Sunday, 28 August 2011

Special Saturday - Funny Things Our Special Needs Children Have Said or Done

Over the years Cameron has done lots of funny things -

He always reads magazines and books upside down and until recently he would get quite annoyed if you turned the book the right way around.
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Cameron thinks it's really funny to place his hand on my chair so when I sit down I hit five waiting fingers before the surface of the chair. As I bounce back up he gives me a big cheeky grin.
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Over the last year Cameron has thought it is quite funny to put his seatbelt into my seatbelt latch and then sit quietly looking straight ahead with a sly smirk on his face until I figure out why I can't do up my seatbelt.
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I keep telling Cameron that a fifteen year old boy with a pink handbag is not a good look but he keeps picking up my handbag and carrying it for me - in public.
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When Cameron was little his teacher taught him to scrunch paper and he learnt that skill so well that anything made of paper was scrunched. A few years later his teacher taught him how to rip paper and then he ripped up everything made of paper. Last week his teacher taught him how to cut with scissors and I think we need to worry because he has already cut up his communication book.
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Cameron was only two or three years old when we were shopping and he was sitting in his pram. We walked past a pair of young lady's in extremely high heels and even shorter skirts. Cameron's eyes almost popped out of his head and his tongue almost licked the floor as he hung out of his pram for a better look.
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Contemplating the funny things that have occurred over the years one story has to be told -

Cameron took a long time to learn to walk and even when he was eventually up and moving on two legs he still needed a lot of encouragement, guidance and support. Even now he sometimes still needs a hand or arm to keep him on track and focused.

His biggest problems were steps, uneven surfaces and Cameron's inability to look where he was going. He didn't use his peripheral vision so he'd fall or trip constantly if the surface wasn't perfectly smooth. We were in the habit of warning Cameron when a step or change of surface was coming and we would praise him for looking down and stepping safely. I catch myself still doing this now because it was such an inbuilt habit.

One day My Marvellous Man was at Bunnings with Cameron and as they left they reached the curb. When Cameron stepped down the curb safely after tipping his head to look My Marvellous Man said enthusiastically - "Good Looking!"

The gentleman stepping up the curb near My Marvellous Man gave him a shocked look. Think about it ...........

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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 globe.

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/



Wednesday, 24 August 2011

Why Cameron is No Ordinary Kid - Part 41

I woke up very early the next morning and phoned for a taxi to take me to the airport. I felt so nervous about leaving Cameron but my mother and Michael's mother assured me that they would stay with him all day and take over my role. The nurses also assured me they would look after him.

There was however one thing deeply worrying me. The previous afternoon the Nurse Manager had come to me and told me that if she needed my room while I was gone she would move us out. I panicked! This was now my only home and the thought of losing my second home in less than two months shook me to my core.

My home was a single room surrounded by glass but it was my home, I had nowhere else to go and the thought of losing it was horrible. I begged her not to move us out but she promised nothing. Cameron's grandparents being in the room all day would help in keeping our room our home.

With the same little carry on bag that I had left home with I walked out of the hospital into the dark and waited nervously for my taxi.

The nicest taxi driver picked me up and we chatted as we drove out to the airport. We discussed why I was in Perth and what had happened to Cameron. Amazingly the  customer he had dropped off before collecting me had a Meningitis story too.

It had been a seventeen year old girl who had received a phone call to tell her that her best friend had Meningitis and was dying and she needed to come immediately if she wanted to say goodbye before her friend died. My taxi driver had just dropped her off at the hospital before collecting me.

It felt really strange being out of the hospital, I felt disconnected but I was comfortable with flying so once I boarded the plane I felt a little more settled. I landed at our little airport and found Michael waiting for me which was so wonderful.

We drove straight to our home and there parked out the front was the removal truck. I felt sick just seeing it. We walked in and the house was empty, they were emptying the shed in the backyard. It was hard to take in. I couldn't hold the tears back and I was shaking on the inside. I went into Cameron's room and hid in the wardrobe, it was all too much for me.

