Back from Wonderful BIBIC

[Merlot]

Just a quick update, as feeling a bit exhausted from our 3 hour journey back from BIBIC. As most of you know, ds2 (19 mths) has no dx yet, but is globally delayed, so we took him to BIBIC to see whether they could give us any hints and tips.

Well we had a great time at BIBIC - it really was worthwhile .

Dh is a complete convert. Took him there practically kicking and screaming (not joking, we had a huge row in the car down there) and now he's good pointing', good posting', `good everythinging..... to his hearts content . He is also going hammer and tongs at the Makaton to catch up with me!

If it did nothing else it allowed us to have 3 days pure concentration on ds2 and his needs (and for dh to realize how complex they are), but it was so much more than that....

They were professional, totally supporting, loving....and ds2 was completely at home with them.

The integrated approach is fantastic and really makes you feel like your being listened too - none of that saying the same stuff over and over again. They also obviously have time to read your questionnaires before hand as they refer back time and time again - unlike what seems to happen at our hospital, where you're lucky if they can find your notes let alone read them up front!

The diet stuff was awesome - I'm never drinking coke again, let alone either of my ds's!!

Thanks so much all of you that recommended it - it has given me real focus

[Jayzmummy]

Oh Merlot I am so pleased....I just knew it would be of some help to you.

I know what you mean about the coke!!!! My boys condem the stuff and DS1 is forever spoutting off to his friends about the alternative uses of Coke..especially the not so nice ones!!!

[sylvm]

Glad it went well Merlot - have been wondering how you were getting on. Ours is booked for early August and I do have some questions for you ladies - when I can get my head together to actually post them!

[chonky]

Hi Merlot,

I'm really glad you had such a good experience at BIBIC. I'm finding it so tempting just to get my dh more involved with my dd's therapy. He's a wonderful dad to her, but he does tend to stand back from the physio, Portage, vision (and so the list goes on....) exercises.

What sort of homework have they given you to do? How long does it take? Have you had to buy any extra kit?

I hope you don't mind me asking, I'm just really interested to hear more about it. I'm looking forward to hearing all about mini-Merlot's progress

[coppertop]

Wow! I'm glad it went so well, merlot.

[Pages]

Hi Merlot,

Thanks for sharing that, I am soo excited for you and for us, as i have the assessment interview booked for next week. Any tips on how to speed things up to get the booking? I wish I'd come across this before...

I have just read your post out to Dh! He is exactly the same as your DH sounded, we have already had an argument about BIBC!

If you feel like telling us more, I would love to hear more about the programme and what they have recommended for your DS....and do let us know about his progress.

[Merlot]

Hi everyone -

This is a flying visit as I am involved in clearing up after tea and bedtime stuff at the moment, but I will give you chapter and verse if you like... a little later...

Plus, Pages, I'll try and give you some more tips on how to convert you dh ....

Merlot xx

[Blossomhill]

Merlot - so, so pleased it all went well. I just knew you wouldn't regret it .
We have been back a month now and the dietary stuff has definitely made a huge impact. We are finding the sensory a bit difficult as dd isn't that impressed but we are persevering and hopefully she will eventually just do it without a fuss! We have a meeting on Tuesday to discuss the trip with the school and to see how they can implement some of the changes into dd's day.
Which therapist did you have? We had C!
I would love to hear chapter and verse of how it all went.
Bye for now Blossxxx

[chonky]

I need some tips on how to convert dhs too please ....

[Blossomhill]

Well my dh was very sceptical and I still cannot believe how positive and happy he felt when we left. I think the main thing I would say to say to dh is that it is the 1 chance you will get to be able to fully understand your child. They explain everything and it all just makes so much sense.

[chonky]

OOhhh, I've just thought of another question (this is to Blossomhill too). Did you tell your physio, SALT, Portage worker etc. that you were going to BIBIC? I can't see any reason not to, but I do know of some healthcare professionals not being too chuffed about people going to BIBIC or Brainwave (god only knows why). If you did tell them were they supportive of your choice?
I really don't want to alienate the people who help us locally, however I'd rather not have to omit the fact that we'd been to BIBIC IYSWIM.

[Blossomhill]

Chonky - I would definitely tell them all. It's your child and you are paying out the money. Also they are all working towards the same thing and if Bibic can give some more suggestions then what's the harm?
We are having a meeting at dd's school on Tuesday to discuss our visit as quite alot of the therapies can be worked on at school.

[Pages]

Oh yes, that reminds me, I meant to ask about filtering the programme through to other people...did you feel, Merlot and Bloss,that it is something you can pass on to others? Or would we benefit from having DS's nursery keyworker with us on the trip so she can get it all first hand? I honestly think that nursery would support her going (that's how great they are) but Dh doesn't want "outsiders" with us when we go (that's actually what started the argument! Although I think it was still, at the root, the standard Dh wanting DS to be perfect, not accepting his disability thing...)

