why does no one fucking listen to me!!!

[bananananacoconuts]

i started a thread regarding my 6yo ds who has anxiety and many spectrum related tendancies. (not dx)
spoke to school....teacher said she would get the nurse to call her to discuss where we go from here. i have since had no feedback from the teacher.
so this morning i came to the doctors to talk about ds. armed with my diary and a list of his traits. i was totally dismissed, he didnt look at the diary once and didnt let me finish talking about him, he said he sounded like a 6year old and that asking if he was ok 42 times in 4 hours was perfectly normal (if you all think it is feel free to flame me!)
doc said i need to hound school to get the nurse to sort out a caf form(?) then he would be assessed from there, he didnt listen to the fact that ds is naughty at school as he save most of his anxiety for home and so assessing him at school will not help in the slightest!
cut to me currently crying in the carpark of the the surgery, not one person is on my side about this exh and my family have argued with me about it, doctor cant understand that school havent said to me there's a problem and it's me saying it to them and school seem happy to just have him as the naughty boy! he is my son, i spend the most time with him.....why can't people just fucking listen? i think i'm going mad and its me with the problem!

(((((hugs))))) banana I feel like i'm eading that way myself at the moment.

Not got any advice but didn't want you to feel alone with this :(

Sorry I dont really have any advice but just wanted you to know you are not alone. it took me nearly 4 years to get my son dx. I was told he problems were just due to his speech delay and things would get better, I knew this was not the case and as a mum of 5 I knew this wasnt the case.
In the end I felt I was just going to have to get on with it until we moved house and my son started at his new school.
My sons new school is fab, the ct approached me within the first week as told me she was concerned he was on the spectrum. I didnt know wether to laugh or cry.
With the help of the ct and the school senco my son was referred and now has a dx and is getting all sorts of support has been put in place.

sorry reread that and it didnt really make much sense!

Please dont give up hope, it is so frustrating when you feel noone else is taking you seriously. I hope someone else will be along with some good advice soon x

Photocopy the diary. Summarise the appointment including the fact that the GP didn't even look at the diary. Send both documents to the GP with a request for a referral to a developmental paediatrician. Send it recorded delivery.

If you want to you can be a bit apologetic and state that you were disappointed that the GP showed no interest in your written evidence but you are so very concerned about your DS you were struggling to articulate so you are writing instead and that you look forward to receiving the Paediatrician appointment.

bananas I feel for you, I really do. I think this GP needs some updating if he thinks what you told them is normal... wtf? What IS normal is kids holding it in til home time.....when will tracers/GPs/SENCos get this thru their thick skulls (sorry, it makes me cross). However maybe all is not lost, your school nurse is an avenue still open. Personally I feel a referral from school is preferable anyway (it is school who are going to be more involved in assessment and intervention). Why not contact school nurse directly? Use your anger, convert it into positive vibes and call the school nurse, leave a message to contact you urgently. We are all right behind you....

Teachers not tracers

Starlight.... Brilliant advice. Assertiveness is key.

Also you are your child's best - and only - advocate.

Ruffle feathers now - apply for a statement from the LEA. You do not need either a dx or anyone's permission to do this.

Use IPSEA's website and arm yourself with knowledge as this is power. www.ipsea.org.uk.

Also get yourself a copy of the SEN code of practice; this is available online.

If GP is unhelpful change GP practice. No point at all in working with someone who is all too ready to dismiss the (very valid) concerns that you have. Find another GP practice and request them nicely but politely forcefully (think Reuters rather than Daily Mail type ranting) to refer your son sharpish to a developmental paed. May be quicker than going down the school nurse route as well.

Re school you need to speak to the SENCO. Ultimately you may have to change schools, even with a statement some schools simply do not want what they see as problematic children within their establishment. It seems that your son is bottling up all the frustrations of the school day primarily because his additional needs there are simply not being met. No excuse for teacher' s lack of action but some schools and teachers are simply not trained enough to be able to be fully effective in working with children who have any sort of additional need.

CAF form can be a lot of hot air.

TBH I would avoid CAF at this stage.

What starlight said.

Put it in writing; but in the way that she has outlined, better not to be labelled as the 'strung out' mum. I am not saying that you are.
Better to give the GP an 'out' so that they can save face, in case you need them later.

Follow up the school nurse and when you get to talk to her, follow up your meeting with a note to 'confirm what was agreed'. List your concerns in writing whenever you deal with someone.

