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I don't know what to do.... Any advice greatly appreciated..

(21 Posts)
Dinkysmummy Thu 07-Feb-13 11:29:53

Dinky is 5 in 10 days and we are just starting out with CAMHS/integrated services, have a CAF form filled in and a CAF planning meeting being held next week. (dinky is having 'behavioural and emotional difficulties' at school and home)

There are a few ways of looking at the situation and I'm lost....

Firstly, I'm sick of everyone saying that all the things that are being uncovered as 'issues' are down to our housing predicament. (we are technically homeless living in a hostel since April 2012) as soon as anyone hears hostel they say "oh we'll, she is 4 and it's a difficult situation".
So if that is the case why did the Playgroup say dinky was "going backwards" in jan 2012... Nearly 4 months before we were made homeless!
How come she started having full scale meltdowns at 18 months and hasn't stopped, yet we only were made homeless 9 and a half months ago.
Why does she still chew toys at nearly 5 years old. Why do alarm barriers in shopping centres send her into meltdowns. Why has she always hidden or had her hands over her ears everytime I get the Hoover out? Can all this stuff that I thought was normalish that started when she was little be discounted because a few years on we were made homeless? Sure the homelessness made the behaviour worse but it only made people pay more attention to her 'quirks'...

I'm also worried because people I have met/know with children who have ASD diagnosis say dinky is almost defininetly on the spectrum and ask me loads of questions which make me feel like crap because I didn't think they were issues! One person is wholly convinced dinky is AS or high functioning ASD that she has sent an email with all the things she has noticed and quotes with accompanying links to websites explaining the differences between boys and girls presentation of ASD/AS.

The thing is do I let CAMHS decide for themselves or do I say something because I don't want the housing issue to cloud the judgement. (I spoke to a child clinical psychologist from young minds and she was totally fixed on the housing thing even though I told her most of the things I was talking about started months/years before the homelessness.)

What will CAMHS make of it if I bring up what I have read from my friend? Will they think I want an ASD diagnosis.. Because I don't think anyone wants there to be an issue with their DC, and I know full well that just because it seems to fit doesn't mean it will be the dx...

I need some friendly mum advice.....

kinkyfuckery Thu 07-Feb-13 12:29:20

Tell them as much as they ask about your housing situation. Don't lie, but don't try to find 'explanations' for possible behaviour (I am incredibly guilty of doing this!)
If it helps reassure you at all, in my experience, people always try to find explanations or excuses for things. I have spent over 5 years being told there is nothing 'wrong' with DD1, that she is highly intelligent and just needing pushed in the next stage of her life (playgroup > nursery > P1 > P2 etc). It took me years working alongside behavioural support workers until one finally said "You need to have her assessed by CAMHS, there's nothing else for us to try." It was terrifying but such a relief that someone finally believed me!
We had our first appointment with CAMHS last November and I felt like shit, as they made comments like "Oh, you're obviously a worrier, it's no surprise she is anxious" and "She was very young when you split with her father" angry I felt like they were making excuses and felt we would get nowhere. However, they referred us to a Primary Mental Health Worker, and asked me and the school to complete different questionnaires and reports, and despite me originally dismissed, the facts are there in black and white, and we are due in 5 days to go back to CAMHS for diagnosis. MHW is adamant that she will be diagnosed with combined ADHD. She is also off the charts for ASD and SPD which we will review after starting treatment for ADHD.

My point (I do have one! lol) is that it is very common to have people try to make excuses and "buts" for things, but YOU know your child. If you have concerns, you owe it to your child to push for assessment. They will look at all the excuses and reasons, but when the facts are there, they can work with them, and - whilst we sometimes have to fight for it - you and Dinky will get the help you need, and deserve.

Dinkysmummy Thu 07-Feb-13 17:25:55

Thanks for your reply....

I feel like a shit parent for not picking up on all the other stuff before now but she is my only child, and I didn't have another kid around to compare her with.

I will push and get her assessed properly, they can only say yes or no right...

I hope the diagnosis goes ok and you can get somewhere with the ASD/ SPD assessments.

Thanks again

2old2beamum Thu 07-Feb-13 21:05:34

Look my lovey I know nothing about ASD/SPD my heart goes out to you and Dinky,what is this country coming to, putting you and Dinky in a hostel. Of course this has nothing to do with her problems they were there before you were made homeless.
I think kinkyfuckery's advice sounds excellent.
PLEASE do not let the professional bastards get you down.
You are not a shit mum you are her Mum and you know her better than anyone.
Take care and keep in touch. Wish I could help more.

