Here are some suggested organisations that offer expert advice on SN.
Back from BIBIC(12 Posts)
Thanks so much to those who recommended it. It was a really invaluable experience, not least of all being able to ask the paediatric neurologist all the questions that have been buiding up for so long and getting some entirely sensible answers.
Also, though I felt exhausted by and a bit daunted by the programme on the way home yesterday, I woke up today feeling inspired by it and we have already done a few things today that have worked well. I think I had run out of ideas before. It also made me realise the SALT provision we currently have really isn't good enough, and I am going to get some private help.
Felt upset seeing in black and white how far behind DS is, but it only reflected what I already knew and he came out as quite a bit further ahead in his comprehension than he is in his physical skills which reflected what I thought about it being a patchy rather than global delay.
Also, when I asked my current physio why DS was still not walking (although has been on the verge of doing so for a year) she said "he just hasn't learned how to yet" and I alway felt that was wrong - he does know how to, but just won't let go of my hand. Bibic confirmed what I thought and have been telling the professionals with no response - the doctor said he has weak joints (which run in my family - both my ankles are arthritic and I have no ligaments supporting my left one - had to have an op recently, my mum is double-jointed and my NT cousin had to walk with calipers and peidro boots until she was 3)and the physio said it is also his heightened sense of danger holding him back, and that is what we are going to be working on. Today, I propped him up with his back to the wall and he cried and grabbed at me, but when I did it again a bit later he let go of me, smiled and started to rub his back against the wall. And then he stood and held onto a hoop rather than my hands - all things he wouldn't have done before. So feeling really pleased (I'm probably going to jinx it now by saying something positive!)
Anyway, sorry for waffling but although I felt a bit down yesterday just at the reality of it all, I feel today that at least we can help DS achieve his potential.
Btw, Hitc if you are reading this - yes, we got quite a hefty sensory programme! But it does actually kind of make sense to me now, even though on the way down I was thinking "I hope they don't give us loads of sensory stuff".
Sorry for waffling on, but just wanted to let you know how grateful I am as I wouldn't have known about BIBIC if it wasn't for you mumsnetters. I really feel they saw my DS for who he is, rather than just another child with developmental delay, and i do think the programme is geared towards him. Thanks again.
So glad it all went well Pages . I really felt that Bibic was a life changing event for my family and hope you feel the same.
Which therapist did you have?
Anyway again so pleased you went. I think all children with sn should go. Really helps you learn about why your child does the things they do.
Gosh Pages, you little ds does sound quite a lot like mine. His development came out as rather patchy and we have also been given the back against the wall exercises. He too is just to `scared' to let go for walking and although he has just taken a few steps , I can see it being a long haul before he walks independently.
I haven't really ed the sensory programme yet , but BIBIC were very understanding during our follow up conversation. I think I rather overestimated the time I have available.
What did Carolyn say about nutrition - any changes necessary there?
Glad you thought it was a positive experience. It is great to concentrate on your child for in such a focused way isn't it?
Everytime someone comes back from BIBIC I am in awe of BIBIC, and you guys, who go and learn and build on it.
This is the beauty of MN, it exposes you to elements of life that you will more than likely encounter and it at least makes you feel will be able to make sensible answers.
Hope this makes sense.
Therapist was Michelle, we were a bit concerned about how young she was at first and she had the least experience but she was spot on, I felt, in her assessment of DS. No big surprises on the nutrition front as DS has a fairly healthy diet, but a probiotic given as he has had a few doses of antibiotics in the past and has loose stools (sorry!).
Do you mind me asking Merlot what was your DS' strongest area and what was his weakest? My DS was strongest in his comprehension and weakest in his fine motor skills, which was pretty much what I had thought. He is a long way behind though, he came out at about 18 months at the most developmentally although he is 33 months chronologically. That does sadden me. I was wondering if anyone else's (older) child has made any leaps forward from a gap that big?
PS, which therapist did you have Blossom and Merlot?
My ds (21 months) weakest area was Social Development, Play and Cognitive (9 missing milestones), followed by Expressive Language (8 missing milestones. Best was Fine Motor and Tactility at 5 missing milestones.
Ds2 was thought to have an intolerance to yeast and maybe dairy. So we have done the cutting out yeast bit and are now doing the probiotic, flax oil stuff before thinking about trying no dairy.
That all sounds really good
Glad you enjoyed it
We had Courtenay who was great. Still in contact from time to time and she recently sent me some new pics for my timetable. We go back for re-assessment on the 6th Oct.
The thing is the past fortnight what with the hot weather and things a lot of the programme has gone out of the window
Pages, so pleased to hear it went well. that it made you sad.... it sound like it was perfect for you and DS and anything that reinvigorates you has got to be good.
Am so pleased to see that BIBIC was helpful to you and your DS:-).
With best wishes
Hi Pages - glad it went well for you too. If nothing else I do feel a trip there gives you a new momentum.
Having said that, I haven't been quite so efficient at putting dd's program into practice as I thought I would be . Even though it is only 20 minutes, finding that time, at a time when dd will be receptive is proving harder than I thought. However am trying to just fit bits of it in where I can. So she might get her massage after her bath or her face massage while we are cuddling on the sofa and the physio bits when I can though half the time she won't do them .
My dd is 32 months and came out between 9 months for gross motor (because she isn't standing yet) and about 18 months for expressive language and sociability/communication. Which was about where I thought she was. It is hard when you look at it like that but I think it was valuable to see which areas need more work.
Our therapist was Kate - really liked her.
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