Maxwell vs Therapy

Now that Max is walking and (so far) showing no sign that his leg is affected, I can focus our therapy primarily around his hand/arm functioning. I enjoyed taking a break from intensive therapy over the last few weeks and I needed it. Therapy with Max can be (almost) as frustrating as it is rewarding. He's stubborn, cheeky and quick to figure out his own way of doing things. I have no idea where he gets it from ;-)

Our OT sessions have always been a struggle for him. Part of this problem has been OTs giving him activities that are too hard. Sometimes, they're a few months wrong with their developmental milestones and that can be significant at Max's age. A few months ago, an OT told me I could teach Max to brush his hair by demonstrating it and then letting him have a go. So, that afternoon, I grabbed his brush and demonstrated "this is mummy brushing her hair, this is mummy brushing Max's hair". When it was his turn, he donked me on the head with the brush and toddled off.

Another problem, is Max's steadfast determination to find other ways of doing things. A few weeks ago the OT showed him how to pull some blocks apart. When it was Max's turn, he stared at the blocks for awhile and then bashed them on the table until they broke apart. Hilarious, but not the point baby.

Max is also very adapt at using his feet to do things. We have a toy letterbox, I hide things in it, hold down 'lefty' and make righty open it to get the 'treasure'. It was a great game for a few days until he figured out he could kick the letterbox over and release the treasure that way instead.




And then he smiles like this and tries to charm his way out of it

The hardest part for me, is summoning all my positive energy needed to motivate and encourage him. Positive encouragement spurs him on and works a treat but sometimes it's draining.

At the moment however, I'm pretty pleased to have figured out a system that works. One of our Snowdrop exercises is 'contrasting sensations'. I have lots of Tupperware containers full of different sensory activities (dry pasta comes in so many awesome shapes). I have rice, couscous, shredded coconut, slimy things, sticky things, fluffy things and cold things. I keep them in a place he can see them but not touch them, something so devilishly tempting for a one year old.




This one is fun. Bag of rice with 'treasure to find'




Slimy ball things




Max has to grab a few handfuls of frozen peas after each meal. Initially, he wasn't fazed by the cold sensation but now it's starting to annoy him. Success!

Every day, we do several short 'bursts' of constraint therapy. He has to grab a few handfuls of something and feel the different sensations, whilst I cheer him on. I mix it up as much as I can, so he doesn't get bored. The other day, righty made a HUGE mess playing with tiny bits of pasta. It was an awesome achievement for righty but I'll admit it was a slightly soul destroying mess to clean. It's getting colder now and raining a lot so we're doing more of this inside. Summer was great, we'd do stuff outside in different parks. We were the weirdos in the park playing with couscous.

The awesome thing is, that this system works and righty is showing improvement. I've learnt that doing activities in small 'bursts' maintains his interest, and keeps it manageable for us both. I've also learnt to only do therapy when I'm not already flustered and to seize the moments when he is motivated. I also do sneaky therapy while he's asleep such as massages and stretching he won't let me do otherwise.

I sneak therapy into day to day life and find myself doing things, that borders on what must look completely ridiculous to others. When we're out walking, I pick different leaves and flowers from people's gardens for him to 'inspect'. It's a great sensory activity, though he does look like the Bush Tucker Man sometimes.

When we're at the supermarket, I position his pram so that 'righty' is alongside something alluring so that he reaches for it. Things like crinkly chips, cat toys and 'red spot special' signs all get righty reaching and practicing his grasping. I know I'm setting myself up for future problems but right now, I couldn't care less. 'Mr Righty' could commit a brutal stabbing and I probably wouldn't mind (I'd possibly be proud).


Righty about to pull the pigs tail

We're also doing lots of work with his language development. Being proactive with this now, will hopefully prevent (or minimize) cognitive and learning problems down the track. We do flashcards, sign language and we're also learning animal names in Italian. We sing and have dance parties, where we both collapse in an exhausted heap by the end.







The improvements I'm seeing are phenomenal, but I need to keep the pressure up every day. It's all worthwhile though, for moments like this-





Um, you're meant to wait until after we sing Happy Birthday.





Dream big Maxwell. You can achieve anything.



Posted using BlogPress from my iPhone

The boy needs therapy!

It's really hard to search for answers, when you're not really sure of the question. Regular readers of this blog, will probably know that I've devoted a lot of time researching various therapies and treatments for Max. Partly, because I want to understand how his brain injury might affect him and partly because I feel that there's so much more we could be doing. The brains ability to 're-wire' itself (ie neural plasticity) is at it's greatest in the first few years of life. So, it makes sense that now is a really important time to be working hard with him. What complicates this though is that (a) He is still only a baby so problems with learning, behavior and cognition aren't yet apparent; (b) All of the 'experts' have a "we'll have to just wait and see" kind of attitude; and (c) All of the different specialities working with us don't really communicate that well with each other. For example.....For the first month or so after the stroke, Max could only look left. The physio and OT gave us loads of exercises to help him regain his visual tracking. Towards the end of his hospitalization, the Neurologist informed us that Max was looking left because of the lesions on his brain and that this was common after brain injuries. Well gee, thanks for telling us that now....

I'm feeling pretty happy right now about the supports we've got in place to assist in his physical development but I've been wondering what we can do to help him cognitively. My research has taught me that it's pretty common for kids like Max to have learning and behavioral problems when they get older. I wasn't sure if there was anything I could do to help him now, but I wanted to at least try. So, I've spent hours typing various words into google and following link after link after link. Some lead to dead ends, some I investigated further and a few, were absolutely brilliant.

I don't know how many emails I've sent off in recent months but it was a lot. Sometimes, I'd get replies back that were friendly, until I told them that I was only researching for now & wouldn't be making any financial commitment at this stage- they'd stop emailing. One service, bordered on harrassment and spent the better part of a week calling & calling & calling.... And then I got an email back from Andrew Brereton from the Snowdrop Program in the UK. Snowdrop is a Neuro-developmental program for brain injured children. Through the research I'd done, I saw some amazing results the program was achieving. The email I got from Andrew was from someone who genuinely wanted to help me. Andrews own son was severely brain damaged, he gave up his career as a pharmacist to study everything Neuro and managed to help his son achieve things that no one thought possible. When his son passed away, Andrew devoted his life to helping other children all around the world.

I spoke to Andrew a few weeks ago and completed an assessment for Max. Within that 40 minute conversation, Andrew gave me more answers than any doctor here had ever given me. He identified various issues that we'll need to work on with Max and he's in the process of developing a program for us. The basis of Snowdrop is that neural connections are formed through repetition. I don't know what our program will involve, but I do know it's going to be extremely intensive and challenging for us all.

I've learnt (so far), that Max probably has a sensory processing disorder. For example, we've had his hearing tested and he scored 100%. But, when you try to get his attention, you'd think that he was almost deaf. I tested this by banging saucepans about a meter away from where he was playing with his toys- no response. We know that he can hear us but things aren't being processed properly by his brain. Sensory processing problems are really common in kids with brain injuries. This kind of behavior is also common in kids with autism but at the moment, he doesn't fulfill the rest of the autism criteria. I pray that he never does.


- Posted using BlogPress from my iPhone