Hi, my name is sophieken! Does anybody have any experience of neurodevelopmental physio — Scope | Disability forum
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Hi, my name is sophieken! Does anybody have any experience of neurodevelopmental physio

sophieken
sophieken Member Posts: 5 Listener

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  • sophieken
    sophieken Member Posts: 5 Listener
    I’m wondering if anyone has experience of neurodevelopmental physio or in 

    Anat Baniel Method 

    In north london? 
    Im looking for some options for my 5 year old son and the present clinic we are under has v limited availability. Any experience would be super helpful 
  • janer1967
    janer1967 Member Posts: 16,322 Disability Gamechanger
    Hi there 
    Welcome to the community 

    Sorry not something I have come across 

    Can you gp make any suggestions or try Google search 
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Hello @sophieken - & welcome to the community. Would you mind saying what problems your son has please? :)
  • sophieken
    sophieken Member Posts: 5 Listener
    My son has a deletion on chromosome 4q. It’s super rare and Gosh only know of about 12 cases. 
    He has low tone, behavioural difficulties, a speech motor planning disorder, he can barely speak but has good receptive language and clearly understands a lot more than is obvious. He is nearly 6. We did some incredible work with a child psychotherapist and made amazing progress but she moved before the pandemic and isn’t returning to the U.K.
    the neurodevelopmental physio is written into his eHCP so I’m looking for options. 
    The child psychotherapy isn’t written into his EHCP so we had to pay for it but I would be interested to hear if anyone has accessed anything similar through their ehcp. 
    Many thanks for any pointers- I am super grateful of any help as it’s hard to find the right things. There is no known treatment path witb therapies for his condition so accessing therapy has been difficult at times. 

  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Thank you for your reply @sophieken - had it been cerebral palsy, any answers would have been different, as we have a specialist that can answer queries, &, as a physio that worked with such children a long time ago, as well as some with neurodevelopmental & sensory disorders, I may have been able to help a little.
    I'm sorry to read how rare your son's diagnosis is, & that your child psychotherapist has unfortunately moved away. I've been in a similar, yet different, predicament; our youngest daughter was said to have only another 8 children like her in the world.....of course that was not the case as it turned out to be, & I had already begun looking for similarities with other conditions (she also went to GOSH, but sadly we lost her). Perhaps this might also help your son, just looking at the similarities. Some deletions/micro-deletions of chromosomes result in some of the issues your son faces. So, have you asked your neurodevelopmental physio for their opinion; are your queries mainly about EHCPs? We have members who can advise with these, & there's some info here on Scope: https://www.scope.org.uk/advice-and-support/families-with-disabled-children/education-health-and-care-plan-ehcp/
    I looked into the Anat Baniel method again yesterday; must admit it's only the 2nd time I've seen it mentioned on the forum, but that's not to say it isn't good, but wish I knew. It certainly looks helpful, but admit no knowledge about this.
    It depends on where your son's deletion is, but as I've mentioned, there can be similarities, so I would work with these, i.e. looking at treatment of neurodevelopmental delay. Hope some of this helps. :):
  • sophieken
    sophieken Member Posts: 5 Listener
    Thanks so much for the reply. I’m so sorry to hear about your daughter. I’m actually looking for neurodevelopmental physio recommendations in north london as we have one but she doesn’t really have enough time for us and we end up being messed around a bit. We are definitely not a priority and I’m a bit over being treated like that and our son missing sessions.
    the child psychotherapist issue is separate but needs attention too 
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Whilst I can't endorse this, have you tried: https://www.maestherapy.com/  ?
    I'm saddened to read about how your physio has been; obviously you want the best for your son.
    Thank you for your kind reply. I definitely wish the best for your son & self. If I find anything further I will let you know. My best wishes.

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