Dinkysmummy Fri 08-Feb-13 19:13:24

Thanks 2old2beamum x

MareeyaDolores Fri 08-Feb-13 22:39:51

Be super-clear about your chronology of symptoms, perhaps put it on a little handout grin with social problems / housing issues chronology underneath. Timelines are very effective (who says visual aids are for ASD dc; I find they're much more useful for professionals wink)

And while you're there, point out which of those problems the hostel has made worse, and by approximately how much... cos if this is minuted you can submit it to housing and it might help your 'medical and social need' priority banding / points score.

Dinkysmummy Sat 09-Feb-13 10:07:49

grin thanks I love the visual aids for professionals! wink

I have been trying to work out exactly how things progressed, I think I will have to write it all down. I have some development sheets from the childminder, unfortunately she didn't do them frequently so there are a few at random points between age 1 and 3.5 and then one when she left at 4 and a bit.

Thanks for your advice smile

Badvoc Sat 09-Feb-13 14:17:26

Yes, do try and write it all down, from when you first had concerns...sounds like from about 18 months?
Also do try and get anything from the nut awry/pre school in writing.
I am very sorry to hear of your housing situation.
As 2old said, how on earth in the 21st century in the uk that babies and children are housed in hostels and B and Bs? sad

Dinkysmummy Sat 09-Feb-13 23:04:32

Thanks badvoc,

I've been debating (with myself mainly) about contacting the Playgroup as dinkys key worker was more than useless! She said she hadn't filled in dds learning journal much 'because it wouldn't be fair' on dinky.
Then just before we went into the b and b she said that I should keep dinky off Playgroup for a few weeks. This might have made sense if she went more than 9 hours split over 3 days! I ended up arguing with her about the need for routine and the stability of having one place the same, being better than having dinky couped up in one room for those 9 hours a week. Sure I could have taken her to a park or whatever but all her friends were at Playgroup.
I think I'm finding that the Playgroup held a lot back about dinky and so have the school. I don't see why they don't tell me what goes on when she is away from me... She has a contact book now at school and I have had to ask for more than 2/3 words after 10 days.

It is what it is... We will be housed and things will be better on that front. I just hope the school haven't got their hopes up that moving will suddenly cure dinky of her 'issues'.

Badvoc Sun 10-Feb-13 09:03:08

That all sounds dreadful!
Definitely ask them from what they have and write down everything you have just told me...that the key worker had not filled in her journal...which as I understand it is a legal obligation for EYFS?
You could write a letter to the nursery asking why the journal has not been completed?
If you post in education you could ask about the legality of what they have done?
Best of luck x

Dinkysmummy Wed 13-Feb-13 10:44:39

The CAF meeting was yesterday and dinky has been refused all services as they have taken the line that it is all housing related.

I knew this would happen! But she is still on SEN at school action because of her behavioural and emotional difficulties and will still see the play therapist. However the deputy/senco is suggesting that as soon as we are housed she will be fine.

I'm so angry that they haven't listened to the word before

So we are at square -1

sad

Sunnyshores Wed 13-Feb-13 13:09:01

I am so sorry for the stresses you are having, blaming any issues on housing or any other environmental factor is just sheer laziness and cost cutting.
Have they given you a medical diagnosis then, presumably they think it cant be any form of Autism as that wouldnt be housing related? Get something in writing saying "after x months of living in permanent accommodation dinky's issues should disappear". Otherwise they will never look for underlying causes.

wasuup3000 Wed 13-Feb-13 13:30:49

Ask for a 2nd opinion - write to the medical professionals involved tell them in your opinion they are wrong and you insist that your child is assessed for ASD/developmental issues??

Sunnyshores Wed 13-Feb-13 16:21:47

When we first realised there may be problems, I went to my GP about DS and he said he'd refer me to CAMHS or a child pedeatrician (sorry spelling!), anyway we went straight to the Child Ped who saw us regularly, but also referred us on to various assessors and therapists. Just wondering if there is an alternative route to CAHMS?

Dinkysmummy Wed 13-Feb-13 16:38:13

There probably is but because most of it is behavioural they say CAMHS but CAMHS won't take her because of what the senco said in the CAF planning meeting.
I could probably go back to the GP but they are useless, they had no problems in agreeing to refer to CAMHS but then the gp office held it up for 3 months! I porbably will go back.

Another mumsnet mum clued me into PDA. which makes so much sense, and in a referral made by the school to a family link worker she listed half of the criteria for PDA! at least I have it in black and white!

lougle Wed 13-Feb-13 16:40:33

Dinkysmummy - can you play the long game? Can you use the reports from CAF to push forward the housing - say that as Dinky is having such obvious issues at school related to the housing situation, it needs urgent resolution and therefore you meet the prioritisation threshold?

