Sunday, 23 October 2011

Why Cameron is No Ordinary Kid - Part 49

We no longer needed constant observations so we had less and less visitors to our room. I was becoming quite lonely especially since most of our visitors no longer visited. Initially we were a novelty and everyone wanted to stop by and see us, especially trainee doctors but as time dragged on people disappeared. My mother had predicted this would happen and had warned me.

One night a friend invited me over for dinner which I accepted. I'm presuming I caught a taxi because I can't figure out how I got there but I do remember it was really nice to have a normal home cooked meal on a proper plate. Funny the things you miss.

Our doctor sat and discussed our situation including Cameron's health and our lack of a home. He decided we would stay in hospital for another week to allow us time to settle and get organized before heading out into the real world. He always looked after us as a family because he believed that it was important to ensure the parents were alright so they were in the best position to care, love and support their child.

Plans had to be made. My parents had asked their tenant to move out of our family home - which didn't please the tenant. They found him another rental in the same street but of course he couldn't move immediately so there was a month gap between when we would leave the hospital and when we could move in to our new home. My parents also wanted to get into the house and make a couple of updates, such as new blinds. They had given me the choice of which blinds I preferred which was really nice.

So, where were we going to live for a month. This is where Michael's parents came to the rescue. They offered for Cameron and I to move in with them until we were able to move into our new home.

Our last week in hospital was quite different. We started to feel different and a little bit like we no longer belonged. I was quite scared of what was ahead of us and how I was going to cope, I was dreading leaving but at the same time I was excited about getting out and being free to control my life again.

Saturday, 22 October 2011

Special Saturday - What is Your Child's Special Needs?



This week for Special Saturday we are sharing what our children's Special Needs are. Personally I think all children have Special Needs but some children's needs are more involved and at times more overwhelming than others.

My son Cameron was born with a normal dose of needs, nothing more than all the other babies on the ward. At five and a half months of age he developed Pneumococcal Meningitis and from that day to this his needs have escalated to become very special for him.

Pneumococcal Meningitis left Cameron with severe brain damage and only this week, sixteen years later, we have come to understand that damage more fully. It's sad but it is what it is and as much as I wish it had never happened I know that everyone in Cameron's life is better because of what happened to Cameron.

Along with the brain damage Cameron also lost all his hearing in his right ear. It is not easy to notice anymore because he has learnt to compensate and can in fact hear a pin drop or more importantly a whispered offer of chocolate. When he was younger we would watch him track noises by turning around in circles until he tracked the source of the noise he could hear.

One day at a party we met a woman who also only had one functioning ear. I am so grateful we met her because she was able to explain to us the hearing world Cameron was living in and from that day on we have been much more understanding of Cameron's reactions in crowded rooms, shopping centres and noisy environments.

Cameron has Epilepsy. When you say Epilepsy people tend to picture somebody dropping to the ground and jerking for half a minute to a few minutes. This is not how Cameron's epilepsy works and this week we finally found out why. When Cameron has a seizure it is a major life threatening event that lasts for hours. His breathing becomes impaired and we spend hours sitting in emergency waiting for his body to stabilize before he can be moved onto a ward.

Two days ago we finally found out why Cameron's seizures don't stop like other people's. His inhibitors in his brain which should stop his seizures no longer work and therefore his brain has no way of stopping itself. As terrible as it is, it's nice to finally know why.

So those are Cameron's labeled special needs - brain damage, deafness and epilepsy but these conditions lead to lots of other special needs such as lack of speech, lack of toileting, lack of independence, lack of daily skills, lack of social skills, lack of cognitive skills, lack of play skills and lack of general coping skills. He is a non verbal two year old trapped inside a sixteen year olds body.

So those are Cameron's Special Needs. We certainly don't live the life we expected to be living when our son reached his sixteenth birthday and at times his Special Needs become quite overwhelming but if it was a choice between having Cameron here with us or having lost him fifteen and a half years ago the choice is easy - I am so glad he is still here to share our lives and we never give up hope that as time goes by some of his Special Needs will improve or maybe even disappear. We dreamt he would walk and he did so anything is possible!



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This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.

Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturday.org/home/

Thursday, 20 October 2011

The QEEG Report

There was a sense of unrest in our house today. We were so busy not thinking about it and not allowing our hopes to get too high that nerves became a little frayed. Today was a big day and it scared us a little.

With My Little Angel safe with her grandparents we arrived again at The Institute of Functional Neuroscience. Today our appointment was with Dr Randy Beck.

He showed us a collection of colourful print outs which were the data from Cameron's QEEG. We spent quite a while looking at lots of different head shaped circles coloured blue, green, yellow and red. The not unexpected bad news was that Cameron's brain is not working like another teenage boy his age. The QEEG was able to show us where Cameron's seizures occur and then the surprising news was that Cameron has two areas of his brain which have seizures. We also learnt that Cameron's inhibitors are not working and that is why when he has a seizure it doesn't stop. Finally we know why his seizures are so long.

A very abridged version of the coloured circles. Red is overactive, blue is under active and green is normal. Cameron's whole brain is overactive which is why he sleeps twelve hours every night and sometimes is unimpressed to be woken up. He's exhausted because his brain is working so hard all the time. However at another level Cameron's brain is blue - under active. He is delayed in responding because it takes so long for his brain to process what it has to do. This is our Cam, anybody who knows Cam knows this.

