be depressed but did think I had a touch of OCD with all the handwashing!!! When I googled (I'm terrible for it!) apparently the No 4 is the number that people with OCD are obsessed with - and I used to do everything in 4's!!!! Anyway it's passed so it must have been a thing of the time!

DS doesn't have a fixation with any number in particular - but is V mathematical! We thought it was just from the things we were playing cos he likes bowling and darts which of course are all number based. No particular repetative movements (as yet!).

Had to laugh at your description of Olly picking dried pasta off the pictures! DS not overly fussy eater - he knows what he likes and will eat plenty but I do have trouble getting him to try new veggies (but will try most things sweet!)

DS has a little of the rigid thinking but if I set a time limit on say playing music that he likes he will quite happily switch it off and find something else to do.

Sarah - bless thinks he's a dinosaur. Funny my friends little boy used to think he was a dog - he even ate and drunk like a dog?*! But it was before the time that AS was a big thing. DS has just started the "NO EYE CONTACT"! which has come in sync with his shyness - so am thinking this is what it's more about. Try not to find things IYKWIM cos as I said very early in the thread I'm sure most parents could find some markers to put their child on the Autism spectrum!

Louise - forgot to say - I would say DS is brilliantly behaved 85% of the time 10% he can be a mischievous cheeky little so and so and the last 5% can be a little monster! But from what I've seen of ALL children this can be the case!*?

Maria is so right about the snapshot of your child. DS since this all kicked off in Feb has become obsessed with me asking his teacher what's for snack and what will they be playing today when going into nursery. Now anyone assessing would say this is an obsession and possibly a marker but I KNOW that it's a way of getting me to stay just a little longer cos he doesn't want me to leave him which again brings it all back to the loss of his Nana Sad

DS keeps constantly asking me if we cut ourselves or feel ill - will we get better - and I keep saying of course we will but so scared of something happenning to one of us Sad

!!!

Maryrose - just hinking about what you said and what a huge difference you've seen in such a short space of time. I said about a report in The Mail that I'd read that said a huge number of children were "Outgrowing" Autism. It does make you wonder if the ones that are only mildly affected are helped just by something as simple as even starting school and having the correct support!

Well DS has had a brill week at school Smile

!!! A little one in his class he tells me is very naughty and can you believe he's scared of grass!!!! Which he finds amazing so I point out "OOOh like you used to be scared of fireworks! Then he said to DP Daddy I've never not liked school you know Shocked

. This from someone only 2 weeks ago was screaming for me not to take him!!!! Anyway when I asked him about this he tells me it's cos he was bored in the afternoon and there was no-one he liked in his class -logic of a child hey???

Sorry - I know I've written waaaaay to much again - really must go and have a bath and go to bed. I've been off since Tuesday afternoon enoying all the lovely sunshine Smile

!

Take care all

Robbo x

maryrose · 04 Apr 2006

PPS. PMSL in the nicest possible way about Thomas The Tank. Ha! Just be thankful that Adam has an obsession about something acceptable. Olly's is about a collapsible parking bollard in the village centre FFS!
I have to take the laminated traffic lights with me whenever we pass it. Otherwise, we would never ever get past.
And he re-enacts it at home with a double decker bus stood on its end [as the post] and his abacus [as the chain] and his ride-on [as the van which parks there].
Its VERY off the wall, but you kind of get used to it. Rolling Eyes

Olly makes me smell the bollard too - oh and his double decker bus of course, because the 'lellow post' [as he calls it] smells of rust.

Giggling now, OMG! XXX

Robbo2 · 14 Mar 2007

ah ah - sorry yped so long our posts crossed Laughing

Robbo x

maryrose · 04 Apr 2006

Robbo - I must go to bed but for Goodness sake - NEVER EVER believe anything you read in The Mail!!!

OMG! It is a poisonous newspaper - far far worse than The Sun or The Express. People knew they were comics but they think The Mail is respectable.
Its a very dangerous newspaper - if you can call it that. Switch to a broadsheet encourages people to use their brains instead of attempting to brainwash them.

I am totally serious. The Mail is a dangerous influence on naive people who don't understand how they are being manipulated.

XXX

Robbo2 · 14 Mar 2007

Hi Maryrose

I don't tend to believe too much that I read in any newspaper if I'm honest. As I said when I first posted about the report I didn't believe it as how can your "Outgrow" Autism??? Just thought it was a strange coincidence that they had reported such a thing but then both you and Maria have said that being in school and the support your boys have had has made a huge difference to both of them. As Austism is a spectrum condition then someone on the low end may well get over the barriers that they initially had just from schooling and support.

