I'm new

[CWP]

Hi everyone,

 

This is my first post on the forum. My son is 5 years old. At his first nursery his teachers treated him as naughty. They would report on him every day, often in fornt of him. the final straw was last Christmas when I was told in fornt of him that he was 'just terrible'. He never went back there. I always new something wasn't right. He has always been 'over sensitive' and cried and thrown tantrums in social situations. I asssumed he'd grow out of it but he never has. He has had two periods of time where he couldn't walk. One at eighteen months and one at 3 and 1/2. He was referred everywhere. They checked for arthirtis and muscular distrophy (very deistressing when I had another son a few months old). Every test came back negative and the behavioral issues were swept asside due to his age. Dyspraxia was also mentioned but then ruled out Eventually he joined another nursery who were worth their weight in gold. They very accurately highlighted his problem areas, in particular social development. On the plus side they kept saying he was very clever. He has been at school four months now. For the first time a few weeks ago his teacher menitoned Aspergers. I didn't even know what it was. As soon as I started investigating it was like someone switched a light on. He can't understand not winning and hates anything 'not nice'. He plays with other children but doesn't 'make friends' as such. He throws tantrums in school when things don't go as he expected. I have to explain the days events as he gets stressed with the unexpected. Today he watched 'The Grinch' and is absolutely traumatised. Hes been up with nightmares every half hour. He takes things so literally and hates anyone breaking the rules. He reports on children at school who don't finish their lunch before eating their treat. He thinks everyone who bumps in to him is deliberately hurting him. If something doesn't go the way he expected he loses it so much he starts finding fault in everything until he is inconsolable. He is obsessed with the clock and numbers. He was in P1 a week and writing 1- 100 on his blackboard in perfect order. Everything is about numbers. He is trying to lean the 24 hour clock. He is very clumsy and since the times when he couldn't walk continues to have an 'awkward' walk. He can't hop or skip or catch a ball. He absolutely hates being upside down or any sense where his balance is challenged. He only recently agreed to go on swings when his two year old brother did it but still he has to be in charge of how high - and its not very. As I said we are only in very early stages of acknowledgement of the concerns we've had for years but any advice or recognition of symptoms would be welcome.

[sunsmile]

Im really new on here too, but I found myself nodding in recognition all almost all the way through your post!

S is 10 Aspergers, hypermobility, and dyspraxic too.

He was diagnosed at seven and although we *knew* the moment we were told my DOH and I went into a weird controlled freefall. We landed safely though!

Like I said Im new too but this seems like a safe place full of knowledge, wisdom and wit.

Hang on in there

sun

 

 

[ScienceGeek]

Welcome to the forum

[Kathryn]

Welcome to the forum, CWP. I hope it becomes a good source of information and help to you in the process of finding out more about your son.

 

My daughter (19 diagnosed with AS) had similar problems with physical coordination and balance when she was that age and seemed to reach all the physical milestones really late, catching a ball, skipping, riding a bike. Handwriting was always difficult. At 16 she was diagnosed with hypermobility - I don't think there's a proven link but it often seems to occur with AS.

 

It's good to keep a diary and record any concerns about your son - it's useful if at some point in the future you decide you want to go down the route of assessment and diagnosis.

 

K x

 

 

[skye]

WOW that post could have been written by me! My daughter was moved from the first nursery because the teachers constantly talked about my daughter and in front of all the other parents too. They acted like she was the only naughty kid to ever be in their classroom. She did a lot of biting, smacking etc. They never once offered any support and I begged for some advise or anything. I even met with the head who was no help. The last draw was when they said "if she continues behaving like this the other kids are not going to want to know her!" She was 3 and they basically told me she was going to have no friends there. I couldn't believe it. Luckily the new school was great and the SENCO is helping with all of the assessments and everything. My daughter sounds almost exactly like your son. She suffers from sever nightmares. She once woke up with a nightmare because she couldn't count to 100 only 40 at 4 years old. So I had to teach her the rest of the numbers. She loves math and adds and subtracts. She loves patterns and lining things up. She walks on tiptoes and has bad motor skills. She attacks kids at school for rule breaking. She cries and has nightmares about silly films and social situations. She is really literal. I once called her "chicken" she said if I continued calling her that she was going to have to start laying eggs! LOL We are currently in the middle of diagnosis. Your son sounds so much like my daughter. She scored very very high on the GADS which is given by the Educational Psychologists and was referred to CAMHS where she has already been to initial assessment. I have no doubt she will receive a diagnosis. Normally I am very careful about what I say to people when they are not sure and haven't started assessment but I could not believe how similar our stories are. Feel free to message me if you like. It would be interesting to talk further. -Skye