The good news is that there are sections which are green and that is wonderful. And again, anyone who knows Cameron knows that a lot is going in but it just can't get out.

As our discussions continued Dr Beck answered every question we threw at him from medication and supplements to why Cameron has suddenly developed body odour after sixteen years of never sweating. His understanding of Cameron's situation grew. A few little tests were conducted so he could gauge Cameron's abilities and he was ever watchful as Cameron observed us and then joined in the discussion, in his own way. As usual Cameron was charming.

So what did this all mean - is there anything we can do or is it too late and too hard?

Dr Beck has offered no false promises but an evolving educated plan and if we can't achieve our dreams we will at least improve Cameron's quality of life. Cameron is a challenge and unique but there is hope so that is the good news. He is going to analyse the QEEG data further for greater clarification.

The treatment which would normally be advised can not be done with Cameron because of the two seizure areas so we have to work around them slowly and hopefully reduce the likelihood of seizures before moving in and doing what would normally be done. This is going to take a long time, possibly six months.

We are about to become a fixture at The Institute of Functional Neuroscience. For the next month we have three appointments a week then I guess we will reassess and make the next plan. Another supplement was added to the three we started on Saturday and we've decided to stop the supplement we were independently giving him so we can see clearly what is happening and not inadvertently undo what we are doing.

As well as the tablets Cameron has what we are calling his other medicine. At the moment he has two things he has to do every day to directly trigger certain parts of the brain. Everything is very carefully planned. He has to squeeze and bounce a ball with his left hand and he has to identify a picture from three picture cards twice - morning and night.

He had his first treatment in the surgery and you should have heard the giggling - it tickled. Cameron's giggling explained the patients, before us, long giggling session. I've never sat in a doctors waiting room before and heard a young child giggle and giggle and giggle from the consulting room.

The giggling was from body manipulations which were done down his left side from toe to head. Then he had vibrations down his right side. I know it all sounds a little strange but every single little thing was discussed and is for a very specific reason. Everything will trigger specific sections of the brain to hopefully encourage it to work normally - or turn green on the next QEEG.

Cameron is so at peace when we visit this surgery and everyone is incredibly nice. No question is considered silly and our concerns are heard. When our appointment was over and Dr Beck was saying goodbye there was no patient doctor stiffness, he threw his arms around me and told me what an amazing job we had done and told Cameron he was incredibly lucky, some parents would have given up. My Marvellous Man also got a hug.

I hope I'm not grasping at thin air and what I am seeing and hearing is true because as we drove away and tears started to stream down my face I felt this incredible sense of relief. We have finally found what we have been searching for. I looked over at Cameron who was very concerned that I was crying and I looked into his beautiful eyes and I know that we are going to find that key and unlock that door and let him out. He's there, patiently waiting and I can't wait.

Wednesday, 19 October 2011

Special Saturday - The Nicest Thing Somebody has Said or Done for Me

Over the years you find that certain events or conversations stay in your conscious mind. Sometimes it is obvious why and sometimes it is not but when you take a look you can often see how those conversations or events have altered the way you think or act.

Over Cameron's life time I have developed a growing list of situations and comments which have made an impact on me and some of them have been very positive.

The oldest memory which jumps out are my two friends coming into the hospital a few weeks after Cameron had almost died, for the sole purpose of distracting me. They talked weddings and bridesmaids dresses and gave me a taste of reality again. My brain was taken away from all the drama and medical jargon and I was once again just one of the girls planning my friends wedding. They showed me that it was alright to laugh and be me and I have continued that to this day, no matter how hard life has gotten. I am so grateful for my friends. It's still important to be me.

The doctor who looked after us in ICU went on to be our consulting doctor on the ward and when life settled down afterwards. Dr Paul Carmen was the most caring and thoughtful doctor. He was always running late but that was because he was making time for everyone. When you saw him he always stopped to check how you were even if you were in the hospital to see another doctor. When we had an appointment with him his first question was always - So, how are you? He meant me, not Cameron, me. He knew that if I wasn't coping then nor was Cameron. Then he'd ask about My Marvellous Man and then finally - How is Cameron doing? He always said that if the family wasn't coping then who would look after the child. The parents were most important.

The day I heard that Dr Carmen had passed away was one of the saddest days of my life. I still expect to see him pop around a corner of the hospital and say hi. I am so grateful that he was in our lives for eight years because he made a bigger impact than I think he ever knew and he is the only doctor at the hospital who has considered me and my needs so I can care for Cameron.

When Cameron was a toddler we were visiting my Grandmother in hospital and it was a locked ward because there were dementia patients. We had to unlock and lock doors when we arrived and left. When we arrived this particular day we had to manoeuvre our way past an elderly lady who was obviously trying to work out how to leave the ward. We said hello as we quickly locked the door behind us and left her to continue her mission. When we went to leave she was still standing at the door trying to leave. As we approached, discussing how we were going to leave without her joining us, she started to chat to us and admire Cameron. Then out of this little frail, confused, old lady came an incredibly moving comment - It doesn't matter, you just love him, some people never get the chance to love a child. She then looked really sad and turned to walk away. We walked out stunned and I've never forgotten her and her wise advice.

