'I've got Autism' Badges. What are your thoughts please

kedger25

My son has Autisim,speech delay and epilepsy,he has one of these badges which he wore for a couple of days last summer for the school run as i was sick to death of people looking at me pushing him a a double pushchair with his 3 yr old sister ( he was 5 at the time )as i couldnt risk him walking on the way to school as he has no danger awareness,if he had a leg missing it would of been perfectally acceptable for him to be in it but as they couldnt tell what his disabilty was,it was wrong for me to have him in the pushchair!They soon held there heads in shame when they saw the badge and ive had no looks since!Its peoples ignorence that gets on my nerves!

ekkygirl

I think they might be a good idea for certain situations, Im not sure that it would be ok to hit another child in the queue in any situation. If you knew he was likely to to that, maybe you could have warned them. It must be difficult to know what to do.
My boy was kicked in the mouth on on a climbing frame by another child who has AS and didn't want other children on there. His mother was distraught as my boy was bleeding and none too happy . I ended up consolling her.
Im not sure how she could have handled things differently, the risk was always there but there is no solution. To learn social skills you need to try a social envionment, trial and error, Im thinking the tshirt might have helped, I supose the whole point of unpredicatable behavior is that its unpredictable.

Savvy_Sue

blue_monkey wrote: »

I'd love to know what you would think, as a bystander, if you think it would make a difference. Thanks.

There are some situations where it might help: many years ago when DS1 was still quite small, we were waiting for a ride in a horse-drawn cart and a slightly older child kept asking when it was coming, then pushed on first, and when the ride finished this child just grabbed my wrist, very hard and painfully, to help get off. My reaction was to say "I think you need to learn some manners, young man", at which point a woman yelled at me "She's a girl, and she's autistic, she can't help it."

I was very upset both by the damage to my wrist, and to being shouted at: the child had been allowed to stand in the queue and to get on the ride alone, so how was I supposed to know there was a problem? I'd barely heard of autism at that point, and my own son was a bit different, and my first, so I was never quite sure what was 'normal' in older children.

Clearly a t-shirt or button badge would have helped in that situation, but equally being handed a card afterwards would have been preferable to being shouted at.

blue_monkey_2

Back again, I did not intend to post and run but I've been popping back and forth the read the replies. Its been nice to read reactions and opinions from everyone on this, I am glad I got you all talking about it anyway!!

Someone pointed out about me standing with my son if in a queue - yes, I usually do but like I said, I took my eyes off him for a split second and in that time he turned and hit the boy in front, I apologised to the boy several times and told my son that he was not to hit other children. I suppose, if I am honest, it is frustrating for me too telling him over and over and over and he never takes it in. I don't even think he is listening to me to be honest. I usually have to touch him to get his attention and I have to physically turn him to me to speak to him, I cannot speak to him otherwise as I know he is not listening. I am usually standing with him though.

At school a few weeks ago for the disco he would not stand still in the queue and was bouncing, I let him stand on his own but I was slightly apart from him as all the other kids were on their own. He was bouncing around and I noticed that the boy in was actually holding him down so he could not move. So I had to go stand with him again.

I have decided that I am going to either buy or make some PECS - these will have faces on and I am going to get them onto a springy keyring. The faces will be happy and sad, I am also going to get or make some 'traffic lights'. If he does something bad I can show him the red card. This will show others that he has a communication problem without me having to announce it to everyone and if he is kicking off and is given a 'red card' to stop then it might make them understand too. I think this would be helpful.

Likewise if he has been kind or has been good waiting then he will get a green card.

However, next year we are planning to go on a plane, he will be wearing a t-shirt so that while we are waiting to board everyone get's a fair amount of warning.

I should have said that my son is only 5 so I do not think t-shirt wearing at this age is going to be taken as micky taking. I think it is disturbing to think someone would put an AS t-shirt on a child as a joke to be honest but then it does take all sorts.

I think that there is a difference between 'naughty' kids and those with ASD, usually the parent is running after an ASD child apologising and explaining with a 'naughty' child the parents are just letting them get on with it.

I also think that there needs to be a lot more education on Autism.

