I cant do this anymore........

[jayzmummy]

Im really sorry this is a long post.

Im soooo tired. J isnt sleeping at all and I am totally exhausted. Last night was the 3rd night in a week where I havent even made it upstairs let alone get into bed. Im just going on auto pilot and muddling along in my own way. I managed to get some sleep over the weekend because dh was home, but even so I am done in!!!!
This morning came so quickly....the nights are flying by now. I had a lovely day planned for J and I....first day back to school....so we were going off to do our school work and have some fun.

The world has just crashed down around my feet and now I am sat here in floods of tears. J is asleep on the sofa so thankfully he cant see me.

The postman has just bought us a letter from the Paed. His letter is disgusting and it has reduced me to this jibbering wreck. The letter is full of lies and untruths and he has ciculated it to everyone who is involved with J.

I dont know what to do anymore. I have to fight all the time to get J the things he needs and I havent got the energy or the strength anymore to carry on fighting the system.

I gave the Paed all the details about J's biological family and he has dismissed this as being hearsay!!!! WTF is he on? Why would I sit and tell him my sons birth family had so many mental health issues if this wasnt the case? its not hearsay...its fact and is very heavily documented throughout J's mediacl file....if only he could be bothered to read it!!!!

He even has reported in the letter that I apparently tore up his last letter to us.....I did not nor did I say anything to him of the sort...why is he lieing????
What I did say was I found his last letter to us distressing and that what he had written about us had tore at my heart!!!!

He states that he was unable to assess J because J had refused to attend....lies again. I told him I was not happy for J to attend when I felt we had so much to discuss and did not feel it appropraite to have J present whilst we talked about his problems.

He has even stated in the letter that he feels hubby and I were not given appropriate advice with regards to J's biological family and the posible chance that J would have a mental health problem by social services when we adopted him. He uses the phrase...."these adoptive parents" through out..." I question whether these adoptive parents fully understand what they were taking on when they took J and his brother into their care?"....that bloody hurts.....he talks about my sons as if they are worthless....I am J and R's Mom, always have been always will be.

He goes on to critise us for trying to get an assesment done by Gilly Baird at Guys and suggests that the post adoption service would in his opinion be a more suited area to contact for support. He suggests that we contact our adoption social worker who may be able to help us and assist with J's emotional difficulties.

"It would seem to me that many of the most pressing needs, including management of his reported behavioural problems at home, can be addressed quite apart from any ASD assessment. It is indeed regrettable that there is such a long ASD assessment waiting list and it seems inequitable to arrange an out-of county referral only for those families who feel the need to resort to intervention by a solicitor and the local MP."

So what the hell do I do???????

I am just so glad we had our private assessment done.....at least I know I am not some crazy fool....Im so scared....he is branding me as being some neurotic mother and is now talking about the boys adoption....I cant take this anymore.

Im sorry....I just dont know where to turn anymore.

I'm so shocked at the length of time you've had to wait. That is disgusting.

OMG Jayzmummy

I feel so and on your behalf.

How bloody insulting!!! I am so shocked that these people actually get paid to write such crap.

Hugs Blossom {{{xxx}}}

Just wanted to echo the posts so far Jayzmummy - this is absolutely outrageous and should not be allowed...the man is just a w**r to say these things to you. I am so sorry you are having to deal with this, but as others have said - we're thinking of you and support you 100%.

Also agree that you should write a letter dissecting his letter when you feel up to it, then complain officially about the twerp. Do you know any of the others who have had problems with him and get them to do the same - strength in numbers and all that?

Whatever, BIG BIG hugs to you and a big kleenex to dry your eyes. (((((((((hugs))))))))))). x

PS, thanks for your reply to my thread - I hadn't read this til after replying, so don't worry about emailing the letter to me - you have enough to worry about hon. xx

Choc....have CAT you.....will send you a copy with pleasure.
Hubby came home from work and I snuggled down on the sofa and had a kip.....feel all yucky and groggy now because I have napped. Dh is raging and has had a lengthy chat with adoption social worker. He is now coming out to see us asap to assist with our letter writing.

