Newbie / lurker

[rocketgob]

Hi all

 

I have been lurking here for a while - not sure really how to put this all in a post without boring you all to death LOL!!

 

I am Sarah and I have 3 children but its my 2 year old, Charlie, that is my main concern at the moment. Charlie has had us concerned since he was 13 months old and we have been basically told not to be so silly / its the 2's / its because you are pregnant / its because you have had a baby amongst other things by our previous health authority . However, we moved in July to a totally different area and by end of October Charlie was giving our new HV reason to think he may have Aspergers - his speech is very advanced for his age but he doesn't live in the same time zone / planet as us, he is permanently in a fantasy world, he does not make eye contact at all, he has very bad violent tantrums, he is destructive (managed to pull out the secondary double glazing in his bedroom , he parallel plays with other children, he has no sense of pain and shows no emotion other than anger. He also has obsessions with Thomas , clocks , lights , fans and many other things which I know you have all seen / heard before. My HV has now referred him to a child counsellor only to have her letter thrown back and to be told that he should be going direct to a paediatrician so that is what we are waiting for.

 

He starts pre-school in January and I really need advice - should I tell them he is "in the system" already or should I go with the flow so to speak - I don't want this to sound wrong but I don't want him being treated like a bad child if he does have a problem. Also how many months / years has it taken people to get a dx?

 

Sorry for the garbled post - hopefully it makes sense

 

Sarah x

[rocketgob]

Forgot to add - Charlie will be 3 at Xmas ...

[Eva]

Hi Sarah,

 

welcome!

 

I have a 6 year old son with AS and remember the two's well...

 

Things do get easier with time, (I'll never forget the day my son said Thomas TT was 'boring', yay).

 

I don't have any advice but lots of people on here will help, I'm sure! Personally, I found that having a dx has helped in terms of getting (some) help and understanding he needs at school.

 

Eva

[Nic m]

Hi rocketgob, don't have any advice for you but i wish you luck. there are a few people on here with younger children who may have some advice to offer.

Nic

[Clare63]

Hi Sarah and a very warm welcome to the forum.

I think the earlier the dx the better, as Eva says it certainly get you help and mo0re understanding with school. I don't have much experience regarding young children and diagnosis as my son was only dx'd this year at the age of 11 yrs. Every child is different and you as Mum know your child best and with two others you can obviously see the difference.

Good luck and I hope you get as much out of this forum as I do.

Clare x x x

[rocketgob]

Thank you all of you for the welcome and advice!

 

x

[stressedmumto2]

Hi Sarah,

 

I would have to agree that the earlier people know that your child may be on the spectrum the better it will be for him.

 

I remember my son at pre-school, he was hard work but as soon as out-reach etc became involved the pre-school wanted to work with him rather than throw him out which was on the agenda, suprisingly with the help of medication he started to settle, he also has adhd and in some ways I wish now we never medicated him them as his main problems i.e. becoming aggresive then seemed to dissapear!! and the pre-school as did school didn't notice the other things.

 

Our h/v was involved to and was the first to pick up the ASD.

 

We arrived at a very late dx because he's quite complex and so sometimes the help we've had has not been appropiate and the understanding hasn't always been there. I think things do get easier as they get older as do some things get harder but they're changing all the time.

 

I think the h/v is a good strating point can she refer you on to anybody else?

 

<'> <'>

[sesley]

my son showed signs at 2 as well,we didn't know what they were, he was in toddlers he thought it great sport to knock over babys in the cozy Coupe car and when the cryed he just stared at them without any look of regret or concern,when i told him off he wouldn't look at me and repeated the offense as soon as possible, his speech was script lines from Bob the Builder ,in playgroup, he wouldn't do anything he was told and just wandered around,also he was still in nappys' so i took him out to wait to after christmas and to try to get him out of nappys' in the end i was in ters with the health visitor assesement checkups and she refered me to a speech and language thearpist,who refered me to a paedatrtion who eventually refered to child phsycoligist consultant,who diagnose him ASD at 4 . so what i am going to say,is if your gut feeling something is not right,with your son's developement start banging on your health visitor/GP'd door now, the earlier you get assesement from a child physcoligist the earlier you can get the right support for your son and your family.now he is 8 the difference of the knowledge of ASD and the support from the Education authourities have enabled him to progress and develope better, even though he has his challenges. The big key to ASD/Aspergers is early detection.