My son will not go into the deep pool at our leisure centre but will only go into the baby pool. When I joined the centre the baby pool was closed for 4 months so my son never went, anyhow it opened again but last week closed. I asked them when it would be open again because my son would not go into the deep pool. I was told - by 2 people - to 'just chuck him in'. You know what, the last time I was told to do this really bloody annoyed me as it was the manager that told me to do this. If the disabled hoist was not working there is no way they would say to the carer 'sorry, we don't know when it will be fixed but why don't you stand at the edge and tip them off their wheelchair, that'll get them in'.

Savvy_Sue

There is a thread (I think on the disability board) about taking an autistic child on a plane, definitely recommended to flag up that the child has special needs to avoid being in a queue leading to child running off or having meltdown ...

FWIW I think the PECS things sound like a good idea, likewise the red and green cards. You have to use whatever strategies work for you!

broclo

*Chattie* wrote: »

I read recently that someone has had their less than 2 year old statemented for autism which I find incredible as how on earth can they diagnose let alone statement for autism at such a young age but I could imagine that if anyone put a t-shirt on such a young child when playing with their peers then it would only be the mothers who would be able to understand and read it rather than the peers and they may not believe it.

Ok...here goes a MASSIVE WAFFLE..................................:rolleyes:

I read only today about a 14m old being diagnosed. It seems the diagnosis can be sought early depending on the parental observations, Health Visitors views and the Local Authority in which the child lives.

I have moved recently, the Local Authority from where I was living dealt with things differently and did not generally advise on timescales. However the new Local Authority in which I live, is very clear in it's proposed timescales.

18m check up with HV(or before if parental concerns are raised and it is thought possible) performs CHAT test. If child fails the CHAT test they should be reassesed 1 month later. If they then again fail they are refered to a CMO. This should be within 6 weeks. CMO then makes a preliminary diagnosis to whether the child has an ASD. If the child has a ASD they are refered to a child psychologist. The wait is upto 18 weeks. The child psychologist then performs an indepth diagnosis to asses the extent of the ASD and whether there are common related conditions like dyspraxia for example. At this point they may or may not refer to CAHMS depending on whether the child will benefit from the service.

Additionaly after the preliminary diagnosis parents are encouraged to get an assesment of needs for the child and carers assesment for themselves from a special needs social worker. This can lead to funding for the child to have early years education(or private childminder) before the child is eligible for the governments standard funding. This can be granted even if the parent/carer is not working so that they may give more attention to a sibling or just have much needed time for themselves. I have a friend who was awarded funding for laminate flooring throughout her house as carpets were impossible with an incontinent child who refused to wear nappies. This friend applied for this funding after she heard that another parent was awarded funding for an extenion as the sharing of bedrooms was impossible after many years of it being a major issue that was affecting the whole family and causing sleep depravation for the sibling etc.

They are also encouraged to complete the DLA forms after the childs prelimanary diagnosis and then the carers allowance once the DLA is awarded. If DLA is awarded they are encouraged to apply for a The Cinema Exhibitor’s Association Card, so the parent/carer can receive free entry. Again they are advised to apply for a taxicard from the Community Transport Officer and a carers oyster card if they live within London. Also to apply for the increased rates of Income Suport and Child Tax Credit. Plus definately the time to apply for a RADAR key for disabled toilets. If they are still in nappies and you can't use the changing tables due to their weight or they simply 'create' at least it is a bit more private and generaly cleaner!

As soon as the child enters an early years setting they can speak to the SENCO and have an assesment. The LEA then take 6 weeks to make a decision whether to asses or not, after a further 10 weeks they decide whether to make a statement or not, then after a further 2 weeks issue a statement or notify the parent of the decision not to. It is then a further 8 weeks for any statement to be made, so 26 weeks in total.

If they decide not to get a SEN in an Early years setting or are only given an IEP by the LEA, they are advised to ask for a further SEN 6 months before an application for Infant schooling is to be made.

At 3 years they are advised to apply for the mobility element of DVLA and contact the paediatric continence services for free nappies if the child is still not 'dry'. They also advise the parent looks at the motabilty and blue badge schemes if the child is awarded the mobilty element of the DLA.

In addition to that parents/carers can apply for an 'I count card' which allows in some areas free entry to local attractions(swimming too locally) for parents/carers but also includes the right to que jump at many local attractions and most of the major attractions, eg Thorpe Park.

Righty, sorry about the waffling, but it seems that some of you may not be aware of all that is on offer because of talking about issues queing at theme parks etc. Added extra info as if people are not aware of the 'I Count Card' then it seems probable that they may be missing other benefits too.

