CARE Fertility Bulletin Board

maryrose · 04 Apr 2006

Hi Robbo,

I thought I would move to a different thread to discuss the Autistic Spectrum Condition situ.

Olly is being formally assessed at the moment, through the paediatric consultant and the Child Development Team. Also, we have the lead preschool person for SEN [as appointed for the LA] on board [it has all come from her] and she has been out to see Olly for the 3rd time, in one of his settings today.

I have to say that he has been absolutely horrible today! We've had a good few months with many of the more anti-social traits being redundant.
We had a particularly trying time around Christmas, especially when he was ill with the pox. Any illness seems to send the condition [assuming he has it] into overdrive. Not quite sure why, but it is very noticable.

Anyway, the SEN lady for our region and the CDT have both now seen him at his most challenging and although, it was very stressful, that is a good thing, as we need IPF for school for him and need them to help us achieve it.

That's it for now. Hope we can support each other.
Love Maryrose xxx

Robbo2 · 14 Mar 2007

Hi Maryrose

I CANNOT believe this - just typed a mammoth post and lost the flipping thing again! So for now just wanted to say seen your post. It would be good to see some examples of what kind of behaviour Olly has problems with and what you think/how it all started.

DS's has literally started since losing my MIL - which I really think is the problem here and we need (us and teachers!) to help him through it. I will post a potted history on DS when I get a chance but it will probably be Thursday before I can do any long posts - so don't think I've forgotten you/ignoring your posts.

My main concern is DS nursery teacher who worryingly seems to have NO IDEA of how to school a bright/sad/shy child - which is what DS is at the moment! I too hope we can share experiences and help all of us (our kids especially) through it.

I think it was Sah that said - they are still our beautiful children. But for me that's a problem in itself cos I'm such a worrier where DS is concerned that it's just something else to add to my list Sad

! I don't think anyone who hasn't had a fight to get their children can understand these worries - which is why we all understand where we are coming from - IYKWIM. I also think being an only one intensifies all of these feelings as of course everything is centred around them!

Will be back later.

Robbo x

sarah w · 26 Oct 2005

Hi there ,

i can totally sympathize with where your at , we had a hell of a year of worry last yr, my DS had just turned 3 at the time , i had a new baby & HV came to see us for baby's 6 wk check - DS was particulary challenging behaviour at the time & while she visited . Asked me if she could refer him to paediatrics due to him speech difficulties & his reluctance to eat & constipation .

I was totally unprepared For what the app's that would follow , a barrage of questions on his abilities & he had to remove all his clothes as the checked him all over . It was only when i read the a 4 paged letter that was copied in to me with all the "markers" that they were aware of - small head size - medial epicanthus (folds of skin covering the corner of the eye ) - prominent ears - spaced out teeth - delayed speech - reluctance to eat - reluctance to eliminate - controling behaviour- did i realise what was happening .

We were told he had to have some blood taken to test for a number of genetic syndromes, incl autism ,

I was rang at hme by the consultant saying that CMV ( cytomegalovirus ) showed in his blood test & to go on the CMV support web site - its a dreadfull condition can cause deafness blindness & mental retardation .

Eventually after wks had gone by we recieved another call from the consultant saying he didn't have CMV as was'nt in his heal prick at birth . but was still had to be assessed .
We eventually got discharge in january after a yr of assessing saying there's nothing there !!!! & they put children through the microscope !!!

It is a stressful time for you , but no matter what he will still be your son , hopefully you will find it all eventually comes down to nothing & can put it behind you,

Sarah x

So

maryrose · 04 Apr 2006

Hi Ladies,

Just a quickie at the mo., as another hectic day. Just got Olly settled and Dh not home until late tonight.

Thanks for posts.

Sarah - you must have had such a worrying time. I just noticed that our boys have got 3 days between them.
Its great that he has now been discharged. Olly has no physical markers [that i know of] but many behavioural ones.

Robbo - Yes, will post some of the experiences we have had with Olly when I get chance and I can honestly say that his all began in-utero. I just thought that he had super-sonic hearing, but I now know that it was the over-sensory/under-sensory impairment showing itself. Olly has been diagnosed with this and it is a big marker for ASC, explaining many seemingly inexplicable behaviours. More, lots more, later...

As for your sweet boy, I don't know if a tramatic incident or bereavement can trigger underlying ASC. The Nat. Autism website is an absolute mine of unformation though. I have found it invaluable.

