Got psychiatrist appointment in 1 hour

[coff33pot]

DS appt day has finally arrived

Dont know if I will get a dx today or not. Camhs did say this was the final one to see and he can dx.

Butterflies in my stomach now. Dont know what to expect. I know there will also be a new camhs woman as original one has gone on another path so not met the psych or this woman yet which makes me edgy just like DS. Hope my nerves dont kick in and I miss things out. Needs some mumsnet luck lol

Take your list of written points with you.

And write her points during the meeting.

Good luck.

Good luck.

Good luck!

Thanks for your luck but I am afraid it all went wrong :(

Not only did I not know the camhs woman suddenly there was a doctor there aswell so there were three. They took DS in on his own first. Then asked us to come in. Asked about birth, his early years, then nursery years then school years. Said if we run a business that must be difficult for us to have many friends come over. Said not so as it is a family business and one of us is always at home for ppl to visit and the only thing that is different is that we dont allow ppl to arrive unanounced as DS cant cope with it. Asked why his hair was so long (its a bob thats all) I expressed that he doesnt like his hair cut as he says it hurts. We have gradually got an inch off at a time and so now its the desired length he likes. Told them he doesnt like change ie my furniture went out the door last night for dump collection as I have new. DS wasnt best pleased shall we say in the morning as everything was different.

He tested his reading and said he is a whole word reader and he considers his reading age of 5 (he is 6) I advised he has difficulty writing but likes math.

DS obssession with guns was mentioned and asked if he likes anything else. I said lego. Asked what he makes and I said guns. Psych asked him to make a man which he said no too twice and said he will make something better and proudly produced yet another gun for the man. Eventually against DS will he did get DS to make another figure with him.

Said DS needs are multiple and out of all our concerns what would we put as number 1 that we would like to remove. I said anxiety as it results in meltdowns and DH said his communication as that leads to frustration and upset.

Went outside while they chatted and came back in to be told............

He does communicate well (they were talking on his subjects for gods sake) Plays well (was with adult and it was with food and money his fav past time) He is intelligent (not new to me) And his needs are very complex and nothing will get sorted in a hurry. No dx but will get a report for it all to sink in. In the meantime dont avoid situations that he doesnt like. The psych can see that he is happy in his own world and doesnt tolerate children invading it but will on occasion accept adult. His convo is difficult for kids to understand and basically his convo is so advanced from such an early age he was left to his own devices as such because ppl would assume he understood them due to his intelligence (so its my fault :()

Then suggested I stick to my guns and because he can relent and co operate. To which I told him I doooooooo. His answer was "well go and get his hair cut then" I told him that was a bit rude he said sorry I thought it was a problem that I mentioned and the fringe is far too long and will impede his concentration. I told him he didnt hear right then because we had cut his hair gradually! to avoid meltdown and upset.

Turned question on me then and said what about his comment do I find upsetting. Everyone was focused on me and I ran for it. I was so upset and I still am. So I suppose the answer is I am a crap mum who doesnt torture my son by taking him into crowds so he can bloody just put up with it. Should let him suffer in school and take the smashing the house up and meltdowns until I got nothing left oh and yes just take him down the road and get a good short hair cut and all his fucking problems will disapear. You dont have to answer this post its so long and I am distraught at the moment as I thought finally we would be getting to the light for once :(

oh and I have to get rid of his only friend he has because he is a boy who likes Ben 10 and guns and I have to take his obssession away from him so that makes his friend count to zero :(

sorry it was such a disappointment, sounds like they didn't address anxiety reduction at all. hopefully the "very complex" comment could be good justification for a second opinion/tertiary centre referral.

Sorry you had to go through this today. You are not a bad mum in any way, you know your DS best and have made the right decisions for him and your family.
Let it calm down, then fight for your DS

Really feel for you coff... We have been down a long road with Dd3 and there have been many times when I have felt lke the proffs were blaming me.

All I can say is keep fighting, we got a Dx last week 3.5 years after the first referral.

Do you keep a diary of times when your Ds's issues have affected him or his behaviour? I found that the proffs took more noticed of that than anything else. I recorded all instances of quirky/unusaul/challenging behaviour and how we dealt with it. It was hard to remember to keep it up but well worth it in the end.

Good luck and try to be kind to yourself.

