Peaking Inside My Non-verbal Son's Brain - our first foray into Brain Computer Interfacing

My son is locked inside of himself. There are countless moments when we catch glimpses of his personality and his intelligence, but he is such a tough read that it is takes a village to try and figure him out. I am going to write a post about starting school soon, but I can not wait to share this exciting experience we had yesterday as it is a day I will never forget as long as I live.

Brain Computer Interfacing - it sounds like something out of Star Trek or something that only the Elon Musk's of the world have access to. Thanks to #NiagaraChildrensCentreSchoolAuthority and especially to #HollandBloorview (see their website for the research program here), William is one of two students at the school who have become part of a joint research project and thanks to that we now have definitive proof that my son not only understands the world around him and what is being said to him, but also that he has strong emotions inside waiting to bust out!

There are a lot of technical details I could go into (and if you want me to, just ask) but for now I am going to live in the moment that was William's very first time using the device.

Thanks to the generosity of Holland Bloorview, the team came right to the Niagara Children's Centre School to train the staff on how to use the device. Honestly this was huge for us as we are coming off of 7 nights with no nursing and only one day of school last week (no school means no day nurse) and then in the morning there was no nurse available to go to school with him, which meant he was stuck at home again with Mama. We turned an ugh into a sweet morning of snuggling under the covers for hours and accomplishing nothing! But I digress, just want to say how amazing it was not to do the long drive to Toronto in this new level of exhaustion we have discovered.

Here he is getting ready to go in - okay not looking too impressed because he is still wearing his goldfish hat (it was his big brothers and so stinking cute - he did not agree! like I said, sometimes it is easier to see what he is thinking).

This is one of the team from Toronto introducing William to the headset he will be wearing. I adored how she was focusing on speaking to him directly and explaining things to him as it went. Here is a video where she began her explanation to him as she put water on each of the probes which will work as a conduction agent....

Did I mention how much I loved how she spoke to him?! Here is another video that shows her mannerisms and directness which the ideal way of interacting with him. I am so grateful to find people who talk to him and give him time to respond, but to see someone get down to his level, look him directly in the eye, take time to let him process and be so encouraging - well this Mama's heart is overflowing. I love they let him explore the technology before putting it on. You see one of the amazing NCC School staff putting on the headset. When she says "look at all the green" there is a picture on the computer screen that indicates when each probe is properly in place by lighting up green.

Once the headset was situated properly, William had to train the computer program how his brain works. At first he had to do a quiet mind, try to relax and be calm. He did this amazingly well and the computer got it right away. Then we had to pick an action thought that would activate a certain part of his brain - his sister Daisy is a huge motivator in his life so we chose swimming with Daisy as his action. Here he is training the computer on his active thought.

I can not describe the feelings of hope, love, anticipation, and support that filled the room at this point. We were all on tender hooks to see if it worked. With bated breath we watched as they hooked the program up to a light up box that would turn on when he thought of Daisy and swimming....

and HE DID IT!!! (the lights are being turned on and off by a staff member to reinforce the light up toy - but every time the toy lights up it is because he is doing the active thought of swimming with Daisy.) For ten minutes he had so much fun lighting up the toy in front of him and was able to take breaks when he needed them - in the quiet moments the computer acknowledged and the toy stayed off. It is a lot of work to do, which the adult staff of NCC School confirmed as they had tried it in the morning. The joy and celebration in that room was incredible.

Next they hooked the computer up to the smart board with a program he does in his regular school day where he has to touch the screen to make the swirls begin. He is familiar with the effect but had to chance the cause from touching the screen to thinking about swimming with Daisy to have it light up. Every click indicates a conscious thought of her.

I had to sit down at this point but I'm sure you can see by my shaking how overwhelmed and amazed I was. To see my child, who has been locked inside for so long, be able to express himself and have the independence to turn this on and off on his own - well how do I describe that?! There is so much more to William than people think, and to see him exceed expectations just filled me with so much joy. He did the squiggles for another 15 minutes and she talked to him about what she was seeing....

William is the youngest participant they have ever had and set a new record for them. She told us that they never expect 'amazing' the first time trying it, but that he was pretty darn near perfect. I honestly can not even do justice to all the emotions inside of me. Gratitude, Joy, Determination to keep opening up the world for him, Hope for possible communication in the future, Shock that it was such a success (I knew he would do awesome but truly expected a learning curve - I love that he proved me wrong) and yes guilt that we were experiencing this while there are so many other children who would also do really well with it - but I try to justify it that if he can just push the limits to create pathways for others - well than the sky is the limit. The more we can support these research projects the more chance they have at getting funding and expanding their doors to more participants. Now forgive me, but I need to go rewatch the videos yet again!!!!