[tamum]

Merlot, I'm so pleased you had a productive and useful time

[Blossomhill]

Pages - I am not sure really. I know Bibic welcome carers and outside family members. It just depends on how you would deal with the over night stay. A couple of the days when we finished I came home and cried
Now please don't let that put you off but some of it was guilt that I hadn't realised how many things affected dd. Another time was just the sheer overwhelming feeling I had of finally knowing my daughter but also feeling sad that she had gone through so much. Also I cried with happiness too (okay I cry a lot, especially when it's to do with my children )
So what I am trying to say is that in the evenings I really wouldn't of wanted anyone but my immediate family but taking her along in the daytime would be great

[Jayzmummy]

We are going back to BIBIC in a couple of weeks for our 6 month assessment. J's new Home Eduaction teacher is coming with us....but she is going to stay in a local B&B.
She is coming because....

1. She thinks very highly of the work BIBIC does and she is very keen to become active in the sensory programme we are currently using.
   
   
2. She wants to gain a better insight into how she can help J in an educational way.
   
   
3. She is eager to learn all she can about different approaches to teaching ASD children.
   
   I am fortunate enough that through another forum I met up with another Mum....she has become one of my trusted and dearly loved friends. Her son atteneded BIBIC a while ago and we are sharing the accomodation whilst both having our reassessments.....so the poor Home Ed Teacher really would have her work cut out keeping up with both of us!!!!
   
   So, basically BIBIC welcome with open arms any extended family members or carers to attend because the more people you can have around to help with the sensory programme the better.
   
   
   Husbands!!!! Thats a toughy....take it from someone who spent a year trying to persuade her hubby that BIBIC would be a good way forward for us as a family.....now he kicks himself that for so long he was adamant that we would not go....."that old pile of mumbo jumbo wont help us"!!!....how blooming wrong he was...and he will hold his hands up and admit to it.
   
   Hubby has said that if you want, he will post something here for the other Dads to read...a different perspective as to why he was so reluctant to attend and how glad he is that he did. Hope it helps those that are trying to persuade their dh's to go.

[Potty1]

Merlot - glad you had a productive visit

Husbands/partners suffer from 'ostrich syndrome'........it's a medical fact or it bloody well should be! Glad that they've got your dh's well out of the sand!!

[Pages]

Jaymummy, that is so great about your DH and yes, a word from him would help us all I'm sure! I think my DH does accept that help is good but any conversations about DS and his special needs automatically upset him and make him withdraw.

Thanks for the info, Bloss - I get your point about the accommodation and I definitely will need a place to go and cry without anyone else there. If she can stay in a B&B that would be the best thing. I am torn between wanting it to be the most productive experience for helping DS and wanting a family few days where we can be cocooned in the whole thing and scream, cry, etc...

[Merlot]

Right... a little more time now.... so here goes This might be a little long

Hi Blossom/Jayzmummy - it is great isn't it?
Our main therapist was Jo (she was lovely), but all the therapists seemed equally nice.

Dh is really like a changed man, I just cant quite get over it...I've asked him what his main objection for going was in the first place. He said that he was just very sceptical and felt that he couldn't believe that we would learn anything more about ds2 than we know already. He too is prepared to admit he was wrong now....he says that he was really impressed by the profile' they create for your child, which is a multi-disciplinary assessment sheet which plots exactly what skills your child has (and by default shows which ones they have not yet acquired). I think this graphical representation really impressed my very logical andscientific' husband and proved in his mind, Jayzmummy, that it wasnt a lot of `mumbo jumbo '

Chonky/Pages - We have come away with a programme which requires me to do two, half hour sensory sessions with my son daily. This apparently is the longest programme they would recommend - I just felt that as I was looking for instruction/focus it was something that I could do. What is absolutely clear is that they will create a programme that will fit in with your own time constraints whatever they may be.

The sensory programme which was designed for ds2 (who does crawl and stand, but is very passive, needs lots of motivation, does not babble and still dribbles and whose tongue lolls out rather a lot - but is very beautiful ) was as follows.....

Tactiles [like massage but with soft and rough materials and an electrical massager (only real purchase necessary for us - Chonky)] to improve manual function, increase sensation and help ds2 to learn to recognize by touch.

Rolls (ds2 has never rolled) - a fun activity which requires two of you to roll your child up and down a length of carpet/duvet.

Crawl Challenge - A little obstacle course, over a variety of different textured surfaces.