Thats awful . I'm sorry it didn't go well. I don't think these professionals have any idea what they say has an impact on the parents, I honestly don't. I think they just wrap themselves up in a dr bubble which they seem to think gives them a god given right to be rude.

I agree with the behaviour diary. We kept one for a week. It was hard work but it seems to have helped with the professionals. I'm not sure why us writing it has more of an effect than telling them.

Is there a plan forwards for you now?

That's really shit.

But all you need from these people, and all they can give you, is a dx.

They can't do anything helpful for you. Their idea of help is recommending a parenting course or an Early Bird course. :(

Even if they were the best psych and paed in the world they couldn't do anything for you (on the NHS)

So just do whatever you have to do to get a dx. And stick with us. We're the people who can help you :)

And take a big hug from me. And a cup of coffee / wine / vodka / huge chocolate bar / hot bath.

Thank you for replying guys I dont know what to do now I am in such a muddle. I just told DH to get out the house and go have a drink because I have done nothing but attack his heels with the hoover and scrub walls and cry. He only goes out once a week but I need to yell on my own as it not doing him any good.

DH came with me and I left him in there when I walked out saying I need a break. There was no way I was going to get upset infront of DS I just dont do it. I walked out politely saying I need a break for a sec. I couldnt cope with all the faces and I was getting to the I cant breathe point.

I said to DH that I have now had it confirmed I am a crap mother and DH said just because one person thinks so doesnt mean another one will. So I havent bothered asking him what else they said as it obviously wasnt good hearing I suppose.

I just feel like my heart been torn out again. They dont even know me at all or how much I have battled for all my children through various stages. Even NT kids have troubles. DS is everything to me just like my other two and if anything is different in his upbringing is that he has had more of me 24/7 than my other two because I wasnt flexable in working then due to working for others instead of myself.

I guess I will just have to wait for his condeming report. I wont go back to him or them again. School dont listen and he is only now melting down again at home due to the stress he is under at school. It is now encroaching into school which I told them would happen. The EP suggested loads of ideas that I already pleaded with them to start but they havent. He needs help with his tripod grip for writing but they are ignoring it and he is struggling and aggressive when they make him write. I have told DH that I am not going to acknowledge anything they put in the home book now re his behaviour as there is no point as no one is listening. When he cracks and they exclude him I will just keep him home for good.

Next week I am supposed to hear about his statement but really what is the point if they all think its just a matter of me just making him do things? There isnt anymore hours in the day for me to fit in all the social learning I am trying with him.

What is breaking me is that he said that as he is only 6 he is young and can be "moulded" if he carries on shutting ppl out and the environment out he is going to grow up a very lonely man :( As if I dont know that already...

Oh, Coff33, just seen this. What a shit day you've had. Really don't isolate him from his friend, much more important than a bloody obsession. He'll have a completely different obsession in 18 months time, I bet, but maybe still the one good friend.

You really, really don't come across as a crap mother. I only saw my DS2's paed half a dozen times, they are not anything like as important in your DS's life as you are. Hang on to the 'complex' needs tag, it may be helpful. Next time tell him you like the surfer dude look and he can stick his 'short back and sides' prejudices up his arse!

That is terrible, but hopefully the report may just shoot them in the foot when they start writing and contradicting themselves. This happened with my youngest DS by an ed psych what she said at the time was not what she wrote as apparently he could be just a little behind his peers and stop worrying but he has severe complex needs and above moderate LD. She missed out the first bit on the written form.

Ellen DS came out and halted in the car park and said "no one wants me in my family" That made me mad. He had gone all through 2.5 hours of talking was impecably behaved and then had to listen to this man talk about him and now he was insecure and quite frankly I hate the man for this a LOT. Then he said "do I have to have my hair cut for people to want me?" So he heard about kids not understanding and him being lonely and so hugged him and told him he was so wanted more than everything and the man was just an old fashioned git (blush) who was jealous because he hardly had any hair at all. IF he sees him again then DS will no doubt repeat it but I couldnt care less.

The term complex needs to me is a chicken way out for the 3 of them. They said his needs were so many and so great that there isnt a quick word for it. God knows what they mean by that. Said his prematurity at birth could have been a factor but in a very mild form. ie nearly miscarried, didnt, wedged breach, two true knots, distressed and didnt open his eyes for 6 weeks so shut out his own world till he was ready.