Michael gave me a huge hug which calmed me down a little and then I slowly went through each cupboard making sure nothing had been missed. There was nothing left - it was all gone. We couldn't even clean because there was nothing left to clean with.

The truck pulled off and we were left standing there in our empty home with nothing but memories left and sadly the most recent memories were not the best. I walked around touching the walls and checking the same cupboards I had already checked, I don't know what I was looking for. Michael eventually dragged me away. With a lump in my throat we locked the door and walked away.

There was no point in keeping the key so we went straight to the accommodation office to return it. I didn't want to walk inside, I was so mad that my life was being controlled by everyone except me and taking my home away from me had been the ultimate betrayal.

You have to remember this was a small country town where you knew just about everyone so we knew the person we were about to walk into the office and see. I couldn't look at her. I wanted to yell at her and ask her what she thought she was doing - why did she do it? But that's not me, I avoid confrontation so instead I stood silently beside Michael whilst he completed all the necessary red tape.

Then as a final blow this person who I was so upset with said goodbye and told us that if there was anything we needed for Cameron we should let her know because the town would do everything they could to help. I wanted to scream - he needed his home, we needed our home!

I said nothing and we walked out to the car. I was numb.

Saturday, 20 August 2011

Why Cameron is No Ordinary Kid - Part 40

It was Monday morning and Michael had said his goodbyes the night before and was now flying home. I was up at 6am like every other morning and had showered and eaten breakfast.

My Mum who usually arrived around lunchtime unexpectedly walked through the door around 8am. She'd dropped my aunt at work and figured she may as well stop in and see us since she was just around the corner. It was a lovely surprise and we settled down to have a chat as the morning ward routine went on around us and Cameron slept.

The ward clerk popped in and told me I had a phone call. It was odd to be getting a call so early in the day but I didn't think anything of it. I walked across the hall and picked up the phone to find our friend from home on the other end.

"Hi"
"Jane - I just went around to your home to drop off your trailer and there is a removal truck parked out the front and they are emptying your unit."
"What!?!?! Why?"
"I don't know."
"But Michael is flying home, he doesn't have anything, you've got to stop them."

As you can imagine that was not the conversation I was expecting to have. The company had decided that since we would not be returning to live in town Michael no longer qualified for married accommodation and he was being moved into single accommodation. Michael had had some discussion with the company but nothing suggested they were going to move so quickly and just pack us up.

Michael only had an overnight bag with him and we still had a bird and two cats living in the unit. We hadn't managed to organize when and how we would move, we thought that was our decision and when we knew what was happening with Cameron we would then organize our lives around his plans.
Apparently we thought wrong.

I asked our friend to go and stop the packers and to guard our bedroom so when Michael landed in an hours time he could get his clothes and everything else he needed. I walked back into our room in shock and my Mum saw immediately that I was upset. The moment I tried to explain what was happening I collapsed in tears.

I was beside myself with grief. How could they do this to us? I had been having a recurring dream and they had just shattered my dream. I was going to wake up and be in my bed in our unit and none of this nightmare had ever happened. That dream was what I hung onto every night when I lay in my bed. I would lay there and will my dream to come true.

My Mum was trying to make sense of what was going on, be furious and comfort me all at the same time. The Nurse Manager couldn't avoid my distress from her office opposite our room and immediately came in to see what was wrong. As I cried and cried she ushered Mum and I into the nurses break room assuring me she would watch Cameron but we needed to go somewhere private because pretty soon she was going to be crying with me.

We went into the empty room, sat down and tried to make sense of the situation between non stop tears. I think this let me cry some of the other tears I had been holding back because I was being strong. I couldn't be strong anymore.

The Nurse Manager came into see how I was coping and she gave me some very wise advice. "You need to go home and say goodbye." Yes, that was exactly what I needed to do and while I was there I could clean out my desk at work and try to make sense of the whole nightmare that my life had become.

There was nothing I could do but sit there and hope Michael got the message to go home immediately. When he landed and found out what was happening  he went home to find the packers still packing and our friend waiting for him. He rang me and between the two of us we figured out what he needed to rescue before the packers packed it all.

