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CWDT Is this usual?

12 replies

Dragzena · 30/11/2016 10:30

Sorry this is a bit long!

My son has quite complex disabilities and goes to a special school. At his annual review a few months ago the school family liaison worker suggested I apply for direct payments for him to have an assistant to give him the chance to go to holiday clubs for swimming and things. She made a referral to the children with disabilities team and yesterday afternoon a social worker visited me at home.

She asked lots of questions, requested copies of consultants/therapists letters and took down a lot of general information about our family. All fine up to this point. We then got on to the subject of my son being a terrible sleeper - as background - he has seizures at night that wake him and make him very distressed and it can take up to 90 mins for him to resettle. As he has up to 3 seizures most nights this can mean he has very little rest.

She then told me that "a good routine at bedtime is the key to children sleeping so I will make a referral to our sleep team. They can teach you how to implement a routine so he sleeps". I was a bit taken aback as it's seizures that cause him to wake, not a lack of routine. I explained this again and she told me I needed to be "open to accepting help to learn to deal with behaviour that causes sleep problems" 😕

She then asked to look around the house, she looked through the kitchen cupboards and fridge and then looked at the bedrooms. My teenage daughter's bed was stripped (bedding in the dryer) and she questioned me about whether she had bedclothes. I explained that they were in the dryer and she asked to check. She also commented that the room appeared 'a bit chaotic'. It's not the tidiest, make up pots and books all over the table, jumper over the back of the chair but honestly not bad. DD can get a bit messy but she had actually cleaned her room on Sunday.

She told me she will fill in all the paperwork and let me know if they feel I need "intervention from family support".

I am left feeling quite judged, she kept reassuring me that she has lots of experience with children with disabilities so knows exactly what needs to be done but I only agreed to this assessment in the hope of getting someone who would take my son swimming Etc. I phoned the school this morning and they have insisted the referral was only for the direct payments, they reassured me they have no concerns whatsoever about my son's care or wellbeing.

I have had lots of therapists etc visit my house over the years and no one has ever suggested that there is a problem with how I do things. I generally keep the place clean and tidy and as I have an older boy with ASD we are quite organised with good routines in place. I did try to explain this but she talked over me and kept repeating that she had lots of experience so would be able to give me good advice.

The whole experience has really unsettled me, I keep thinking about it. Is it usual for them to ask these questions and inspect the house? I wish I had never agreed to have them come round.

OP posts:
Santaseasonalfireplace · 30/11/2016 10:35

I would be absolutely RAGING. It's people like this that put families off asking for help. I'd write a fucking rocket to the head of her division about her intimidatory and overbearing attitude, her insisting on going through the bedrooms and then the DRYER and finally most seriously, her inference that your son's sleep problems are as a result of your poor parenting choices, not his well documented seizures.

Ruin her Christmas, the cunt.

zzzzz · 30/11/2016 10:42

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Dragzena · 30/11/2016 10:43

Honestly I feel like ringing her up and telling her to forget the whole thing, I suppose I'm feeling quite vulnerable at the minute as my son hasn't been well so I am severely sleep deprived but this is not what I thought would happen 😕

OP posts:
zzzzz · 30/11/2016 10:48

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zzzzz · 30/11/2016 10:48

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Santaseasonalfireplace · 30/11/2016 10:50

No don't. Take a deep breath, have a brew, and then find the head of her department and rip them a new one.

Dragzena · 30/11/2016 11:00

We have an appointment with the epilepsy consultant at GOSH again next week so I will tell him and ask for his help, he is lovely and very supportive.

Thank you both for your reassurance, I spent last night worrying that I am delusional and actually not doing a good job. Usually my OH gets up about 4.30 so I can get a couple of hours decent sleep but this morning I spent them cleaning just in case, even though we have just decorated downstairs and the house looks better than it has in years ☹️

Now I am off to bed for a couple of hours before he gets home from school.

OP posts:
Dragzena · 30/11/2016 19:26

An update, I spoke to the CWDT this afternoon and apparently if I want any direct payments I have to agree to a full family assessment and regular visits. She also said I "need to be co-operative and allow them to do what's best for the family. If that is family support and sleep assessments it is imperative you at least try."

She reiterated that she has lots of experience with children with disabilities and having spoken to her manager today they have several other suggestions.

I have told her I don't want to take this further and she is not terribly happy. She said she will be going to school to determine what intervention they feel we need to ensure my son is well cared for. ☹️

I have rung the school and left a message for the family liaison worker to ring me. I feel totally let down by all of them. Never again. 😞

OP posts:
Frusso · 30/11/2016 19:47

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zzzzz · 30/11/2016 20:01

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Dragzena · 30/11/2016 20:50

I am drafting a letter to withdraw from the whole thing. I found her extremely patronising today. Every time I tried to say anything she spoke over me telling me about her experience.

I feel like she has decided I am neglectful and not very intelligent. I will speak to the school again tomorrow and then send a letter to CWDT.

Thanks for your help.

OP posts:
Santaseasonalfireplace · 30/11/2016 23:29

That's awful though as it could mean that you miss out on the direct payments! Could you speak to disabilityUK? Or similar? I've been cross all day on your behalf!

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