Here are some suggested organisations that offer expert advice on SN.
BIBIC.. can Mumsnetters in the know tell me if they think it might help my DS?(20 Posts)
I have read about/spoken briefly to some other Mners whose children have used/benefitted from Bibic but have thought in the past that as DS was making good progress, that it might not be something we need to pursue. But we do struggle with behavioural issues and its been worse, particularly at school, just lately. (I posted on here last week about how dreadful he is being at school at present.)
It's getting so that school spend most of their time containing his behaviour instead of teaching him anything.. and it's such a shame as he is much more able than he first appears and was achieving. AND coping well in mainstream which felt like a long shot at first.. but had been working so well.. so unwilling to change that at this stage.
I have ordered a video from Bibic, but being impatient, I was just wondering if any of you in the know think Bibic could help us? I also would have to apply for the financial help they mention on the site because we are in no position to pay for a three day assessment.
Do you have to travel to Somerset, are there no assessments done anywhere else? What actually happens?
DS doesn't have a proper diagnosis of his 'main' condition but it's described at 'dystonic cerebral palsy' (but some of his specialists!).. (as well as epilepsy and some other more minor things..) He can't walk unaided.. uses a wheelchair for getting from A - B but likes to crawl about indoors.. or use a walker where space allows. He communicates well with limited speech.. uses his hands in very clumsy fashion.. is very impulsive and 'naughty'... no awareness (of care!) of danger.. well clumsy, climbs everything (if allowed to!) and falls off everything given the chance (!). Is actually very loving, sweet and sociable but it alienating himself at school because he has been being so obnoxious, hair pulling, pinching etc .
Do you think Bibic might be worth a try? I am happy to do anything (within reason) that will help.. but would have to balance against the other demands we have on and within the family.
SJ x (am sleepyjess.. no time to 'change back')
I have quite a good knowl;edge of BIBIC, as I was botrn right next to them, worked for the nearest Home Start and therefore laised wth them a LOT, and now Sam goes there. I hope I can help.
I would actually say yes, go for it. There is a second centre in Wales, just opended, in Usk which is where we go. If you go to Bawdrip (the village of Bawdrip musch nicer than the town of Bridgwater ), you can stay at their bungalow though.
Firstly don't feel awkward about the funding- that's why people do the fundraising, so people like yourselves can access BIBIC. That's what they WANT done with their money.
Obv. Sam's problems are minimal in comparison, but I used to help a family (that's going back 18 years!) with a girl with very severe CP who was a t BIBIC. By the end of her therapy she could drink unaided and make eye contact. How huge is that??!!
BIBIC is a commitment, but it's easier because it is so obvioulsy based in common sense. For example, sam likes to be in enclosed spaces, so at his trigger times we roll him up in a blanket to create that safe sensation. We are also reducing his hyper sensitivity to smell by slowly introducing him to new ones in a controlled environment, same with touch sensations and the like. motor control is improved with bat and ball games. it's stuff that can be integrated. I can't swear I do it every day but we do it as often as possible.
One of the other bonuses of Bibic is the nature of the visit. they only have a certain number of f amillies there at one time (at BIBIC Cymru it is 2) and you get so much attention and are made to feel so accepted and part of the family. \the tasks are focussed on your needs in the family, and priortised so things like danger perception would I expect be addressed early on.
Sometimes the videos can takle a while to arrive as the admin is understaffed (charities for you) so I would say go ahead and book the free telephone interview / chat. We weren't sure until that point but as it is the only aceptance weget, or support for, Sam we are so glad to haev done it.
Sleepy, we have recently attended a 2 day assessment in Herne Bay with Amelia. They had a mobile clinic there, but not sure how often it happens.
They have said there will be another clinic later on in the year (possible October)for re-assessments. After that it depends on their budget as to whether they will continue with the Kent mobile clinic.
We managed to get part bursary too- we simply couldn't afford the full cost.
Thanks PC and Dingle. How much is the full cost? And, if I may be so cheeky, if we were to get part-funded like you, roughly how much would we/did you need to pay, or does that vary?
Have been mulling it over all morning, and obviously a local assessment would make sense etc, ideally I think it would be sort of good to go away and get assessed.. esp. as it includes all the family (and his needs really do affect our other kids in so many ways). It would include them, grab their interest (hopefully) and make it less 'just one more appointment for Alex' IYKWIM. But obviously funding is a big issue..