The psych mentioned AS but said in years to come there will be individual names for all Asperger aspects like the spectrum itself? So that leaves me with me KNOWING my son is autistic and feeling like he is now a new guinea pig for the next few years till they can give him a "name"

I still have the salt assessments to go through and OT will prob not be till november and that is just a flaming parent workshop which I will go to but its now in school he is needing sensory but if they ever get round to it I am prob looking at next year before OT help him. IF they help him.

Ok I have gone from sad to mad

I just dont know where to go now. my instinct is saying sod them all and keep him close but I know that isnt going to help him for the future.

Hi coffpot

Sorry to hear it didn't go very well for you.

If it's any consolation I walked out of my DS's first appointment with CAMHS team too. You're not alone.

Perhaps private dx is the way to go? That's what I did and armed with another professional's firm diagnosis CAMHS started to take DS's problems seriously.

There are a lot of crap 'professionals' out there unfortunately - we saw many

If you are already under camhs psychiatrist can you still go private aswell? Thinking of talking it over with DH and try and contact the one in London that someone else mentioned on another thread. I know its a lot of money but I would beg borrow and steal if it finally gives me some answers.

DS didnt want to go school today so has gone in very upset and just sat on a chair in the hall. TA said hi DS ready to go in? I told her he didnt want to come today and he is edgy, she said "oh dear is mummy staying to help?" I said I will leave it with you blew him a kiss and walked. Waiting for the phone call but I wont go and pick him up. Psych said to stick to your guns so they can all see the consequence of that :(

Yes, of course you can still go private.

You did the right thing by leaving him there at school :(

I also walked out of a first camhs meeting as i got soo upset with the "parenting" comments, my son was 4.5 years old then. I found camhs absolutely awful, they dilly dally around and really dont listen to parents concerns. My son also had a very bad gun obbsession, they presumed i was showing him x rated gun games/films (nonsense). His obbsession with playing with guns has over the past few weeks gone away (thank goodness), but he still talks about guns/wars a lot. Hes 7 in a week and is now diagnosed ASD , got a statement and in a special school, not due to camhs, due to the EP from his old mainstream school who also "forced" (in his words) him to write and he hated it and couldnt do and would come home and let rip and me. Really hope the report is worded correctly for you, if its not, then phone them up and tell them to change it. xx

Well report come and I am sniveling again. I really dont think we are going to get any help any time soon that is going to benefit him so Indigo you are so right in that they cant do anything for you.

Here are two paragraphs from the report:

My understanding is that you wonder if DS has a form of Autism or Asperger's. Fortunately we did not see evidence of this, although we understand how it might be thought that this was the case. What is critical in making a dx of Autism and related conditions is not only the pattern of symptoms, but also the thresholds and the different diagnostic weight to attach to each symptom. Also the absence of an alternative explanation is also important. DS strong character and generally sensitive nature has resulted in his desire to keep things the same and safe. He likes to be in control as much as possible. This has resulted in clashes both at home and at school and is a factor that makes relationships with other children rather difficult unless they fit in with his wishes. On the other hand he demonstrated during our interview with him that he is very aware of emotions and relationships.

THEN Although it would not be appropriate to label DS as having an Autistic disorder, there are some problems caused by his strong and determined personality, as outlined above. Children with this type of temperament can be very difficult to manage when young and can become progressively more difficult unless they are helped to me more adaptable. You have already made a good start with this and continued progress in this area will lead to positive results for DS.

What about his constant tics? he has visual memory but cant remember from one day to the next to cross the road properly, his impulsiveness, emotions? yes he knows sad, happy from visual and can tell you sorry but really cannot weigh up to be sad with death of a family member, understands ppl are upset but has a so? life goes on whats for tea reaction, his scream for know reason, his need to walk on certain spots and paths to school, his sensory overload problems, the fact that he is too damn verbal but yet cannot explain his feelings or what he wants to kids or even talk about anything other than guns, the fight on the feeling of clothes, hair cuts hurt, hates washing, is distracted constantly..........I could go on and on. So in a nutshell? Pat on back mum keep on at it :(

He goes on to say that DS is a complex child with areas of difficulty that need to be helped. FFS I KNOW he is complex but I need it defined so I can help him. I am stuck as I dont know what else to help him with. I got SALT assessing him this morning and seeing her in half an hour. I suppose she will just say forget it on the help side too knowing how the school suddenly come out with the "hes doing FINE" to every bloody proff that comes there but endlessly on and on at me about him in the homebook.