When Cameron was in hospital initially and we were learning about Meningitis and trying to come to grips with our new life I got a phone call from another parent who's child had had Pneumococcal Meningitis at five and a half months, just like Cameron. She told me her story and explained where they were in their journey eight years later. Suddenly out of the fog of uncertainly and despair I saw a tiny light turn on because this mother had shown me that life would go on and I would survive. I am still incredibly grateful to her for that conversation and the vision she gave me that day. She made me realize I was going to leave that hospital and my life was going to go on - just differently.

Eight years ago a total stranger walked up to us in a shopping centre and asked us if Cameron's back was sore. At the time we had an unco-operative Cameron and a crying hungry baby and we weren't really in the mood for a chat but he was persistent and I am so grateful he was. He told us about his Chiropractor and how he, as an adult, used to behave like Cameron because of the pain he was in. If he had not been persistent and we had not listened we would have missed out on meeting our family angel who has changed all of our lives but most importantly Cameron's. It just goes to show that help comes sometimes when you least expect it and in the most unlikely situations and disguises.

A friend once lent me a book which someone had lent to her and it changed my life. I wish I could remember the name of the book but it was about circles of people who you interact with on a daily basis and how to best interact with them to protect yourself. At the time I had been struggling with the comments people made and trying to figure out who I should stop and take the time to explain our situation to and who I shouldn't. This book explained the different relationships and interactions you have and who you should stop and talk to and explain your situation to and who really isn't worth the time and effort because they will move on and never have any contact with you again.

From the minute I finished reading that book I changed how I talked to people. I take the time to explain things to the people who I encounter regularly, give limited information, or brief descriptions to people who come and go from our lives and let people who pass through our lives, pass on with out feeling guilt that I haven't stopped and educated them. On the flip side of that, I give talks to rooms full of  strangers regularly and will talk and share with anyone who wants to know but I no longer feel guilty if I don't stop and explain myself to the checkout girl or the woman staring at us. I am never likely to meet those people again so my explanation is not going to make a big difference to my life but stopping and trying to make them understand will stress me.

I really wish I could remember the name of that book!

Eight years ago we met our Kinesiologist and she said something that I hang onto on a daily basis. I was discussing with her how a Neurologist had told me that Cameron had only five years to regain the function of his brain after the Meningitis and now at eight years of age I was feeling despondent that I had failed him because we appeared to be getting nowhere despite everything we were trying. She stopped and looked me straight in the eye and said - "We never stop learning, till the day we die we will learn, don't ever give up, it doesn't matter how old he is he will still learn. Does it matter if he's twenty years old and learning something a toddler would know, of course not, all that matters is that he learns." I am so grateful for that conversation, it still sustains me eight years later.

I found that when days were particularly hard or even weeks I would develop a mind speak that was very negative. I would discuss in my head how hard things were and tell myself what a terrible job I was doing. When you think about it, I hung out with a non verbal baby/child so who else was there to talk to. I went to a conference for work when I was working with children in child care centres who had special needs. During this conference they challenged us to challenge our mind speak and call what we had previously thought of as problems - challenges. That little section of the lecture during a two day conference changed me for ever.

Think about it - a challenge is something to be overcome, you will over come it one way or another. A problem can seem insurmountable, you don't always solve problems, they feel negative where a challenge can feel quite positive although sometimes difficult.

By changing that one little word in my head I completely changed my outlook on life. I don't know who the presenter was that day but I'm incredibly grateful that I was sitting there listening. I started slowly with the clients I worked with, calling their problems challenges, and suddenly my large workload of problems didn't seem so bad anymore, even the most challenging of cases became a pleasure to figure out how to overcome his challenges. I'd proven the theory so I practised changing the word in my head every time I said the word - problem. It was no longer a problem it was a challenge to be overcome and that is still how I think. I don't really use the word problem in my vocabulary very much anymore.

So there you go, some simple encounters in my life that made some big impacts in how I viewed life, coped with life and tackled life.

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This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.

Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturday.org/home/

The Institute of Functional Neuroscience

On Saturday we finally had our appointment at The Institute of Functional Neuroscience. This was the appointment we'd had to cancel a few days earlier because of a tummy bug which hit me like a bolt of lightning. That was the first medical appointment I had cancelled since the day Cameron got sick.

The Institute of Functional Neuroscience is lead by Dr Randy Beck who is a Functional Neurologist,  working with other doctors around the world with the newest technologies, is working with the belief that our brains have plasticity and therefore can change the way they work after trauma or change.

With My Little Angel off having fun with her grandparents, Cameron, My Marvellous Man and myself arrived on time for what felt like a turning point in our lives. We walked nervously into the waiting room and joined two other patients waiting. They were quickly ushered in and two more patients arrived. It seemed busy and yet there was an incredible sense of calm - despite the power cutting out several times and thus the computers grinding to a halt.

Our turn came and we walked into a simple room with a chiropractors couch, desk, chairs and some shelves with various medical gadgets. The neurology registrar we were meeting was really lovely and quickly set about collecting a detailed medical history, by hand because her computer didn't work. We discussed everything from how long Cameron was in a coma when he had Pneumococcal Meningitis to who in our families suffered from anxiety.