The only reason we have not told any of the local professionals about our private dx I because we know they will dismiss it. We had the dx done for us.....there is a long history of mental health issues in J's biological family and hubby and I were worried that J may be affected by one condition that we know two male members of his family have. Fortunatley the CP was able to dismiss the condition so it put our minds at ease.

The Paed has on two seperate occassions accussed hubby and I of making up J's condition.....hubby asked him face to face if he was accussing us of having MSBP....which he denied, but still went on about how he felt it was unhealthy that we knew so much about ASD and he felt we had read to much and researched the spectrum far to intensley. Ummmm isnt that parents do when they have concerns, especially when they are not getting support??????

I find it unnerving when someone who has a child with Atism can watch my child sit in the garden and repeatedly pick up stones, drop them in a pot and then tip them out to start all over again, and they turn around and say he has such typical Autistic behaviours and yet a Paed who is there to offer help advice and support tells hubby and I that there is nothing wrong!!!!

Will sit down in a couple of days time and start my reply to the Paed....need to get thing sorted in my head first....Im not sure whether I should tell him we have had the dx or not.

We are awaiting the final written report from the CP....maybe I should hold fire until we have his findings in writing.

What do you think?????

Referral to Gilly baird has to come from Paed. She will not see any child without this referral because the funding has to come from the referring Paeds PCT. PCT agreed to fund if Paeed was in agreeance that dx assessment should be done.....which he will not do because he feels if one child is referred then all children who are awaiting assessment should also be referred...which of course the PCT would refuse to do. Think its called going round in circles!!!!!

My GP is excellent. He has a son with ASD so he knows what I am up against.....funny how his child got a dx and a placement funded by LEA at a private school with ASD unit!!!

I really think I did it all wrong!!!! I should have held off with statementing until we had the dx.....J's statement does not reflect his needs and I am now kicking myself for having pushed so hard to get the statement sorted out.

Hubby is convinced Paed has taken his revenge out on me for the way the meeting went with him last week.....I should have listened to my GP and not become alienated by those who are supposed to be there to help us!!!!!!

AND I cant ask for a second opinion at the hospital because the other Paed is our next door neighbour so he is unable to help us out and to save our personal relationship I will not discuss anything medical with him....his wife was also J's EP whilst he was in the Early Years at school.
She is lovely and has helped me with some lesson plans to help J whilst I am home edding him. She is unable to step in professionally because J is not on her case load.....but she has read all of the reports we have had done and she agrees with the CP about the dx of autism....just a shame she cant professionally put something in writing!!!!

Thats it.....Im off to bed. Tomorrow is another day.

Just wanted to say how sorry I am that you're going through this hun

Glad you're getting support here though and hope it's sorted soon. The paed sounds vile.

Really sorry for the way things have gone for you lately crossing fingers and toes that things improve soon.

SO sorry to hear all this JM - understand your anger completely - what a w*er
I wonder if your GP could push for the out of area referral on the grounds of a breakdown in the relationship between you and this paed? It seems clear to me from your quotes that the doctor-patient+parent relationship here is irretrievable, and there can be no therapeutic benefit in your continuing to see him for J. So, given there are obvious difficulties, where are you supposed to go?
Defensive rubbish about solicitors and MPs - smacks of someone who doesn't know what he's talking about and is frightened to admit it.
Good luck - my advice re letter is to read and re-read, and get others to read (happy to look at it too, myself via CAT if you like, or ask your own GP?) to make sure it is cool cool cool but savage. There has to be point about your son's right to appropriate care and support here. (Have you already been in touch with IPSEA too?)
Hope you managed to get a reasonable sleep?