I'll shut up now, worn out ofter that 'essay' :rotfl:But thought it may help bluemonkey at least.





Topic...badges...I have a littlun so yes I think it is a good idea, I practically start hyperventillating when we go through the doors of the local soft play in anticipation of what could happen and find myself telling people at least a dozen times a day why he is not making eye contact/talking/not interested in 'toys' etc. Story Time at the Libary is fun: 20 well behaved children sitting nicely and listening to the story...my child shouting "ra-ra-ra" through the whole story if I'm lucky. If I'm not so lucky he walks between the Story Teller and well behaved children constantly and has been known to take the book off the Story Teller and chuck it across the room to shut her up :rolleyes:

But the idea of a badge, to me at least, is not good once the child understands what the badge is and could feel 'different'.

I would possibly contemplate a t-shirt ONLY for air travel. However, I am planning a flight pretty soon and spoke to the airlines CS dept and they have told me that they are not only happy for my child to have the pushchair taken to the boarding gate, but they will also allow us to use the disabled transport to the boarding gate. They have also offered priority boarding free of charge and a pre-booked(budget airline so can not pre-book normally) seat close to the toilets. So it is worth asking for help, goodness knows airline travel is stressful enough even with more predictable children!

Oh deary...I waffled yet more
Still may be useful to someone

blue_monkey_2

Thanks Broclo,

Yes you are right, it does depend on wheere you live. I lost count of how many times I was called to pre school because my son would not do as he was 'asked' sit on the mat, play nicely with other kids, he was biting the other children every day, etc... I asked at that time (it was the term before he was 3) was there anything wrong, no I was told, it is just a phase. So, in the end, sick of ahving to be pulled aside every day I just stopped sending him. I dreaded pick up time every day.

Then he got to the school nursery and within a few weeks he was giivng his own TA because he could not cope with the morning and the other kids. Still I was being pulled aside, nothing was suggested and every day I was being called in to tell me he had bitten/hit someone else or the other kids would be playing nicely and he would charge at their toys and mess them up, if he was playing with a toy there is no way he would let anyone else near it. I went to see the my HV with a whole list of problems the teacher had given me that she had noticed and the health visitor said 'she did not know what to do'. So I went to see the doctor who referred me to the ADHD clinic. The ADHD doctor saw him and then noticed he had 'social, communication and (another word I cannot remember) problems and these needed assessing but diagnosed him with 'ASD'. 2 1/2 years on from this request I am still waiting for the appointment for the CDAC (Communications Disorder Assesment Clinic). I've seen 5 different doctors, 4 of them have said he is ASD but I am still waiting for that *official* diagnosis that says just what it is he has - the last doctor said she would send an appointment to see him in 6 weeks time.... 5 months on it has not arrived as they have a 'backload'. I am pretty sure he has Aspergers myself but we are still waiting. All I want that piece of paper for is to ensure that he get's help through school, everything else I do think I manage fine but I do have my off days.

Don't get me wrong, he has made considerable progress in school, I really do think that as time progresses he will be able to deal with things but for now he still cannot cope with others, he has no consideration for others, obviosuly there is the tourettes as well. I am just thinking about the small button badge option right this minute for when people try to speak to him and he will not look at them or if he goes off on one and asks questions over and over. If he ignores them people think he is shy so will try and speak to him more and of course then the goes off on one and he will try and lash out which is why I had to hold him quiet a lot.

Something funny though, the other day our TV broke and we had to get a new one. We went off to PC world and he followed the guy around that worked there asking 100 questions about the TV's. The chap said to my husband 'he asks a lot of questions... I'll be back in a minute'. He went off and came back with 2 learning CD Rom's (Science and The Body) marked at £9.99 each for him as he was so inquisitive and put them through the till for free BEFORE we had even bought anything because he was so curious about how everything worked!

Broclo, that was handy to know about the plane, thank you for sharing. I did think we wanted some of those double seats right at the back of the plane away from everyone else but they always seem to be gone when you try and pre-book!! I am not sure if early boarding is best though, I think waiting until the last minute will be much easier, you can be on there for 45 minutes before the plane takes off.

prowla

Perhaps we all need a badge saying "sorry - I'm not normal", or something like that.

broclo

blue_monkey wrote: »

Yes you are right, it does depend on wheere you live.