I saw about the bungalow on the site Peachy.. how much to they charge for that? I couldn't see that anywhere.. and I haven't come across the part about the telehpone interview yet.. will go back on the site later and have another look.. have to dash off now.
Thanks for replying. I am thinking that its no good sitting around waiting for the problems we have with behaviour just to get worse and worse.. (and they really are making him more disabled than he needs to be!) or for something via the paediatrician to be offered (I asked about this a year ago actually when his behaviour first got challenging and wasn't this bad, and was brushed off.)
The first assessment should have cost £800 and the reassessments £450 each. we're not eligible for assistance (or maybe we are, haven't applied) but they send a pack of fundraising tips which includes a list of occupational charities... there is one linked to the industry DH is in, and they funded us £1700 AND gave us a gift of £100 a month pocket money whilst I am studying so there is funding available
Our 2 day local assessmnet cost £450 but we got 50% bursary. On top of that we are collecting mobile phones, ink cartridges etc to help fund it all!!
We are getting no SALT, other than what we pay privately for, no physio, no OT, have never really had any sensory input and Amelia's behavoiur at home is just so draining where she demands 100% of my attention most of the time. It's annoying that we have HAD to pay for it, but like you say sleepy, you just can't afford to sit back and wait.
Good luck Sleepy. ( did I read that you were doing the RFL in Gillingham???)
Yes, race for life at Capstone, on 23rd July. Must ressurrect my sponsorship thread.. or make a new one seeing as the archive search doesn't work.
I am unsure about the cost of BIBIC now.. I don't doubt it's totally worth it but we wouldn't even be able to afford half the initial assessment.. maybe a quarter at a push! And we don't have any links to occupational charities that I know of. And even if we did get the initial funds together I suppose it's not worth starting something we would be unable to carry on with, re subsequent assessments. I can't see much on the site about the funding.. it just mentions that the bursary exists.. or maybe I am looking in wrong place.
Yes again his home/school book arrived home (with him!) saying he been had been quite naughty (as opposed to 'extremely bad' most days last week so I suppose it's an improvement on that!) and that whenever they tried to get him to co-operate with any work, he just disprupted the whole class and made it impossible for Miss M to teach. I know this must sound like a classic example of a child who needs to be in special school.. but until 2 weeks ago he was doing great.. his behaviour is often pretty unmanageable at home but at school he was getting stickers and certificates nearly every week for progress and good behaviour!! I don't know what has gone wrong I wish I knew what was going on in his head.
I would so like for us to be assessed as a family and for professionals to be able to look at Alex.. and us.. as a family.. and say, this is what we need to work on and this is how we aim to acheive it! This just doesn't happen on the NHS.. or via state schooling does it! It's all so inadequate, and fragmented.
I have been going through my very extensive list of 'people we see about Alex'.. (OT, physio, SaLT, paediatricians etc) and thinking WHO the hell can I consult about this behaviour problem but there is no-one! We used to have a special health visitor but she abandoned us long ago.
Ps I think its terrible that you get no OT/physio etc. At least we are someone's books even if we hardly ever see them! (Actually since he started school, it's pretty much like they have abandoned us. He sometimes sees them at school but we don't seen them anymore, unless I invite myself in when they are in school.)
I have left a message for the outreach worker at a local special school to ring me tomorrow. She works with DS's school with advice re some of the SN children. Will see what she has to say.
They have a policy of not refusing any child on the basis of funding. you need to speak to them.
A lady from BIBIC just phoned!! She is phoning on Monday to do a proper 45 min interview to get all the info she needs about Alex.. and she has booked us into a local(ish) assessment at Deal on the 1st and 2nd June! AND she said we will definitely be entitled to a full bursary!!
Wow.. didn't expect things to move this fast..! Am really pleased. We have a load of info in the post which hopefully we will receive in the morning... but she said there will definitely be time for the bursary to go through before we go on the 1st June. We are going one day with DS1 and DD (so they can see interation with siblings) and the other day without them.. which will make it easier juggling childcare cover, one day with them, one day without.
Thanks for all the info I will let you know how it goes. Am even looking forward to the 45 minute phone interview! It's been so long since we were given any decent length of time to discuss 'Alex issues' with anyone who might be able to help.. in fact we rarely get 5 mins at appointments.. let alone 45!!
