Brainwave, Snowdrop or Footsteps

[sioba]

Hi,

I have a ten month old son who is delvelopmentally delayed, he has nerve conduction abnormalities, agenesis of the corpus collosum and hypotonia. He basically undiagnosed, the feeling is that there is a genetic underlying cause but despite extensive testing we don't know what the cause is. We are awaiting refferal to teh DDD study. He is however responding really well to physio, and to SALT (for feeding issues) and is about to start OT.

I would like to supplement his NHS therapy in some way but am really struggling to find private practitioners who I trust. We are exceptionally lucky with our NHS provision it would seem - in that they are all amazing - really listen to me and see us frequently. I am somewhat sceptical about alternative therapies- no problem with others using them but they are just not something that I personally believe in. I would like to see a good strong evidence base behind any therapy that I signed up for.

So does anyone have any experience good or bad of any of the following

1. Private practitioners (OT, Physio or qualified other) in South East London (well South London would work)
2. The Brainwave program
3. Snowdrop
4. Footsteps (I think he might be a bit too young for this)

Thanks a Million,
Sioba

Hi, my ds is 3, globally delayed, various sensory processing issues. Underlying genetic condition also suspected but various tests have drawn a blank. We are also in the ddd study.

We are on snowdrop & would highly recommend. Andrew really knows his stuff. There's a private fbk group that he can give you access to so that you can come & ask parents questions & see what its all about. Hope this helps & good luck with it all :)

Ps evidence is his strong point-he recommends nothing without giving you a scientific basis to it.

Completely unhelpful, as I have no experience in this area (DS2 was globally delayed, but not that severely) but at first sight, I did wonder if the thread title had got lost on its way to the baby naming threads :o

We did Brainwave for two years and found a huge improvement with DD..I would highly recommend.

Hi, run don't walk - thanks for your reply. Did you find with snowdrop that they integrated the therapy into your daily life? I guess this is what I am really looking for.
We do two sessions a day with my son running through the excercises prescribed by his physio and ot. He will currently tolerate about 20-30mins of therapy - sometimes a bit longer and the time is increasing. But I would really like to integrate it more into our daily life - so that as well as the sessions we do with him - we are handling him in a way and playing with him in ways that will maximise his potential.
I have an older son as well and I'm finding it hard to balance time spent working with littlie versus time spent with my older boy. If I could feel that littlie was more involved with things it would help. Currently he is very happy to watch his brother play but dosn't seem to get actively involved and I struggle a bit with involving him. He dosn't really reach for toys and has few fine motor skills. His therapy is concentrating on his gross motor skills - which I guess need to be developed before we can work on fine motor skills. But it does make it hard to involve him in his older brothers play.
sioba

Hi Pouncer1 - thanks for your repsonse - one of the reasons that Brainwave is currently my #1 choice is that from their website it seems that they do integrate therapy into your daily life. Did you find that they did?

Thanks a million for your responses - these things are so expensive I don't want to make the wrong choices.

ouryve - Brainwave could be a interesting name - Brainy for short.

When you say your DS2 was globally delayed but not that severely - what do you mean? F (my son) was recently described as globally delayed by hie pediatrician - previously he had always been referred to as motor delayed. I was upset by the reference to global developmental delay - as I guess I had thought - ahh well his motor skills are delayed but he is otherwise doing OK. But GDD sounds, well, severe (I'm a complete new comer to all these terms so please forgive me if I offend anyone). Is it possible to be described as globally developmentally delayed and for it to be not very servere?

Sioba

He was late meeting all milestones, both motor and language. He was subsequently diagnosed with ASD at the age of 2 (referred at 21 months). I felt like I was hitting my head against a brick wall regarding his motor milestones, but the fact that, after walking late (again, 21 months) he was still unsteady at 3.5 was finally taken seriously by OT, who didn't manage to do anything else for him, but at least referred him to physio who confirmed that he had low tone and appeared to be hypermobile.

A child with a delay can vary between taking noticeably longer than their peers to achieve something to significantly longer. DS2 is 7 now and, so long as he's not tired, is noticeably much stronger and is able to run and jump like his peers. He struggles to use cutlery, though (he can feed himself something very motivating, like a pudding, with a spoon, but he can't even take an interest if the food isn't so tempting!) And he's recently gone through a language explosion which takes him to the level of a 2 year old.

We have found it relatively east to fit the exercises into normal daily life,with the number of times we do them varying. It gets easier with time,as you naturally fit them in without thinking. My other dc is younger,but lots of people on the prog get their older dc's involved in 'helping'!

