Monday, 2 June 2014

It's Been A Week of Ups and Downs

 
Cameron Drawing
It really has been a week of ups and downs and it left me exhausted. So exhausted that I couldn't even share on Facebook what was going on and if I talked to anyone about it I got teary. By the way, did you know my blog has a Facebook page This is No Ordinary Kid . I tend to post day to day happenings on there.

The week started off alright, Monday was a relaxing day at home until after school when we headed off to the chiropractor and Cameron did something so amazing that I forgot to take a photo. He did a drawing and gave it to the receptionist. He has never done that before - given a picture to someone. I felt a little disappointed that he gave his picture to someone else but at the same time I was over the moon that he had independently drawn his picture and given it away without any involvement from anybody. Quite a moment.

Tuesday started out okay with an appointment at The Institute of Functional Neuroscience and our next QEEG. We arrived and Cameron went in by himself for his test. I sat in reception a little lost but so proud and then something happened that has never happened in Cameron's whole life. The receptionist suggested I pop out to the closest cafe and get myself a coffee. I was only gone 10 mins but the freedom I felt realizing that I didn't have to worry about him having a seizure and knowing that he was in very safe, experienced and caring hands was amazing.

QEEG done we then moved on to his report and again it was wonderful news, in fact it was almost too good. The last treatment plan worked so well that we went too far and have to bring his brain back to what we were trying to do, so the treatment plan was altered. As we sat there discussing Cameron and the changes in him, we observed how differently he behaves in the reporting sessions now, as he noticed items in the room as if it was the first time he had ever seen them. He was very much like a toddler getting into everything.

Next was his treatment session and he was much happier with the new treatment plan. He is now only linked to one machine so his hands are free and instead of growling for 10 mins he happily sat and looked at a magazine.

Tuesday afternoons is when Cameron goes with his carer to Kelete, his Musical Theatre group that he's been going to for years. His carer didn't arrive and I had one very agitated and upset young man standing at the front door growling for 45 mins until I had to make him come with me and his sister to her appointment. The next day we found out his carer had been sick but that didn't help me the night before when Cameron was still looking for her as I drove him away and nor did it help me as he became agitated and unco-operative in his sisters appointment.

Wednesday seemed uneventful until Cameron arrived home with his carer without his jacket and apparently no way of retrieving it for a week. I was a little frustrated to say the least since it's winter and he needs his jacket so I had to head out to horse riding on Thursday to retrieve it.

So far the week hasn't been so bad but then Thursday after Cameron arrived home happened and there really isn't any nice, clean way to describe this so if you can't cope with discussing bodily functions or what comes out of bodies you should probably stop reading. I have been torn between talking about this and not but the whole point of this blog is to raise awareness of Meningitis, the after affects and what life is like living with a child with special needs and this is my reality.

We have been dealing with a delicate issue lately with Cameron - excessive masturbation. Some afternoons at least once an hour for several hours, in addition to mornings and evenings. We have always accepted that Cameron is a sexual being like the rest of us but taught him that there are socially acceptably ways to express his sexual side - in other words, in his bedroom. Lately he hasn't managed to keep his urges to his bedroom and it is rather confronting to walk into the lounge room and find him mostly naked and enjoying himself. Our present home is quite small so there is no avoiding him.

All week I had been dealing with this issue each afternoon and it was getting to me, My frustration was growing. So Thursday afternoon I didn't really have a lot of calm left when I walked into Cameron's room to find him naked, with a pull up full of faeces on the floor and faeces smeared all over his bed where he had been sitting to masturbate. Thankfully the bed hadn't been made yet and the waterproof mattress protector was what he had sat on but it was confronting.

My nerves by Friday were on the edge, I hasten to add that there were also extended family issues going on and MLA had had an issue during the Tuesday appointment, that we had had to take Cameron with us for, which had by itself stressed me. I couldn't stand the sound of The Wiggles coming out of his ipad and I was fed up with growls about everything, it was getting hard to see the good bits of life. and then he did it again but this time on his made bed and he was still there when I discovered him. I snapped.

I hate it when I snap because I can hear myself exploding and I know I need to calm down but I am so stressed it has to come out. Cameron knew he had done the wrong thing but clearly he doesn't know how to control himself.

I know this is a developmental stage with Cameron and I know he can't help himself but living with this reality is really hard and these moments just about always happen when I am on my own with him. I also know that children go through these stages and parents all around the world are dealing with the same issues but... my child is the size of an adult with bodily outputs the size of an adult and I am tired after 18 years of doing this. It's gross, it's yuck and I don't want to deal with it but I have to and it's not fair.

I had my melt down, I cried on my Mum's shoulder and I drank some wine and then after an internal discussion with myself about how I am going to cope with this I switched off another bit of my heart because I know it's the only way I can cope, the only way I can stay calm in these situations. I've done this twice before but I'm sure I will discuss those other times as our story progresses in Why Cameron is No Ordinary Kid . It doesn't mean I don't love Cameron it just means I have switched off the place that reacts so that I can cope.

So that was my roller coaster of a week. Cam and I have kept our distance over the weekend. He had a wonderful time last night at a birthday party but I might write about that in a happier post and tomorrow we will start again and hope it's a better week.

2 comments:

  1. Hey, Jane.... I hear you and without going into details, I know exactly what you are going through. I am sorry that we mums have to experience stuff that we shouldn't actually be exposed to. I am sorry for everything and you are right, it is not fair. Sending you a huge cyber hug. xx

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    Replies
    1. Thanks. Life can certainly get challenging with children like ours. Hopefully life will get easier for both of us.

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