Cameron sat quietly in his seat for an incredibly long time and observed. He'd nod along with the conversation and seemed to stay totally focused on what we were discussing.

Every now and then a question was asked but I realized that our experience was probably different to what our answers implied so I'd stop and explain what it meant to us. Such as seizures. Generally when people ask about seizures they are thinking about someone dropping to the floor and having a seizure for seconds to maybe a few minutes. I didn't want this doctor to misunderstand so I took pains to explain that Cameron's seizures usually went for hours and only stopped after ambulance dashes to emergency and much medical intervention. It was so refreshing when I realized she was listening and not disagreeing with me.

After her pile of forms were full she excused herself to speak with the specialist. They both returned to speak to us. He said he wanted to run a QEEG but from reading our information he felt that the area of the brain that he wanted to stimulate and assess could trigger a seizure. Were we okay with that?

After a year and a half without a seizure you can imagine the knot in my stomach. Quickly my brain calculated my next three days. Was there anything booked that was so important that I couldn't be in hospital? We had plans but they were all social and really, my birthday was not as important as finding out what Cameron's brain is capable of.

The doctor assured us that three staff had been put on alert and the receptionist had been told she would have to call an ambulance. He had actually read our information and taken it seriously. He even asked which hospital we would want Cameron taken to.

Next was the physical examination. Cameron was quite pleased to be finally involved and was in top form. For the first time ever we didn't have to hold his head when she looked in his ears or eyes. He thought the reflex hammer was hilarious and convinced her to give him a turn. Then we moved on to harder tasks for Cameron such as turning his hands over and up and walking across the room - flat footed, on toes and on heels. I don't know what this doctor thought of us but we were in shock as Cameron concentrated and tried really hard to do things he has never done before.

Ironically when Cameron learnt to walk he used to walk on his toes and I would be forever pushing him down on his shoulders. Toe walking is not good. The habit broke and of course now he can't do it. But with encouragement and patience he managed to walk across the room twice on his toes - our mouths dropped open. Heel walking was a lot harder and eventually she gave up and sat him down. Patiently she taught him to flex his foot backwards and again we sat stunned as he clumsily pulled his foot up.

I don't know what it was but there was an atmosphere of positivity which Cameron tapped into and you had this sense of - anything is possible.

Eventually the physical examination was over and again the doctor took her notes to the specialist. With his blessing we moved on to the QEEG.

Now we moved into a smaller room again with a couch, desk, chairs, and some medical gadgets. Quickly Cameron was sat in a swivel desk chair, which he loved and his head was fitted with what looked like a swimming cap with dots all over it. A strap was placed around his chest and then gel was placed into each of the dots on the cap. As we watched, the computer screen had empty circles on an oval picture and they started to become red and then orange and finally yellow. Yellow meant they were ready to conduct information.

We sat on the couch and chatted with the two people working with Cameron as they distracted him with a book and kept him calm so the data they were collecting would be reliable. It took about 10 minutes and was so easy.

In the past when Cameron has had EEG's it has been a horrendous experience with most of the previous night spent awake because he needs to be sleep deprived. Then only one of us is allowed in with him and it takes ages to attach carefully measured electrodes to his head which must be perfectly clean. Then we endure at least an hour of sitting in the dark while Cameron refuses to sleep and keeps trying to get off the couch and generally not co-operate. At the end of it all three of us are exhausted and extremely tired. We take it in turns for who gets to sit in the dark.

This was so different, we were all chatting and just sitting in a room together relaxed. I was amazed when ten minutes was over and the specialist was brought in to take a look at the data and give his approval. Cap off - it was all over. Cameron thought it had been great fun.

Back we went to the registrar for the next discussion. What to do while we waited for the test results. They have three supplements which they like their patients to take - fish oil, vitamin B and a multivitamin - to prepared the brain for what work will hopefully be ahead. We also needed to learn how to breath properly to get oxygen to the brain. It's not hard - breath in through your nose, hold your breathe for five seconds and then exhale through your mouth. Easy! Hmmmmmmmm

Poor Cameron couldn't figure out what was going on and struggled just to keep his mouth closed. Then he wouldn't breath at all just held his breathe. We held his lips closed and then his nose, eventually he had a little success.

The appointment was over and it was time to book in for the QEEG results. I thought we had to wait a month so was shocked when she asked if we were free on Wednesday. So fast - I'm not used to medical results being so fast. The appointment was booked, money paid and supplements collected and after three hours we wandered out to the car amazed at what we had just experienced.

We collected My Little Angel and headed home and very quickly realized that Cameron was just not right. He was confused, angry and avoiding eye contact. We had plans but he wanted to watch The Wiggles and throw Lego blocks. We let him do what he needed to do and after about an hour and a half we watched his eyes soften and his demeanour calm. Clearly the three hour experience had been draining for him and quite possibly the QEEG had irritated his brain. We didn't rush him because we didn't want to trigger a seizure - eventually we headed out and he was fine.