I found Brainwave very helpful, the programme is not that difficult to do and my son's preschool do a big chunk of it as well. They also lend some equipment - we got roll and a ball.
You are really good about starting so early!
The severity of GDD is very fluid, nobody can now tell you the future, that is the worst part about it.
When my ds was 2 years old, he didn't walk, talk, copy or point. I was convinced he is severy autistic and will be non verbal.
He is 3 and a half now, walks, runs, talks (perhaps as a 2 year old). He does not have ASD. But he is still very delayed - nappies, big problems with food, can't dress himself, can't walk the stairs yet...
I would now describe him as having moderate learning disability.
On the other hand, he can count to 40 and knows the whole alphabet - some kids are just hard to categorize :)

We have been doing brainwave for over 2 years and find it so helpful and supportive for my DGS. He has straightforward cerebral palsy and they concentrate on fine and gross motor skills. We were not getting enough NHS PT and OT and felt we we floundering and overwhelmed with the whole situation. I help my daughter most days as much as I can as it is just easier with two but programmes take this into account.

For us brainwave seemed to join the dots and the first sessions involved two full days and we were the only family there so lots of scope for talking and understanding what your child's difficulties and strategies to work round them. Also lovely surroundings and 2 people concentrating on your child. We learned so much and also how to incorporate their program into daily life.

From the second session we learnt that a lovely sponsor was paying for most of the fees so we have paid very little after that first session. We have seen a slow but gradual improvement in DGS s development. There is no miracle cure out there for CP and DGS is on the high side of moderately affected but continues to make improvements.

We looked at snowdrop but the distance to travel made it too difficult for us, but Andrew was such a lovely man and we know someone on his programme who cannot praise him enough. He does say however that you must commit a set time to do the programme (its on his web page). There is a lot of sensory stuff, proprioception etc involved but all based on good research, nothing nutty at all ! Brainwave also is based pretty much on bobath lines so very conventional and they try to improve the quality of movements as well as function.

Don't know about footsteps otherwise this would go on forever.

And as for the global development delay thing....brainwave assessed DGS s cognitive ability as normal but reflected his level of CP affecting all motor movements. A t* of an educational psychologist who saw him for an hour recently labelled him GDD based on his lack of speech and he can't build an effing brick tower ..... Sorry it really gets me mad, but we challenged it for his statement and it was relabelled. My advice is you know your child and you are the best person to assess his cognitive ability. A GDD label is soul destroying when you know your child can follow instructions, knows numbers, colours, uses an ipad etc !

To be honest I think at 10 months (well 10.5 months) it si too early to say if he is cognitively effected or not yet. I don't think he is - or at least not severely - but maybe that is just wishful thinking on my part. The pediatrican in question wrote in her report that he didn't show any stranger anxiety (he dosn't but neither did my older son really - they are both complete flirts who love new adults paying attention to them) and that he didn't have the concept of object permanance which is difficult to assess in a baby who does not have the motor skills to reach for objects. I think he understands object permanance but just isn't that interested in objects (loves people) but I wouldn't 100% swear to it.
He is a little bit speech delayed - no babbling but that could be linked to oro-motor skills rather than cognitive delay - again its really hard to say. I also can't reallt tell how much receptive communication he has as again his lack of motor skills really interfere with his ability to show that he understands.

Anyhow - I think I have probably decided to go for Brainwave - maybe look at Snowdrop again in the future - the challenges at the moment are about developing his gross and fine motor skills and building up muscle tone. It feels like that makes Brainwave a good fit?

Sneezecakesmum, ds can also do numbers, colours, follow instructions etc, but his label is also GDD..Brainwave suggested DCD, but NHS do not want to investigate that as everything fall under the GDD label..very confusing.

Sorry possibly a stupid question - what is DCD?

Just googled should have done first Developmental Co-ordination Disorder.

Sioba, yes, Brainwave will be good for gross and fine motor skills.

You are right, it is very early to say anything about cognitive abilities. My ds at that age did not move at all, he just sat happily and calmly and did not attempt any movement. Now I know it wasn't because he didn't want to, but because he couldn't.

Hi Babiki, That is really nice to know about your son - I do worry because my son seems very, well, passive and happy - he dosn't try to move much. Although he is beginining to a bit. It worries me that he dosn't seem to get frustrated as I do think a bit of frustration might spur him to develop.

Sioba, my ds was the same. Very happy and content, almost placid. Very hard to motivate. He just did not feel the confidence to move - it was all due to his coordination and balance problems, apparently it can feel as when you are drunk; so they just stop attempting to move...

