Received our Report from ABR Asia

This morning I have been reading for the first time our report on Archer from ABR Asia. (Thank you Sarah.) It is very dense reading and viewing. I need to do a lot more learning about the human body in order to really understand it and to apply that understanding when I am doing the therapy.

The report is in Powerpoint and uses cycled still shots to compare photos of his body between different moments of movement, to reveal compressional weaknesses in his body and to illustrate how he uses his body incorrectly (but cleverly) to achieve tasks. It gives me a feeling of “oh my brave little boy” and is also like a gutsy intellectual meal which is very exciting.  I love being a part of the ABR family. The report has refreshed my motivation and energy. I’ll show Archie the report too and talk it through with him …!

There is a lot of infrastructure in my life that I need to sort out so that I can get on with  Archie’s therapy unhindered. We are working on that as a family. These things are sent to test us and to make us stronger!

 

 

The three techniques I have learnt

At last I am writing. So much has been happening and for a long time I didn’t have access to the internet. (Sorry, to anyone who was wondering.) As I write, Archie is asleep with the ABR machine going on him.

In Sydney I learnt 3 techniques from our trainers Sarah and Jensen:

1. Single hand compression (for his chest and abdomen)

2. Ball rolling (for three areas on his back)

3. The ABR machine – (for his chest or abdomen) This isn’t so much a technique except that I have to know how to set up and run the machine. It is a computer-controlled air compressor which inflates and deflates small ‘bladders’ which are placed against a force transfer medium (extra soft fluffy material) which is placed against Archer’s body. The whole thing is fascinating. We are having great success with the machine- nice and easy and Archie doesn’t mind it at all.

Getting him to willingly lie still for the manual methods (1 and 2) is more difficult although Granny bought a massage table which has a hole in it: Archie lies down looking through the hole at a small portable dvd player, so as to enagage his mind and enable me to work on his back. I have to get myself up quite high to be in the right position to work on him. He also frequently complains that I am pressing “too hard: which I find perplexing as I don’t feel as though I am. If he feels that it is ‘too hard’ then that would suggest to me that his upper muscles- the “stress shields”- have kicked in and so my efforts are being wasted. I am maybe going too fast and need to slow, slow, slow down. Yes, I think this is perhaps my problem. I now have my camera battery and charger and have downloaded the videos I made in Sydney of Jensen demonstrating the techniques, and it is great for refreshing my memory.

I have not really been trying the single hand compressions but I must start doing them (no more excuses). He doesn’t like me doing them – I think because there is a tall tower of towels on top of him) and so I need to perservere and just start doing them when he sleeps on his back.

I do a lot of talking with Archie about ABR, too. Every time he gets frustrated about something for which he needs his legs, I say to him, “Then Archie you must say to me, Please may I have more ABR so my legs will get stronger”…. that way encouraging him to really want it so it is no longer a battle to achieve it. I think as he grows and his understanding develops, this part will become easier too.

I am also now working on writing my report for the Cerebral Palsy Society of NZ, and am presently downloading the report made for us by Sarah from ABR Singapore (www.miraclekidz.com) on Archie. Can’t wait to read it.

Back from our first ABR Training Session in Sydney

We’ve done our first ABR training session in Sydney- it was very exciting and full-on. My head overflowed with new knowledge and skills and friendships.Thank you Phil for your excellent advice- especially your suggestion to buy a portable dvd player, which I did and it was invaluable when we needed Archie to be still. I made pages of diary notes while I was there and will transcribe parts of them into this blog when I get back to my home in Karamea at the end of next week (I am presently at my Mum’s in Christchurch catching up with family). I will also be writing a report for the Cerebral Palsy Society of NZ about our experience. I left my camera battery recharger in Sydney so will have to wait before I can view or upload any photos. I have realised, to a deeper level, just how much one needs a wealth of background knowledge to really begin to communicate fully about ABR. It’s not something you can just walk into and start understanding. If you had a book about it you couldn’t really just open it at some page and get a feel for it… it really does require carefully constructed, incremental exposure to premises, implications, conclusions and the practical skills- which is what I see that our trainers were doing with me. I liken it all to being in a big castle with a moat… the castle represents cerebral palsy…. if you want to get out of it you have to make your way -metaphorically- through a very specific hidden route known only to a few people. Maybe it’s castles within castles, to account for the stages or levels of release from it. I met some of these people: our trainers from Miracle Kids in Singapore and other families - and it was just so exciting.

In practical terms I have started Archie on the machine at nights but have not yet started the manual work. I have bought myself a small stool and mattress for Archie to lie on, similar to what we had at our training session.

Must go, more next week.

 

All go for our first ABR visit in January

Just about everything is booked and in place for our first trip to Sydney to learn about ABR. Passports, tickets, course payments (all came through fine in the end) are done, the only last thing is changing hotel dates- as we have been asked to attend on the 7th and 8th of January instead of the 11th and 12th.

I have trying to do some background reading to be ready to understand ABR and have been reading this thesis http://abr-denmark.com/fileadmin/templates/media/pdf/ABR_Thesis_2010.pdf . I would like to buy the recommended texts too (e.g. Job’s Body) but those purchases will have to wait a little longer.

Archie is ready too. He understands what we are going to do.

Sitting here in Christchurch writing this while earthquakes and aftershocks rattle everyone. Hoping you have a Happy Christmas and good 2012.

 

 

Final blood test back normal

Last week we received the news from our pediatrician that Archie’s final blood tests result came back normal. We are so grateful for this for Archie’s sake as well as our own.  We don’t know the cause of his cerebral palsy but now it doesn’t seem to matter. It just is, and we are so very grateful that we are in a position to look ahead to doing ABR. I have been learning so much through reading other people’s blogs about the difficulties, the grief, the love and the many other lessons that go with the territory of life with a child with a disability.

My months of wondering (fearing) that it could be a metabolic condition have done something to me… matured me? it has stretched me in different directions mentally and spiritually… it has given me an insight into the lives of Mums with children who do have metabolic conditions.. it has forced me to investigate cellular biomechanics – under the guidance of my friend Peter who is a naturopath and to make practical changes in my diet and Archie’s diet too. It led me to realise how important the ‘now’ is and that none of us know how long we really have and when we may go- so we just must rejoice in the now that we have now. I even got to a point of feeling that I could handle it if it was a metabolic condition. My joy is not a jumping joy, it is a deep gratitude, -like the words of ‘Amazing Grace’ – to have been reprieved by God’s grace. I now feel a looming sense of responsibility.

I now understand to my core that Archie’s CP is relatively mild and uncomplicated. His disability is not severe enough to qualify for our Government’s disability allowance, and this doesn’t bother me. I have connected with a couple of other Mums of children with similar CP here in New Zealand and it was so nice to realise that our thoughts and feelings are similar. I am grateful for the most generous-spirited and encouraging comments made by Phil Dzialo. I feel like we have been given a gift in a way, an opportunity in that Archie’s disability is at the mild end of the spectrum, and there is every possibility that ABR can take him from being disabled to being ‘normalised’ in terms of structure and function. If we achieve this, then – wow- I want it to be fully documented -photos, videos, so that it could be used to gain leverage for ABR (should Mr Blyum wish to use our case in this way). We haven’t even paid our money for doing the first ABR course yet (funds from the UK are presently lost in transit and we are trying to get Royal Mail and NZ Post to find them), but we are booked to do our first session in January- but- I just know in my bones that ABR is the way to go for Archie and for us.