The next job was to organize a flight for me to fly home first thing in the morning but what about Cameron?

Thursday, 18 August 2011

Why Cameron is No Ordinary Kid - Part 39



Life with Cameron was becoming challenging. Initially when we moved in to the infant ward our room was the room the nurses came to escape the noise of crying babies. Now we were the room to avoid.

Cameron was awake but he had his days and nights back to front. Our room was eerily quiet during the day because Cameron was asleep and there was no waking him up. At night as I wanted to go to sleep he woke up and there was no way he was going to sleep. It didn't matter what we did he would not sleep at night.

Because of the constant comings and goings on the ward I couldn't sleep during the day and in the morning I had to be up at 6am to get a shower with any warmth so there were no sleep ins. I would sometimes climb back into bed after I'd had a shower and had my breakfast but I couldn't sleep because the ward was awake. I was becoming more and more tired. Even our doctor started to show concern and threatened to move me into Ronald McDonald House if I didn't get some sleep. You can probably imagine my panicked response to the idea of being moved out of the hospital.

The doctors decided to try and medicate Cameron into the right sleeping cycle but it only seemed to make matters worse. They kept increasing the amount of sedative they were giving him and still Cameron didn't sleep at night.

On nights when the staff weren't run off their feet they would some times come in and take Cameron to the desk so I could get a break. Some mornings I would wake up and find that I had no baby and after a quick search around the ward I would find him in the Nurse Managers office in his pram or in an empty cot somewhere else on the ward. Of course he was asleep now because the sun was up.

Other nights I had to survive on my own and I was becoming quite desperate because not only was Cameron not sleeping but he was crying - ALOT!. It's was the strangest thing for my head to get itself around. I'd been through the scariest experience and almost lost my son and now I found myself getting angry with him because I was so sleep deprived I couldn't cope. I needed sleep.

Some of the nurses added to the stress. One night I sat on my bed desperately trying to keep my eyes open while Cameron screamed because he was due to be fed. I wasn't allowed to prepare Cameron's bottles because parents were not allowed in the kitchen so every feed I would have to wait for a nurse to find the time to bring me a bottle.

When our nurse came in to our room I asked her for a bottle for Cameron and then I waited and waited. I didn't see another nurse or our nurse for close to an hour. We didn't have buttons to call nurses to our rooms you just had to wait till you saw a nurse. Eventually, as I sat fighting my frustration with my screaming baby in my arms, the nurse wandered into our room oblivious to the situation. Again I asked for a bottle for Cameron. She looked at me and said - "Why do you need a bottle - you're breastfeeding!" She said this as she stared at my chest. She'd made this assumption based on the size of my chest. I felt so uncomfortable and didn't want to have a conversation with this stranger about why I wasn't breastfeeding. She finally went and made a bottle for me and then left me to it without any apology. Clearly she'd not read our notes when she'd come onto shift. Needless to say, I didn't get any help that night.

When our physio was on night shift she would sometimes pop in to say hi because she knew I'd be awake and sometimes when the nurses we knew well were on night shift they would come and sit with me and have a chat to keep me company. They didn't know that those chats kept me sane. The TV also kept me sane but this was back in the days when TV stations still closed over night or showed mind numbingly boring shows between midnight and 6am. I learnt to enjoy watching the most boring and ridiculous programs like the aerobics program that was on every morning as the sun came up,

Sleep deprivation is incredibly disabling and I thought I had experienced sleep deprivation when Cameron was born but this was far worse.

Saturday, 13 August 2011

Special Saturday - Dealing with Bad News

This week we have experienced another devastating event in one country which has deeply affected people around the world. We've all sat and watched in horror at the riots occurring in England.

This year has been particularly bad for events around the globe which have stunned and stopped people. Here in Australia we had the devastating floods, New Zealand had the earthquakes and Japan the Tsunami. Other countries have also experienced devastation and grief. Here in Western Australia we also experienced some devastating fires and flooding at the beginning of the year.