[NickyB]

Hello and welcome

 

My son's nursery school were fantastic with him - one of the staff was trained in special needs and she was actually the first professional who voiced concerns about him. She was the one who referred him to the specialist and we got a diagnosis of high-functioning autism from there. It made such a huge difference for someone to say what we had been feeling for some time - and we will be forever grateful to her

 

Because of the early diagnosis, the transition from nursery to school was well managed and he's now in year 1. Things have not been at all easy at school but they have a wealth of knowledge about him and bundles of patience. I'm not always happy with how they deal with things but they will always listen to us and take in all that we say. That's probably the thing I would always advise - keep talking to the school and if you're not happy about something, let them know.

 

Almost everything you've said about your boy sounds like it could be my son - especially the obsession with numbers and clocks!! We have to make extra time when we walk anywhere because he stops at every house to look at the number

 

I hope you find this forum useful and supportive - I certainly have

 

Nicky <'>

[pearl]

Hi & welcome

[CWP]

Thanks everyone for your wlecomes and for your replies.

 

Skye it does sound like our stories are very similar. I was also told at the first nursery that noone would want to play with my son if he didn't stop crying. This was always down to frustration if he couldn't do something or they didn't let him join in exactly the way he wanted to join in. The thing is the head there had lots of experience but they sometimes said it was a 'learned behaviour'. Towards the end they actually blamed it on me because I worked part time and it 'wasn't healthy' to have his grandmothers watching him. They suggested it was somebodies fault for 'letting him away with it'.

For Christmas we got him some maths books where he can do addition, subtraction, division and multiplication and he loves it. He has never done these things at school and yet got it straight away. He made very few mistakes. He came off the bus a few weeks ago furious that someone new a higher number than him he cried for hours so we taught him about infinity and he went to school the next day delighted!

 

Does your daughter struggle to understand the concept of jokes? He spent time with his cousin on Boxing Day and was trying to tell her jokes and do silly things to make her laugh. When she didn't he cried so hard and was screaming for me. I removed him from the situation and he said he can't make anyone laugh and now his cousin doesn't like him anymore. I know he takes things this way at school too.

 

What are SENCO, GADS and CAHMS?

[skye]

Hello again,

 