Sniff and Smell type stuff - to improve ds2's sensory awareness

Oral exercises - mainly with an electric toothbrush to improve chewing, reduce dribbling, improve articulation and tactile awareness.

Walking exercises

Standing exercises

Sausage Roll = a hilarious one, where you calm or arouse your child through pressure and active movement by rolling them up like a sausage roll in a duvet!!

Garden Swing - increases head control and spatial awareness

Suspended Roation - Rotating your child on a garden swing to improve balance and awareness

ALSO....

they examined ds2's diet (it looks like he may have an intolerance to yeast which could be making him more sluggish than norm... which obviously might be contributing to his passiveness... so we will try this... wont be easy... any suggestions where I can get yeast free bread?!!!!!)

AND...

they created an Individual Learning Programme for ds2 where the target areas were communication, manual function and social interaction. This basically consists of loads of ideas and activities and could easily be built in to my sessions with the portage worker

and finally....

The story behind the Coke (Socci) is that there is a fantastic nutritional therapist at BIBIC and she just lays out the facts in front of you about various foods... now I was watching dh out of the corner of my eye on this one (thought he was going to be the number 1 sceptic here!) but no, after hearing various, horrific facts about Coke - do you know that if a steak is left in a glass of coke for 2 days it will completely dissolve? and that the neat Coke concentrate has to be carried in a vehicle with a dangerous substance sign on the side we will never touch the stuff again...

Anyway, hope all this stuff has helped....if anyone wants to ask me more questions please feel free to post again or CAT me. Obviously Jayzmummy is a bit of a seasoned pro with BIBIC and Blossomhill is a recent convert too, so I'm sure one of us will be able to help with any questions...

[chonky]

It does sound brilliant, and the routine actually sounds like a lot of fun. I think I'll speak to our Portage worker about it this week and see what she says. It'd be good if we could mix the two like you say.

I'd love to hear more about the toothbrush exercises, I'll CAT you if that's OK.

Euuurghh, the coke part is gross. I've used Coke in the past to clean metal - very effective ) - but I haven't been out off drinking it until now. I have a sad addiction to Diet Coke though (my car is full of empty Coke cans ) so I'll have to wean myself off gently.

I'm so glad you and Blossomhill had such a positive experience there. I just need to work on dh now....

[Merlot]

Chonky - look forward to hearing from you

Also, a couple of extra points I forgot to add...

I did tell my SALT and physio that I was going to BIBIC...tbh I could tell that they were both a little wary....I think they were slightly defensive (felt they were giving their best and were worried they were going to be undermined). I dealt with this by reassuring them that I wasnt unhappy with what they were providing, but just that I wanted to see whether there were any extra hints BIBIC could provide and that...of course, I would keep them in the loop and provide copies of reports...This seemed to make a substantial difference with the physio, who then actually admitted that there were `things' out there that may possibly help, but that on the NHS they can only employ practices that have about a million and one research papers behind them (otherwise the govt wont fund it!)

Of course...I was also grateful for BIBIC for a second opinion (although kept that quiet to my professionals) and the integrated approach was something that is not very often done on the NHS.

Interestingly enough....what BIBIC did do, somewhat sadly , was to reinforce the need for Makaton and other non verbal communication aids to prepare the ground in the event that ds2 never speaks and which will also help reinforce speech if there eventually is any.

I found that tough (that was my private tearjerker in the bungalow!), but interestingly by BIBIC saying that and very much confirming that we are getting the very best help as far as SALT is concerned, it given me even greater respect for my SALT , who I was happy with in the first place!


ALSO,

Pages, If your dh doesnt want your key worker to be there..and I sort of understand him..I'm not sure I would have wanted any other professionals with me on that first visit..raw emotions and all that...what BIBIC is really up for is that you can VIDEO as much of the sessions as you want..we videod the 3rd day teaching of the programme and it has proved invaluable .

[heartinthecountry]

Thanks Merlot - that's a great run-down. Also, the one thing I forgot to ask them on the phone was whether you could video the program so really helpful to know you can.

I'm phoning today to book our place

[Blossomhill]

Also you can request a dvd that shows you what they do and how they work!

[Pages]

Thanks Merlot, really helpful. Do you need your own video camera or do they hve one? I don't actually own one..

[Jayzmummy]

They have one there and will video the sessions for you.

Im quite looking forward to our reassessment in two weeks time now. It will be nice to see just how far J has improved now we have been following the programme for 6 months.
We have seen massive improvements with his pencil control, dribbling and spatial awareness.

Yeast free is a toughy....but given time it becomes a breeze. Try soda bread as the replacement for yeast ladden bread.....the yeast free stuff costs a fortune and is like chewwing on cardboard!!!!

Take the diet changes nice and slow and it wont be such a shock to the system.