Got to go, as haven't eaten yet and big boy is causing another crisis at the mo., as his work laptop seems to be dying and he's kicking off about it.
There is just no peace to be had in our house - its very wearing.

Love Maryrose xxx

Robbo2 · 14 Mar 2007

Hi ladies

Just a quickie as preparing for my return to work and DS return to nursery tomorrow - oh joy! I'll be back tomorrow with more.

Sarah - I so feel for you and the year you have had. This is the kind of thing I mean. Although by the soudns of it your DS had "supposedly" physical signs. As for the behaviour on the day the HV visited - well you had a new baby which would surely throw DS out of sync for a while???? So glad everything turned out OK.

Maryrose - that's really interesting what you said about in-utero as I have never though anything of it before but I do now you've mentioned this. I remember going into a pub whilst about 6 months pregnant and DS started going absolutely mad - I just thought it was because the music was ear splittingly loud (probably was!). He also DID have a fear of fireworks although that's passed - but my mum used to and I have a friend that her son is very frightened of noise and closed and open spaces - but nothing has ever been said to her - he's coming upto 7years old?*! I know it is a big marker for ASC.

Hope Big DS has calmed a little! and Olly is a bit more settled with each day.

Be back tomorrow.

Robbo xx

maryrose · 04 Apr 2006

Robbo - How was your DS today, upon your return to work?

Mmmm... its all very difficult to interpret - for the 'experts' as well as us. These things, in isolation, are unremarkable. It is only when they exist in conjunction with many other markers, that bells start to ring.

Olly has the over-sensory/under-sensory thing in spades though. It causes so many behaviours. For example, he went to the childminders this a.m. and she said that she had had to scrub his hands, after outside play, as he insisted on touching and handling EVERYTHING in her garden. That is the sense of texture coming into play, you see.

Then, in our garden, a cockerel [a field away] crowed and he screamed and ran in. I never even registered the sound. That is the sense of sound over-firing.
Then we had to go out in the car and all the way there, he had to comment on everything he saw and so did we [we were under orders!].

You might read this and think that these things are common to all children, but if you saw the prevalence and other stuff in Olly, you would start to see that something was a little bit .... unusual.

Must go but got news! back when I can, love Maryrose xxx

Robbo2 · 14 Mar 2007

OOOOh now I'm intrigued! With news bit Smile

!

Mmmm - see what you mean about over sensitive hearing/touch thing. DS doesn't have anything like that but he does like certain adverts/songs that we have to listen to over and over again and certain programmes. Now these in themselves wouldn't have got me thinking as I know most children like to repeat a song or watch the same programme (most of my friends children do anyway?*! and I can't think that they would all be on the Autism Spectrum).

Really the things DS does are what we've made him - none of his behaviour has come natural except for the eagerness to do something properly and once he has set his mind to it there is no stopping him until he has mastered it! Once he has mastered it he sets off looking for a new challenge Smile

!

What's set me off are comments from his teacher. Not sure if you've read the othere posts I've written but a little bit of background (well a lot ha ha!). DS never went to nursery as a very young child as I only work 2.5 days a week and DP and my Mum & Dad had him. It was only as he got a little older and I thought he needed some social side of learning as most of my friends children were older and he spent most of his time with these or us and other adults that we started going to a play group - he would be just turned 2 at the time and we stayed with him. Then as he was to turn 3 in the October nursery offered him a place early but I refused as I feel that they are at school for long enough. Anyway never really had problems excpet DP is a pain for having to do everything with him/for him when they are together - I tend to let him get on with it a bit. Sooo when we now go to nursery he wants the attention of the adults - which is what he's used to. His teacher then started saying he was a loner (this is just as he's turned 3!) and tried to get him to mingle more. He did and was doing really well, started to like school even to the point that on his 4th birthday we took the day off to do something and he wanted to go to school Shocked

so of course he went. Now just before Christmas DP's mum took ill 4 days before we were due to fly to the USA. Docs confrmed we were better to go now than delay and let her condition worsen - particularly as they were going to try Chemo. So we went and half way through DP got a call to say she had deteriorated and wanted him home. Easier to get 1 home than 5 of us (my mum & dad were with us) so DP left us there and got home. This unsettled DS a little at night when daddy wasn;t there for bed but he was OK most of the time. MIL still with us when we got home but by this time DS has not seen her for about 3-4 weeks. We tried to build a story for him saying that her blood was really poorly etc etc but we couldn't go and see her (she was in isolation and TBH I didn't really want him to see her in the state she was in Sad

