am nearing the end of my tether, I am near giving up, about what GP has said to DH today I really need to talk (again, what a PITA I am!)

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So sorry to keep banging on to you lot but I am really just nearing desperation and I need to talk to you.

DH had an appointment with our GP today, he took DS with him as I needed a break. I actually feel a like giving up right now. I am just exhausted to the core of me.

DH's appointment was not relating to DS's DX but DS was there with him. GP did the necessary stuff WRT what DH was there for then turned the conversation to DS and the letter I recently wrote to him asking him to fast track us to see a pead etc

GP was irate and outraged that the private specialist "diagnosed" DS without seeing him, I know this is controversial, but we have always said it was not a proper DX, the specialist said the same thing. She said in her opinion "DS will definitely be on the spectrum" and that is all we have ever relayed to the GP. Bear in mind the whole reason we resorted to the private doctor is that they have lost our referral so many times and fucked us about and ignored us for ages.

Anyway GP was ranting at DH about the whole thing saying the private doctor has led us up the garden path and she should be struck off etc. He just said "I am looking at DS right now and he looks perfectly normal to me" and DH said "yes but he is different all the time and other times it is extremely different" and GP said "if it is different all the time then it is not autism, it is just behavioural problems" (which makes me feel like complete and utter shit as I really feel the undertone to all of this is that I am not doing things properly and DS is spoiled. And it just isnt the case.

I am banging my head up against a wall here and I feel every single thing is stacked up against me. I had PND - there you go - instant invalidation. Who cares I have been recovered for ages who cares how many other mothers have it, I am a nutter. I am so sick of living in this stupid fucking village where everyone is perfect and everyone knows everyone else's business and I am always wrong wrong wrong. I hate it. I want out.

Maybe GP and HV are right. Maybe there is nothing wrong with DS that time out and tough love wouldnt fix. Maybe I am too soft on him. Maybe this is all my fault and I am the root of all of it. Maybe I should just give up right now trying to get a DX of anything at all, and just handle it all myself in the privacy of my own home. Maybe I should exit the system totally. I must be mad. Maybe this is all my fault. What if all his things are indeed normal and it is me who is the problem. I dont fucking know do I he is the only child I have. I do know I am shit tired from repeating every sentence and ritual 100 times a day. I do know he spent 6 hours in the middle of the night a couple of weeks ago in meltdown and I dont know why. I do know he has sensory problems. I do know he asks me to explain everything to him a dozen times in a row. I dont know. Jesus I have never been so close to throwing the towel in. Maybe I am really wrong.

I need your help and perspective please, if you honestly thing I should let it go and assume DS is perfectly normal just high maintenance please tell me and just put me out of my misery. Thank you and so sorry.

That'll teach me for not reading the whole thread! I have been extremely repetitive!
Rather than exiting the system completely, perhaps you could try to get referrals for SALT and OT with or without the diagnosis. They usually have really long waiting lists so it might be worth asking sooner rather than later.

HIDTL - Just wanted to send some hugs that you are having such a shite time. I dont have any practical advice or experience, but I wanted you to know that you always have a ranting place here!

HIDTL, we did exit the system over the disgusting treatment we received when trying to get DS a DX, we too were batted between health and education,with education insisting to health that DS not be dx,d (i know this because the very nice PP lady told me of a letter that had gone to CAMHS from LEA and she was so disgusted at it,she said i couldnt quote her cos shed lose her job but she wanted me to know that not everyone was as callous as LEA/CAMHS were being) anyway we went private and got him a dx that way.

i then bided my time (i was very very angry at what had gone on) and gathered all the reports on DS from OT,Ed Psych,Private Psych and sent them to CAMHS,asking for a copy of the ADOS video,they backtracked immediately and dx,d him

i dont even waste my time now with GP,s HV,s and other so called experts who dismiss DD as not being on the spectrum,its not worth it,its better to save your energy and strength for the big guns,Paeds,Psychs etc, your DH sounds like a lovely supportive husband,its good that you have him in your corner.

you will get there in the end,some take the quick route,others like me and both my DC take the scenic route,but as my mum says,it will all come out in the wash!!!!

