need help

[Anonymous]

#3844

Hi my name is Sarah i have a 3year old son called Joe, I took him to see our GP back in february due to his lack of speech got refered to speech thearpy, went there back end of march saw a lovely woman but it was very traumatic for Joe he got very upset when he couldn’t do what he wanted to, she was trying to play with him show him books but he just had a tantrum, when it came time to go he got upset he cried all the way home took him a while to calm down. Went back to speech thearpy tried the same again Joe got upset when things changed he loves playing with train anything with wheels when she gave him a train to play with he was very content but when she asked him to put it away he got upset he throw the train he didn’t want to put it away, A t the end of the session she told me he might have ASD and that she would refer him to one of her collegues a speacialist speech thearpist at the hospital. When i got home i went to see my mum joes nana to collect his brother and sister who are 7 and 4 told my mum what the speech thearpist had said, my mum then said she had often thought that too i on the other hand has never even considered that, we then search the internet to got some info, lots of things that joe does points to ADS but i never noticed looking back on things that have happened. When he was little he always wanted me he wouldn’t even go to his dad and my parents were invisible to joseph he didn’t even acknowledge them my mum told me how upsetting this wwas for her, but he did that to everyone i just thought he was clingy. In situations where there is a lot going on he doesn’t seem able to cope last year his brother and sister went out for tea so me and his dad took him out for tea to brewster bears where there is an indoor play area we took him in and he didn’t know what to do he just cried and carried on for what seemed like the whole time we were in there even though he had been there before to a birth day party and he got on alright i did know what to do we had to bring him out and go home since then we rarely go to these places. He dosen’t like new shoes he wont try them in the shop i have to try them when we get home then he gets upset he is alright the next day it takes him a while to get used to it, when i put him a coat or jacket or anything with a zip or buttons he has to have it fastened right up or he cries he doesn’t like shorts or t-shirts with short sleeves he tries to pull them down to cover himself up. When it comes to playing games with Joe it is vert difficult he love thomas the tank engine and trains but he has to put them on the table or window cil where he can see them properly he doesn’t drive them around the floor he lines them up and if any other child his brother os sister or counsins who he sees regular tries to play with oone or moves them he has a tantrum and he doesn’t want to play he likes to play on his own, he sometimes plays with me but if we are playing with a dolls house he eventually gets bored with that then pretends it is a train or goes back to his trains, his trains get his undivided attention. Going out for walks is a nightmare if we are in the park its not too bad but on roads he will not hold hands and runs off but he has no sense of danger i know that he would run into the road he doesn’t wait when icall his name he can get quite far away and i have to run after him so it is quite stressful and he wont wear rains or arm strap if i try to pt these on him he has a tantrum and i have to carry him which isn’t easy he is big for his age so more times than not he goes in the buggy. There are other things too but i feel i have probably gone on too long as it is, as yet he has not been diagnosed with an ASD going back to the hospital next week, I was told by the speacilaist speech thearpist that an assement would take place when he starts nursery in september so they can see him in different environments and how he reacts but nobody has given me any advice on how to deal with certain situations, i just don’t know what to and just needed to write this down. I dont know if he is has ASD but with the question been raised i can’t stop thinking about it just woundered if anyone has had similar experiences and can give some advice i would be very gratful

[Anonymous]

#4935

Hi Sarah. I won’t bore you with details but we had very similar experiences with getting a diagnosis for both our son’s. In the end we had to go private as we kept being given future appointments as our son was described as ‘un-examinable’. It is essential that you keep on pushing your gp/speech therapist and any other professionals to see a specialist asap and not wait until September as they are suggesting. With a diagnosis comes additional support for your son and your family and the sooner you can access that the better. Unfortunately services for autism are subject to the same postcode lottery effecting all areas of health/education/social services. If you would like to speak to someone, Carol, who is parent support at Autism Independent will be in the office, mornings next week and can be contacted on 01536 523274. Jayne, who often posts on here, is also a wealth of information and I’m sure will offer whatever support that she can. Best of luck. Dave.