That appointment was the first time we had ever stepped outside the hospital system apart from mainstream and alternative therapies. It felt strange but at the same time liberating - we were trusting our instinct and taking a step towards independence which is huge for us. We have always been guided by the hospital doctors who have done a wonderful job of keeping Cameron alive but it's time to see what else we can do.

Wednesday, 12 October 2011

He's Sixteen Years Old! But He Couldn't ..........


Today was Cameron's 16th Birthday. It is incredible to think that he has been with us for that long. His birth seems like it was yesterday.

It was lovely to celebrate Cameron's birthday with him so alert and aware of what it was about. This year he was excited about receiving his presents and took note of his cards. He was excited to hear his grandparents at the other end of the phone wishing him a Happy Birthday and he grinned every time someone mentioned his birthday. He didn't rip every bit of wrapping paper up into a thousand pieces and hand each individual piece to you as he painstakingly unwrapped his gift but he did still annihilate most of the envelopes his cards came in because he couldn't figure out how to open them.

So what do you give a sixteen year old with a mental capacity of a one to two year old? I dread that question because half the time I have no idea. This year we went for something a little different and I'm already regretting it. We gave him a radio toilet roll holder. We thought it might encourage him to use the toilet and sit for a while - as you know he loves listening to music.


It may well do what we hope but I really should have paid more attention to the box because I missed the bit about the alarm button which of course Cameron found before he found the radio. It is loud and shrill and makes the CD player on full volume sound pleasant. Oh well, I have no one to blame but myself. On a positive note My Little Angel gave Cameron two new CD's so at least we have some new music to listen to loudly and a new Wiggles DVD to watch.

We had a family gathering this evening for Cameron's birthday and we ate his favourite take away - Pizza. His birthday cake was a collection of cupcakes which My Little Angel and I spent the afternoon baking and decorating. No two cakes were the same and we were pretty proud of our efforts when we stepped back and took a look.


Cameron blushed when all the fuss began about his birthday cake and the candles were being lit. He beamed as we sang our raucous version of Happy Birthday and then everyone encouraged him to blow out his candles but that was when my heart sank for him. He couldn't do it.

We spent years and years in therapy sessions teaching Cameron to blow out candles. He eventually learnt how and then he went from the kid who couldn't blow out candles to the kid who would blow out any candle in sight. At birthday parties we would have to throw ourselves in front of him or put our hand over his mouth and pull him away from the table so he wouldn't blow the birthday persons  candles out, sometimes before they'd even finished being lit. If he saw a candle in any situation he would blow it out because that was what he had been taught to do.

Then all the terrible seizures began and slowly the skills he had learnt started to disappear. Blowing out candles hung around for a while but a few years ago it disappeared. We didn't notice at first but it hit home when he stood in front of his birthday cake and looked blankly at us. I wanted to cry.

With all the wonderful things Cameron has been doing lately I secretly hoped that blowing out candles might have snuck back in but it hasn't so lots of people helped blow out Cameron's candles for him before he then spent forever trying to decide which cupcake he would like to eat.


My baby is all grown up and looking every bit the young man. We have a lot to be grateful for - for one he is still with us and we were able to celebrate his 16th birthday with him. He is alert, happy and learning again. We are surrounded by wonderful family and friends who support us and Cameron in every way they can and Cameron shows us every day how much he loves us. We are so lucky.


Happy Birthday Cameron




Tuesday, 11 October 2011

How Many Hours?



As I sat in Outpatients this afternoon waiting with Cameron for his Epileptologist appointment the thought crossed my mind - How many hours of my life have I spent in this waiting room - waiting?

For fifteen and a half years I have sat in that room watching the world go by. It has changed over the years, walls have been painted, new flat screens installed and the colouring in sheet themes have changed to include new TV characters. Today I was surprised by a new admin system, I no longer have to put my little slip of paper in a box to alert the nurse that we have arrived. It felt really weird to not do something that I have done hundreds of times before. Sometimes several times in a day and some weeks, almost every day.

I once spent all day in outpatients for an audio appointment. We watched them close down for lunch and then we were asked to leave and let back in later. One day we sat until 8pm waiting for an Epileptologist appointment. There is a cleaner who one day commented about the day patients were still waiting at 8pm at night and I said - I know, we were one of them.

I've watched parents abuse receptionists and storm out because they've been waiting twenty minutes! I've watched children sleep and parents fret. Toddlers run away and get into strife in consultation rooms and children throw playdough at walls.

Every time we visit I take note of the faces I know and have known for many years. Today there was only one. We used to have a receptionist who knew us so well that she would leave her desk and come and talk to Cameron to while away the hours. It was very sad when she finally escaped the abuse of parents who didn't understand that it wasn't her fault they were waiting. She was a friendly face that we looked forward to seeing.

We've visited a lot of the departments in outpatients - ENT, Audio, Opthamology, Neurology, Epileptology, Pediatrics, Psychology and a couple of others that I can picture the rooms but not the departments name.

Sometimes there are happy moments associated with visiting Outpatients such as when the Clown Doctors visit with their zany entertainment and distracting games. Our favourite receptionist once gave Cameron a special car racing Teddy Bear which had been donated by a racing car driver. Occasionally we catch up with an acquaintance or student from our school but very rarely. You would think with all the hours we have spent waiting and the thousands of people we have sat waiting with we would see people we know but no, hardly any.