Blimey, your GP's practice sounds very odd. I've worked in mental health related issues (as a criminal lawyer) and I've never heard of GP's sending psychiatrists round like to someone's house to persuade them to admit themselves.

Very odd indeed - I would move even if you have to travel. You will not get taken seriously and this is very bad practice. If your referral has been made, then this won't hold it up. Just ring the paediatrician's office and explain.

Great to see your dh post here too. Very unusual to welcome a bloke onto mumsnet but a great way to get another insight into the problem!

Good luck

Hi all Yes DH is good and I like him contributing here as well.

Had a Family Outreach Worker here today, HV had referred her to us. I just met her today for the first time. She was very nice and very on the level and I talked to her frankly but I just feel so sad now she is gone. She noticed how much DS does not self entertain at all (I really mean that, AT ALL!) and needs everything done for him. I do try constantly to encourage him to do stuff on his own but he gets really upset, whiny, angry, meltdown, etc so I try to strike a balance between just helping him like he wants and making him do things independently. Anyway the lady who was here today was really focused on that aspect of it and as nice as she was I again got the distinct impression it is all down to my bad parenting, not being firm enough, or using the right language, or whatever. In my heart I just dont think this is the case. I am firm. I do use positive language. I dont do any of these things 100% of the time because I just assess the situation individually, sometimes I sense he can be pushed sometimes I sense he cant.

I just really feel very sad right now. I am really questioning, perhaps for the first time, what if he isnt autistic or anything. What if I have messed him up somehow. I just cant see it but I know sometimes we can be blind to what is under our noses. I have had 3 or 4 people (friends and professionals) say it is because I have been a SAHM and he has not gone to nursery, therefore he has got such a strong bond with me he feels overly dependent on me. I just cant believe being a SAHM is so misunderstood. I mean it isnt as if I have sat at home for the last nearly 3 years and just asked to wait on him hand and foot and gone through all these rituals etc. I have just loved him and looked after him as best I could. I havent kept him locked up in the house with me all the time. We go to playgroup every monday morning, I help organise it. He has started pre-school every Thursday morning. We see friends. We go to the market. We do stuff. You know we are just normal. I havent felt I have kept him wrapped in cotton wool any more than any mother would do for their child.

I am so sad. Sorry I keep repeating myself. I just cant see the wood for the trees right now. Every professional is saying it is just behavioural stuff i.e. me not getting things right. Except the private specialist who only talked to me on the phone for an hour or so.

I know I have to wait for the consultant to see him in April and it will take a long time and a result will come. But I hate feeling so confused and scared and embarrassed and criticised.

debs you are right it is very strange that the GP sent the psychiatrist round to my house. but she did! Then she said I was ungrateful for her arranging it because I did not admit myself. Oh well. What a spoiled brat I must be!

Gosh I actually (in general) like myself... I mean I do think I am a great Mother/friend/wife/individual whatever. I dont mean it in an egotistical way at all! I am saying it because its relevant to what I am about to say (pretalking!!) Although I usually am really happy with myself the last week especially I feel so embarrassed and confused and upset. I dread ever needing to go to the doctors for anything because I feel as soon as I walk in the door I have done something wrong.

And I am very hesitant to change to the next village's surgery because my understanding of how the system works is my current GP will just write on my records their opinion of me and the new GP will go with it. So I feel I would be causing a lot of hassle (as I dont drive) for very little gain. I could be wrong.

Oh about the lady who was here today - I said to her I was sorry if I came off as belligerant but I felt I had to be firm about this issue. She said that was fine and I didnt seem belligerant at all. She said as long as I seem happy to accept whatever eventual diagnosis I am given then the health professionals will be happy to work with me. I said, well, I am not going to say I will just accept "whatever" DX is eventually given - I mean I could think it was a complete load of rubbish. I could question the doctor who gave it. Any number of things. Is it just me or is this strange?

ok hidtl,relax,chill,don't mind read,don't care what they think !

Don'ttry to guess what the professionals are thinking its horrible feeling so exposed but lots of mums have felt that,you are not alone!

You have your own concerns,stick to the facts and what these are rather than whats causing them.