Sorry I didn't realize that you were not currently involved with your SENCO etc. SENCO is the special education needs officer at your school. I assume that there is one in every school, I may be wrong about this? My SENCO is also the year 1 teacher in our school. You need to speak to your head and find out who your SENCO is and speak to them as they can refer you to the Educational Psychologist who are partly responsible for helping with getting a diagnosis. At least in my area this is the way it works. Failing that you can also go to your GP who should be able to refer you onto someone. My GP referred me directly to CAMHS. CAMHS is a child mental health service. This is who can actually give a diagnosis. The GADS test is the Gilliam Asperger Disorder Scale. It is just a series of questions to find out how high on the scale your child may be and if they then need further assessment. I am sure things are probably done differently all over the country so this may not be the same route that you will go down. It sounds to me that your son will score fairly high on the scale. They also test the school, so there is sometimes a worry that the school won't see the same as you but it turned out for me that the school's score was almost as high as mine and well over the threshold. It may be a good idea to get the SENCO on side and discuss a lot of the things your some does so that it will be fresh in their minds as well. I took my SENCO to the appointment so that she could fill out the school's portion of the test. It is a bit stressful knowing something is wrong and fearing because of past experiences that they won't see things the same as you. I know a lot of people on this forum have experienced that but I have been lucky so far(knock wood) and everyone seems to be on the same page as me. Saying that the diagnosis isn't due to actually come through until June, so maybe I should comment about it after then. When the penny dropped for me, after the family support worked mentioned AS I was unstoppable. I had always known something was different about Lib and now I had a name for it and some hope of getting the proper type of support. I rang every number and spoke to every person I could. I started at the school nurse. I called the Educational Psychologist directly and spoke to them although I still needed a referral at least I made them aware of my daughter and our issues. I called a man who works with Autistic Spectrum at CAMHS and explained things to him. I found out about and talked to the SENCO who then referred me on. I went to the GP who referred me onto CAMHS. I am a majorly squeaky wheel and I was not going to continue to let her school and everyone else put the blame for Liberty's unsociable behaviour on me anymore! I was not going to attend yet another parenting course that gave me a ton of advise that didn't even bother or pertain to my child at all. Sorry I am getting a bit wound up!!!! So if you need any help at all you get in touch with me via a private message or something, better still post here there are a lot of parents who can understand and have their own stories to tell. OK!

Jokes, HAHAHA Lib tells jokes that aren't jokes and then really laughs over the top about it. Like "why did the chicken cross the road? because he wanted to go across it" HAHAHAHAHAHHAHHHAHHHAHA I am like whatever dude!! LOL She really likes slapstick humour like on kids shows or who's been framed or people's funniest animals and shows like that. She laughs at those so hard she gets hiccups! People don't really pay attention to her jokes and kids just kinda look at her and walk away, poor thing. She thinks she is like Fozzie Bear "wacka wacka" LOL

[CWP]

Hello again,

 

Sorry I didn't realize that you were not currently involved with your SENCO etc. SENCO is the special education needs officer at your school. I assume that there is one in every school, I may be wrong about this? My SENCO is also the year 1 teacher in our school. You need to speak to your head and find out who your SENCO is and speak to them as they can refer you to the Educational Psychologist who are partly responsible for helping with getting a diagnosis. At least in my area this is the way it works. Failing that you can also go to your GP who should be able to refer you onto someone. My GP referred me directly to CAMHS. CAMHS is a child mental health service. This is who can actually give a diagnosis. The GADS test is the Gilliam Asperger Disorder Scale. It is just a series of questions to find out how high on the scale your child may be and if they then need further assessment. I am sure things are probably done differently all over the country so this may not be the same route that you will go down. It sounds to me that your son will score fairly high on the scale. They also test the school, so there is sometimes a worry that the school won't see the same as you but it turned out for me that the school's score was almost as high as mine and well over the threshold. It may be a good idea to get the SENCO on side and discuss a lot of the things your some does so that it will be fresh in their minds as well. I took my SENCO to the appointment so that she could fill out the school's portion of the test. It is a bit stressful knowing something is wrong and fearing because of past experiences that they won't see things the same as you. I know a lot of people on this forum have experienced that but I have been lucky so far(knock wood) and everyone seems to be on the same page as me. Saying that the diagnosis isn't due to actually come through until June, so maybe I should comment about it after then. When the penny dropped for me, after the family support worked mentioned AS I was unstoppable. I had always known something was different about Lib and now I had a name for it and some hope of getting the proper type of support. I rang every number and spoke to every person I could. I started at the school nurse. I called the Educational Psychologist directly and spoke to them although I still needed a referral at least I made them aware of my daughter and our issues. I called a man who works with Autistic Spectrum at CAMHS and explained things to him. I found out about and talked to the SENCO who then referred me on. I went to the GP who referred me onto CAMHS. I am a majorly squeaky wheel and I was not going to continue to let her school and everyone else put the blame for Liberty's unsociable behaviour on me anymore! I was not going to attend yet another parenting course that gave me a ton of advise that didn't even bother or pertain to my child at all. Sorry I am getting a bit wound up!!!! So if you need any help at all you get in touch with me via a private message or something, better still post here there are a lot of parents who can understand and have their own stories to tell. OK!

