Appontment on Tuesday with consultant paed to decide if DS will be refered to CAHMS...kind of worried!!! (sorry long)

[mysonben]

It has taken us a year to get to this point, from the first concerns raised by nursery last october.
Some of you already know this, but here is a recap of where we are now:

DS is nearly 4, he has been in the system with SALT since age 2.
His community paed was the first one to mention ASD back in april. Although we have felt for a long time that DS was 'a bit different'.
DS has made very good progress regarding language in the last year (but he still needs SALT and has recently been accepted in a language unit), he usually gives quite good attention with professionals and rarely shows behavioural problems during appointments.

Of course it is a different story at home where he insists on the same rituals for weeks on end, likes to ask the same questions for months, and has limited play and interests (vehicles and dvds).
His anxiety goes through the roof when faced with some unexpected changes.
DS also is difficult with eating hard foods, getting dressed/undressed and bathtime.
DS has a few sensory issues with loud noises and a few obvious vocal stims.

At nursery he struggles to join in interactively in group activities (although this has too improved when compared to last year where he played solely alone).
He tries to join in now, and does 'parralel play' we were told by Senco.
DS's reactions are often imature when compared with his peers.
He struggles to follow instructions that are not directed specifically at him, and gets anxious when asked questions or put on the spot socially.
Although his speech and understanding has much improved he has great difficulties forming clear sentences and hold a simple conversation.

So DS is to be reviewed by this consultant paed. who hold the 'key' to the referal to Cahms.
And we are worried that he might say 'no your DS's issues do not warrant asd dx assesment, let's wait and see,...'
We have been waiting for DS to 'snap out' of his issues and quirkiness for two years now.

DS is also having an assessment with the ED.Psy at nursery in two weeks time.

I would love to hear from the experts 'your ds has not got asd', but at the same time i know all is not well with DS, i want some answers and i'm scared to be fobed off, and worried about no help or support being given if no asd dx, iyswim?

I really hate all this waiting and not knowing what will happen.

[claw3]

My ds has been referred to CAHMS, sounds very similar to your ds and has no dx.

He was also referred to TAHMS (another branch of CAHMS which work with the school) we had that appointment last week.

Support and help should work on his needs, not a dx. Although i will be the first to admit, a dx seems to make it easier for the 'experts' to understand his needs.

Try not to worry about a dx and just focus on what your ds's needs .

[catkinq]

we are in the same position (have ds1 and dd referred to pead this week) and I can understadn how you feel. It is hard to focus on needs when no one will take you seriously and help with those needs without a dx which is how many people seem to be these days. It is especially bad when they are hard at home. Most of the advice and interventions for difficult behaviour - from "time out" to all the "spend quality time with them" to "all eat together as a family" don't actually really make sense if you have a child with ASD as they are quite happy on theri own, aren't hat bothered about quality time woth anyone and certainly are no tgoing to eat somethign just becasue everyone else does . Looking at my ds I can see that the problem he has is purely and simply that perceived unfairness and sudden changes make him feel uncontrolably bad and so he becomes uncontrolable. Puttign him on th enaughty stair will not change this but I cannot get anyone to tell me how to cope with him (ie how to stop him hurting himself or anyone else) as no one will believe that a 7 year old can be that bad and I'm just told to "line some smarties up adn take one away each time he gets cross! This is why I want a dx.

[mysonben]

Thank you
My main concern is that as time goes on it is becoming clearer that DS will need a fair bit of extra support when starting reception.
So far we have been told by school Senco that DS will be put on Early years action+.
Really unsure as whether this will be enough for him, still unclear if we should apply for a statement.
That said it seems statments are more readily given when there is a dx. At least they take you more seriously ,don't they?

I'm not a great fighter and from what i read on here, it is a fight to get decent statements from LEAs.
I don't think i could handle all this statment non-sense without a dx and professionals to back me up.
I'm easily beaten unfortunately...i wish i was stronger.

[claw3]

Mysonben - Its so frustrating isnt it. I often find myself having to try and convince the 'experts' there is something wrong with my ds, which is a very uncomfortable feeling.

To 'outsiders' and on paper it looks like my ds is a spoilt brat who likes his own way, with no discipline and that all his problems are due to bad parenting!

Unfortunately it is a fight and you really do have to fight your corner. You will be strong and find the strength when you need it.

What are hoping CAMHS will do for you and your ds?