Seems that way, I have found it is completely different in both of the authorities I have lived in. I am actually fed up of people saying a child can not be diagnosed early, in actual fact a prelim can be made at a year and final at 18m in certain situations.

So, in the end, sick of having to be pulled aside every day I just stopped sending him. I dreaded pick up time every day.

I know that one! I dread taking my ds1 some places, but if social issues are a problem, then they need to go, regardless of any other parents views on 'naughty johnny'.

I went to see the my HV with a whole list of problems the teacher had given me that she had noticed and the health visitor said 'she did not know what to do'.

Lost for words! My current HV was amazing when I moved to the area, she saw us 3 days after I called her. Told her I wanted things like speech therapy and use of a sensory room etc. Within hours she arranged it and has been AMAZING. She fully understood that I knew what ds1 needs as I explained his behaviour and how I thought he could benefit etc Very lucky. Thought about changing HV or at least telling her what she could do to help him?

2 1/2 years on from this request I am still waiting for the appointment for the CDAC (Communications Disorder Assesment Clinic). I've seen 5 different doctors, 4 of them have said he is ASD but I am still waiting for that *official* diagnosis that says just what it is he has - the last doctor said she would send an appointment to see him in 6 weeks time.... 5 months on it has not arrived as they have a 'backload'. I am pretty sure he has Aspergers myself but we are still waiting.

I was told with the original diagnosis it could take longer. I called and asked to be on a cancellation list and got a last minute appointment. The lady said they were happy to do this as a lost appointment cost them £150 all told!

If it is taking this long(how????)maybe you need to get your local carers centre, support group or HV to fight for this?

All I want that piece of paper for is to ensure that he get's help through school.

I was under the impression that even if a diagnosis of the exact condition(some children immediate, others takes a few years if complex) had not been made, that it did not stop the SENCO arranging a SEN through the LHA. At the very least they would be able to provide an IEP at a minimum surely?

Everything else I do think I manage fine but I do have my off days.

Have you had an assesment from SS? They will provide childcare for the carer to take time out, visit the hairdersser etc. In fact you can also get a carers grant(upto £300) for things like aromatherapy or outings for yourself! The more 'me' time you get, the better at coping you will be! Or why not use SS's respite care? Your littlun may enjoy going off for the weekend once a month to have fun, whilst you relax?

I am just thinking about the small button badge option right this minute for when people try to speak to him and he will not look at them or if he goes off on one and asks questions over and over.

At the end of the day, if it makes you feel more relaxed it is a good thing. I'm not keen on the idea for an older child...BUT if it does not make him feel any 'different' then good stuff! lol I know one little boy who is 'proud' and tells everyone how special he is lol

Broclo, that was handy to know about the plane, thank you for sharing. I did think we wanted some of those double seats right at the back of the plane away from everyone else but they always seem to be gone when you try and pre-book!! I am not sure if early boarding is best though, I think waiting until the last minute will be much easier, you can be on there for 45 minutes before the plane takes off.

Sorry, should have explained better. The airport and airline have agreed that with me as he has to check his environment out. He would want to look at every seat, bolt etc before settling, so they say he has between 2-30 mins to check it out, then can see people board gradually instead of walking into a heaving atmosphere.

They said that he could go on last too if I wanted. They also offered to let us go through check out early, be transfered by buggy to a seperate waiting room, then buggy would take us to gate as the last to board.

They also offered bulk heads if he was prone to kicking out or physical behaviour as it could annoy other passengers. I spoke to the passenger special needs officer(transfered by switchboard at gatwick airport) at the take off and landing airports as well as the airline.

The passenger special needs officer seemed fully aware of all the issues a child with behavioural issues presents and was willing to accomodate any way possible. They also said he could go through the disabled bit at security(issue you with a special sticker stuck to your boarding pass) so he could remain in his buggy and be scanned by hand/swabbed and not made to take off shoes, put down toys, part with food etc

They are so very helpful as the last thing they need is a child having a meltdown.

The airline also said that the cabin staff would know, in order that they make 'allowances'.

Waffling again lol

broclo

broclo wrote: »

part with food etc

I explained he has a 'special' juice beaker over 100ml and that he clings to it for dear life, for some wierd reason. They said they have 'ways to test' it is ok...whatever that means So he will be allowed a 330ml beaker full of the stuff he likes Apparently they must accomodate any disability even if not obvious

Right...gonna shut it now!:rolleyes::D