Friday, 30 May 2014

Why Cameron is No Ordinary Kid - Part 56

Whilst I was living with Michael's parents several things happened that I won't forget.

A Happy Memory
Day to day was sleeping, eating, appointments and therapy and finding everything we needed to survive. One of the things we needed were clothes for Cameron. We went into hospital in Autumn with a handful of clothes while the weather was still warm and came out in Winter, into the cold and rain. Both Grandmothers had found summer clothes for Cameron whilst he was in hospital but now he needed warm clothes so I enjoyed popping out and buying clothes for Cameron. It was a normal thing for a mother to do.

As I typed about Cameron's clothes memories started to flood back about what he wore and then I remembered the particular problem with his clothes in hospital. Cameron had a mainline which went into his body through the top of his shoulder. He still has a tiny little scar there today. The mainline administered medications into his body. It needed to be always visible and not kinked which made dressing him a little difficult because his shoulder needed to be exposed.

Great care was taken to buy and make clothes for him that had press stud openings on his shoulder. That was a challenge for his Grandmothers. It was nice once the mainline was removed and Cameron could wear any clothes I liked again.

A Sad Memory
My parents took a holiday and unexpectedly popped into see us one day while they were in the city - they lived a days drive away in the country. I was out when they arrived so they visited Cameron and Michael's Mum while I was out. I was overjoyed to arrive home and find them there and then shortly after they had to leave. I was devastated. Life was so challenging and I was missing my Mum and Dad. Everyone was being very kind and supportive of me but I needed my family and missed Michael all week. I cried a lot that night.

A Bad Memory
A terrible memory was a phone call. My parents called to tell me my Grandmother had been taken to hospital and the entire family was travelling in from their many locations around the state to be with her - it didn't look like she would be with us much longer. I loved Great Gran (what we called her when the Great Grandchildren started to arrive) so this news was devastating but my physical reaction shocked me.

I couldn't move. The thought of going back into a hospital and watching another family member face death froze me. I went numb and couldn't leave the room I was standing in. My brain froze, I truly didn't know what to do. I wanted to be there but I was terrified. Eventually I moved and started walking in circles trying to make sense of it all and that's how Michael's Mum found me. She realized I wasn't coping and offered to come with me and that was the only way I could take the first step towards another family crisis.

I'm pleased to say that Great Gran pulled through that health crisis and went on to have many more for another 14 years and when she did pass away at 97 years of age she had watched Cameron grow and shared many wonderful memories with him that I'll share in other posts.

Do You Think He Has Special Needs?

Cameron 17yrs old
I don't consider my son special in the sense that the term Special Needs means. He is special in exactly the same way my daughter is special. I always say My children are beautiful because I only make beautiful children and I love them beyond any descriptive word in the English language.They are special because they are my children, members of our family and everyone is special in our family.

My son needs to be loved, nurtured, supported and understood just like everybody else does so how does that make him special. He does have different needs. He needs us to look after his daily needs and nurture him more than someone his age would be normally nurtured but does that make him special?

I do think my son is special but not because he has Special Needs. I think my son is special because of the way he touches people. He makes an impression on total strangers. He touches people's hearts and he makes people smile. People are drawn to him and always have been. There is something mysterious and special about my son and I can't explain it but I know it's not because he has Special Needs, it's something he was born with, a special something.

If I could change something in this world I would get rid of the term Special Needs and replace it with Different Needs because I think everyone has special needs but some people have Different Needs and my son is one of them .

Monday, 26 May 2014

Why Cameron is No Ordinary Kid - Part 55

Therapy started in earnest as soon as we had been discharged from the hospital. We had appointments every day for therapies and with doctors. Only a few months earlier Cameron and I had been going to Mother's Group and Ceramics and living a full life. Now there was hardly a free moment between appointments and this continued for years.

We started with Physiotherapy, Occupational Therapy, Speech Therapy and Hydrotherapy as outpatients at the hospital. We had different therapists to the ones we had as inpatients so it was a whole new beginning as we got to know everyone. Then there were also all the specialists - Paediatrician, ENT, Audiology, Podiatry, Orthotics, Dietitian, Psychology and Opthamology. Plus there were EEG's, MRI's, blood tests and AFO mouldings. And finally there were equipment fittings and adjustments, hires and returns, pharmacy, team meetings, parking passes to be approved and bills to be paid.