[rocketgob]

my son showed signs at 2 as well,we didn't know what they were, he was in toddlers he thought it great sport to knock over babys in the cozy Coupe car and when the cryed he just stared at them without any look of regret or concern,when i told him off he wouldn't look at me and repeated the offense as soon as possible, his speech was script lines from Bob the Builder ,in playgroup, he wouldn't do anything he was told and just wandered around,also he was still in nappys' so i took him out to wait to after christmas and to try to get him out of nappys' in the end i was in ters with the health visitor assesement checkups and she refered me to a speech and language thearpist,who refered me to a paedatrtion who eventually refered to child phsycoligist consultant,who diagnose him ASD at 4 . so what i am going to say,is if your gut feeling something is not right,with your son's developement start banging on your health visitor/GP'd door now, the earlier you get assesement from a child physcoligist the earlier you can get the right support for your son and your family.now he is 8 the difference of the knowledge of ASD and the support from the Education authourities have enabled him to progress and develope better, even though he has his challenges. The big key to ASD/Aspergers is early detection.

 

 

That sounds really like Charlie - he is really strange with his baby sister, he almost seems to enjoy seeing her cry when he takes toys away from her or hits her (she is only 9 months old). Also he is still in pull ups and has no want to use the potty / toilet - I have tried but he just freaks out and starts talking non-stop (I think maybe a meltdown - he recites things over and over again). As for telling him no - he will either totally ignore or have a full blown paddy - kicking screaming headbutting - all usually objects not people LOL and then go back again to do what he was doing!

 

Also I forgot to say has anyone here come across heightened sense of smell in AS people? Charlie is really sensitive to smells - he can smell stuff no one else can in our house! And he also doesnt like noises - when I take my other DS to school on a morning - Charlie will go and stand in the furthest corner away in the playground with his hands over his ears just staring at all the children running around.

 

We are waiting for a paediatric appointment - my HV has already done the referral so hopefully we should hear something in the New Year, we have been waiting since the end of October for an appointment so far. When I went to the GP originally he sent me back to the HV as he "doesn't deal with pre-schoolers for behavioural problems" !!!

[Confusedmum]

Hi Rocketgob,

 

My little girl has recently been given a Dx of AS, just before her 5th birthday at the time of her assessment our pead actually said that the age of 5 is a young age for a child to be given a Dx of aspergers. However that doesnt mean that he would fit the spectrum. I just think that at the age of 2/3 it would probably be very difficult to cover the triad of impairments for a DX of AS, especially with social interaction. However that doesnt mean that they wouldnt give him a Dx of ASD. Again as others have said the earlier a child get a Dx the better. But in our case its only really now that DD has started school that we have found that she has needed it.

 

DDs pre school were absolutley amazing !! and to be honest if it wasnt for them i would have lost the plot along time ago, lol. Personally i think i would go into the nursery and have a word with them, Ask them if they have must experiance of working with children on the spectrum, as even though your son is still very young you may find that by treating him as though he has ASD may well help him loads.

 

As regards to having a heightened senses yes my DD definatley dose she cannot stand loud mechanical sound such as the hoover, washing machine ect, sense of smell well that also quite funny as she actually smells most things as soon as she picks them up clothes, toys ALL food, paper EVERYTHING, lol.

[rocketgob]

LOL - Charlie sniffs his clothes and toys too and as for meal times , well they are a nightmare - unless its white he wont eat it and he has to sniff every mouthfull!

[Clare63]

LOL - Charlie sniffs his clothes and toys too and as for meal times , well they are a nightmare - unless its white he wont eat it and he has to sniff every mouthfull!

 

My lad has a very high sense of smell (if that's the right way to phase it LOL) and can smell all sorts of things we can't, however think I might be a bit strange coz I will often smell food before I taste it, if I don't like the smell I won't put it in my mouth !!!

 

Clare x x x

[Karen A]

Hi rocketgob. <'> <'> I love the user name.

I have Ben who is 9.Ben has DCD [Dyspraxia] with Social Communication Difficulties [some AS but not enough for clear Dx].

Your descriptions also brought back lots of memories.Ben had very advanced language skills too. Karen.

[JsMum]

Hello and welcome, after reading your post I have a few suggestions and supportive advice if you would like it,

 

If there is any chance of you attending any ASD/AS Parent support group try and attend a couple of sesions as these are really supportive in the early stages and there will be parents who have been there and worn the T Shirt so to speak and may come up with some great ideas, that I always find are creative and in the eyes of the child.

 

I suspect that bad behaviour most part of very young/children is there way of communicating, expressing and reactive reasons.

 

A lot of it for J is defo sensory related so noise, smells, touch are all triggers and a cause for hightened anxieties, and reactive responces.

 

A brilliant book I read and now understand is The out of Syncs child.

 

As for preschool you could start to collect information on early years action. A special needs process of children who have a number of difficulties including social and behavioural issues.

 

I recommend ACE and look throw the Early years Action, there is possiblity that he would start on early action plus as there is outside agengies involved.

 

Advisory Centre of Education. http://www.ace-ed.org.uk/advice/booklets/EarlyYears.html

 

Then apply for a statement when he transfers to reception/year 1 of Primary school.