[mysonben]

Thanks Claw3 for reply,
In an ideal world as you said 'support and help should work on his needs and not a dx', but more often than not it doesn't happen like that does it? That is the impression i get when i read other MN posts about help at school and statmenting.
I fear that if DS doesn't get a dx, and he gets problems when starting school not much will be sorted as they will look at it and think "well he didn't get dx so he can't be that bad" and " his mother is just an overly worried neurotic,..."
I want to get to the bottom of it and don't want to hear anymore "he'll grow out of it soon or later" or "have you tried the naughty step?"

[catkinq]

I've found that the school are happy to bend over backwards to help children with a clear cut and preferably visually obvious problem but when a child simply does not respond to the one size fits all discipline and childcare stance (ie that x, y and z will work) then it is all put down to bad parenting or "incorrect personality" on the part of teh child. So you get nohelp, just get told that she needs to "learn to respect trachers adn not be so bossy". The SENCO at dds school is great actually - it is the rest of them

[mysonben]

Sorry Claw3, cross-post. Thank you for your reassurance.

Well to sum things up i hope CAHMS will be able to pin-point waht is wrong with DS (i hate these words) i want them to give us some certainty over the question "is he asd or not?"
I want answers, i'm hoping for a name to his problems, so that he gets the right help and that people who will be involved with him in the future can understand and recognise his needs and issues without quibbles, if that makes any sense?

Sorry about my rambling, i get a bit emotional when talking about dx, which seems like a key to me.

[mysonben]

That's it Catkinq, your last post is what i'm afraid of.

[claw3]

Mysonben - You are totally right, it doesnt work like that at all, without a dx schools etc dont have anything to blame the behaviour on.

I dont know if this is of any help to you or not, but i had an appointment with TAMHS last week at the school. It seems to me their 'job' is to offer advice on any behaviour that you are not dealing very well with.

It worked out quite well as the school were trying to say that my ds and ME needed their help ie my son is spoilt brat with no discipline (in so many words). TAMHS basically asked me how i deal with certain situations etc and told the school that i had great strategies in place and was coping very well, they will be going into school in future to advise school how to cope with ds.

Im not sure if this is everyone experience of CAHMS, but i got the feeling it is aimed at providing parents with strategies on dealing with behaviour, which is sitting on the step, firm boundaries etc, which is not very helpful if you already have this in place!

[mysonben]

Thanks for sharing your experience with TAHMS.
It is always helpful to know what different teams do and offer to help.

I will update on Tuesday after we have seen the consultant paed.

[claw3]

Good luck

You mentioned about getting dressed/undressed my ds has very big problems since starting school and coping with PE and group situations. He also has food issues, It might be worth asking Paed about some OT help, she is the only person i have met to date, who has well and truly understood exactly what im talking about.

Let us know how you get on.

[AttilaTheMeerkat]

Hi mysonben,

Re your comments:-

"My main concern is that as time goes on it is becoming clearer that DS will need a fair bit of extra support when starting reception.
So far we have been told by school Senco that DS will be put on Early years action+.
Really unsure as whether this will be enough for him, still unclear if we should apply for a statement".

Have a look at IPSEA's website; this will give you more information about the statementing process as a whole and what to write if you decide to apply for it (and I strongly suggest you get the ball rolling now on the Statement application).

I would make a personal application for the Statement now particularly if you feel he will need extra support come reception. Do not leave this until he starts school. School Action plus is not legally binding (unlike a Statement) and this can be very limited in terms of support. There won't be any one to one support given.

"That said it seems statments are more readily given when there is a dx. At least they take you more seriously ,don't they?"

Statements can be obtained without a dx, don't let the lack of a current dx stop you from applying for one. You know him better than anyone else and you know he will need a bit more support come reception, not just to say throughout his schooling.

I'm a bit further on in the school system than you are so am writing the above from the benefit of my own experience. Also I have seen too many children languish on SA plus when they could really do with having a Statement in place.

I wish you well in your appt with the cons paed tomorrow, btw can't he make a definate dx rather than having to go through CAMHS?.

You are your child's best - and only advocate.

[AttilaTheMeerkat]

www.ipsea.org.uk

[magso]

Ds had to be seen by the camhs team before the paed (who had seen him since rising 3) would diagnose autism. They decided on the day ( I think they did a cars scoring) that he obviously has autism and did not need further assessment. (He was 7 by that time what with lost referrals and waiting lists and already had a statement and sn school place) Any way the next appointment was to ask how cahms could best help us. I asked for continance support, ot (for sit), training and behavioural support. I later asked for respite/ DPs. They were able to organise some of this! This came as a suprise after literally years of struggling unsupported by the system. Oh we also got an appology for the long wait!
So if you get a cahms appointment, perhaps a list of your concerns and a list of the services and support you might seek would be helpful. They seem to be able to make things happen.