Each day was timetabled meticulously so appointments didn't clash and in all those years I didn't miss or cancel a single appointment - even when we were hospitalized I contacted the department and we caught up on the ward or took Cameron to the offices with his hospital record file retrieved from the end of the bed and returned when we settled back in on the ward.

I think I can honestly say I was never early for an appointment but moving around the hospital I was usually on time. However the first appointment of the day was always a rush to arrive on time once I had dragged myself out of bed, sorted ourselves out, survived the freeway traffic and succeeded in finding a parking place at the hospital. There was many a time I arrived late for an appointment cursing the lack of parking as I checked in.

Some appointments were quite difficult such as Audiology and Opthamology. Cameron didn't respond to the testing techniques they had so it was difficult to get a true picture of his capabilities. Brain damage does tend to complicate things.

Between appointments I would go to Pathology for blood tests, Pharmacy to collect prescriptions, Payments to pay bills and if Cameron was calm the cafeteria to eat, feed Cameron and drink a coffee to keep me going. On bad days when Cameron just wasn't coping and crying I would walk out of the appointment, drive home for half an hour, let Cameron relax and then drive back for the next appointment. I did that four times in one day once.

Going to the Pharmacy for prescriptions seems like something that should only take five to ten minutes but I don't think I ever spent only ten minutes in Pharmacy. Half an hour was quick and on average I'd wait one to one and a half hours. Sometimes two to three hours.

I think it would be scary to know how many hours I have sat waiting for appointments. The longest was 8 hours for an Epileptologist appointment. The longest appointment lasted all day in Audiology. There were many days where I would walk out of one appointment and into another and had to take Cameron's hospital records file with me because the hospital didn't have enough time to transfer them between departments themselves.

The hospital  became our home away from home even though Cameron was now an outpatient. We made friends with clerks and therapists. We chatted to other parents and got to know other patients. I repeated our story endlessly as staff changed and I complained constantly about having to do so - why can't they have a cover sheet on your file with an abbreviated case history? It was a constant and relentless roundabout but we were on a mission to fix Cameron's brain and give him as normal a life as possible and nothing was going to stop me.

Sunday, 25 May 2014

Pets Are So Important

A forgotten blog post about the impact of pets on Cameron's life.

Cameron patting Cleo
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Oh my goodness, over the years we have had a colourful collection of pets join our family. We consider any pet part of the family no matter how big or small and we've had some small ones and some big ones.
 
When Cameron was born we had a german shepherd called Bo. He was beautiful and very special - I'm sure he was a human trapped in a dog's body. I could fill pages with Bo's antics. When Cameron arrived Bo was very concerned about this new little addition to the household and would sit next to me when I fed Cameron and watch over him. He was never jealous, just concerned. Sadly Bo aged very quickly over the next few years and passed away. I say sadly for two reasons - one I still miss him and it's been about 14yrs since he passed but also sadly because I think he would have been the perfect dog for Cameron in later years and now. He had the intelligence that he would have fetched us if Cameron was having a seizure and he would have watched over him and kept him from danger or found us to help. He was big and strong enough that Cameron wouldn't have hurt him and he wouldn't have hurt Cameron.

Cameron playing with Holly
When Cameron was 4yrs old we got a dog for him. We felt he would benefit from the kind of bonding a dog and boy could develop and we chose a chocolate brown labrador puppy. Unfortunately the shelter gave our puppy to somebody else so we chose a cream one instead and named her Holly because she'd been born around Christmas. She was beautiful and full of life and back then Cam had a bit more life because he hadn't started his big seizures yet.

The two of them would play in the paddling pool and Holly would jump in the bath with Cameron - she loved water. They would play together in the castle and Holly would make Cameron laugh. But Holly was a puppy and she didn't understand that she couldn't bite Cameron and Cameron didn't understand that he could say no or push Holly away, plus he lacked the strength and balance. The day I saw Holly hanging off Cameron's hand by her teeth I knew we'd done the wrong thing. Cameron didn't feel the pain but he was bleeding and unable to stop her. She would bound through in her enthusiastic way and knock him flying and he was unable to protect himself. It wasn't her fault - we had done the wrong thing getting a puppy. We hadn't realized.

