latest installment in the adventures of smug

[smugtandemfeeder]

DS has been assessed by the NHS now. 5 weeks of assessments. 5 weeks of every test they could think of. 5 weeks of intrusion in our home and judgements and them terrifying the life out of us by suggesting there may be a child protection issue as DS is so violent. 5 weeks of being spoken to as though I am completely stupid.

We have just had the initial review meeting and they are not going to give DS a diagnosis. The best they can come up with is "genetic predisposition to mental health problems" and "emotional problems". They have not been at all clear with their findings other than that they dont have many. They say they have ruled out autism. They are not open to PDA. They will not diagnose mental health problems in a 3.5 year old.

We applied for a statement - they said he need to be on school action, no more than that.

We are so confused. When we tell them how hard life is they seem to think we are just not coping with something we should be coping with and just need to play more with DS and rebuild a positive relationship.

They are going to put in place new stategies for us which involve playing more with DS 1:1, not doing anything like time out or anything negative. They chuck about words like "relational" and "melting pot" referring to us and our ds.

We have the official meeting next week to go through their report properly with other people involved such as preschool. DH doenst even want to come with me after the total pointlessness of what they have said so far.

I have no idea what to do now or how to play this. Do we just smile and say thank you and then go home with nothing? I cant exactly change their mind.

Isobel - the Osteocare chewables taste nice (to me :) )

They also come in a vanilla liquid, or a tablet to swallow.

Or you can get zinc and magnesium in this supplement or in Behaviour Balance

I don't know which one your DC will like the taste of best :)

I think calcium has to be taken with Vitamin D, and all of these supplements contain Vitamin D as well.

I'm really no expert in all this. I'm just reporting the advice I've had - and the effect it's had on my 3 DCs.

There was a long thread a while back about how effective behaviour balance was - so it's certainly not just me that has found it helped :)

Thanks Indigo

We did go privately to a child psychiatrist. He said DS was highly likely to have aspergers. But he kept changing his mind and looking at attachment theory and anxiety. We still have sessions we can use there with our medical insurance but as we didn't get clear information we stopped going when we had the assessment centre.

I think we need to save up and go to Elizabeth newson centre or lorna wing or somewhere.

Have managed to get an advocate to come with us to the meeting. Hoping that will help somewhat.

Spoke to another psychiatrist at the priory today who guessed DS had pda. Felt such relief. The first person to say that. He is working with DH thought so not much help for DS but what he said was helpful. He explained that DS could cope with boundaries from strangers but as he got more familiar he would become less happy with them. He told us to stop trying to help, to tell the Nhs assessment people that we could not do what they asking us to do and tell them THEY need to fix it. He said call their bluff and ask social services to take DS. No way I could do that but I think I will up nursery to as full time as possible. Priory chap made a lot of sense even if what he said was scary.

Yes he did talk sense :) I dont know if I could gamble asking someone to take my ds though I can see why he has suggested it to force their hands.

At least you have heard the PDA word from a decent proffesional! That in itself is support in your belief to make you feel stronger :)

Could you tell these NHS peeps that you think they are wrong and ask your GP for a 2nd opinion maybe to GOSH?

The Priory chap said we should ask for a second NHS opinion. We feel like we need a break from assessments now though. Just for a while. It has taken all my strength and energy and im almost broken. Things are just getting worse and worse as we try harder and harder and I have no idea why. We make imporvements in one area (sleep has improved...) and then get floored by the level DS has escalated other areas to. I simply cannot cope with him at the moment.

You all know I will carry on fighting, you all know we will probably get there in the end, but will there be much left of me by the end of it? Who knows.

[self indulgent post]

My thoughts go round and round with attachment disorder symptoms on the 'guilty' days, and I remember all the baby/toddler difficulties we had, and how hard it was to develop bonding and responsiveness with DS1. But really, I know now that he had asd symptoms even back then, which was the main trigger for those early, unrecognised difficulties.

Now, possibly if I'd been cleverer, more relaxed, had fewer hang-ups I might have overcome the attachment 'challenges' and his many anxieties earlier. Which might have made my amateur, instinctive early 'interventions' a little bit more effective. But I know the bond and the interaction, the responsiveness and communication came so automatically with dd and ds2 who (so far anyway) don't seem to have asd. My parenting probably has improved over time... but not that much!

It's much harder to develop and demonstrate 'normal' attachment patterns when a child has special needs, especially asd type impairments. And it would be similarly hard to demonstrate 'normal' conversations to someone watching communication with a hearing impaired child . I just don't know how you can 'prove' it to the team without either waiting forever or calling their bluff, as the priory psychiatrist suggested.

One way to do that might be to request they formally state which factors they believe are causing the difficulties they observe; to rank them in order of importance, and to offer specific, targetted and intensive help for the top few. Perhaps even ask them to put an x on
this scale. you can then spend a month or two working exceptionally hard on whatever they suggest, and assuming it makes little difference, make a very strong case for the NHS second opinion.

For us, professionals who 'got' it are 1. the asd/adhd family support worker; 2. the very experienced and academic neurodevelopmental paediatrician and 3. the amazing music therapist we contacted via a charity. The others were clearly trying their best, but because they hadn't really listened, they had the wrong problem formulation, and were a source of stress, a hindrance rather than a help. So... we avoid them now

I will do that Maria.

We have the review meeting tomorrow to discuss their report. The conclusion of the report is that DS does not have autism. His behaviours are explained apparently by anxiety, behavioural disturbance (What on does that mean?) and attachment problems.

What a load of nothingness.

What questions should I ask tomorrow? Can I tell them that I think their findings are of little use to us or do I need to just smile?