Being a sahm is lovely and very hard you do this for your childs benefit.

It is great you are close AND NORMAL!

If he has any issues or dx in the end THIS IS NOT YOUR FAULT!!

Other people such as gps work off facts and evidence if they can't make sense of it you may feel judged.
I hate this and think it terribly unfair.
If you are sensitive this can be hard to bear.

So STOP BLAMING YOURSELF and feeling judged,it can spiral into excess anxiety which won't help you.

stick with facts and write them down.

Treat any depression anxiety you have now and remember this makes us oversensitive to criticism.

I had a similar thing when my ds didn't want to stay in school as he missed me so much~the ht a man,was hopeless and i felt judged but i later found out he is not respected at all.

So you are his mum,you know best,but keep it simple and don't worry and obsess and worry about who thinks what.

If there is anything wrong with your ds,it will show itself more with time so relax.

And no it is NOT DOWN TO YOUR PARENTING AND BEING A SAHM!!

I'm sorry you feel so dreadful. I hope your DH is there to give you a big hug.

I don't think it's unusual at all to question diagnoses or to question the practice of health professionals. They are only people and all people can get things wrong. They might be the 'experts' in medicine/therapy/psychology etc but you are his parent. You are the expert in him. No one will ever know him like you do so keep that in mind. The thing that would concern me in your case is that regardless of the diagnosis, nobody seems to be helping you with how to change what's happening.

It shouldn't really matter (in a way) WHY he is as he is, they should be focussing on managing it. If they think you are creating the behaviour, they need to help you un-create it! If you felt some connection with the outreach worker, perhaps you could ask her how to go about getting the practical help, regardless of the 22 April assessment? It's a long time to wait when you feel so shitty! It would be good to get a referral to child psychologist, OT, possibly SALT to give you a broad view of his needs and some real, practical advice about what to DO. They will have to do this anyway once he's got a diagnosis. If they think you're focussed on getting help to manage the behaviour rather than focussed on the diagnosis, maybe they'll be more helpful?

I would ignore the judgements about being a SAHM. I went back to work full-time when DS was 6months (hated it, got pregnant, had DD!) and can tell you that the judgements would be no different if you were working. They would then tell you his behaviour's because you don't spend enough time with him etc. You can't win!

Anyway, perhaps I'm waffling now but I really hope you get some practical help and find a way to feel better about yourself as a mother. I have no doubt you are doing all you can. Give your self a little break.

Hi

I think morningsun has given some really valuable advice here.

When we are anxious or feeling depressed, it can be so much harder to take comments and to perceive them as criticism.

It maybe that people are being critical and unhelpful but it may also be (and I have found this common with medical professionals) that they are trying to be positive e.g. saying 'I'm sure there isn't a problem' which they might think helps but which actually can seem very undermining! I had this all the way through my first pregnancy when something was in fact very wrong!

None of the people you have seen have any expertise so consider them nothing more than well-meaning or ill-advised professionals.

Concentrate on getting advice from boards like this and on speaking to properly trained professionals. Above all don't take this all personally!

Your GP sounds a complete loon by the way!

If the outreach lady is really nice, then I would try to work with her. It may be that she hasn't fully got to the bottom of your ds's behaviour on the strength of one visit, but if she seems sympathetic, that is something to build on.

When dd went into hospital for 5 weeks last year, their original intention was to do mainly counselling and CBT as they thought a lot of her problems were psychological. As they kept observing her, gradually the whole treatment became far less focused on the mental health stuff and much more physical- the OT became the most important person and the psychologist faded into the background. I could have told them that from the start, but they needed to see it for themselves.

I would give this lady a chance and try not to anticipate the diagnosis. If you don't believe in it, you will naturally have to fight for your ds. But not yet.

thanks I will definitely give her a chance. She was nice and respectful of me and I noticed after the way the HV speaks to me! She spoke to me as an equal which was refreshing.

got another migraine now though it might just be the same one that got better & has now got worse, so I am going to bed as soon as I can! I just saw my neurologist and got put on a new preventative med which has weight loss as a side effect whoo hoo!! Makes a change, the last one had weight gain as a side effect and boy is it obvious!