I was a pathetic mess the day we took Holly back to the dog shelter, I sat on the curb and bawled my eyes out because I had bonded so strongly with this beautiful dog and we are not dog abandoning people - in fact we are the opposite and have rescued all our pets from various situations and shelters.

The shelter were initially upset with us but when the full story was understood they realized they had also been at fault for recommending a puppy to us and they felt bad for giving our initial puppy choice away. They could see Holly was a lovely dog and in excellent health and were confident she would find a new home very quickly.
 
Cameron walking Pippa
 They had only two dogs that they felt would suit our situation so we went out and met Pippa and her Mum. It didn't take long to realize Mum was a little psycho and we refused to take her but Pippa was lovely and Cameron thought she was wonderful so we took her home with us and she stayed with us till she passed away last year. In the early years Pippa would make Cameron laugh and she would bound about him but not knock him over too often She had the maturity to understand to calm down - sometimes. But as we lost Cameron in a fog of seizures Pippa bonded to me the strongest and she really wasn't Cameron's dog because he couldn't understand how to interact with her and for many years didn't even notice she existed.

Cameron's first cuddle of Pav
A couple of years ago we gave Cameron a cat. Pav is the most understanding and co-operative cat we have ever had. She isn't interested in sleeping on his bed - but to be honest it is very pongy. She sits and waits for him to come to her and then she shows just how patient and kind she is. Cameron manhandles his cat like a toddler would but he has the strength of a man. He holds her tail as she tries to move away, hits her instead of patting and holds her aloft, way too close to ceiling fans, like an award being held aloft for all to see. She does look rather concerned when she spots the fans but she just hangs there in his hands like a limp rag waiting to be put down. Sometimes when she thinks her safety is in jeopardy you will see her scrambling to get down to safety and sometimes she needs us to save her.

 Pav being very understanding of Cameron
She tries to tell him that she isn't happy but he just doesn't understand what a twitching tail means instead he grins widely and picks her up again. For all the roughness Pav will walk up and sit on Cameron's lap, he will put her down and she will curl up in his lap or on his feet. She seems to understand that he doesn't mean to hurt her and he does it all out of love.
 
Pav looking after Cameron
Since starting at The Institute for Functional Neurology Cameron has become much more gentle with Pav and more patient which has resulted in her rewarding him with longer cuddles. It's a strange relationship but it works and has given Cameron the furry love that he so desires.

Patra who stayed well away from Cameron
We've had lots of other pets over the years but for most of those years Cameron didn't notice the pets, he was so lost in his own world. It was fascinating to watch him slowly realize the pets existed almost as if they had just walked into the house for the first time.

I still hang on to the dream of finding Cameron a doggy companion, I think he would love to have a special furry friend that would dote on him and he could walk and play with (another Bo) Cameron enjoyed walking Pippa when he could manage it. I honestly think he is ready now but it's a scary thought.

Saturday, 24 May 2014

It Will Never Happen To Me

This blog post was written 4 years ago for someone else - I can't remember who - but I was sharing our story. I thought it would be good to share now as I move my forgotten draft posts into my published posts because it will share our story with our new readers who haven't had the time to  read back through the old posts.
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Fifteen years ago we were living our dream. After five years of trying to fall pregnant and starting our family we had finally fulfilled our dream and our beautiful baby boy had arrived.

Cameron was a beautiful, healthy joyful baby who was teaching us all about parenthood, filling our hearts with love and reaching all his milestones. We had settled down into blissful family life and I had resumed my teaching career part time. Everything was perfect.

The last photo of Cameron 5 months old before life changed
That was until the 2nd April 1996. Cameron was 5 1/2 months old and nobody could have foreseen what was about to happen. That was the day that - it will  never happen to me - happened to us.

We woke up at home and 24 hours later our beautiful baby boy was laying unconscious in a small country hospital. 12 hrs later, two more hospitals, four ambulance trips and two Royal Flying Doctor flights, Cameron was admitted to a children's hospital ICU. We had been at home with a normal happy life and a day and half later we were in ICU, a thousand kilometres away, with Cameron fighting for his life.


Cameron in ICU at 5 1/2 months old
Cameron spent ten days fighting for his life in ICU and during that time we learnt that Cameron had developed Pneumococcal Meningitis, a deadly disease, and he was now severely brain damaged as a result. Life was never going to be the same again.