I agree with Maria, rather than say the inconclusive findingss are of no use, don't let them off the hook, ask for a detailed action plan to improve the difficulties they have identified. Anxiety and attachment problems will still have some sort of appropriate ?nice endorsed treatment protocols, rather than just being used as sticks to beat a parent with!

Can you print out the diagnostic criteria for ASD and ask which bit he doesn't meet?

And ask them to show you the diagnostic criteria for what they have diagnosed him with, and get them to explain why it's a better fit?

They havent diagnosed anything. They have just vaguely mentioned things. Absolutely not a diagnosis.

Asking for an action plan is a great idea. Thanks.

I got confused as well (easily done!), and thought that this assessment had diagnosed anxiety/attachment problems, rather than the private psych. Sorry. But still think you shouldn't let them think they are off the hook in terms of you expecting appropriate professional support with what they have found iyswim.

They have some actions in their report.

This is their action for managing meltdowns when DS starts trashing the place and hitting us. (They dont like the fact we take him away from the situation to a seperate room to calm down)

"Sit on the floor with DS where ever you are. Reflect how he is feeling and support him to take 5 calming breaths. Give praise and support as soon as possible when he takes a breath. Give positive feedback on him calming down and empathise, repeating as necessary. Talking about his feelings is okay and there is no need to request apologies. When he has de-escalated, give positive feedback and support him towards a game/activity perhaps using his choice board."

All that is fine in an ok world and you have managed to heed a warning sign that it is about to kick off and DS can respond to the "You are angry right now etc etc at that time. But I know when my son hits FULL meltdown the last thing he takes to is talk. He cant listen for a start as his mind and thoughts are gone and so although he doesnt attack, he can then possibly become a danger by throwing something or he will hurt himself by throwing himself around so I put him in his room and shut the door and sit on the outside till he has calmed down THEN talk and I reach him better that way. As for feelings, his meltdowns are is feelings and he is unable to explain at that point what it is that has caused it.

I think I would go with the flow and try it. Write a diary on the result. Awful to say but if someone does get injured log it, photo it and put a note that you followed report guidelines. At least it will show that you are putting their methods in practice but at the same time it is failing miserably and so you are entitled to as what happens now?

TBH, although CAMHS's problem list is missing the main issues you have, the actual strategies they suggest might not be way off the mark. The relational stuff looks quite similar to floortime (popular early intervention in USA, Stanley Greenspan?) and apart from the talking about his feelings, the calming down by positive reinforcement for deep breaths is fairly ABA in style. You do need an official strategy for the real megameltdowns as you just can't make their plan work when his processing is shut down.

Is it worth practicing the breaths at other times so it becomes worth a try in a build-up, or after the event? If they have a good clinical psychologist or challenging behaviour nurse, you might even be able to do some ABC charts and/or video analysis to see if there's any way to pick up micro-signs of impending meltdown. The 'feelings' chats would be emotional literacy teaching, at the moment you'd keep it super-basic but have a look at the incredible 5 point scale for when he's older.

Best case scenario is that you get some decent interventions now despite the wrong labels, and an accurate diagnosis (or more likely a list of diagnoses and problem areas) follows soon.

This sounds awful for you.

You are entitled to ask for (but not necessarily get) a referral to a specialist centre for a second opinion.

It might be worth writing directly to the consultant in charge and saying that you would like a second opinion and name the centre e.g. Gt Ormond St, Newcomen Centre.

Or speak to your GP and get your GP to write asking for a referral.

Just to update, we had the review meeting today and I managed to get them to confirm that they do not know the cause of DSs problems. No diagnosis. The one hour meeting ended up lasting 2 1/2 hours which is quite impressive. (I ask a lot of questions!!)

I also made it clear that I was struggling to do all the strategies they asked me to do. Ds escalates it to a level that makes their strategies very very hard. I got them to agree to help me decide which school to apply for which will hopefully help me a lot as I only have a month to apply and am far too exhausted to visit all the local schools. We are now back in the care of CAMHS but hopefully now they will deal with us like sensible people and acknowledge a problem rather than spend huge amounts of time trying to convince me all is fine.

I think I managed to ask sensible questions and to make it clear that we are struggling and that I am normally a very capable person, I have just been floored by the 3.5 years with DS!

Thanks for all your advice and hand holding.

Well that sounds much more positive. Well done Smug x

Sorry you are having this to deal with Smug.

WRT the breathing thing, DD1 is now 6.0, has a non-defined disability which affects her globally.

THE BIGGEST SINGLE BREAKTHROUGH for us, was accidentally stumbling into the 'breathing technique'.

One day, she was sooo stressed, sooo overwhelmed, I was actually frightened she would stop breathing and pass out.

I said 'DD1!! I want you to take a big deep breath!' She was so shocked, she did it. Then I said 'Do it again, DD1!', then, softer 'and again'. That's it...calm down. The visible change in her was quite astounding.

I guess it's because you can't focus on deep breathing and do something else at the same time.

I went on to use a keyword, again, not by design, but just because DD1 copes better with short instruction when she is distressed. So I use the word 'calm'. Now, even when she's really very upset (Ok, I admit, not on the MAJOR meltdowns), as soon as I say 'calm', she pauses to take a deep breath and slowly, she is able to climb back down from the distress levels she was feeling.

In fact, there are times now, when she isn't displaying any external signs of distress, but she suddenly takes a really deep breath. Then she'll say 'I just need calm down'. She's slowly making the links between her stress and anxiety and the resolution of it.

Lougle thats brilliant!

I am glad you had a positive meeting Smug. Finally you might get somewhere now with more considerate understanding from camhs :)