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rainbow queen

im new here

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hi just post short note on my probs,this is my first post. my son is 4 and i am certain he has aspergers he still has no diagnosis,only global developmental delay,he has been under the child development since 1,they did a little test on him for autism and said some things maybe are others not,he is behind a year in speech and lang skills and other stuff like motor skills ect..............at first they said he would go speacial school now as he progressed well in child development groups the education woman said hed be ok in mainstream.after many appointments and letters and struggling and seemling talking to a brick wall,i have started to stand up for myself and told them not happy with all this vague cr*p want some at done want a diagnosis,after seeing his dr at hospital he now has refered me to camhs,awaiting appointment now,am i going down right road for a diagnosis? my gp said she can not refer me elsewhere for one cause he still under my hospital.

4 years ive been at this now,he drives me crazy at times and have read alot of your other posts and they all nearly match up with what my son dose ect...........,my nephew has at only 25 years old been diagnoised with tourettes,aspergers and obbesion complusion disorder- how bad is that 25 years its took,and its only cause it came about the probs im having with my son that my sis pushed for help for him as mainly they have struggled with him on there own[now he is being helped]. i have just had talks with his teacher told her what i think,he has no state ment and dr is waiting to see how his first term goes,teacher was quite good and did seem to listen but i am baffled that i seem to do all the ###### work for them,i mean u would think his dr would of raised these points with teacher but no she wasnt aware of it only that he has probs and is only speacial ed regestir.anyway get the feeling i am not being belived,as he dont show alot in hospital /school environment,but sure shows it at home,and everywhere else, ANY HELP ADVICE ??? WOULD BE GRATEFULL thanks guys,xxx :thumbs:

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Hi Rainbow Queen (love the name)

 

Welcome to the forum. I'm not sure what to say to you, I am not that good with all this stuff. From what you say you are doing a good job. Could you try asking the hospital your son is under to refer you to a specialist in Autism, you don't say what he was refered to the hospital for specifically, if it is for Autism then you are in the right place if not the ask to be refered to someone who can help.

 

My son is 5 and still not diagnosed, they say he has very complex needs and they want to observe him at school. I wave seen a very good team at Guys, if you are near there maybe you could ask to see them.

 

If I have not been any help at least I have bumped you up to the top for someone else to see.

 

Viper.

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Hi Rainbow Queen and welcome to the forum :)

 

It's a great place, great support from people that understand.

 

My son, 27, was diagnosed with global development delay when he was two, he was finally diagnosed with autism at 19. My youngest son was diagnosed with Asperger Syndrome a few months ago at 24, my husband was diagnosed with AS a few years ago at the age of 56. So yes, once someone in the family is diagnosed the diagnosis of other family members often follow.

 

I think the referral to CAMHS is a step in the right direction. It would help if you could do a profile of your sons difficulties and strengths, bullet points will do. Cover everything from birth to now. This will help the professionals and may even help you recognise the problems more clearly. Keep a note book handy to jot down points when you see them or think or them. Don't forget to tell the professionals about the family link to autism.

 

It is quite common for children with ASD to hide their problems at school. My son managed it for 18 years!!

 

Take your time to read some of the many postings, education resource section has useful information

 

Your son should not need to have a diagnosis to have his needs met. This topic has useful information on education, it's definitely worth a look.

 

NAS information on SEN procedure, NAS information sheets on Education

http://www.asd-forum.org.uk/forum/index.php?showtopic=690

 

Any question, just ask.

 

Nellie xx

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:D ........Hi welcome ...CAMHS is definitely a step in the right direction, it may be a long journey to a dx but were all here to help :thumbs: .

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Hi rainbow queen -

As has already been said, referral to CAMHS is definitely a step in the right direction.

Waiting times for CAMHS can vary enormously from area to area, and depending on the 'tier' you've been referred under. If there are delays, ask instead for a referral to a consultant paediatrician, which can happen a bit faster. I suspect yor GP might be being economical WTT in saying there's NOWHERE else...

