Skip to main content

Doors to the Mind

I've always watched Roo do something and wondered what is going on in his mind...I would love to be able to just have a glimpse of what his mind is like as with my other children I know what they are like from the every day conversations we have , their imaginative play and through their drawings / writings.

 I often think of Roo's mind as a hallway of different coloured doors...



..each door goes to a certain part of his mind...each door has a name ...some are open, some are ajar, some are firmly closed with no way of opening them...maybe in the future we will be able to open it..one can hope..

The door with 'physical' on it is half open as Roo progressed a lot the past year..he has learned to walk, it has enabled him to gain a bit of independence in the house, to get things himself..he can climb a little, often dangerously and makes one heart stop! He is able to use his hands to feed himself with finger foods, but the reason the door isn't fully open is because he still cannot run, jump, feed himself wih spoon, dress himself, poor balance resulting in bad falls, mainly in his sn buggy majority of time we are outside for his safety, his gait isn't normal, he has low muscle tone, lack of upper reflexes ....but hopefully over time with the help of therapy he may learn those...he may not but that's ok as long as he has some independence...

The door of 'emotions' is slightly ajar...we know he cries and screams if something upsets him or if he is in pain, when he is happy he has the biggest smile for you, when he is really really happy he has the most infectious giggles that make you giggle along with him! When he is really excited he will shake and spasm which is normal for him..he also does this when frightened... Everything is done through learning his body language and gestures but we don't really know exactly how he feels about everyday things in life, if he understands love, with no communication or poor understanding it's impossible to know if he feels the different emotions, understand them...he is still very young so maybe over time that will progress...

The 'health' door is open a small amount...Roo is reasonable healthy but as he gets older we are seeing more issues arise, issues that may be connected to his undiagnosed syndrome..we are lucky that with regards to Roo health he has done very well and rarely gets seriously ill but there is still that worry of what else lies behind the doors? Will his health become more of a problem as he gets older? It's just a wait and see ...

The door of 'communication' has been one of the hardest doors to break open...we have been trying for years, SALT have been trying, his nursery have been trying but it's been a hard road and still going to be a long difficult road...the door is cracked, bursting at its seams with light shining around it...it wants to open but something is holding it back, stopping the handles from tuning to open it...Only recently we have seen something shine through the cracks...he has learned to say "daddy" again...he was able to say it over a year ago and then lost the ability to say it for almost a year and now he can say it... But whether it will stay this time remains to be seen...he also signed "eat" to me the other day...I nearly cried as it was the first time he was able to tell me he was hungry...but he hasn't done it again...he used to sign quite a few signs but then the cracks start to closen and he forgets , needing to relearn it all again...this is the one door that I want open, I want to be able to communicate with my son, to understand what he wants, what he thinks...we will keep battering that door until it opens one day ...if it ever opens...

The door of 'understanding' is another door that has been difficult to break...Roo understanding is quite poor for a child of his age...his understanding has been at 12mths for almost two years with only a slight improvement... But we are seeing some cracks in the door so that's positive and hopefully we will see some progress this year...

The door of 'music' is wide open! It's been the easiest door to open, Roo adores music, he thrives on it and it helps to keep him calm and happy, he is learning to hum along the rhythm of some music which is amazing...music keeps him interested...he has several musical instruments which he loves to play over and over especially the drums!! 

The door labeled 'epilepsy' is the one we want to avoid, the one we don't want to open but the past few months , most specifically the past month we have been knocking on its door and it's starting to become ajar...if only there was a way to seal this door permantly never to allow it to reach its full potential but with the absence seizures becoming more noticeable we have been told the risk is getting greater for that door to open... 

There are several more doors that will become important as Roo grows up but for the moment they remain shut, remain unknown just like his unknown disorder / syndrome...we may never get answers as these doors may never open...but then there is the possibility that we will get an answer and only then will these doors become known and open....




Comments