!). At this point DS started to get really clingy with who ever was looking after him - didn't like being left in car for us to go and pay for petrol for instance. Sadly the week before Christmas MIL passed away. We didn't tell DS straight away because of it being so close to Christmas and the fact that he hadn't seen her now for 7 weeks so we didn't think another week or so would hurt. We had the funeral which we didn't take DS to but we did take him to the wake and explained that Nana had died and this was a party to celebrate her life. He seemed fine but didn't really talk about her. We then had another elderly aunt taken into hospital and he whispered to me will Nana come out soon Sad

! I was on my way to work so just answered no we'll talk about it later - because I really wanted to have time to explain without having to rush off. So we chatted later and again he seemed OK

So fast forward after Christmas we then put his days up to 2 afternoons at Nursery and he seemed OK with this until mid Feb when he just went into a complete melt down (literally overnight!) that he didn't want to leave me he hated school cos I was leaving him and repeatedly asking if I would come back. Didn't want me to go to work etc - but this fixation was just around me no-one else. I couldn't even hang the washing on the line in the garden!!! I spoke with a councillor and she said he was just behaving in the exact way she would expect a grieving child to do and it would get worse - he would become frightened, aggressive have tantrums etc - before it got better. Well his normal TA at scool was off sick and they got the owner in to come and cover with his key worker and it was the owner of the nursery that asked for me to be spoken to. Apparently his key worker had left him to go to the loo and he had a real freak out banging on the toilet door etc etc. He had become withdrawn and wouldn't play with anyone. His teacher was telling him constantly to go and play with his "FRIENDS" but he said to me mum I don't like everyone in my class (this is a different story and will tell later!) Sooo I asked his teacher straight out why was she talking to me, she knew the problems did she think there was a problem other than grieving. She said she thought there was but the Owner of the Nursery didn't. So I said right I'll speak with her. Anyway the Owner said to me DS is an extremely bright child - which in itself brings problems for socialising as his peers will not stimulate him enough and hold his attention. He has interests way above his years - which are mainly sports! Anything to do with a ball and he can play it - and well for a 4 year old - most 4 year olds want to play with cars and the odd kick at football. She didn't think there was any real problem at the moment other than re-building the confidence with the things he seems to have lost and trying to find someone with a similar interest - which would be difficult at this young age. I totally agreed even to the point of going to the park. He has climbed things before he could walk and all of a sudden he couldn't do the Monkey Bar - which he had been doing last summer - getting on the first one and dropping off. Well we had a few tantrums about it till I just left him dangling there until he had to drop himself off. Once he'd done it his confidence seemed to come back in leaps and bounds in lots of other areas too strangely!

He is getting better in every aspect. Owner advised moving him from an afternoon session to mornings - I did and it's a different child coming out chattering about what he's been doing! When I asked what the difference was he said afternoons were boring - what can I say to that???

Had a bit of a strop this morning and was quite upset but apparently settled realy quickly - within minutes of entering the class and has had a whale of a time!

Sooo his abnormal behaviour is based around his social skills (I'm thinking Aspergers although that's not what they have said!!!). I agree he doesn't mix well with his peers - but I think this is something he has to learn having spent so much time with older people. I also think his teacher pushing the "FRIENDS" issue is making it a bigger issue to him cos he's now clicked onto it and saying I don't have any friends at school and I'm not goin to play with anyone - so where do I go from here??? Just hoping when he get's to school they can help him. We've tried having more play dates etc but it's still only really 1 on 1.

Phew - sorry for the mammoth post - have lots of other things that are based around his socialising problems - but again I think it's something his teacher should be helping him with and isn't! Which is really why I don't want a label of any kind putting to him until he's older and had chance to overcome the scoial problems of being an only child!

What started your doubts about Olly? Were they points that you saw when he was very tiny or is it something that has built recently within the last 18 months or so?

Thank you for reading if you're still with me Smile

!!!!

Robbo x

maryrose · 04 Apr 2006

Hi Robbo. Wow! How long did that take you to type? It would have taken me ages, lol!

Mmm... will read it again later and digest it, before replying. Your Ds sounds very different to Olly but the social interaction [or lack of] with other children, is something that they look for and I think if it still absent after about 3yrs, this is when child care professionals get a bit suspicious.

One way in which Olly is like your Ds is that he too is very happy to interact with adults and older children. He avoids contact with children his age and younger, if left to himself. GP said exactly the same thing as you were told - about bright children interacting on a different level to their peers, by the way.