In the interim, get yourself as organised as you can in terms of any 'evidence' you want to put forward: behaviours you observe, diary of events, existing medical reports/reviews etc. Whether it is ASD or not is not the question - fact is there's SOMETHING going on (or he wouldn't have the dx 'global developmental delay') and they need to ID what it is

VERY BEST

BD

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B) thanks every one for the replys,i have gathered my evidence as in lists of stuff my son has done since young and the ongoing new stuff too,am also considering camcordering him ,wonder if anyone else has done this to show for evidence? i keep all the letters and papers i receive about him.the hospital pediatrician has done the referral for camhs.

one other thing that's puzzling me he is referred to as being on special education register,though he has no statement,im wondering what exactly they will have written down on file about him?? is this because hes only started mainstream school this sept and they need to see how he copes?

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Hi Rainbow Queen,

 

i have gathered my evidence as in lists of stuff my son has done since young and the ongoing new stuff too,am also considering camcordering him ,wonder if anyone else has done this to show for evidence? i keep all the letters and papers i receive about him.

 

Spot on! Always keep a copy (or two) of everything. I keep originals and also scan them in to a file on the PC. That means you can refer straight back to source any time there is a queery.

 

the hospital pediatrician has done the referral for camhs.

 

That's good.

 

one other thing that's puzzling me he is referred to as being on special education register,though he has no statement,im wondering what exactly they will have written down on file about him?? is this because hes only started mainstream school this sept and they need to see how he copes?

 

OK. The school recognise that your son has difficulties. Without a diagnosis they will be carrying out assessments and gathering information through observations and so. If you want to know what they have written about him - ask them! They will be trying to build a picture of his needs to begin with. Once they have done this the next step should see them ask you to go in to talk to them about this. Then they ought to be issuing an 'Individual Education Plan' (IEP). This should describe his main difficulties and set some targets for him to work towards. You should get a copy of this and also have the right to have things added or removed.

 

My advice is to work with them, you want a good eductaion for him - so do they.

 

I hope that helps. If you have any more questions - ask. We were all new to this once as well.

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Hi and welcome. :D

 

Unfortunatly we parents have to do so much to get some help for our children, it can be quite exhausting. :(

 

Hope you will get a DX soon.

 

You have to push it to the max for help before he is 5 because after things get far more complicated be carefull that they may try to delay everything just because of this, when my son was 4 they decided just to monitor :wacko: him then when finaly the DX came through he was 7 I have been told he was too old and they did not have much provision for children over 5. :tearful:

 

There is a lot of stuff going on call "Early Support Helping every child succeed"

One booklet is excellent: ---->"Information for parents Autistic spectrum disorders (ASDs) and related conditions." it has been made with the contribution of PACE and the NAS by the department for education and skills and deprt of health.

 

You can obtain a copy if you call this number: 0845 602 22 60 or Email to: dfes@prolog.uk.com the reference is: ESPP12 it is really good B) try to get it it is worth the trouble.

Be careful about camcording :ph34r: Mother in Need posted recently and said that the child protection team accused her of not respecting her child human right because she camcorded him. :oops:

 

Take care.

 

Malika.

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:o thanks again for your advice,was shocked about the cam corder issue, :( good job you told me,its so frustrating only wanted other people to see how my son behaves when hes with me and family.each day is a huge battle with him,nothing is simple,and he argues with me all the time[screams] over words and sentances which he feels arnt either right or misunderstands it[i really dont know what it is]. got such big issues with him changing from one place to other,i cant speak to people in my house cause he wont let me,everything has to be planned out and i darnt go back on nothing or all hell breaks loose. numerous other things go on too,put it this way i have no life,and all this screaming and problems is really depressing me,and my other 2 half year old son[as he gets it in the neck all time of his brother]. :wacko: i hope things will improve,but i dont seem to be able to get people to listen,or should i say they dont understand what im trying to say.i been in seen his teacher,gave her lists of what probs im having with him,she said only thing she sees at mo is when hes asked to do something he starts shaking[hes only been there 3 weeks]. hes coming out of school with his jumper on wrong way ,shoes on wrong feet,trousers up his legs,after p.e[and i told them he cant dress himself very well]. he major kicks off with me when i collect him-wondering if its all noise of kids and parents,he dont like people walking behind him on footpath,takes me nearly hour to get home sometimes and its a 10 mins trip. :crying::wacko:

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Hi' ;)

 

Have a look at my post #41772 and #41770 I have put two links which could be of some help You have to click on my Name and then Show all the post from this member it is quite easy as I have not understood yet how to put a direct link to one of my previous post. :oops: Sorry!!

 

Take care.

 

Malika.

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