Another Wednesday, another trip to the hospital. Our first since the big Cerebral Palsy clinic day, which had gone far less dramatic than we had been hyped up to believe.
On the positive side, the session for speech therapy went well, with the therapist giving us several ideas on encouraging speech that ranged from toy choices and interaction styles to massage of his cheeks and mouth area. Lots of ideas with potential.
The time spent in Room 106 with its various balancing apparatus was very useful again, like last time. We tried out a few more pieces of equipment including a rocking horse kind of thing, which Nisarga enjoyed tremendously.
The two physiotherapy departments continue to be a pain. We have been prescribed certain exercises for him, that we must make him do, but Nisarga remains true to his history of not liking repetitive and regimented movement as well as becoming stiffer after doing it. Frankly, I agree with him, as logically, they do not appear to be headed in a direction that will contribute to his movement choices. I don’t anticipate much good to be resulting from these and am, in fact having to work harder to combat increased rigidity, both in him, and in my mind, as forcing a crying child to do exercises he is trying to escape just does not fit my view of humane.
I also think it is dangerous, as crying is the only way he can indicate if he is in pain or other discomfort, so it may be possible to injure him by forcing him to do something he is resisting with everything he has in him. And he is not like that. Nisarga is one cooperative and cheerful guy. Uncontrolled crying is so not him at all. So I am very disturbed by these therapy sessions, particularly the one on the first floor, where the therapist is extremely uncompromising in the movements she wants him to make and Nisarga dislikes that so much that he simply refuses to have anything to do with her.
I need to find a way to select the therapies that are helping and opt out of the ones that aren’t, in order to maximise the useful impact on him, and reduce stuff that wastes his energy with stress or adds resistance to an already difficult reality. Or at least ask the therapists to not force him and simply show us the movements, which I can try and weave into our Feldenkrais sessions. This is not going to be easy, as the husband is usually inclined to think I am a fool and don’t care about Nisarga’s well being and etc, so apart from resisting the considerable pressure from doctors to “do this if you want your son to get well”, there is the home front too. Why would I be happy to cooperate with one therapy and not another? What vendetta would I have for some therapists over others when they are all new to me? If I was resisting for the sake of it, I’d do it for the whole gig and save time traveling 4 hours every Wednesday in insane rush, no? Procrastinating. Who knows, maybe against the odds, the exercises help and I don’t have to do this battle?
Anyway, I am noting the movements those therapists see as desirable and trying to achieve them in more respectful ways at home. Hopefully that will help. Or at least not harm.
In other good news, the medicine Nisarga had been prescribed at the Cerebral Palsy clinic had been very difficult to find, and we had almost given up, when a short tempered nurse told (an even more short tempered) Raka something that led to me suggesting yet another attempt to find it. While Nisarga and I had a great time in the room with the balance equipment, Raka went out searching for it again and chanced to find some lane of medical wholesalers, where he finally got the medicine.
This is very good, as my internet searches had shown me that it helps decrease spasms, which is very urgent for Nisarga, as he is not able to do a lot of actions he knows how to do, simply because of involuntary movements fouling everything. If the medicine helps dial the spasms down, that one chance search in some godforsaken lane will probably do more to help him than 10 therapists.
Yeah, so that is that. So far, so good.
Hi.. I am mother of a probable CP child and I first came across your blog while searching for ABM. Anyways, I just wanted to suggest few things as I have not read in your blog about these things. First thing is diet. I have my daughter put on a special diet. I consulted Dr. Jag for this diet (www.jagtherapy.com). Other thing is there is a FI practitioner, Michel Casanovas in India (you can google about him). You can probably plan to have few private lessons for you son from him. I have not yet been able to get my daughter FI lessons but I am planning to do so. Other thing which I tried with my daughter and has certainly helped is neurofield sessions. I have taken intensives, followed by thrice weekly sessions for my daughter. She has certainly shown 10% improvement with these sessions. I know that 10% might seem too less but my daughter was stuck for over a year and was not showing any signs of improvement.
I will keep you posted about FI sessions review once I get them for my daughter.
Take care and good luck!
Thanks for reaching out!
I have found that son has digestion issues and generally his spasticity is lower if he is not constipated. I know about Michel Casanovas and have communicated with him earlier, but he was not in India. It seems he visits Bangalore on and off and more rarely Mumbai. There is also another person in Andheri who said he practices Feldenkrais, but he kept recommending physiotherapy, which sounds really unlikely for any Feldenkrais practitioner and I chose not to go ahead with him. The Michel Casanovas option is still open, and am saving up for perhaps visiting Bangalore or something.
As promised, I am back with my review of Michel Casanovas. So far he gave two FI lessons to my daughter. Its little early to say how effective his work is but I definitely found him infinitely more gentle and attentive towards my daughter (as compared to OTs we have taken her to). At this stage I would certainly recommend him.
Also, the neurofield sessions my daughter underwent were supervised by Mr. Srinivasan of http://www.medhamind.com (but, these cost a lot!).