Olly has been having one-to-one specifically to build his social skills with his nursery peers and it has made a massive difference.
He has gone from running as far away as possible from the other children and refusing to join in at group activities, [he would attack the other children if he was forced into close contact with them], to making friends with those he has known the longest, playing very nicely at imaginary games with them and joining in group activities.

More later, but another big indicator is the child's attitude to food. It can go either way in that they can be dreadfully fussy or eat everything in sight [Olly is the latter! Rolling Eyes

]

Back when I can to read all your post again, esp about the bereavement. Love Maryrose xxx

Robbo2 · 14 Mar 2007

Lol!!! at work at the mo so just had a quick read. Not long to type really but I'm a pa so typing is biggest part of my job Smile

!!!

maryrose · 04 Apr 2006

Robbo - I have had another good read of your post.

I only have my own experience to go on, with Master O. and extensive reading on the subject. Its very tricky as the condition manifests itself differently in every individual. That is why they are very wary of diagnosing too early.

When children are profoundly autistic, it is easy to diagnose. However, with 'high function' or Aspergers [the 2 terms are interchageable], it is really hard. I think the professionals are just as aware as we Mummies are, that it could be personality.
Where does personality stop and Autism start??? The 2 are completely intermeshed.

My experience with Olly is very different to yours. I will post comprehensively on this [in answer to your question] when i have chance] but he displayed characteristics of high function from birth - well, actually in-utero.

He was the most gorgeous, responsive, pleasant baby meeting milestones very early and talking very quickly, but he had these inexplicable irritable and aggressive phases which were almost like fits. In the early days, the only person I ever told was Maple [on this BB] - I couldn't understand what was going on and put it down to teething.
More on this later but irritability as a baby and refusal to be comforted is an early indicator.

With regard to your boy - his reaction does seem a little extreme and children with Aspergers are picked up because of their unusual sensitivity to stimuli/life events. On the other hand, there seems to be little other indicators, apart from his lack of socialisation with others his own age. As you say, this may be because you started late. Olly, on the other hand, had socialisation with same age from birth. By the time he could roll [11 wks], he was pulling hair of his peers!

Have you been to your GP and are they sympathetic? This should be your 1st port of call. I know that you are worried about labelling but I have found that all the professionals I have come across are conscious of this.

I am sure that Olly is significantly on the scale for ASC - a label is not a priority worry right now. Help in the classroom is! - and one to one help at as early a stage as possible is the best thing you can do to help your little man with social interaction. Seriously, you will not be labelled even when you want to be, to get help!

A Mummies instincts are very often good, I think. It did not take me very long to get over the shock and denial, lol. However, if you think that your boy is just sensitive and bright, you might want to think about a more sympathetic and helpful nursery environment for him. I changed with Olly and it was the best thing I ever did.

Lots love, Maryrose xxx

Robbo2 · 14 Mar 2007

Hi Maryrose

Oh my - didn't actually realise how much I'd written previously! Sorry to mombard you Rolling Eyes

!! It actually only took me about 40 mins to type but another 20 to make it all make sense Smile

!

Just out of curiosity what kind of things have they been doing with Olly at Nursery? I'm only asking as the Owner of the nursery said there were a number of things they could do to help build his confidence and social side but not sure if they are doing them as this is his first week back since I spoke with her. One thing that did make me feel a little better is that she didn't think there was a problem - YET! and her speciality is Special Needs so I'm really hoping she's right and we can help him.

See that's another thing he differs with Olly in cos anything group based and he is there like a shot. His teacher says he's not but whenever I've been anywhere with him he is. We went to a class party a few weeks ago and he knew no-one except the little girl whose party it was. He was really nervous about going away from me to begin with (but again most young children are in strange settings) but after about half an hour or so he started to have a walk around and got some food. As soon as the games came out he was on the floor like a shot!

As for food he likes what he likes and again as with most kids it's sometimes hard to get him to try new foods but he will and he does have a good appetite. Hadn't realised that was such a big marker.

I also know that children on the AS tend to have difficulties with co-ordination. Now this one is a bit baffling cos he can ride his bike but nothing like his little mate who whizzes around at a million miles an hour - DS doesn't and find it difficult but it's not something we've done a lot of - but give him a ball - whether it be catching it, kicking it, hitting it or bouncing it and he's amazing - so that's one that doesn't really follow. How's Olly's co-oridnation?

When you said you knew you needed help - what were the main areas you felt he needed help in?

As Sarah said they are still our beautiful children but life is so hard and what ever can be done to help make it easier the better.

I'm away tomorrow overnight but will be back Sunday.