It will work. You can do it. It is not fair but it is what it is and it will be worth it once you have supports in place. You're at the foot of Everest and you will climb it and it will be worth it once you've reached the top.

Bananas , do you feel yore son has an asd disorder? I would add to starlights idea by illustrating his behaviour in the diary next to the asd you feel he has. List the traits if say a child with asd and give examples that apply to you're child. My son is 4 and diagnosed now with asd/PDA , I am sure I could easily be in you're position had my GP not also had a child with asd and referred me right away. My son could also be viewed as a typical child with only a snap shot of him in the surgery. It's so difficult, video is also good, as is reports from friends and family.
Best of luck.

I also think CAF form not necessary, it's ONE referral only: developmental Paeds.

Porridge is right. You CAN do this.

thank you so much for all your replies. i have calmed down now and had my cry! i think because i am so clueless that i am not forceful enough, i did however argue with the doctor as he just wasn't listening! i also drove past another surgery on way home. a friend has scizophrenia and she is full of praise for her gp and how understanding and willing to liisten he is, whereas my doc seems to be very proactive at medical diagnosis and referral to hospital but doesnt seem willing to help in other situations. at the end of our conversation i said i know i shouldnt self dianose but i my son fits the bill for aspergers and his reply was 6 is very young to be diagnosing aspergers (is it!)

starlight i am definately going to go down the letter route. cant believe i hadnt thought about it! i definately do feel on the spot in the surgery which is why i went in prepared with my diary and he bloody dismissed it! i will also photocopy it for school and i think it's time to see the head.

thank you so much for all your replies....you fantastic lovely lovely people

walter, the introdution to my diary is a list of aspergers symptoms and example of why they are relevant to my ds. (i was advised on here to do that last week) thank you for your support

Rule no 1: Dont undermine yourself. Plenty others will do that for you and it slows the process of getting help for your DS.
(Disclaimer...unless of course, your are that oft sighted but little known phenomenon, the Munchausen by proxy, self obsessed, attention seeking mother).

From what I know, 6 is the cusp of diagnosis for Aspergers. I base that on what my SaLT says....which is that is fully matured by age 6.

This is interesting.

Banana, I feel for you.

Ive had this for TWELVE YEARS, Ive had a stroke and 2 nervous breakdowns trying to get the relevant assessments and help for my poor DC when its SO bloody obvious what she has.

All I can say is her infant school headteacher was the one that got the ball rolling, he was great, but fast forward 8 years later and NOW...NOW weve found a brilliant GP who's FINALLY put everything in plain black and white on DCs medical statements.

Im sorry but its a lifelong battle, I really feel your meltdown, SOOOOOOOO been there, done that, (had major meltdown in the middle of a supermarket once) cired and stamped to GPs, SS and everyone (only to be tolod I was mentally unsound, neurotic and threatened me with taking DC away from me), all to get help for her.

Only now is she being helped. keep at it, thats all i can say, parents of sn children are invisible/ignored/judged like anything.

And keep crying on our shoulders, we can seriously understand. xxxx

Perseverance.

That's it really - perhaps a little persistence as well.

Sometimes it is good to see different Drs at a surgery - if there is a choice. Recently had 1 GP say to me he couldn't do a referral without paed"s involvement, I phoned up to speak to another GP and listed my concerns, went to see him and got my referral.

Sometimes you have to become the type of person that you aren't naturally. Your skin grows thicker, and attitude can change. It's all part and parcel of being in 'the system'.

Although that sounds all doom and gloom, when you find professionals that speak your language, and you realise that you were completely justified in doggedly going for something, it feels good {relief?}

Can't surpass the advice Star and Meerkat have given, except to say that a whole slew of professionals who are not expert in the area you need such as often happens at CAF type meetings can lead to a lot of false alleys. I'd avoid if possible at this stage. An application for a statement is likely to yield more results. Contrary to urban myth teachers, school nurses, social workers, GP's, parenting support workers etc, etc are NOT clinical diagnostic experts.

You need just the one referral at this stage to a developmental pead, and the most common assessment for ASD is called ADOS. Part of a GP's job is to refer you to the clinical specialist for the area of concern for assessment. If yours is unwilling to do so find another one. (Sometimes school nurses can make these types of referrals).

get appointment with pead
from that an ADOS assessment.

The above is the routemap you need to follow and everything else (bar perhaps an ASD savvy salt) is wasting your time.