 

I got a lot of support and information from NAS and I have found the courses a real oportunity to undestand how the world is for J and other children who experience similair situation.

 

I got a comprehensive information pack and I started to do things like visual displays, picture and symbol support to help with routines, planning and organisaing time, equiptment.

 

I would defo talk to the preschool and have it in a report that you have concerns of social interaction, play, exspected behavioural issues, and note down anything that you feel the pre school need to do.

 

Social classes, councilling, supervision, assistance, behavioural support, visual support ect....

 

It is going to be very crucial to get the support correct in the early days so there is no mis-understanding, mismanagement doesnt cause the bad behaviour to become an emotional and behavioural issue which could lead to harsh punishmen and made to feel ashamed of acts they obvously have no control over because of a undiagnosed AS/ or other Special need.

 

I keep regular records of his behaviour or record significant issues.

 

He is defo going to need some support in preschool if he is struggling already in play group and he is struggling with other children and his actions are beginning to get him into trouble, what ever the diagnosis is he clearly needs support and understanding.

 

I have a few more recommended places for extra support with practical support too.

 

 

contact a family

homestart

surestart

kids

disabiltiy childrens groups/activity

 

Good Luck for the next part of your journey, let us know how it goes and you are always welcome to ask any further queries.

 

JsMum

Edited November 26, 2007 by JsMum

[westie]

Hi, I would recommend phoning the school in question and asking for a meeting/ phone conversation with head teacher there and see what they think. My son was kicked out of a private nursery and I voluntarily withdrew him from another playgroup as his behaviour was extreme (towards others, biting a lot though other behaviours which were "odd"). I had put his name down for local nursery and before he was due (and a few months after concerns had been highlighted to HV, at age 2.5yrs) I was worried about sending him with no warning. An very nice and wonderful early years special needs teacher gave me some important and useful advice: to phone the head and see what they thought, and to write to LEA and ask for assessment for Statement of special educational needs. After discussing with head she told me that they would not accept him voluntarily without a statement as his needs were complex (at a certain age they have to accept him into some school but if he had been without the needs I think he could have gone there earlier than reception year). I did write,to LEA to request an assessment for him and the early years teacher supported me in my application by also emailing LEA in support and they did and assessment and he has been statemented from reception and ever since (and he does need this support). I am not sure whether your child does need this level of support or if you are not sure yet but I think it would be beneficial to contact them before as they too may suggest you ask for assessment or perhaps something else may come up that would be of benefit such as being introducted earlier/ more gradual when time comes for attendance.

My youngest son (2.5) is currently being assessed and they think he may be on spectrum. The paediatrician mentioned enhanced provision nurseries and the like if he is diagnosed - never got that first time round so was appreciative of suggestion although like I said this lady in particular and the schools have been in the main very supportive regarding J, and remain so.

Take care

D

Edited November 26, 2007 by westie

[LizC]

my son showed signs at 2 as well,we didn't know what they were, he was in toddlers he thought it great sport to knock over babys in the cozy Coupe car and when the cryed he just stared at them without any look of regret or concern,when i told him off he wouldn't look at me and repeated the offense as soon as possible, his speech was script lines from Bob the Builder ,in playgroup, he wouldn't do anything he was told and just wandered around,also he was still in nappys' so i took him out to wait to after christmas and to try to get him out of nappys' in the end i was in ters with the health visitor assesement checkups and she refered me to a speech and language thearpist,who refered me to a paedatrtion who eventually refered to child phsycoligist consultant,who diagnose him ASD at 4 . so what i am going to say,is if your gut feeling something is not right,with your son's developement start banging on your health visitor/GP'd door now, the earlier you get assesement from a child physcoligist the earlier you can get the right support for your son and your family.now he is 8 the difference of the knowledge of ASD and the support from the Education authourities have enabled him to progress and develope better, even though he has his challenges. The big key to ASD/Aspergers is early detection.

 

Hi I just wanted to add that my son now 7 was also like that at toddlers group at 2/3. he used to knock cozy coupe cars over too, others mums called him a bully!

 

 

anyway My son who is 7 was dx with Aspergers at just over 5. I took him to the gp when he was 4 1/2 and got him referred to a child and adult mental health team. we had the same right from birth really we noticed he was different but HVs didn't want to know, said it was behaviour etc will get better (and I was having my third at the time too ) anyway he was dx over a 13 week assessment, so it didn't take too long to get his dx, one we knew he had (and just recently dx with adhd) all of places won't dx till around 5 though, but I wish you all the luck in getting help for your son! we always found it hard through school too, he was in mainstream until recently. it was hard getting people to listen and help at his school. he is now in a special school and doing much better!

Edited November 27, 2007 by LizC