There is a certain level of stress associated with waiting in Outpatients related to toileting, sustagence and boredom. Murphy's Law if you take your child to the toilet your child's name will be called and likewise if hunger or thirst gets the better of you. Even worse if your child vomits or empties their body in some other way - the staff don't seem prepared for such events and you always end up feeling very uncomfortable while mild attempts are given to assist you. (If you're lucky) Over the years I have seen every possible way to occupy a child happen before me but ultimately they have to wait and Cameron has learnt to be extremely patient and sit quietly while he waits.

It seems strange to look back and remember when I first walked into the strange new world of Outpatients with my baby in my arms and now I walk in with my teenager by my side. I've learnt to be extremely patient, observant and on guard for any run away toddlers who may collide with my shins at any moment. I've met some interesting people and observed some interesting things but I do wish I could get back all the hours I have spent sitting in those uncomfortable chairs staring at those boring walls and wondering - How much longer?

Sunday, 9 October 2011

Why Cameron is No Ordinary Kid - Part 48

The trip to ICU to remove Cameron's mainline had alerted staff to the seriousness of Cameron's daytime sleeping problem and people came in to discuss it with me. Nobody could figure out why Cameron was not responding to any medication. They tried everything they could think of to make Cameron sleep at night.

One day I was chatting with my mother in law and a single comment changed everything. I was lamenting the fact that Cameron was not responding to any sedative and she casually remarked that he was just like Pop. What? Oh my goodness, could this be a family trait?

That evening when our doctor came around for his evening rounds I told him what she had said and he looked at me and said - well, lets take him off everything and see what he does. Can't hurt. By this stage he was taking a combination of drugs in an effort to get him to sleep. That night he didn't have any.

It didn't happen overnight but it did happen. We had to let the drugs that had built up in his little body subside and when it did my baby woke up and he finally slept when the sun went down. I am not going to say he was perfect because he wasn't, he still woke during the night like other children do but he got his days and nights around the right way and I started to get some sleep at night. It was wonderful.

When people came into our room during the day they saw eyes instead of eyelids and it was easier for the therapists to work with him because he wasn't as tired during the day. Up until now he had been woken up for therapy and wasn't really fully awake.

You would think with Cameron finally free of all attachments and now figuring out day from night I would be feeling relaxed and content but instead my anxieties were rising again. Talk started to switch from Cameron and his condition to when we would leave hospital. My stomach was in knots, the hospital was now my home and I was not prepared for what was outside. The world I knew was gone, how would I cope and what would I do.

Everything was different, I wasn't me anymore and Cameron wasn't Cameron. Our home wasn't there to go home to and Michael wasn't there for us each day. How was I going to recreate our lives?

Saturday, 8 October 2011

Special Saturday - Tips for Parents of Children with Special Needs

The one thing you learn when you have a child is that people - total strangers - give you advice. Then when your child has special needs it feels like every single person must give you advice whether they know you, have ever met you or know anything about your child's condition.

Advice is important and sometimes someone completely separate from the situation can see an avenue or option because they don't know what they are talking about and are not hampered by narrow thoughts but on the whole the best advice comes from other parents living the same experiences as you.

This week for Special Saturday we're sharing tips with each other so I thought I would let my mind wander and make a list of my own personal tips:

- It is normal to grieve. Grieving is part of the journey we are on. You grieve the life you thought you had and the life you thought your child was going to live. Don't fight the emotions, acknowledge them and let yourself grieve - you will feel better afterwards.

- Your grief won't end after a good cry. In fact you may find yourself watching a movie, a group of children playing or a mother cuddling her newborn child and you will feel the tears forming again for many years. But you will understand the tears and you will know that they will leave just as they have come.

- Don't let your child's condition define you. You are you and don't ever lose that. You're still a wife and a mother, a sister and a wife, a best friend and an aunt. Be all those things to all those people and enjoy being you.

- Accept that your life has changed. If you fight it and don't acknowledge it you will make your life harder. Things are not the same and they won't be again but that doesn't mean that it is all bad. There are positives and advantages some times so enjoy them. Of course we would give back the positives and advantages in a blink of an eye if it would turn back time and take away whatever has happened to your child but we are not magicians and no matter how hard we wish and pray this isn't going to happen.

- Learn to be flexible and adaptable. It makes your life a lot easier. For some of us that means becoming more structured than we would like and for others it means throwing away the clock and timetable and doing what needs doing when it needs doing. Go with the flow and don't worry about what other people think, they don't live your life.

- Take time out when you can. If that means sitting and staring at mindless day time TV while your child finally sleeps peacefully on your lap, then do it. The dishes can wait, the washing isn't going anywhere and if the beds don't get made - is the world going to end? No!

- Have fun! Our lives get very serious and sometimes down right scary. We sometimes forget to have fun. Watch a funny comedy or tell some silly jokes. Sing silly songs in the car or pull faces in the mirror while your washing that face again. Laughter truly is the best medicine and it costs nothing.

- Find the positives in even the darkest of moments. I promise if you look you will find them. It is very easy to see only the negatives because we are stretching ourselves, we're exhausted and sometimes the future doesn't look so good but by stopping and finding the positive it makes it easier and much more bearable.

