Today was our first session after the third QEEG. So today was the first proper session using the hand machine.
We started with the hand machine and I wasn't prepared for being left on my own with Cameron to supervise him and do therapy with him for ten minutes. Those ten minutes felt more like twenty.
I think somebody forgot to explain what was going to happen. So when I was asked if I'd brought a book with me or was I happy to use the book in the room I was a little stunned and caught off guard. All of a sudden seeing parents walk out of appointments with books and ipads made sense. I'd often wondered why.
Each session Cameron will be wired to the machine through his left hand. The treatment machine doesn't use sticky pads like the machine we'd used on Saturday, instead it uses wet sponges and a bandage to keep everything in place. Oh no, my brain was saying as our doctor walked out of the room leaving us to it.
Immediately Cameron's fingers started to twitch and this stunned and troubled Cameron. His fingers didn't twitch on Saturday. Plus the sponges were dripping and Cameron was unhappy that they were dripping. Thankfully I had paid attention on Saturday and knew that the goal during the hand machine was to get Cameron to find colours and animals but the book I was using had excessively busy pages which I think were too busy for Cameron to cope with at the moment and were full of every object imaginable. He was also supposed to use his left hand that had twitching fingers to point at the colours I was asking him to find. He wanted to use his right.
Cameron didn't really settle properly at any point while the machine was on. He will improve but it was an unexpected jolt from our usual relaxed appointments and I didn't feel very comfortable.
To his credit Cameron didn't rip the bandage off or pull the cords out. He did give up on the book so in the end we just had to sit there.
However a lot of praise is owed to My Little Angel. She was amazing. She watched everything as it was being set up and quickly realized I couldn't hold the book up for Cameron, find items for Cameron to find, restrain Cameron from the cords and bandage, point to pictures and restrain Cameron's right hand all at the same time as wipe away the water and comfort and reassure Cameron whilst keeping him focused on the task at hand.
As I struggled and had bad therapy session and hospital flashbacks My Little Angel climbed up next to Cameron and started speaking in a beautiful calm, comforting voice. She held his right hand and started pointing to pictures to help me focus Cameron. She reminded him to use his left hand and wiped the water from his leg. She enthusiastically found the pictures we were looking for and playfully had pretend trouble looking for others. She praised Cameron when he found a picture and only encouraged when he didn't. When it all became too much she started to read him a fairy tale to help me keep him seated.
Things will improve as Cameron improves and at least next time I will be prepared - I will take some of Cameron's books. I could have taken the beautiful Playschool colours board book we bought him on Saturday but unfortunately less than 24 hours after we purchased it Cameron had weaved his usual magic. (It's worse now)
I'd like to take the ipad but I don't think the ipad and water should mix which is a shame because I have downloaded some brilliant colour and animal apps. Oh well.
As for my wonderful daughter - she truly is my Angel and if she hadn't been there today it would have been really difficult.
We started with the hand machine and I wasn't prepared for being left on my own with Cameron to supervise him and do therapy with him for ten minutes. Those ten minutes felt more like twenty.
I think somebody forgot to explain what was going to happen. So when I was asked if I'd brought a book with me or was I happy to use the book in the room I was a little stunned and caught off guard. All of a sudden seeing parents walk out of appointments with books and ipads made sense. I'd often wondered why.
Each session Cameron will be wired to the machine through his left hand. The treatment machine doesn't use sticky pads like the machine we'd used on Saturday, instead it uses wet sponges and a bandage to keep everything in place. Oh no, my brain was saying as our doctor walked out of the room leaving us to it.
Immediately Cameron's fingers started to twitch and this stunned and troubled Cameron. His fingers didn't twitch on Saturday. Plus the sponges were dripping and Cameron was unhappy that they were dripping. Thankfully I had paid attention on Saturday and knew that the goal during the hand machine was to get Cameron to find colours and animals but the book I was using had excessively busy pages which I think were too busy for Cameron to cope with at the moment and were full of every object imaginable. He was also supposed to use his left hand that had twitching fingers to point at the colours I was asking him to find. He wanted to use his right.
Cameron didn't really settle properly at any point while the machine was on. He will improve but it was an unexpected jolt from our usual relaxed appointments and I didn't feel very comfortable.
To his credit Cameron didn't rip the bandage off or pull the cords out. He did give up on the book so in the end we just had to sit there.
