Piecing my life together

I have been and am still trying to piece together everything I should have known and still know very little about what I deal with.

Myself and others with Cerebral Palsy will deal with issues around Sensory Integration. Sensory integration is the mental and physical framework within which our nervous systems respond to sensory input, so that we respond accordingly. It enables us to understand the significance behind a particular movement, texture or sound.

When a child has a brain injury, their perceptions aren’t balanced and therefore will either have a decreased or an increased ability to process. In my own case I have heightened reactions and difficulties with textures, foods, touch, smell, taste and sound.

The good thing is I know what I’m dealing with now, but the bad thing is other people having to conform to what I deal with and that can prove enormously difficult, particularly as nothing of what I deal with is clearly obvious so it’s easy to forget the problems exist, so I am continually having to point things out.

My hearing is the worst. Conversations take place and yet I have no recollection of those conversations and that often gets me into trouble, when others think I’m not listening, but I’m actually not hearing what’s said. Simple conversations one a one to one that don’t involve too much concentration I seem to be okay with, but conversations that are more strategic and involve more dialogue I struggle with.

Over the last 7 years I have become more, which has meant I’ve had to learn as I go on the job, to understand the way I function and that’s been difficult, because I’ve had to work everything out for myself.

It would be like getting to know me for the first time and not really knowing what makes me, me at all.


14 Nov, 2014

8 thoughts on “Piecing my life together

  1. My son has SPD (sensory processing disorder) and things can get pretty intense around here. He is also deaf in his right ear.

    I understand what you’re saying. Others just don’t get it and think that our son is having a tantrum, when all he is doing is getting frustrated I’m sure.

    When you have disorders like SPD, it is always harder for others to understand, unless you live with it.

    1. Yes others won’t always get it. With little understanding it’s not always surprising, but if we have compassion and we want to learn and understand I’m not sure we have to live with what others live with. We just need to understand.

      It is of course harder as a child to deal with issues like SPD (sensory processing disorder) because children can’t always explain and don’t always understand things themselves, but as a parent it’s important to distinguish whether a child is being naughty because they are frustrated or simply being naughty because they’re a child and aren’t getting their own way.

      I feel for your son, but sure with you by his side, he will go on to adapt into his life as he gets older. In my own case had I have had support, particularly with school, my parents will have understood why I struggled to learn and understand. These things tend to affect us in the different circumstances we find ourselves in.

      We just need to want to understand. Thanks Lisa.

  2. Yes, I feel like I’m having to do this myself, but it seems like some of the pieces are missing!

    I’ve had to really consider that I may have had a Traumatic Brain Injury from what I’ve been through as a child. There were many times I didn’t receive the medical care I needed, so it’s no wonder I wouldn’t have known all these years.

    They have been learning more about it from the soldiers returning from war, which is how I’ve come to see similarities in my symptoms. It does seem like the hardest part is the fact that people aren’t very understanding of what we have to deal with on a daily basis.

    The only thing that really helps is to be able to talk to others who deal with similar issues!

    1. Thanks Randy. Yes it helps to be able to talk to like minded people who emotionally also have similar issues to deal with.

      As long as you can understand what you’ve gone through Randy, it doesn’t matter what other people think about what you’ve been through. It would be lovely to have their understanding of course, but what really matters, is what you think.

      You know what you know. I am happy to help. I understand what you go through. Although I deal with different issues to you, emotionally we still have to deal with our issues and get on with our lives.

  3. It is difficult to deal with anything that adversely affects our relationships with other people, especially as no-one really understands what we go through but ourselves; although an empathetic approach helps.

    1. An empathetic approach is a must, particularly if it’s something that person cannot change.

      It makes for a happier, more calm relationship when others truly understand and remember what we go through. Stress comes when there is little understanding of what we have to deal with, although I appreciate it’s not easy for other people either.

  4. In my case my audio sensory is heightened. Being in loud surroundings after a while I start getting anxious.

    I have trouble trouble processing information given to me, that’s why I prefer for somebody to accompany me to doctors’ appointments. I tend to forget what is said to me.

    1. Thanks Maria for being so honest about what you deal with. I can understand you taking someone with you to doctors’ appointments. It’s a lot to process, particularly when what’s being said is unfamiliar.

      I also have trouble processing information. I can hear what’s being said, but I’m not processing what’s being said, with long and detailed conversations being the hardest. I completely get you.

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