Jokes, HAHAHA Lib tells jokes that aren't jokes and then really laughs over the top about it. Like "why did the chicken cross the road? because he wanted to go across it" HAHAHAHAHAHHAHHHAHHHAHA I am like whatever dude!! LOL She really likes slapstick humour like on kids shows or who's been framed or people's funniest animals and shows like that. She laughs at those so hard she gets hiccups! People don't really pay attention to her jokes and kids just kinda look at her and walk away, poor thing. She thinks she is like Fozzie Bear "wacka wacka" LOL

 

[CWP]

Hello again,

 

Sorry I didn't realize that you were not currently involved with your SENCO etc. SENCO is the special education needs officer at your school. I assume that there is one in every school, I may be wrong about this? My SENCO is also the year 1 teacher in our school. You need to speak to your head and find out who your SENCO is and speak to them as they can refer you to the Educational Psychologist who are partly responsible for helping with getting a diagnosis. At least in my area this is the way it works. Failing that you can also go to your GP who should be able to refer you onto someone. My GP referred me directly to CAMHS. CAMHS is a child mental health service. This is who can actually give a diagnosis. The GADS test is the Gilliam Asperger Disorder Scale. It is just a series of questions to find out how high on the scale your child may be and if they then need further assessment. I am sure things are probably done differently all over the country so this may not be the same route that you will go down. It sounds to me that your son will score fairly high on the scale. They also test the school, so there is sometimes a worry that the school won't see the same as you but it turned out for me that the school's score was almost as high as mine and well over the threshold. It may be a good idea to get the SENCO on side and discuss a lot of the things your some does so that it will be fresh in their minds as well. I took my SENCO to the appointment so that she could fill out the school's portion of the test. It is a bit stressful knowing something is wrong and fearing because of past experiences that they won't see things the same as you. I know a lot of people on this forum have experienced that but I have been lucky so far(knock wood) and everyone seems to be on the same page as me. Saying that the diagnosis isn't due to actually come through until June, so maybe I should comment about it after then. When the penny dropped for me, after the family support worked mentioned AS I was unstoppable. I had always known something was different about Lib and now I had a name for it and some hope of getting the proper type of support. I rang every number and spoke to every person I could. I started at the school nurse. I called the Educational Psychologist directly and spoke to them although I still needed a referral at least I made them aware of my daughter and our issues. I called a man who works with Autistic Spectrum at CAMHS and explained things to him. I found out about and talked to the SENCO who then referred me on. I went to the GP who referred me onto CAMHS. I am a majorly squeaky wheel and I was not going to continue to let her school and everyone else put the blame for Liberty's unsociable behaviour on me anymore! I was not going to attend yet another parenting course that gave me a ton of advise that didn't even bother or pertain to my child at all. Sorry I am getting a bit wound up!!!! So if you need any help at all you get in touch with me via a private message or something, better still post here there are a lot of parents who can understand and have their own stories to tell. OK!

Jokes, HAHAHA Lib tells jokes that aren't jokes and then really laughs over the top about it. Like "why did the chicken cross the road? because he wanted to go across it" HAHAHAHAHAHHAHHHAHHHAHA I am like whatever dude!! LOL She really likes slapstick humour like on kids shows or who's been framed or people's funniest animals and shows like that. She laughs at those so hard she gets hiccups! People don't really pay attention to her jokes and kids just kinda look at her and walk away, poor thing. She thinks she is like Fozzie Bear "wacka wacka" LOL

 

[CWP]

Hi

Sorry its taken me so long to get back. To be honest I'm still in a state of shock or something like that. Since I last posted my son has been referred for assessment for Aspergers which I knew was coming. I have no problem with this at all. Infact I find it a relief. Is that a normal reaction? I feel like I finally know that he is not naughty and that I know that I am not a bad mum. Secondly I am becoming worried about my youngest son who is only two and a half. We have always said that they were chalk and cheese and they are. I have always seen the youngest as more sociable. However recently I have noticed that he also hates to lose at a game or to have something go a way he didn't expect. I don't know if I am being paranoid. It has taken til the oldest went to school to get recognition that something was just not right and I dread to go through that again. I can't decide if the youngests tantrums are a ' copy cat' or not. He can cry til he can't breathe and actually make himself sick but generally is much more sociable.