Robbo xx

Robbo2 · 14 Mar 2007

Sorry - think posts crossed - will have a read later Smile

Robbo x

maryrose · 04 Apr 2006

Robbo - So many questions, so little time! Giggling!

Olly's co-ordination is pants and so is his Dad's. Ho hummm...
Olly is learning to ride a bike and he zooms around the front garden scooting with his feet, always in a clockwise direction. You ask him to go anti-clockwise and he simply cannot do it at all. His fine motor skills aren't great. We are having little tuition sessions on opening buttons at the mo. Doing them up would be a total no-no.
I take him out with me on jobs and he falls flat on his face at least once whilst we are out. He did it tonight, when we took our dog for a walk whilst his tea was in the oven. Its noticable.

At nursery, Olly has this lovely lady [trained SENCO] who has been encouraging him to join in. She gives him prompts with what to say to the other children, as she has spotted that he wants to engage but dies not know how to do it. she keeps the session at 2 or 3 and this works well.
He has a VISUAL TIMETABLE. So, when one activity ends and another starts, he has warning of this. This is a massive simplification on my part. Autistic children and adults are usually very visual. For example - if my Dh is asked for directions, he will draw a map whereas I would write down a list of directions.
They also have a problem with transition habitually and so there is trouble with one activity ending and another starting.

I would accept all the help that you can get. Don't be afraid to ask loads of hard-hitting questions. You should do.

Where we are now with Olly is a very different place to where we were 12 mnths ago. We have had some hard [and I do mean hard] times with certain behaviours. Happy to fill you in later. I think Olly is developing and compensating for these now, but I also think that we would have been in a very different place if I hadn't changed his nursery. OMG! I shudder to think - just remembered a couple of things from before then... He was wild.

Olly is going to our CDT once a week for assessment at the mo. 6 sessions and then some monitoring in childcare sessions. There are 3 other little boys all in the same group session and from talking to their Mums, I know that they all are suspected of having high function autism. At 1st, i could not see any parallels to Olly, but now - a month later, I can. They are all very different, but they have certain characteristics that are the same. its very interesting and comforting too. One in every 100 children are significantly on the scale, i believe.

Back soon. lots love XX

maryrose · 04 Apr 2006

Oh and something I forgot to say - re our beautiful children... I knwow that it sounds strange, but if you asked me if I wanted to change Olly, hand on heart, i can't say that I do.

He is the most characterful, interesting, bright and lively 4yr old. I absolutely adore him. Yes, he drives me nuts at times, but his personality is magnetic [and I am not the only one to say this]. His one to one workers love him and his quirky intelligence and the other children are attracted to him, despite his antisocial tendencies!

I honestly would not want him to change and I have very high hopes that the early intervention will mean that he does not suffer disadvantage.

XXX

Elizabeth hope · 20 Oct 2007

Hi Ladies

I hope this ok to pop on here. I read your posts with real interest as I went through a very similar time with D before Christmas and really sympathise with the issues around a nursery that couldn't cope with a child that has different and specific needs. We also have the LEA area Senco and thank god as things started to get better once she got involved.

The nursery kept telling me that they thought D was Autistic or had ADHD and to be honest he has some behaviours that would fit both. The most likely cause is Attachment issues which have been a result of his early life trauma. I have reached a point where people could tell me he was pink with blue spots...the name is irrelevant, his behaviour is his behaviour. It doesn't get worse with a name. In fact he gets better with more information as people have to embrace his differences. It makes it less traumatic for him.

I spoke to a friend last night...well actually I was doing a treatment on her and she has an autistic little boy, well he is 10 so a big boy I guess. Some of the stories she told me made me laugh so much because she is a perfect example of a Mummy who has really made the journey to accept her son. She enjoys his quirks. I could see so many things that D also does and things that DH and I have learned to laugh at. The laughter is only possible because at the moment I have managed to overcome some really negative stuff but I do get days when I just wish for one minute life could be easy...but if easy meant having someone other than my D...well....I will take hard and interesting!!

Maryrose, thank you for starting this thread and I hope I can pop on from time to time. My cousin has a little boy a year older than D and he is just going through some major assessments at school as he is almost certainly on the spectrum. He has some major poo issues and food issues. My poor cousin has had a difficult time with the family not understanding her challenges but this was made worse as everyone kept hinting that there may be some underlying problems and she asked the health visitor and they said he wasn't so it got left. As soon as he started school they picked it up but so much could have already been put in place.