Thanks everyone for your support....nice to know i can get it from soemwhere!! My mother phoned last night to have a chat....Hubby told her i was sleeping because J isnt having very goodnights and I am emotionally, physically and mentally wrecked. Mother asked what had happened now...hubby told her and her reply...." Oh well that xxxxxx for you....she alwys rocks the boat....when will she learn to stop throwing the rattle out of her pram"!!!!! He kindly told her to sod off and put the phone down....but remember this is the woman who said I should beat J to make him behave...spare the rod and spoil the child!!!!
I crashed out on the couch and watched a whole evenings worth of crafting on QVC...nice to not have a night trawling through paper work....I needed some me time.
J slept right through to so that has made a diffrence...sleep is a wonderful thing.

I recieved a letter from the MP this morning saying he has been in contact with the PCT and will forward their reponse as and when get receives it.

Im going to wait a couple of days and get my head geared up for writing the response. Thanks to those who have offered to assist me with this.....I will CAT you.

The reason why I believe the Paed will discredit the CP's dx is because he has totally diregarded any other independent assessment that we have had done in the past. Recommendations were made by a independent SALT and EP and they forwarded their reports to the Paed and he wrote back a letter to us telling us to save our time, energy and money as it was making J's medical file embarrasingly thick!!!!!! He also said that the assessments were not carried out within context and therefore would not stand. Any further assessments should therefore be carried out within our own locality by professionals known to him.

The bloke is a jerk and I should have know better than to believe that at our meeting last week I was making some headway.

Thanks again to you all for your kind words, support and sympathy....you are all angels.

Hi Jaysmum - we have met elsewhere - sorry you're having such a dreadful time. There are a lot of very knowledgeable people on here who have already made lots of suggestions. I don't have anything new to offer but just wanted let you know I'm thinking of you. That "me" time is so important you can feel so much better after a good night's sleep or an hour doing something completely different

Hang on in there my friend!
Sending BIG hugs ((XX))

hello you two....small world isnt it.

Davzmum....glad you made it over here....you will be a massive help to all the moms with ASD children. You have the one thing many of us here dont have and that is the insight into ASD during the teen years and beyond.
Sending you a massive big hug right back.

Sylvm...hello and welcome to the world of mumsnet.

Hi Jaysmum

this has got nothing to do with this thread () but I'm in a rush to leave work now. Just thought I'd let you know that I think your Y-fronts are going to be a non-starter! Been to Dawn Bibby's shop for you this morning on the way back from Marley's appointment, searched everywhere for Y-front related products to no avail, then asked two of the assistants, which had them in hysterics! Anyway, it was the first time they'd ever been asked for that particualr item and they had no suggestions. Sorry, I always seem to be letting you down on the craft front (or should that be craft Y-front!)

thanks M....will keep searching for the bighters....I want Y fronts and only Y fronts will do!!!

Hi Jayzmummy - Just caught up with this thread and am speechless at the arrogance of this Paed .

I hope you are feeling a bit better today. I know that you will find the strength to go on fighting for your J. You sound a wonderful mum and this Paed sounds a grade a Ar*ehole!)

Hugs xxxx

I think if you state in your letter that you have DX from Dr X who is all the things you listed before then that is a message to everyone else who reads it.
How dare he say J's file is getting too thick, what does that tell him? It reminds me of one of many breathtaking stories I heard in my last job which was a research project related to people dying of cancer. One Consultant tapped the dying woman's file and said to her husband, with a smile on his face "she's had her money'e worth out of the NHS hasn't she?". He seemed to have no idea that this might be offensive or upsetting!!

Message withdrawn

Glimp.....J is to old to have a HV now....the HV we did have was bloody useless anyway....when he was small I would take him to her clinic and she would listen to my concerns about J being non-verbal and her response would be "Oh dont worry my dear...your hair looks lovely".
Its a bit of a standing joke amongst the new mums because 9 years later she stills says "Oh dont worry about it my dear....your hair looks lovely"!!!!!!!!!

She wouldn't say that about my hair!