Peachy and Dingle, can you give me an idea of what the assessments, and subsequent programmes they put you on, involve? I know they are probably all about individual children so will differ a lot.. but I can't really imagine what it all involves. Am so glad to be given the opportunity to try something new though.. and can't believe we are going to get it all funded... that's so fab!
- prepare to be empowered!
All assessments start with a very lengthy history taking session, really small details that you wouldn't think of yourself. For example, we never even noticed Sam walked up stairs differently, turned out he had skipped a phase in his development. Then they did some observations, and then taught us a program which they developed after we had gone on day 2. We also saw other professionals- we see a nutritionist, SALT and educational specialist.
The program for Sam involves spending time spinning on a swing, playing bat and ball games (balance, co-ordination), being exposed to smells (sensory experience stuff), touching exercises (he ahtes being touched), rolling in a blanket, and exercises where he touches his right foot to left hand etc, part of brain gym I believe.
The phone interview I had took closer to 90 minutes after booking for 45, I will warn you! But the feeling that someone was listening- wow.
Peachy.. yes yes YES!! That is SO what I am looking forward to.. someone to listen again! I was only just saying to DH, when he was first 'in the system' it was such a relief in some respects, to let them assess him and wait for 'answers and instructions' (even tho we never got any of the former and few of the latter!) but as he has got older, the time spent seeing/considering how to help him has got less and less.. and since he started school, I almost feel as if he has dropped off the face of the earth as far as specialists of any kind are concerned!
To be able to discuss him again.. and to a fresh/interested/knowledgable pair of ears will be so great in itseld.. And I can talk for England.. esp. on my favourite specialised subject.. Alex!
And oh crikey, if they want to know the smallest details.. .. everything I have to say/write down about Alex takes forever, even things that are supposed to be the most standard things are very very complex where he is involved.. they may wish they had never heard of the SleepyJess family soon.. lol!!
Thanks for the info Sam's issues are obviously very different to Alex's, but it's good to hear about different programmes for different children.
have you not asked the woman from the special school about it? they doa free rolling assesment in the summer at the special school (sorry i am being non specific) but it is free every year for any child who comes under that schools system, and its bibic
The outreach woman, PinkKer? I have only met her once.. (at his review) and had one phone call with her and no she never mentioned anything. But everything lately seems to be a case of trying to get blood out of a stone.. do you find that as DD gets older? I am still that he missed on the WhizzKids thing when I later found out that they had loads of spaces.. too many helpers... and I put DS on the list the minute I heard about it! Grr..
So Bibic do an annual thing at The School In Question then! Maybe we could have follow up there.. Have you been down this route with DD? If you have.. and have told me this in the past .. then it will be due to my head-like-sieve syndrome that I can't recall it! I can't remember anything these days. And only when DS's behaviour went pear-shaped did I re consider BIBIC..
I will try and ring you in the next few days, it has been on my agenda. i feel like a crap friend. DD has been ill and I have been meaning to ring you for bloody days gggrrr
I will let you know. Hows about we start going to this morbid carers group togther, theyknow everything you know
I didnt know about whizz kids actually, lol
Sigh. Just one of the many things I forget to say to/tell you (re Whizzkids). It will probably be AGES before Whizzkids do another.. thingy.. (it's a day of teaching them to handle their wheelchairs better I think.. would have been fab for DS as it was same week as he got his self-propelling one.. so maybe your DD needs to get a self-propelling one before she could benefit? Am guessing.. don't know this.. it might be for the people who push them too!).. and no-one had a reason as to why he didn't get in!
What's this Morbid Carer's Group then?? (It sounds such fun! ) Something else you have told me and I have forgotten? I must admit I have often seen mention of various meetings but never taken the plunge (even tho I'm sure they can be very beneficial) because I didn't fancy doing it on my own (and it wouldn't be DH's thang )..
LOL it's funny to imagine what close buddies we could probably be if we had any time whatsoever to devote to ourselves and our sorry lives were not completely overtaken by managing DS and DD.. and trying to give their poor siblings the odd bit of attention here and there... oh and occasionally shag the poor long-suffering DHs... (You've got to laugh haven't you! )
tell me about it! I feel just frazzled this week. A bout of illness makes everything go chaotic, well more chaotic than usual
sorry i didnt read earlier that you had a place at deal, lol. Well done!
And I didn't compute last night that DD had been ill.. sorry. Is she ok now? What was up?
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