[gemgems77]

hi cwp our boys are the same age and this is new to me as well we went to see the pead today whos sending him for a ados asses ,as my journey is just slightly ahead of yours ill help you out anyway i can ,our stories are simuliar as it was nursery that pointed out the prob and every day i dreaded picking him up as i knew somthing would be wrong but he has seeemed to be doing better at reception but still doesnt do a full week ,how is your ds coping ?

[CWP]

Hi gemgems

 

Sorry I haven't been on recently. I'm a bit in limbo just now. My son has now been referred for assessment. The school themselves seem unclear about the procedures as they have apparently changed recently in Scotland. We have been told we should expect an appointment for him to see a Speech and language therapist first but don't know how long this will take. The school have been great thouh keeping an eye on him and conversing with us. They have said they are treating him already as though he has a diagnosis even though he doesn't as he responds well to them when they do and they are convinced he will receive a diagnosis down the line.

 

He's doing ok. I think as my understanding grows my stress decreases. From posts I have read this may change as he gets older and faces different challenges. However at the moment his main problems are tantrums through frustration and literal thinking. We have been told by his teacher that academically he runs rings round the rest of the class. He is a bit of a sponge. Especially with numbers which he has a 'fixation' with.

 

The other day he was really quiet after school and looked worried. It took me all night to get out of him what was wrong. One of the other kids had fell and really hurt themselves and there was quite a bit of blood which I don't think he's ever really seen. He thought because the boy was hurt bad and had to go to A&E that he would die. It was such a shame. His mind just works over time. Sometimes I think he no longer trusts people to tell them what he is thinking incase he is mocked. Or should I say he will think people are laughing at him. You know that way when you say 'oh sweetheart that wont happen' and you kind of laugh or smile he thinks you are laughing at him.

 

On a good note I am coming down more now on the side that my younger son has simply been copying the behaviour. I got him into a playgroup and he joins in and shares and its so different to my oldest. He used to say he was 'doing a story in his head' if he was playing with someone and if another kid spoiled his story he would have a huge tantrum. My youngest however seems to instictively shift the game and share toys. Its bittersweet for me really. I am delighted for the youngest but it did bring a tear to my eye when I realised how much the oldest had been struggling all that time and everyone just treated him as a 'bad sharer' and he would get more and more upset til I had to take him away. All that time he must have been so lost and I as his mother couldn't help. As I watched the little one it was like flashback after flashback. No mums were looking at me as though 'can you not control him' and they were sociable towards me as my son was to there kids. It was the complete opposite the last time around. As my son was more and more shunned by the kids I was more and more shunned by the parents and it made me so anxious. I haven't become involved with parents at school and I'm quite happy that way. I have plenty of good friends and family who love me an my boys equally and regardless and feel it is better for both our stress levels to keep ourselves in an environment like that.

 

Some people think we should keep pushing him into social and he'll 'come round'. No he wont. I wont force him into situations he can't cope

with. To me thats cruel. This isn't a minor case of shyness. Infact hes not at all shy he just gets exhausted as he says' trying to do things the right way all the time'.

 

 

That turned into a bit of a rant. I guess I just enjoy being able to sound of to people who actually 'get it'!

 

How old is your son? Does he cope well? I get the impression we are from different parts of the country. What is reception? Is that like his first year?

[**Mia]

Hello <'>

[Karen A]

Hi CWP Welcome to the Forum. Karen.