- Hang on to your friends. Don't turn away from your old friends because they don't have a child with special needs. Your friends are important, they ground you. They will learn and grow with you on your journey and if a friend turns away from you - they weren't really a friend, let them go.

- Make new friends. It is really important to make connections within the Special Needs community. It really doesn't matter what your child's diagnosis or condition is, connect with other people who understand the pain, the frustrations and the exhaustion of having a child who isn't like the others. In return they will fully understand and celebrate your successes whilst also supporting you through your darkest times and frustrating challenges.

- Call every obstacle, problem, trial and tribulation a CHALLENGE. The word challenge infers you can overcome it and believe me when you change your mindset from problem to challenge it becomes easier to cope with what was once insurmountable.

- Be open minded and look outside the box. It would be awful to miss the therapy that could make a difference or a wonderful opportunity because it isn't mainstream or isn't what others think is appropriate.

- Don't tell yourself off or bring yourself down. If you catch yourself talking to yourself and telling yourself that you are doing a bad job - STOP. You'll feel heaps better not hearing that voice inside your head criticizing yourself and once it has gone quiet and still inside your head you can start to find the positives and tell yourself how amazing it is that you are still here and coping.

- Some days are really hard - but it will get better - eventually.

- Trust your instincts. You are your child's mother and you are the person who knows your child most intimately. Instinctively you know what is right or wrong for your child and when you need advice and when you don't. Listen to your instinct, it saves a lot of time.

- Accept that you are doing the best you can do right now and many years down the track you will look back and wish you had known then what you know now. But that is not how life is, we grow and learn and change and we can not turn back the clock but we do learn from our mistakes.

- It doesn't matter if your child can't hear, understand or speak tell them everyday that you love them, are grateful that they came into your life and that you are very proud of them. Some days just still breathing is a huge achievement and your child needs to know that you know that.

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This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.

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Cam's Friend Sam


Friends are so important in our lives. When you don't have friends you're life is a little sadder and poorer. Friends share your ups and downs, successes and failures, joys and desperation's. We rely on our friends to sometimes show us the way and share their knowledge and in return learn and share from us.

A lot of people living with special needs don't have friends. Not friends in the true sense of the word. They have lots of friendships but not those one or two very special people who share their lives no matter what and sometimes feel closer than family. It's hard to make friends when you are different and can't share the same activities and experiences which is often how friendships are formed.

Anybody who has ever met Cameron knows how friendly he is, human connections are very important to Cameron and he leaves an impression with just about everyone he meets. He has a loving family with lots of cousins and second cousins, doting aunts and uncles and grandparents. He has our sizable friendship circle where everybody loves Cameron and accepts him, allowing Cam to be Cam and encouraging him in every way. All of these people look out for Cameron and celebrate his successes whilst also sharing our sad times and being incredibly supportive.

However, despite all this love and support I would have told you before today that Cameron didn't have a special friend his own age, a special person who enjoys Cameron's companionship and wants to spend time with him. Not because he has to but because he wants to. Someone who doesn't care what others may say or do because of his friendship but celebrates Cameron and encourages him to grow by sharing his knowledge and unconditional support. Someone who will hold back to make sure he is okay and see his potential. Someone who will take the time to help Cameron be more than he already is.


Today I watched Sam help Cameron to climb and I realized Cameron has a friend. Sam is Cameron's friend. He is a few years younger but physically he is as tall and strong. He has grown up all his life knowing Cameron and I have never seen him be scared or shy away. In fact it is Sam who comes out to our car every visit and helps Cameron out of the car and into the house. It is Sam who patiently helped him down flight after flight of stairs at AQUA. It was Sam who was the first person I trusted to leave Cameron with (apart from family and a couple of very close adult friends) when I went to buy lunch at the zoo. It is Sam who will say - It's okay, I'll go with him or I'll watch him - giving me and the other adults a break.

I always knew Sam was special but I hadn't realized how special until I watched him today with Cameron and how patiently he helped Cameron and rejoiced in his success. I'm not sure who's smile was bigger Cameron's or Sam's.


It's really nice to realize that Cameron has a special friend. I had come to accept that having a special friend his own age was probably something Cameron would never have and although this was sad I had comforted myself with the knowledge that his life is filled with wonderful, awesome friends who make him feel very special but I felt sad for him because I know how special my friends are and how special they were to me as I grew up - especially in my teens.

Cam and Sam can't sit and chat like other friends would but you never know, I'm not giving up on my dream of Cameron learning to talk and if he does he will have a mate sitting there waiting for a chat - probably about a computer game, karate or something really weird and that will be wonderful.


Sam - thank you for being Cameron's friend. He may not be able to say the words but I can see it in his eyes, he likes being your friend and he values your friendship very much.

Cam Can Climb


Wow, what a day! At the end of a lovely day out with friends we ended up playing in a playground which had an amazing rope play structure which was like a massive 3D spider web which stretched upwards. My Little Angel and my friends two children set about climbing and discovering the intricacies of this amazing play structure while Cameron wandered around the base and sat down with us adults to observe the others.