Once you are rehoused, you can give it a few weeks/months and say 'goodness....DD is still exactly the same. We need to revisit this....'

That way, you get what she needs on both fronts?

AgnesDiPesto Wed 13-Feb-13 16:45:45

Ok so use the backdoor and apply for a statement of SEN (see IPSEA website standard letter or ask IPSEA / NAS education line for help)

You simply apply for the statement on the basis your DD has unmet needs and is not making appropriate progress. Look at SEN Code of Practice. You can say needs specific strategies for social communication problems, behaviour etc etc

Assume your request will be turned down on basis needs are being met at SA+. Don't worry about that as you then just appeal. Getting a right of appeal will be a good thing as you should then be eligible for legal aid for the appeal. Legal aid will pay for private reports eg EP, SALT, OT etc and a Solicitor to do case for you.

The council will have to defend the appeal which means they too will have to send in professionals to check it is not ASD etc

Has the council given you priority / extra points etc on housing list?
Are you getting DLA?
If not go to your CAB or local carers charity and get them to help you

Dinkysmummy Wed 13-Feb-13 18:14:00

Wow,

Can you tell I'm a sen newbie? wink

Housingwise, the CAF planning panel said there was diddly squat they could do about our housing, the council won't take any letters from outside agencies into consideration... So it is wait your turn... It is done on bandings and we are in A band going into A+ in April, we shouldn't be here more than another 5 months. Which doesn't seem long as we have been here 10 months.

I will have to wait and put up with no support until we move and then say.. "oh dinky hasn't changed at all! What a suprise!" although knowing them they will wait and wait and wait until it gets to a year down the line and they scratch their heads and say "oh, maybe it wasn't all housing related if she is still the same now"

Agnesdipesto
Wow, I didn't realise there was a back door!

We aren't getting DLA. Don't I need the doctors (who are bloody useless at the best of times), and the school (who believe its all housing related) to agree that she needs extra support? I don't think either would be helpful if I made a claim...

Thank you all for your support thanks

Dinkysmummy Thu 14-Feb-13 18:05:35

I went to the senco today and told her I wasn't happy at the outcome of the CAF. I also gave her bullet points of PDA and she agreed that dinky meets every single bullet point. She is going to look it up and ask the play therpaist for her input and get more info from the teacher and go from there.
She says it still might not be the case, my point was, even if it isn't she has agreed dinky hits all the criteria so it's worth looking at even if it turns out not to be. The senco agreed and said they would have a look at pda strategies during inset day Monday after half term and Apply them when we come back and see if it makes a difference to dinky and the teacher.
I contacted PDAcontact and spoke to someone, they agreed that dinky sounds 'classic PDA', and gave me some advice.
I feel I have my foot on the first rung of a lofty ladder! The main thing is that we are on a rung and not flailing for it.

You never know I might get used to the alphabet soup one day.... (BESD/ASD/PDA/SEN/SENco/SA+/FLW/CAMHS/DLA/ ect) wink

AgnesDiPesto Thu 14-Feb-13 18:16:42

You do have to put drs details on the form I think but they dont always contact. You can get anyone to write supporting info eg a friend (helps if a responsible job), a childminder, the B&B owner etc
You can also ask for your child to be assessed by the DLA Dr instead of putting any supporting info
For DLA its about what the needs / difficulties are, not what has caused them. You don't need a diagnosis.
Cerebra do a useful guide for DLA you can get ideas from
Sounds like the SENCO may be happy to write something for you on the supporting info page.
Our HV was so lazy she told me to draft something and she would sign it shock.
If you have a good relationship with the SENCO you could say you are going to apply for a statement as even if you don't get one you feel the assessments that would come with it will be useful to deciding what is going on.
Will the SENCO agree to your child be seeing by the Ed Psych - all schools get x EP days a year and you could ask for the school to refer to EP. You can also refer to EP yourself.

AgnesDiPesto Thu 14-Feb-13 18:23:04

Another thing you can do is write back to CAMHS and summarise their advice - which will be useful for any future tribunal

eg "I just want to confirm your advice that DD definitely does not have ASD / PDA or any other medical condition and you are satisfied her behaviour is purely related to her housing situation and will resolve once we have moved. On this basis you do not intend to offer any behavioural intervention prior to our moving house, which is not likely to be for a further 5 months."

Often when you quote advice back and they see it written down and that you are keeping records then professionals realise they may be caught out by their 'wait and see' policy.

Does she have any speech issues? If so cerebra do a private speech therapy voucher scheme.

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