India is a bright little girl who understands every single word. In her case this means she needs help with the 'doing stuff' such as walking, dexterity and talking.
The good news is that a childs' brain has what is called "neural plasticity" meaning it can build and repair new neural pathways if given enough regular therapy to make it 'work'.
For India we focus on the following;
Occupational Therapy and
For her Physiotherapy she gets regular physiotherapy here in the UK but in the US when she attends the specialist clinic she gets physiotherapy involving the use of a neurosuit. In essence she wears a suit which has resistance bands attached. This suit has several functions;
1. It provides 'resistance' to her body so she has to work even harder when wearing it and also 'think' when making movements.
2. The suit holds her body in the correct alignment.
3. The suit helps with motor planning for amplified benefits.
India wears the neurosuit for 2-hours a day, 5-days a week for 3-weeks at a time when in the US and does what I can only describve as a type of 'bootcamp' mixture of expercises whilst wearing the suit. Its incredibly hard work for her and she often pushes herself to the point of complete exhaustion - Mummy has to carry her out of the gym at the end.
In the US India also undergoes an hour a day of a type of physiotherapy called "Cuevas Medek Exercise" (CME). CME is a technique used in both physio and OT which helps her learn skills such as balance, body control and alignment. During these sessions India has to navigate complex wooden boxes and ramps - stepping up and over them with minimal support from the therapist.
The US therapists also use a therapy called "spider cage" where she is attached to bungee cords in a 3 sides 'cage' formation - often she gets to jump on a trampoline in this system and she absolutely loves it!
For her OT India has a weekly session with an OT when at School (she gets the school holidays off) and during these sessions the therapist focuses on building India's co-ordination in her hands to aid her holding cutlery, pencils and dressing.
In the US India will also receive an hour a day of 'pure OT' during her intensive visits where the therapists incorporate games into focussing on her fine motor skills.
In truth all the therapy sessions will focus a little on the OT at the same time as the physical therapies (which are for her gross motor skills) - the over-lap of the two seems to work well for her. She has t work hard on her fine motor skills as she seems to be stronger with gross motor but its coming along nicely and in time I am sure with the work and practice she will be able to be able to dress, use cutlery and pens and pencils. As with alot of things with this glorious girl it all takes work and practice.
India receives a weekly speech session during the School week which is funded by the Education department and we privately fund a further speech session per week during the School term. This second type of therapy is called "prompt" where India is prompted with tactile and verbal cues to help her learn how to move her face and mouth to learn where they need to be to produce the sounds for speech and words.
During her intensives in the US India receives a daily speech session - they also use the "prompt" systems. I feel the prompt system works well for India. because she is so cognitively bright and follows instructions well.
In summary, India is given circa 50 x 30 minute sessions per annum of her various therapy sessions funded by Education Department. Don't get me wrong, I am incredibly grateful for anything we are given 'free' but its simply not enough. Childrens brains have immense potential (Neural Plasticity - reference the wonderful works by Dr Karen Pape in this field).
Years ago, when the Doctors and therapists were giving me the full "diagnoses of doom", I researched intensive course of therapy for kiddos with brain injuries and cerebral palsy and found comfort in the results that were being achieved by intensive courses of therapy. Unfortunately clinics in Europe do not offer the kind of courses that I have found in the US. Yes, there may be a clinic in London who offer one hour a day of physical therapy but she needs more than one hour a day to get the results, yes there may be a clinic in Italy who offer physical therapy but there's no speech included. To make the best use of time I find that the system of 4 hours a day (3 when she was little) works best for us. We typically see gains and results after a 3-week intensive that we might not have seen for a year of therapy back home. Its a sad reality that our wonderful 'NHS' in the UK is grossly underfunded and I am sure UK therapists would dearly love to be able to offer the level of therapy and service that we get from going private.
Of course, these private therapies are not cheap. To date her private therapies have cost us circa £60,000. All of our fundraising efforts have raised about £25,000 of that which is a significant and welcome contribution.
My long term dream which has been born out of this experience is to one day build a centre of excellence for therapy for children with neurological issues such as CP / acquired brain injuries. If anyone out there is reading this and would like to come on board and help me realise this dream please get in touch; firstname.lastname@example.org
Laura & India Milne