Every parent is always faced with the dilemma of how to talk to their children about these types of events. It is almost impossible to protect your child from them when every TV channel, radio station and newspaper is talking about nothing else and unless you stay at home and talk to nobody you can't avoid the inevitable shocked conversations at school, the shops and the carpark People need to talk to process the shock and grief.

Some parents gloss over the news hoping their children won't be impacted by the horror. Some parents make light of the situation and explain it in much lighter terms than it truly is. Other parents don't explain the situation at all presuming that it won't impact their children. I fall into the group of parents who explain the situation to their children in an age appropriate way.

For those of us with children who have special needs dealing with these types of stressful situations is even harder.

Until a few years ago we talked about what was happening in front of Cameron but we didn't necessarily sit down and explain it to him because intellectually he was like a baby. So as you would with a baby we would say things like Mummy is sad or it's been a sad day but we didn't go any further in the explanation. However Cameron started to show us that he had a greater understanding of the world around him so our behaviour changed.

My Grandmother became gravely ill and our non verbal child stood next to her hospital bed and said -'"Wake up Great Gran". You could have heard a pin drop in the packed room, you can imagine our shock. That was the day we started to offer more explanations to Cameron.

From that day on we have always explained to Cameron what is happening so he can understand the emotions surrounding him. When people die, we sit him down and tell him the person has died. Sometimes we don't get the socially acceptable response we are expecting but he lets us know in his own way that he understands. Sometimes a solemn silence, sometimes a comforting hug.

The day my Grandmother died he sat in her room and looked devastated. I told him it was normal to feel sad that was how we were all feeling. He looked like he was going to cry but didn't and he wouldn't let me hug him. In his own time he stood up and left the room. Once he was outside he resumed his usual cheery disposition and made everyone smile.

Because we've learnt how to explain bad news to Cameron when people have died we have been able to use the same approach to explain devastating events such as earthquakes, floods, fires and tsunamis.

This year it has been extremely fortunate that we have learnt how to break bad news to Cameron because his dog passed away, there's been 3 funerals, an unbelievable never ending string of natural disasters around the world and a bush fire which wasn't natural and came far too close to taking the lives of some very close friends. Cameron has spent the year surrounded by grief and shock and he has coped very well.

Hopefully we will see no more riots in England and no more floods, fires, tsunamis or earthquakes around the globe. It would also be nice if we didn't have to attend another funeral for a very long time. We are fortunate that Cameron will listen and process information at his own level, some parents are not so fortunate.

Wednesday, 10 August 2011

Why Cameron is No Ordinary Kid - Part 38


Physiotherapy now started out of our room. No more standing by the bed moving Cameron's limbs. It was such a novelty to move off the ward for something without the accompaniment of a nurse. We would pick up Cameron's file and take ourselves to the therapy room and then be trusted to return with his file.

It sounds silly but I wasn't given any responsibility while we were in the hospital. I was powerless, there was a constant feeling that I didn't know how to do anything, I couldn't be trusted. Being trusted with the file was a big deal.

Our physiotherapist was lovely and time spent with her always brought a breathe of fresh air and a smile to my face, Physio was something to look forward to.

We started from the beginning, getting Cameron's arms and legs moving. It was a slow process of showing his body what it had to do by itself - moving his limbs for him - and then enthusiastically encouraging him to try for himself. It was exhausting for everyone and at first our sessions were very short.

Slowing Cameron started to understand what he had to do and he started to send the messages to his limbs to reach out, pull in, push and twist. It was very exciting to see even the slightest movement. So imagine our excitement when he actually managed to balance up in a crawl position.


All this was achieved with the enticement of little soft squeezey toys and the verbal encouragement of the physio and myself. Cameron had to wake up his brain and remind it of what he had forgotten. You could see how hard he was working and it was really, really hard for him.

During the day I had exercises to move Cameron's body to constantly send messages to his brain and to strengthen his muscles. Now that we had started there was no stopping, we had to keep going. Everyone was focused on getting Cameron, rolling, sitting, crawling and ultimately walking.

Sunday, 7 August 2011

Special Saturday - I have special needs because .......



This week I can finish the theme sentence easily on behalf of Cameron.