Good luck with everything, btw Brainwave has very long waiting lists, maybe meanwhile you could try private physio? We did that when we realised the NHS ones were useless.

I think either therapy would help your DS. It's just what will fit more easily with family life, and as DS is so young still you will be able to see how he is responding to the brainwave program. As you say you can look at snowdrop a little later and they are not incompatible at all, but I think you would have to invent a few more hours in the day!

With the agenesis thing I believe it is about the left side of the brain talking to the right side, and brainwave will address lots of crossing the midline activities. Don't forget with cognitive issues personality has an influence and some children are just too laid back for their own good. A bit of frustration isn't a bad thing. DGS learned very early on what a huge effort it was to coordinate his movements and he is quite happily to watch TV so be very careful with TV use...we really regret using it while the necessary housework goes on. Lots of toys and enforced boredom is a great incentive to move! Don't offer an easy way out but offer other activities. Scope has an online booklet called play (?) something with loads of play ideas.

We found this book: here so helpful, absolutely brilliant. Lots of everyday handling tips etc. remember to exercise his mind as well as his body, again invent an extra weekday!

I think I could write a book about how movement affects development of measurable cognitive ability, all discovered the hard way, but babiki don't accept your DS isn't cognitevely able just because he is delayed, DGS continues to amaze us as his physical and speech limitations gives the impression he has major problems.

I do get the impression that my son is very laid back - he is a very different character to his brother - who was constantly frustrated by his inability to physically do things. Unfortunately for us it isn't the tv that he watches but his big brother. Littlie is super happy to remain propped up on pillows watching his big brother playing. And its all too easy for us to spend time playing with my older son, who is much more demanding than littlie. It really worries me sometimes that if F was my first would he be further along in terms of development just because we would be spending more time concentrating on him.
Honestly - the motherhood malarky dosn't get any easier - when I don't feel guilty about not playing with littlie - I feel guilty that my older son is constantly wiating about while his brother has various appts, physio (we are lucky our NHS physio is brilliant and we see her weekly), OT, SALT, genetics, neurology etc. etc. etc.

I've just bought that book BTW - thanks for the recommendation!

Another one with a very laid back ds here! It's hard isn't it & the guilt is always there but I think that's a feature of parenthood anyway :)

Forgot to say,we found the book 'small steps forward' by Susan Haywood good for ideas to try at home. We bought the older one (green cover) quite cheaply on amazon. Another thought is whether you get Portage? If not,its worth asking for-I hear mixed reports but our Portage worker has been great. Also useful for help with things like dla & statementing.

Fully understand the guilt thing. There are so many areas to work on and if you do one thing, something else has to go!

Portage we would recommend too. She won't bother with the older boy so the littlun gets full on attention

Have you got adequate seating? Being propped up is lovely for him but seating him on something like a bumbo (I suppose he's outgrown that now) makes him work his trunk and neck muscles. We have a childrite chair, unfortunately costs a lot and had to be imported from America. Your physio or OT can advise on good seating. Maybe a tumbleform or a special tomato soft touch sitter?

I subscribe to a newsletter re CP research studies. Wont bother you with all the bla bla stuff (unless you want it!) just the conclusion:

INTERPRETATION: Intelligence assessments in children with CP lack reliability data, consensus regarding validity data, and population-specific norms. Research is required to establish psychometrics for children with CP. For children with higher motor involvement and/or communication and/or visual impairments, multiple options are required to assess intelligence appropriately.

Well you don't say......as in stating the bleeding obvious....if they'd asked the bloody parents they could have saved themselves some time! (it is my bugbear as you may have guessed )

Hi Sioba I struggled to find recommendations for private therapists in SE London too. Maybe we share NHS therapists? I'm very happy with the input we receive for DD too.
We use brainwaves. It's brilliant for DD, as she's so fragile they came to our home and carried out the 2 day assessment which was great and we have now had our 1st review and she has made great progress. I highly recommend it.
We had thought of attending sessions at the bobath centre in London, but it's very expensive and big commitment so it's something we might aim towards in a few years.
As others have mentioned seating is important, once DD got her Leckey chair she found it easier to reach for things as she was well supported. Have you had a seating assessment yet?
I have found DD to be passive yet frustrated... We worked our way through an unimaginably large amount of toys until we chanced upon things that interested her enough to reach or roll for ( a vtech penguin- he was brilliant)!
Good luck with the therapies, I recommend contacting brainwave soon to get on the list.