Sorry - I'm having to giggle at Thomas AND Olly's Collapsble bollard! DS is music mad - and it changes with whatever he likes at the time. At the moment it's the flipping "Go Compare" advert. We too have the moustaches and have to re-enact the adverts and every now and then look on the computer - but he sings it constantly - to the point I'm about to scream Smile

!

Have a good weekend all and enjoy your trip Maryrose.

Robbo xx

maryrose · 04 Apr 2006

I have some significant news, ladies......

As you know, Olly's assessment process has come to and end from the Child Development Team.
As you also know, the lead SENCO for our area suddenly did a turnaround 2 wks ago and said that we should apply for IPF asap [in complete contradiction to what she had advocated previously].

Yesterday afternoon, I got a phonecall from the CDT to ask if they could come out, to discuss the findings of their assessment process.
The upshot of this was that I went in for a meeting with them, with Olly, at lunchtime today, as I had to go to bank some cheques in the town they are based in.

Totally had the wind taken out of my sails. I was asked if we wanted to simply apply for Individual Pupil Funding or wanted to go for the full statement of SEN.

Really wasn't expecting it, as just as with the IPF, the lead SENCO had said that we would be unlikely to get it without a diagnosis and he may never get 1 of those as his problems aren't bad enough.

The CDT think differently, it would appear.
Olly's worker advised us to apply for the full statement [she explained to me in detail why] and I was happy to do so upon her advice, despite being a bit in shock, because the lead SENCO has been playing all the problems down.
Was a bit unhappy about Dh not being there to be part of it too, but have regaled him with the full story and he has agreed with me.

So a complete turnaround here. We've gone from nothing to all, in 2 weeks. It can take 6 mnths to hear about a statement, but this should not affect the decision on the IPF.

Still getting my head around it - my 1st reaction was to feel tearful [I hid it!] as its so unfair that my gorgeous baby has been inflicted by a nasty condition.
On the other hand, we have much to be thankful for, because as his worker says - he is a very bright boy and so, with one-to-one to manage the neurological impairments, he should do very well in school.

Oh and something else - they said that it was a shame that he had come to them so late [bl**dy cr@ppy 1st preschool] as they would have expected to have seen him at 2.5 yrs. Which just goes to show, ladies, how important it is not to ignore advice from preschool settings. I so wish that we had had someone thoughtful, caring and educated enough to say something to us.

Love Maryrose xxx

Elizabeth hope · 20 Oct 2007

Gosh Maryrose...I haven't really found time to go back over old posts to see what your history has involved but I just read this post and I wanted to say that I think you sound very honest and very much in love with your gorgeous Olly. Your feelings of sadness are normal. Your strength to fight Ollys fight is the most base level primal fight a mother can face and I think sometimes the tears come once you achieve everything you have been fighting for.

Well done from one Mummy to another.

You moved things on very quickly...it will be this that shapes the rest of Ollys future. Be proud of him and proud of yourself.

Elizabeth
xx

Sah · 14 Sep 2004

Well done on getting this far! I was going to post to say about statement as my friends son is high functioning and he has a statement (his school is rubbish though and its not used properly and she is forever in and out of there!) He is so bright and achieves better test results than his sister who is 3 years older than him so that in itself causes problems! On mobile so can't type much but you have done a great job for Ollie.

We are our children's voice and if we don't speak up for them no one else will.

I did chuckle about the dinosaur mention as apparently a lot of AS children start off obsessed with Thomas Tank as did ky friends son....totally obsessed. I can remember her saying the next phase is usually dinosaurs so she point blank refused to have ANY dinosaurs in the house! Now obviously many children become fixated on things and grow out of them with no problems so its not an indicator in its own it just made me remember what she had said!

Robbo2 · 14 Mar 2007

Well Maryrose - WOW!

Had a quick read last night but didn't want to reply withought having a proper read.

Firstly - I didn't know whether to cheer or cry for you. Cheer in the sense that you've achieved your goal and cry because I could sooo understand where your thoughts and sadness were coming from.

So firstly - well done for getting your point over and as the other ladies have said as a mummy we would fight tooth and nail to get anything for our beloved children and you have achieved that Smile

!

