Sunday, 5 June 2011

Cameron is Changing

Cameron is changing and everyone who knows him and particularly those who have known him a long time are talking about it. Every day I am noticing something that Cameron is doing that he couldn't do a day ago, a week ago, a month ago.

He is suddenly able to walk across uneven surfaces without worrying or even looking to see where his feet should go. He used to be terrified of walking on any surface which wasn't perfectly smooth and would walk into things because he wouldn't look up for fear of missing his step. He clearly felt he would fall. Last week as we walked from his school to My Little Angels school he took off without me and ran/walked across four different uneven surfaces without missing a step. There was even a sizable dip between two paths. My heart was in my mouth because I thought he would trip but he was fine and very pleased with himself.

Cameron has always had trouble stepping over things because he would misjudge the distance and/or height. He was walking through a sliding door frame on Friday and I yelled because he wasn't looking and I thought he would hit the frame and trip. No, he stepped over the frame without a glance.

The best description I can think of to describe how Cameron runs is like a new born baby elephant in a hurry. Hunched forward, thumping along, swaying from side to side and threatening to take a nose dive into the ground at any moment. He will sometimes break into a run as we walk home across the school oval and I always watch him waiting for the nose dive which he narrowly avoids by stopping just in time or swerving into a circle. This week he ran off in front of me and not only was he kind of upright he also wasn't swinging his arms out and moving from side to side. His legs were closer together, he moved faster and he was very excited.

He is trying to say words again. Cameron used to have a small vocabulary of words which he could say until he wanted to add a new word and then in order to add the new word he lost an old word. Very frustrating. However over the last ten years his words have gone missing in action. He will come out with words occasionally but as a general rule he gave up on trying to speak. Over the last month I have noticed him trying more and more words. He isn't using them to communicate in a conversation he uses them to label and impress people. It's a start.

Cameron read a cereal box the other day. His sister was doing it so he did it too. I would love to know what he thought it said but it really doesn't matter, he was very proud of himself.

His fine motor skills have improved. Only a couple of months ago he would struggle to clean the food off his plate because he didn't have the skill to manipulate the cutlery to get the last mouthfuls of food off the plate and into his mouth. We would scrape the plate for him and hand him the fork or spoon with the food on it. I've been noticing empty plates and then I realized we're not helping him as much. He still has some challenging meals but there is a definite visible improvement.

We were dreading shaving but as all good things do, eventually we realized we could wait no longer and at Easter Cameron had his first shave. We expected him to react to the sensation by pulling away and probably fighting us like he does when we try to brush his teeth. It has been quite the opposite. He stands calmly and lets Dad or Grandad shave him. I haven't braved up yet. Unfortunately he still doesn't like brushing his teeth.

These and other changes are all very exciting but I have learnt over the years to control my excitement because quite often disappointment has been waiting around the corner and then I am crushed with grief and despair. I know why these changes are happening and this is why it is so hard to let my hopes rise too high.

Cameron has not had a seizure for eleven months and that is the longest he has gone for over six years. Up until eleven months ago he was having a major seizure, which put him in hospital after an ambulance dash, every three to four months. For the last ten years Cameron has been having these terrible seizures which rob him of his achievements. His brain has finally had a chance to recover and recuperate and now it can learn again.

I really, really hope these changes we are seeing are here to stay and I hope Cameron never has another seizure ever again but I am still on guard and watching constantly for fear I am going to hear that stomach churning sound of Cameron convulsing and then having to watch and see what he can and can't do after he has recuperated.

In the meantime I am going to celebrate with him all his new found skills and enjoy watching him play in his new world. I'm going to be dragged around the house labelling everything in sight like Dad was the other morning and I am going to love it because we've never been able to do this before.


  1. I really look forward to reading your stories . Sometimes with a smile and chuckle and other times with a tear .

  2. I'm glad you looking forward to reading my blog. It's nice to know that I can make people smile and chuckle as well as cry.