There are so many people on the spectrum but it doesn't get picked up. DH says D is one of the lucky ones as he has me as his Mummy.....I knock down walls that are in his way.....I hope one day my son will knock down walls for other people.

Special needs...yeah....special qualities too though remember. All children have an element of both don't they?!

In respect of Olly getting worse if he is poorly.....I know if D is getting poorly because his behaviour dips for no reason and then a day later he gets ill and I end up saying 'Arh that explains it'. A Peadatrician told me his ADHD symptoms will be worse if he is constipated. He doesn't generally get it anymore but it was terrible when he was a baby. Keep up with movical.

Elizabeth
xx

sarah w · 26 Oct 2005

Hi ladies ,

I'm finding it so interesting reading this thread , it just goes to show life doesn't always go as smooth as you wish but i believe you learn how to deal best with your child in certain situations .

I'm sure lots of people will read this thread and certain things will seem familiar to them & their childs behaviour and i do wonder if some behaviours are "normal" maybe for that age group , i can def see many similarities in my son as to things that you have all mentioned

It's a shame people need to be labeled , but all the help can only be a good thing, enjoy your weekend ladies,

Sarah x

Maria xXx · 03 Jul 2006

Hello Ladies,

I hope itâ€™s ok to join in. Adam, our wonderful, funny and cheeky son 4y 10m, was dx with autism and verbal dyspraxia just over twelve months ago.
I will just tell you a bit about Adam, although Iâ€™m sorry if it turns into an essay.

We were aware that his speech was delayed but I can not say we were really worried as he was so bright and alert and was developing well in all other areas. I took Adam to baby sign classes when he was 18 months old, it wasnâ€™t really for the signing more for the social aspect for both Adam and myself.

I voiced my concerns about his lack of speech to my G.P. when Adam was around 20 months old. I was told not to worry until he got to two years and was still not talking.
So, the week of Adamâ€™s second birthday I took him back to the G.P.s to arrange a hearing test - just to rule out a hearing problem - and get an appointment with a S.A.L.T.

He passed the hearing test with flying colours - as expected. He had his first appointment with the S.A.L.T. when he was 2y 3m old and at that time he had just two signs thank you and sorry. She felt that it was just a speech delay and to give him more time. She also advised us to encourage the signing.

So we used a combination of Makaton, Baby Signs and made up signs, Adam very quickly got the hang of it and in just a few months Adam had over 50 signs that he was using consistently and appropriately.

We had considered the possibility of autism â€“ if you Google â€œdelayed speechâ€ autism is the most common thing that comes up.

So at 2y 10m, Adam attended another hearing test appointment, the doctor stated that Adam has exceptionally good hearing and when he started to ask me questions about lining up toys, rigid thinking and intolerance of change in routine, I realised what he was thinking.
I asked if he was considering autism, he said that he felt there was enough cause for concern for him to refer Adam to C.D.C.

So he was first seen by the consultant pead when he was almost 3y, during that appointment, after 10mins she looked at me and said she was sure that Adam was not autistic. But after an hour and half assessment she changed her mind and felt there was defiantly something more than the lack of speech.

So we had the formal assessments and the result was the diagnosis of autism and verbal dyspraxia when he was 3y 9m old.

That meeting was horrible, even though you try to prepare yourself it still knocks you for six.

In terms of getting extra support, getting a dx was the best thing for Adam. In fact at the very beginning, when we were first referred to the C.D.C. I found the amount of support overwhelming, we had a special needs HV, Portage and speech therapy. They all contacted me within days of the initial app and I felt I needed time to deal with the possibility of there being something â€œwrongâ€ with my beautiful boy.

But Portage were fantastic as was the SN HV, who I can phone for advice any time and she is always happy to call round if I need advice or support.

So last September, after many, many sleepless night and tears (by me) I sent my baby to big school - no speech, still in nappies, only just drinking from an open cup, could not deal with sudden loud noise, very rigid and uncompromising and no social skills - he basically avoided all children. In nursery he stayed in the quiet room and if too many other children had the cheek to enter he would leave and go into the garden.

But he is now a very happy schoolboy

He is talking Shocked

He started in Nov last year and is now a chatterbox Very Happy

his speech is unclear and you have to "tune in" to it. But it really was like someone flicked a switch Very Happy

He is out of daytime nappies, happened at the same time as the speech.