Absolutely gob smacked that they have done such a complete turn around. This then also makes me suspicious of the assesments - as in what 1 person sees can be totally different to another. Quite worrying in the fact that it makes you wonder how many children who desparetly need this support slip through the net (as Olly obviously would have if it had been left to the lead SENCO!!) and those that maybe don't need it quite so much are given everything that there is to be given IYKWIM.

I'm also a bit worried now about the statement that the CDT made about Olly being referred to them late??? ALL the nursery/early years workers (I know 5 and all in different nurseries!) that I have spoken to have said that their nursery would not even look at it - it would be left to reception class - so I don't think it's out of the norm to be referred at a much older age than Olly is now - although this is of course worrying for us Mummy's who have children that are displaying a few AS traits!

Again as Sah has said seems to be a prominent point in all the children displaying ASC traits - they are all extremely bright! So this is the point we have to work on and help them achieve the best they can.

So well done for your achievement and big hugs for how you are feeling although once you see what a help the support is to Olly I'm sure these feelings will all become a distant memory.

I'm away for the next few days but will keep upto speed on my mobile - just may not be able to type much Smile

!

Have a good easter everyone - don't get weighed down with all the chocolate! We have 11 easter eggs at the last count!!!! 4 of which DS won from Nursery - Would be OK but we still have a cupboard full from LAST easter, DS's birthday and Christmas as we aren't a big sweets/chocolate fan - oh hum!

Robbo x

maryrose · 04 Apr 2006

Evening Ladies,

Urghhh! Big DS has given me his cold and am feeling rather grotty to say the least. Great timing - one over Christmas and the next one over Easter!

Thanks for your replies.

Elizabeth Hope - lovely post, thank you. I really appreciated it.

Sah - You made me giggle! Olly's fixations are far more weird than Thomas The Tank. He is particularly riveted by Bitzer From The Black Lagoon [Shaun The Sheep] and would watch it over and over and over, if allowed. He's now also got a complete thing about any body of water being a 'muddy pond'. This could be a bucket in the garden or a lake seen from the car!
Dinos have not come into the equation yet...

Robbo - You have made some very salient points.

Re children slipping through the net - as parents, we are dependent on the opinions of childcare professionals who have seen it before. I didn't know the 1st thing about ASC and so had no idea that Olly was displaying traits, especially as he has no speech or eye contact problems, which are the only things I knew about!
In our case, what should have happened is that the playschool where Olly started when he was 2.5yrs should have spoken to me. It transpires that they has suspicions from very early on [one of the assistants has an autistic daughter for God's sake!], but they never voiced it to me. If they had, I am sure I would have gone through the usual denial [that is normal] but I certainly would have investigated the condition, the seed would have been planted and we would have had help 18mnths to a year ago as they should have contacted the SEN helpline which is there for every early years setting in our county.
You see, this is most important for 2 reasons. One - the earlier that interventions are put in place, the more successful the outcome in overcoming the impairments. Two - To get funding and help in school, the earlier you have observation, recording and assessment, the sooner you can access the one to one help that will be needed in a classroom of 30 children and 2 members of staff. Olly will not cope in that situation.

And yes, you are right, as the SEN for the school told us, that we have put down as our 1st choice "the people who shout the loudest get the most help". Its very sad and it should not be like that.
DHs brother is a headteacher at a primary school [in Oz!]. He told me recently that there is a child in his school who has a full statement but who does not need it at all, any more. Then there are other children who are crying out for help and there is none to be had. A friend of mine fron this BB is a schoolteacher and has a little boy in her class who hides ubder the desk and runs from the class, at every opportunity. Where is his help???

We shall see what transpires. Apparently, the authorities meet every 2 weeks to discuss IPF so we should hear about that fairly soon.

Lots love Maryrose xxx

maryrose · 04 Apr 2006

I forgot to say - the decision on the statement can take between 4 and 6 months! Rolling Eyes

Oh, and Olly still does not have a diagnosis or a label-apart from SEN. That is a lesser consideration now. He may never have a diagnosis as he is not text book, as the consultant paed. said. I think everyone has taken it as red though, that he has the traits and so has the condition to some extent.

XXX

Robbo2 · 14 Mar 2007

Hi Maryrose

Hope you had a good Easter and you're feeling a bit better??? I read your post over the weekend but wasn't able to respond.