[Anonymous]

#4933

Hi Sarah,

I’m a parent of an 8 year old autistic boy with no speech. He wasn’t officially diagnosed and ‘statemented’ until he was 4 years old, even though he first underwent those standard/various tests from the age of 10 months! We knew early on that something up as he has a twin sister who was developing normally to compare him with.

We knew that he had autism more than 2 years before he was diagnosed, but as Dave says, once diagnosed your son is entitled to stuff! so they’re generally not in a hurry to arrive at a conclusion. Unfortunately, although you have various entitlements, nothing comes easily. My personal experience is that you have to fight for pretty much everything.

As Dave says, there is no reason why an assessment should wait until September – so I would recommend doing everything you can to bring it forward. You can be sure that there’ll be more assessments and referrals before you get close to that all important diagnosis.

I am not qualified to tell you whether or not your son is likely to have ASD, but from what you’ve told us I think it’s probable. A diagnosis is important to get the help and support he, (and you), will need in the long term. In the meantime, knowing that he may well have ASD will help you to understand what he does and why he does things, and will also help you to find ways to help him.

It will also help your other children to understand these things – there’s a book we bought for our children called, ‘My brother is different’ which really helped them to understand him and to explain his condition to other people, (friends, etc).

There are lots of sources of good information – I hardly know where to start! The National Autistic Society website is a good source of information as is the USA equivalent.

Forums like this can be very helpful if you’d like help with a specific issue.[8)]

[Anonymous]

#4934

Hi Sarah
I have just read your post, and really felt you could have been writing about my son, almost identical, except my little boy’s thing is Bob the builder. Everything you said is the same, shoes, clothes, zips, hospitals, all just the same. My son is 4 now, and we are still going through the long wait, we know he is ASD, and it has been heartbreaking and shocking for us. I love him to bits, and he is very clingy to me too, apparently this is normal with some ASD children. I don’t take him to places where there is noise, it is too chaotic for him and he gets distressed. He is happiest at home playing on his own, so I doubt he will go to normal school. I just wanted to let you know you are not alone – I see our little one as very sensitive and needing protection from a loud and fraught world he doesn’t understand. Quiet always works, and parks and walks, he is glued to his micro scooter most of the time, life is very different around here now. If I have any advice to give you, it would be to take his distress signals in those difficult situations, as a sign to leave – that’s what we do. If anyone tries to touch him without permission or warning, we simply tell them not to, as he is hypersensitive to touch. He lets me hold him firmly, or his dad and older sibs, but no-one else can get near.
I highly recommend a book by Carl Delgato, “The Ultimate Stranger” (don’t like the title but the content is eye opening.) You can email for more about any of it if you would like.
I send you lots of support and empathy.
Warmest wishes
Deejane

[Anonymous]

#4932

quote:

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Originally posted by sarah
Hi my name is Sarah i have a 3year old son called Joe, I took him to see our GP back in february due to his lack of speech got refered to speech thearpy, went there back end of march saw a lovely woman but it was very traumatic for Joe he got very upset when he couldn't do what he wanted to, she was trying to play with him show him books but he just had a tantrum, when it came time to go he got upset he cried all the way home took him a while to calm down. Went back to speech thearpy tried the same again Joe got upset when things changed he loves playing with train anything with wheels when she gave him a train to play with he was very content but when she asked him to put it away he got upset he throw the train he didn't want to put it away, A t the end of the session she told me he might have ASD and that she would refer him to one of her collegues a speacialist speech thearpist at the hospital. When i got home i went to see my mum joes nana to collect his brother and sister who are 7 and 4 told my mum what the speech thearpist had said, my mum then said she had often thought that too i on the other hand has never even considered that, we then search the internet to got some info, lots of things that joe does points to ADS but i never noticed looking back on things that have happened. When he was little he always wanted me he wouldn't even go to his dad and my parents were invisible to joseph he didn't even acknowledge them my mum told me how upsetting this wwas for her, but he did that to everyone i just thought he was clingy. In situations where there is a lot going on he doesn't seem able to cope last year his brother and sister went out for tea so me and his dad took him out for tea to brewster bears where there is an indoor play area we took him in and he didn't know what to do he just cried and carried on for what seemed like the whole time we were in there even though he had been there before to a birth day party and he got on alright i did know what to do we had to bring him out and go home since then we rarely go to these places. He dosen't like new shoes he wont try them in the shop i have to try them when we get home then he gets upset he is alright the next day it takes him a while to get used to it, when i put him a coat or jacket or anything with a zip or buttons he has to have it fastened right up or he cries he doesn't like shorts or t-shirts with short sleeves he tries to pull them down to cover himself up. When it comes to playing games with Joe it is vert difficult he love thomas the tank engine and trains but he has to put them on the table or window cil where he can see them properly he doesn't drive them around the floor he lines them up and if any other child his brother os sister or counsins who he sees regular tries to play with oone or moves them he has a tantrum and he doesn't want to play he likes to play on his own, he sometimes plays with me but if we are playing with a dolls house he eventually gets bored with that then pretends it is a train or goes back to his trains, his trains get his undivided attention. Going out for walks is a nightmare if we are in the park its not too bad but on roads he will not hold hands and runs off but he has no sense of danger i know that he would run into the road he doesn't wait when icall his name he can get quite far away and i have to run after him so it is quite stressful and he wont wear rains or arm strap if i try to pt these on him he has a tantrum and i have to carry him which isn't easy he is big for his age so more times than not he goes in the buggy. There are other things too but i feel i have probably gone on too long as it is, as yet he has not been diagnosed with an ASD going back to the hospital next week, I was told by the speacilaist speech thearpist that an assement would take place when he starts nursery in september so they can see him in different environments and how he reacts but nobody has given me any advice on how to deal with certain situations, i just don't know what to and just needed to write this down. I dont know if he is has ASD but with the question been raised i can't stop thinking about it just woundered if anyone has had similar experiences and can give some advice i would be very gratful

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[Anonymous]

#4931

hi Sarah,
sorry I posted your message back buy mistake,but now I know how to reply.My wife and I went through a similar time with our son Gabriel who is nearly four,we are waiting to find out what happens next in regards to school,but it feels good when the various programmes of help begin.I agree with Johnnys Dad that you probably do have a child with autism so I think you have done the right thing by getting involved.We are still new to all of this so my limited advice is just to hang on until the help comes,we found that when it did,it made us feel like we had a bit of control back in our lives.It has enabled me to deal with all of this in a far more productive way.It is rather confusing sifting through all the info at first but you soon get an idea about what to look for. Best wishes.

[Anonymous]

#4936

he defanantly has sensory issueshttp://autismandaspergersinthefamily.freeforums.org/sensory-issues-f33.htmlhttp://autismandaspergersinthefamily.freeforums.org/diagnosis-the-process-for-children-uk-t1019.html

[Anonymous]

#4937

Hi Sarah, reading you story is identical to mine and many otjhers on here. It certainly sounds like asd to me but i'm no dr. Please push to get your child assessed quicker. The process can take 6 months so have paitience although i understand this will be frustrating for you. Your child will be assessed and your input will be vital, start writing things down when you have breathing space ( i know you wont get much of it but try) and expalin things fromn as young as you can, you will be asked to complete development forms, and they will observe your child over an hour or so, then educational psychologists, speech therapists, special needs teachers plus nursery teachers and any other professional involved with your child will be invited by the Local Education Authority to write reports which will all go to panel ( a meeting that decided what is best for your child) and then a pre statement will be drwn up, if autism is not mentioned ask the lea for your child to see the paediatric autistic consultant to assess your child. ( like i did… in fact ask your gp to refer you) . The final statement will then be drawn up to advise which school can meet your childs needs. If you agree the child begins school and is reviewed every 6 months ( if under 5 yrs old) and every year ( if over 5yrs old). I hope this helps. My msn email is tigersbaby@hotmail.co.uk if any one feels the need toi talk at all. I know a shoulder to cry on is helpful xx ( that is open to all by the way)My name is Jayne Dallimore.

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