He is still rigid and uncompromising but that is Adam Very Happy

And in his home/school communication book, they wrote on Friday, that "Adam had loved playing outside with the footballs and he had made a friend called Anthony, and they had kicked a ball back and forth to each other" - I don't know Anthony but I love him Very Happy

Sorry I thought I would end up writing loads, well done if you got to the end Wink

Maria xXx

sarah w · 26 Oct 2005

Maria ,

What a heart warming message , It sounds like you've had a hell of a time , but its so good to hear that things are def improved massively . Those app are killers all our were a hour & half , i always came away feeling so drained & emotional .

It good to hear that your DS move to school has been such a positive move as ours are all going to school this Sept , & it is such a worrying time .

Hope things continue to improve for him,

Sarah x

maryrose · 04 Apr 2006

Maria - I nearly cried when I read your post.
Lovely to hear from you and I just welled up when i got to where you wrote that Adam is talking.
That must have been the best moment ever.

I envy you getting a diagnosis! That sounds mad, to people who aren't in our position, but I know how much it helps.
I am not sure that we ever will, with Olly, even though I know he has ASC. When speech is not a problem it seems to confound the issue, even though precocious speech is an indicator. Olly has this in that he can talk in a very articulate fashion of things that small children would not normally be expected to have knowledge of.

The very good news I have though, is that having seen him in action last week, the SEN for our region has done a volte face and decided to overturn her decision not to apply for IPF until he starts school.
We are now applying for his last term at pre-school and I tell you, I am relieved!

I seem to have by-passed the denial and upset phase. Or it was very short-lived. Not sure why - I am just accepting of the issues and want the help for my lovely boy.

Love Maryrose xxx

Robbo2 · 14 Mar 2007

Hi ladies

Welcome Elizabeth & Maria - great of you to share your stories. It would be great to get your opinions and also hear how your little ones are doing etc so please keep visiting the thread that Maryrose has so kindly started Smile

! Bet she's wishing she hadn't bothered after all my questions - lol!

Maria - I remember reading some of your posts when you first posted about Adam and Autism. Great to see things are coming on in leaps and bounds for him (and you).

Elizabeth - Can totally understand the anxiety issues with your DS - I think this is what's kick started my DS's problems.

I've literally just got in from a weekend away and had a quick read but really want to read them in more detail before I make comments/ask questions - as Sarah says as you read these messages I'm sure everyone who has a child can relate on some level to almost everything on here. I know many of my friends with little one's would be able to.

Maryrose - have lots to say (ha ha as normal I hear you thinking Smile

!) and will post later in the week - probably Tuesday as I'm by myself as DP will be working. I did want to say that I haven't really done anything about DS as yet cos it really only just kicked off early to mid Feb - so literally only 5 or 6 weeks max so I haven't consulted with GP or anything as yet. It is early days and as you say I'm still unsure because it is so early as to whether he is just a bright and sensitive soul or there is a problem! However I don't want to be a mum in denial cos if he needs help then the sooner the better in getting it for him. It's not so much as NOT wanting to put a label to any problem with him (or any other child) it's more about the fact that we are scrutinising our kids so much before we are allowing them to even move on from babyhood - IYKWIM. Like you knew there were problems with Olly and Maria knew there were problems with Adam much earlier but with DS it's kind of only just started and following a bereavement. The bereavement councillor says his behaviour is what she would expect from a grieving child - so I'm just wary of going down any other route too soon. Also as Sarah says is some of it just an "Ages & Stages" thing? Many of my friends are having similar issues with their 4 years olds - just not on such a grand scale.

Right really must be off - need a bath and bed so will be back later.

Hope everyone had a good weekend. And as for changing my DS - I wouldn't change a hair on his head - he's the most precious beautiful little boy ever. And funny you should say about Olly's personality being magnetic Maryrose cos DS's teacher has said everyone is drawn to DS in his class (he's just not too impressed with them!) and the teaching staff think he's amazing.

Be back soon.

Robbo x

maryrose · 04 Apr 2006

Robbo - re your 1st paragraph - hope you are joking. I started it for you!
Questions are good, that is how we learn. I hoped other ladies would be helped by my experience as I had to start from scratch when it all kicked off last summer. I knew nothing about the condition.
And for others like me, who are a little further down the line, putting things down in writing also makes it more coherent in the mind. So helpful all round. Very Happy

How funny that your boy and my boy seem to get the same reaction from others.
Olly does love his one-to-one lady in pre-school though. So do I! She's fab.

speak soon ladies, Maryrose xxx

Maria xXx · 03 Jul 2006

Hello everyone,

You were talking about sensitive hearing, Adam has exceptionally good hearing and is sensitive to loud
- especially sudden/unexpected loud noise. But as he has gotten older he has learnt to deal with it and rarely gets distressed now.