Cannot believe that a member of staff with an autistic child did NOT say anything. As you say not to have voiced even a concern is just crazy. As you know our nursery said something to us as soon as DS started showing a difference in his behaviour - which because of the lateness of it all really kicking off (he was 4yrs 4 mnths!) I think it's more related to his nan's death and lack of peer involvement. BUT as you say I could just be in denial Sad

! but because his teacher has voiced this concern I have now started reading and taking note and asking you and others for advice/information. She has set the seed! Having said that setting the seed does now have it's down side - as in EVERYTHING DS starts to do I'm looking to see if it's connected to AS!!!! When he starts doing something different I'm paranoid and my dad says I'm barmy cos he's just being a normal kid Rolling Eyes

.

You're right too that the earlier there is intervention then the easier it is to help children overcome the problems! Bless the little boy who hides under the desk Sad

!

Can I just ask in what way Olly won't cope with the school setting - is it because of the high number of children or because of the lack of adults to the ratio of children which means he won't get the adult interaction he needs? The only reason I ask this is because when I started DS in nursery I chose the afternoons as there were only 6 children to 2 teachers - which I thought was great as to me it would mean they would have more time spent with each child. However when he started his clingy/changed behavior they ADVISED me to move him to a bigger, more full on class - do you think this was strange advice given the situation or do you think they were trying to see how he copes? The strange thing is as you know cos I've said in previous posts - he's taken to the bigger class like a duck to water and now keeps telling me he can't possibly go to big boys school in September cos none of his classmates are and his teachers won't let him!

As for the time scale for Olly - well lets hope they can get something sorted for him for starting school in September if not before! I have to say what with the flipping Health Service and Education Service it scares the life out of me what will become of both as our children get older!!!

Robbo x

maryrose · 04 Apr 2006

Robbo - Firstly, thank you for posting in reply. It is good to have someone to chat to, on here about this and talking to you is a real help. Having a child with ASC traits is sometimes a bit of a lonely place to be. When the ASC thing is at its height and its hard to see anything else but bl**dy ASC, then it is hard to post generically, IYSWIM? So, thank you again. I don't know of another Mummy on here with this issue, to talk to - apart from Maria who isn't around too much.

Hmmm, I think your nursery were very 'on the ball', but if it was me [in your position] I would have to ask them if there were any indicators, before your DS had the bereavement trauma.

Its really normal not to want to believe their is anything 'wrong' or 'different' with your child. I had a couple of weeks of feeling very stressed and panicky, but as I've said before The Nat. Autism website helped me so much. I realised almost immediately that Olly had loads of markers and I might as well come to terms sooner than later! For me, it was a 'no-brainer' as I knew that to help him achieve his potential, I must accept something was amiss.

I don't think you are in denial at all, Robbo. I think you are worried and very aware and just want to do the best by your gorgeous little boy. That is all we can do, at the end of the day. Its really good that you are keeping a sharp eye on what is happening - much, much better than a blind one. Now that would be denial.
Where you are is a funny place as you have sudden traits that might be just down to recent events.
Damn! There is an expression for it and I cannot recall what it is... It will come back to me.

You ask how Olly would not cope. Well, if it was now, he would be very disruptive. He would refuse to do as he is told, remove himself proceedings, throw things, not join in activities and be rough with the other children and hurt them - oh and lots of other antisocial activities - spitting is a favourite right now.
But if he has one-to-one, these things are diminished to an extent where they are barely visible.

I cannot tell you why Olly behaves like this without being in his head but I can guess. For one thing, the extra sensory stuff makes a room with bright lights and lots of noise and other kids, intolerable at times.
For another, he does not understand certain things that we take for granted - and yet, more sophisticated concepts he has in an instant, which takes your breath away.

Here are a couple of little incidents from today - I said this morning "I am going to make another cup." I meant of tea.
Olly said "Make another cup?" "Have you got the clay?"???!!!!! PMSL, OMG!!! Clever little boy - he knows that cups and saucers are made from clay but takes 'make another cup' completely literally. Classic ASC.

Went to childminders and upon entering her living room, looked around and said "Something is different in here." "Its the chair - its in the wrong place, put it back."
He was absolutely right. The childminder had moved the armchair to stop another toddler going behind her sofa. Olly spotted this immediately. Again classic ASC. I had not noticed.

Must go, bit knackered! Won't be able to get on tomorrow until evening, at least. The electricity board have moved into our village [at least that is waht it feels like!] and are doing major renovation work. Cannot begin to describe the chaos its causing - never seen anything quite like it. They are coming into every house and taking the wires out of all the connections in the fuse box, then coming back at night. Its MAD!!!!

Love Maryrose xxx