After about an hour I was busy taking photos of the three climbers when my friend yelled for my attention and when I looked up there was Cameron climbing, unassisted on the base of the structure. I almost couldn't believe my eyes. Only a few hours before we had been helping Cameron slowly climb stairs and here he was climbing this wobbly play structure without any assistance.


My friend and her wonderful son helped Cameron figure out where to place his hands and feet so he could climb where he wanted to go and Cameron listened and followed their instructions without any hesitation - a miracle for someone who was initially diagnosed with dyspraxia and used to forget the instruction by the time his brain had finally sent the message to lift his leg.


My camera started clicking away and what unfolded before my eyes was nothing short of miraculous for Cameron. He certainly didn't climb to the top but he climbed higher than My Little Angel was comfortable climbing and he laughed and grinned all the way. He even figured out how to bounce and rock the whole structure to shake the other climbers. He climbed up and down, across and through the structure, he wanted to experience it just like he had observed the others doing.




Time stood still while Cameron climbed this afternoon so I'm not sure how long he was up there but it was a long time and for someone who is unaccustomed to climbing you can imagine how tired his arms and legs and brain were. He was starting to negotiate his way down when he suddenly lost his grip and fell and again he was amazing. He got a nasty rope burn down his arm and it would have hurt but the excitement of what he had just done far outweighed the pain. Another miracle for someone who normally tells you repeatedly for several days if he has the slightest bump, scratch or bruise.


The shock of falling out of the structure was quickly replaced with the biggest grin for his amazing achievement. There were hugs all round and a few tears from his very proud Mum.



Wednesday, 5 October 2011

Change is in the Air

I have spent the last twelve months watching Cameron grow and change and fearing what I felt was the inevitable seizure waiting for me at any moment. My anxieties became extreme as we celebrated a year since his last seizure. It is now a year and a quarter and I've noticed my anxieties have decreased and I can now pop my head around his bedroom door without a knot in my stomach. The thought is always in my head but I look in and breathe a sigh of relief that he is sleeping peacefully.

It has been a slow and steady year. Cameron has discovered and tried new things, shown us that he is still learning and is ever more present and in the moment. In fact sometimes he gets the joke before others because he is quietly observing from the sidelines.

In the last week it feels like opportunities are opening up to us again and I haven't felt like that in a long time. For years we just careered from seizure to seizure, exhaustion to exhaustion, confusion to confusion. It has been amazing to watch what happens when Cameron's body is not being beaten and exhausted by seizures. However it also causes confusion.

For the last year and a half we have been trialling a supplement which is supposed to help Cameron's body grow new stem cells. With new stem cells the theory goes that he can regenerate damaged parts of his body - such as his brain. We're not sure if this has happened or not but he is certainly changing and he hasn't had a seizure. But .....

With the lack of seizures he hasn't had to increase his anti-seizure medications during the year and he has grown thus reducing the intensity of the medication on his system therefore his brain is less drugged. Is that why he is doing more and comprehending more or is it the supplement? In the past as he grew he had seizures because he outgrew his medication. Why hasn't this happened? But .......

After his last seizure we started to decrease one anti-seizure medication and we added a new medication. Is this why he is learning and changing and hasn't had a seizure? Who knows - we will probably never know. Therefore do we continue the supplement or not? It's very expensive.

Now we have the opportunity to have Cameron's brain assessed by a completely new team of doctors who work in the field of Functional Neurology. With a QEEG they will hopefully be able to assess if Cameron's brain is able to learn to speak and just what Cameron could and couldn't achieve. If they believe they can help Cameron's brain they will then offer us therapy. Is this extremely expensive process a pile of mumbo jumbo or ground breaking, leading research in the fields of the brain and neuroplasticity?

If Cameron follows the text books then I don't think he could learn to talk because his brain was damaged before it was developed and prepared for speech. If he had been able to receive this ground breaking new intervention straight after the brain damage then according to the text books it probably could have helped. But.........

For the last 15 years we have done everything we could find and think of to stimulate Cameron's brain. He has been to mainstream and alternative therapies, he has consumed fish oil by the gallons and taken supplements for his brain and body. We have kept his body moving and stimulated with swimming, horse riding, trampolines and other physical activities. We've steered him forward and never once said - he can't. Have we done enough to prepare and maintain his brain for this new field of research?

We know he's in there and it feels like we just have to find the key and unlock his brain. He understands way too much and has attempted words over the years that have left us speechless. Why can't he escape his prison? I've had this motherly sense that one day I will be having a conversation with my son but he will be big when this happens. It will be a mature conversation and he will probably tell me what he thinks of my parenting skills. (oh dear)

I think sometimes in life you have to follow your instinct and my instinct was to try the supplement which I think has helped Cameron. I've always believed that stem cell research is important and would help Cameron. Now my instinct is telling me that these new doctors know what they are talking about, even if the mainstream fraternity disapprove, and if Cameron can be helped they are the people to do it. I have read and believe in the plasticity of the brain. Cameron would be a vegetable if not for all the therapy and intervention he has endured and it feels like it was all leading to something and that something has finally arrived. I could be wrong but I trust my gut and it is screaming go for this. My gut was right about our Chiropractor and our Kinesiologist, fingers crossed my gut is right about Functional Neurology.

Now, I wonder if my gut could chose a winning lotto ticket to pay for it?