However a lot of praise is owed to My Little Angel. She was amazing. She watched everything as it was being set up and quickly realized I couldn't hold the book up for Cameron, find items for Cameron to find, restrain Cameron from the cords and bandage, point to pictures and restrain Cameron's right hand all at the same time as wipe away the water and comfort and reassure Cameron whilst keeping him focused on the task at hand.
As I struggled and had bad therapy session and hospital flashbacks My Little Angel climbed up next to Cameron and started speaking in a beautiful calm, comforting voice. She held his right hand and started pointing to pictures to help me focus Cameron. She reminded him to use his left hand and wiped the water from his leg. She enthusiastically found the pictures we were looking for and playfully had pretend trouble looking for others. She praised Cameron when he found a picture and only encouraged when he didn't. When it all became too much she started to read him a fairy tale to help me keep him seated.
Things will improve as Cameron improves and at least next time I will be prepared - I will take some of Cameron's books. I could have taken the beautiful Playschool colours board book we bought him on Saturday but unfortunately less than 24 hours after we purchased it Cameron had weaved his usual magic. (It's worse now)
I'd like to take the ipad but I don't think the ipad and water should mix which is a shame because I have downloaded some brilliant colour and animal apps. Oh well.
As for my wonderful daughter - she truly is my Angel and if she hadn't been there today it would have been really difficult.
Complicated!!
ReplyDeleteWhat are you hoping to achieve with this therapy... sorry to be nosy, but am interested in what it is all about! :)
You're not being nosy - I'm happy to explain.
ReplyDeleteCameron is non verbal. The purpose of going to The Institute of Functional Neuroscience was to hopefully help Cameron to develop some verbal language. After the initial tests we learnt that there were two major seizure centres in his brain which would block any therapy they could try for Cameron's language to develop.
Over the last 2 months the therapy he has had has significantly shrunk the seizure points so the therapy can now start to target the brain matter around these points.
Everything we are doing is aimed at helping the brain to develop to hopefully a normally functioning brain. Dr Beck said the hand stimulation will accelerate the work being done with the other therapies such as the chiropractic adjustments, the vibrating massage, the broom handle, cards and ball bouncing.
Each thing they are doing with Cameron is targeting very specific points in his brain. I have several other friends going there as well and it's fascinating to discuss what our kids are doing because everybody's plan and therapy is different because each of their brains are different.
Di have you read the other posts about when we started with the Institute in October last year? If you haven't you might find it interesting, particularly the day that Dr Beck stimulated Cameron's hand and Cameron was able to say a word he had never said before but only while his hand wa being stimulated.
I'm hoping I haven't confused you. It is a confusing topic. Please ask me questions if I have.
Thanks for the info, you haven't confused me at all :)
ReplyDeleteSo incredibly fascinating.... isn't it amazing what opportunities are available to help our kids!
My son is also non verbal, although he has autism, therefore, we have a whole different ball game! Nick has missed out on chunks of his early childhood development and our approach to go back through those stages again. It is working for us.
I haven't had a chance to go through the rest of your blog, although will do so when Nick goes back to school and I have more time.
I really like your positive approach to being a special needs mum... I am also that way inclined (although it has taken many years to get to where I am now!!!! ;))
Having a non verbal child is such a different experience and I don't think people can really understand unless it is their experience. We definitely have a shared experience.
ReplyDeleteThis last month has opened my eyes to how many basic development stages Cameron has missed so this year at school I am going to ask his teacher to ignore the age appropriateness and give him a pre Kindy program so he can go back and cover what he has missed. I was an early childhood teacher before Cameron got sick and I know how important it is for him to cover the basics. He's starting to show me that he is almost ready to learn some of the basics.
I have a philosophy that no matter what the situation there is always a positive to be found. It definitely helps me during the darkest of times. I've always tried to see the positive in situations but over the course of Cameron's life I have done a lot of soul searching and pondering which has helped me to stay positive.
You are right on the button, go back and cover what Cameron has missed, you have nothing to lose! :)
ReplyDeleteFor some strange reason, I haven't been too bothered about Nick's lack of speech (except for right at this moment... I guess because I am thinking about it!!)
We have worked a lot on our 'non verbal' communication and that has come together quite nicely. He references me for information etc etc..
I like your philosophy. :)