As a baby he would become hysterical at the hoover or hair-dryer but as he got old enough to crawl away he could cope with it. Nowadays I will still warn him that I'm about to hoover and he will shut the door and stick his fingers in his ears.

In fact he will now put his fingers in his ears if thinks something may become too loud, so if he is prepared he generally is OK, he will still scream at a sudden loud noise though.

We try not to avoid situations that may upset him, for example we go to air-shows which can be very loud. As a baby Adam was fine, the noise didn't worry him, but as he got older he became more sensitive to it and chose to stay in the car during the show , last year aged 4 he happily watched the show with his fingers in his ears Very Happy

As for Olly getting dirty, I remember a photo of him filling his pushchair with soil Very Happy

Adam would never do that Rolling Eyes

he hates getting dirty, wet or sticky.

I agree that mummies instincts are often right and I found it very frustrating when, well meaning, people (my mum Rolling Eyes

) would say "well all children do that!" and you know what your child is doing is on a whole other level.

Maryrose I will be back later to tell you a bit about our newly discovered family links to autism - and yes, I'm looking at you DH Very Happy

Maria xXx

maryrose · 04 Apr 2006

Maria - I hope you don't mean that you are related to my dh???!!! Shocked

Back in a bit... Olly being a trial - his bedroom is hot [25+ degrees] but he doesn't like the noise of the fan. Over-sensitive hearing again. Rolling Eyes

Oh and Olly LOVES to get as messy as possible. I agree the mess aversion is more common, but Olly seems to love the feeling of texture.

What a day! More later. Bl**dy forms, meetings, phonecalls, appointments ... don't know how I am meant to find time to work!

Love Maryrose xxx

Robbo2 · 14 Mar 2007

Hi ladies

Hope this comes through ok as having major probs login into bb so am on fone - apols for typing!!!

Just wanted to say yes Maryrose - I was joking. Hope i didnt offend you- I always appreciate it when someone takes the time to share their experiences or answer questons. I hope the thread helps us all as I'm sure it will Smile

! Hope Olly has calmed down and got settled for the night.
Maria - my ds used to hate the hpover and we still warm him but he seems ok with it now. The other thing was fireworks but again seems to have got over it. So is this a As marker or an ages and stages thing again? Nothing else noise wise appears to upset him and will have radio as loud as possible!!!

Ds doesnt like getting too sticky but depends wot it is!!!

Will be back wjen i can get on pc!

Robbo x

Loui5e · 21 Oct 2004

Hi girls,

So sorry you are having to through this with your beautiful children, thank goodness they have such fab mums fighting their corner.
Can I ask your advise? Milo has always been a very challenging boy, from the minute he was born he came out with the loudest scream and hasn't stopped!
His behaviour is very challenging he is very clingy to me I have to do everything if he gets in bed with us he will only lie with me and I have to face him and our heads touch. He goes mad if Finn gets in bed screaming he doesn't want him near him or me, Finn can't be anywhere near him.
He screams if he can't get or do something and I mean screams, it's silly things it's like he can't control his emotions. I try to calm him and say no screaming if you want something ask mummy to pass it to you.
When he has a bad screaming fit it can last 1/2 hour and he just screams and screams repeating the thing he has objected to eg don't want my face clean. You have to just wait for him to calm down then as quick as he has had his screaming session he has run off laughing happy as larry.
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 all sounds really bad which to be fair it is but we just get on with it, everyone around him knows how he is.

On the other hand he is wonderful, has lots of friends plays nicely will share, speech brilliant motor skills very good, toilet trained at 2y4m sleeps well eats well.

I have always thought something was not quite right with him but don't want to label him if it's just his personality and he will grow out of it and learn to control his emotions. He is coming up to 3 in April and the school I want him to go to is a private quite full on academic school. I'm now thinking is this the right environment for him? (Finn goes there) he is at a private school nursery and has been doing well crys when going in but is fine after a minute. They have only had 1 major episode with him when they were going into a big playground and he flipped out screaming and repeating don't want to go in big playground. I think I know why this happened as it's the school car park at drop off and pick up they then lock the gates for the children to play in, I'm always saying stay close to mummy there are cars and I think he thought there were cars and was scared.

I welcome your honest opinion please say what you think, where do I go from here? We need to move forward as it's so draining I have always said milo should have been a first born or only child, we have now stopped trying for another baby as I don't think we or milo could cope.

Louise x

God that feels good getting it down