[likeacuppa]

NAS say (something like, quoting from memory)'do not let anyone fob you off with saying that your dc has "traits associated with ASD" or "ASD-like behaviour", a dx is the key to getting the help and support you need for your dc'. I think that's pretty much right. Schools and teachers have so much to think about and so many children with so many different needs they really do need something definite and authoritative like a dx to make them pay attention to what our dcs sspecifically need. And, particularly, I feel this really strongly, to stop them labelling our dcs as naughty and disruptive. While the dx is one kind of label, it is one that we can use -- the other kind is a stick to beat us and our children with. In an ideal world we wouldn't need all this, statements would be unnecessary etc etc but in the meantime I would hold out for a dx, even though no-one ever wants to hear those words.

[magso]

Agree with cuppa! The absence of a full asd dx made life very difficult trying to get a statement for ds. MS School refused the support of the asd team and excluded ds regularly. He had a dx of asd traits and GDD at 4 but was turned down for statement assessment initially. Then they tried to fob him off with 8 hours support in ms because he wasn't in their words 'fully autistic'!!. Getting a full dx actually made little difference to school by the time we got it because he was already in a specialised school - but it made that journey so slow and hard!! (but our lea is infamous!)If I had that time again with todays knowledge I would fight tooth and nail for an early dx!

[mysonben]

Thank you for all the replies and good advice.

A few months ago, i hated the very idea of a dx, now i see it as a stepping stone for extra help, more understanding and acceptance from others involved with DS.

We are waiting for that ED.psy. assesment in november followed by a review with Senco and nursery teacher. I will discuss the 'statement issue' with them, and according to what we hear then, will apply personally for a statement, will not wait for the school to do it and waste precious time.

In the meantime, i'm really hopeful that the extra salt DS is going to get soon in the language unit will have a much favourable impact.

On the subject of learning difficulties, at what point do we start to talk about LD other than delay?

Thanks.

[magso]

Technically I think it is meant to be when children start school. Ds changed from DD to LD at 7. Here I think it is common continue (past 5) with DD untill a Dx is arrived at or ld is decided on .

[mysonben]

Thanks Magso.

[lou031205]

mysonben, are you going to RHCH? I might know which consultant you are seeing. Our consultant is fab. I wouldn't wait til November, for statement, tbh. It takes 6 months in all, so if everything went smoothly you'd know what your DS would be getting at school by June - too late. Apply yourself, now, then you get right of appeal.

We applied on Sept 1st, and got a letter agreeing to assess on Friday.

[mysonben]

Lou031205, no we 're not going to RHCH.
Although all the appointment letters and reports have got their address on the back, we are being seen at the local bitterne health clinic atm.
Can i send you a personal email so i can tell you which consultant we are seing?

Thanks.

[debs40]

Mysonben

Just wanted to add good luck. I can't believe you are still waiting for a referral just to be sent to CAMHS. This is taking so long for you.

We are just one step ahead of you I think having been referred to CAMHS and then through their gatekeeping to the Social Communications Disorder group. However, I have found that everyone (all health care professionals) has been prepared to listen to what I say about what happens at home so far. That might be because DS is older (nearly 7) so some of the behaviours stand out a bit more as being age inappropriate.

Most have wanted to try and get a full, rounded picture in all settings so I wouldn't worry too much. My problem has been with teachers who seem to have no idea about what this is all about. Best to tackle that side head on and in good time for school

Hope it all goes well

[mysonben]

Thanks Debs40 for good luck.

I know it has taken so long for things to be moving, although none of the professionals denies that DS has some problems and issues, i also hear a lot "he is still young let's not rush things too quick!"

But it's all appointments the next few weeks, starting with consultant paed tomorrow, then Bibic therapist on wednesday, then Language unit admission visit the following week, and the week after that assessement with ED.Psy and meeting with Senco and teacher.
Phew.....

[mysonben]

I have got a few videos of DS playing and 'reading' a book with me , on different bits he shows some very highly 'suspicious' behaviours, like constantly asking the same question for 15 mins and screaming if i tried to change the page of the book where he was focusing on the comb that the mermaid was holding.
Another which shows him lining up his cushions and stacking up shoes and getting distressed and angry when his lines and piles were didturbed.
And a couple showing him playing in his own unique repetitive way with his cars, also flicking the wheels and staring at them.

Would you take these videos along at any appointments like the one tomorrow? as DS behaves relatively well with the experts, just to show them that he is different at home.
I don't want to appear pushy though!

[lou031205]

Of course!