I have special needs because when I was a baby I had Pneumococcal Meningitis.

We have always known why Cameron is the way he is and for that I am grateful. Not grateful that he got sick and and almost died. Not grateful that he has severe brain damage and is not living the life he was born to live but grateful that we don't live every day asking why?

When you read other people's blogs, talk to other parents and follow facebook pages you quickly realize that there are thousands of parents asking why? They don't know why their children are the way they are. They spend years asking why their child is not developing like other children and searching for someone to listen and understand their concerns. Then they want to know why.

We know exactly why Cameron has special needs. He was a beautiful little baby boy, developing perfectly and filling our lives with love. Life was perfect and had been for five and half months until Cameron had to fight Pneumococcal Meningitis to stay with us. He fought so hard and he won but not without terrible brain damage.

Now we live our lives with one foot in the special needs community and the other in the neurotypical community. Every day is a new adventure and you never really know what is going to happen next but one thing is for sure. Cameron still fills our lives with love, he is still perfect and he still fights to stay with us. His path is different to the rest of us but he walks it with his head held high and a strong sense of what is important in life.

I wish our lives had not taken this path and I wish Cameron was living the life of a typical teenage boy in his second last year of high school with dreams and aspirations for his future. But this is the path he is to walk and we will continue to walk beside him and support him through what ever lies ahead.

As we walk beside Cameron we also continue to raise awareness of Meningitis and the speed with which it can kill and we hope that by talking about Meningitis and raising awareness, children and other families will be saved from the devastation we have experienced - or worse.

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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 globe.

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/

Tuesday, 2 August 2011

Why Cameron is No Ordinary Kid - Part 37

Mum walked into the room looking very concerned and then stopped. She'd heard Cameron crying and then walked into the room to find him sound asleep. Why had she heard him crying? His cry was very distinctive.

I had heard the cry she heard as well but I knew why. A baby had been admitted to the ward and it was one of the sadder stories on the ward - the baby had been shaken. The mother had become so overcome with stress that she had shaken her baby and the baby now had brain damage.

The reason Mum thought she heard Cameron crying was because brain damaged babies have a distinctive cry. While the other baby was on the ward we couldn't distinguish between the two babies cries - they were the same and every time I heard the other baby cry I felt so sad for the family because this was a brain injury which could have been avoided. Forever this mother would look at her child and be reminded of what she had done. I've never forgotten that baby.

There was another family that I also never forgot. I have no idea what was wrong with the baby. It was in a 4 cot room and people visited but didn't stay. We saw so many people coming and going that we couldn't help but notice that the behaviour around this baby seemed to be different to everyone else. Slowly we started to put the story together and realized that the parents were very young. We saw the mother and father visit and look extremely unsure of themselves and lost, they didn't know what to do. We saw grandparents from both sides of the family visit and be very maternal and concerned and then we saw lots and lots of other more official looking people arrive and leave.

These parents were so young that support workers were coming in to support them and were setting plans in place to support the family into the future. It was incredible how much help these young parents were receiving and when I looked around the ward it struck me how unfair it seemed that other parents who clearly needed support were not receiving any and yet this young family were receiving a clearly overwhelming amount of support.

There were babies on the ward who were there when we arrived and were still there when we left and they didn't receive one visitor in that whole time. There were single parents who were clearly struggling and there were families who were struggling for all kinds of different reasons but none of them seemed to receive the level of support this young couple received.

I noticed that the parents on the ward who cried got support. I found this really odd because a crying or not crying parent doesn't denote a parent in need from a parent who doesn't need support. I did receive one visit from two social workers while we were on the infant ward. They walked into our room, asked me the same questions everyone else had been asking me about our history and situation and then announced that I was clearly coping so I didn't need any support and left.

By the time I spoke to those social workers I was so numbed by my new life I was as matter of fact as the doctors when speaking about Cameron's condition. I had kept my act together and stayed strong ever since the nurse in the hospital, on the first day, had told me I had to stay strong. I didn't cry in front of anyone and I was staying positive. In reality my life had fallen apart and I had no idea what my future held but apparently I was fine.