After ICU Cameron moved into the infant ward but he was still in a coma. It was more than a week before Cameron started to wake up but he didn't appear to hear or see us and he had less abilities than a new born. He just lay there staring through us with empty eyes.

Cameron 6 months old
For two months we lived in the infant ward while Cameron slowly woke up. He learnt to suck again, he slept a lot and cried even more. Scans were repeated and the brain damage was confirmed but thankfully Cameron started to show signs of seeing and hearing us

Whilst still in hospital Cameron started intensive daily therapy with physiotherapists, occupational therapists, speech therapists plus hydrotherapy all in an attempt to reclaim Cameron's lost skills and teach his brain how to learn again. It quickly became apparent that we had to move to the city so we could be near the medical and therapeutic services that Cameron now needed.

After more than two months in hospital we were finally able to take Cameron home, the only problem was - we no longer had a home to go to so Cameron and I moved in with my parents in law for a month while we organized our new life and home.

Our family was now living apart because my husband had to return to work. I was a single mother Monday to Friday and suddenly our family who did everything together did most things apart. My career was finished, our savings were disappearing fast, we had to sell a car to make ends meet and put our house up for sale to clear the debt. We were one income down and eventually when my husband found a job, so our family could be reunited, he took a huge pay cut to do so.

Cameron 8 months old
But far worse than any of that was that Cameron wasn't our Cameron anymore. He cried a lot and he couldn't do what he'd been able to do before he got sick. Our future was no longer the future we had envisioned for our little family. Cameron wouldn't be marrying and having children, he wouldn't be going to university and building a career. Instead of him learning about our world we were now faced with learning about his new world and all the medical and life difficulties which were in front of him.

As time went on we learnt that along with his brain damage Cameron had lost all of his hearing in his right ear. His right eye wandered, he had Global Developmental Delay and Dyspraxia. However worse than all of that is the epilepsy which has nearly taken his life so many times in the last fifteen years that I have lost count and every time he has a seizure he usually loses abilities which he has learnt since the last seizure.

We have moved two more times for Cameron and we spend our lives searching for that special therapy or something that will help his brain make and hold connections so he can live a more  independent life. If not he will be dependent on us for the rest of his life.

Fifteen years down the track Cameron has endured many years of mainstream therapies and alternative therapies and attends a special school to try and learn life skills. He is a non verbal, non toilet trained, giant toddler who is incredibly affectionate, sociable and loving with a dose of cheeky thrown in. He struggles with most tasks in life. I still get the beautiful cuddles that he gave me as a baby but I really shouldn't. He should be out hanging with his mates but he doesn't have any.

Cameron 14 years old
I would give anything for Cameron to regain his brain function but good has come out of bad. As a family we are hugely appreciative of the little things in life and we rejoice the smallest of achievements. Cameron is incredibly loving and caring and is focused on the important things in life - those he loves and love him. He is not materialistic and has lead us to the same path. We have learnt a lot of life lessons through Cameron and that was something we didn't foresee when we sat beside our dying child fifteen years ago.

I often look back and dwell on the fact that I thought it would never happen to me, little did I realize that it would happen to me.

If you would like to read more of Cameron's story please visit my blog - This is No Ordinary Kid - thisisnoordinarykid.blogspot.com and my Facebook page - This is No Ordinary Kid - www.facebook.com/This.is.No.Ordinary.Kid

Thursday, 22 May 2014

Babes Lost in Panto Land

Another lost blog post about Cameron's performance in Babes Lost in Panto Land with his friends at Kelete, formerly known as Stagedoor, in 2011.

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Babes Lost in Panto Land
A week and a half ago Cameron's Stagedoor Special Needs Musical Theatre group had their big night.

Babes Lost in Panto Land was a production like no other filled with heart and soul and so many princesses that I lost count.

Cameron was one of the Lost Babes and he embraced the role beautifully whilst looking quite dashing and lost all at the same time.

Cameron as a Lost Babe
The show had a mean Witch, a fabulous Buttons, Princesses, Princes and a Genie. It is only fair to say that Buttons stole the show.

Cameron got lost in the first scene and found in the last scene where all the characters came together to dance. Cameron preferred the standing still method for his dancing. Then they all sang Lets Fly a Kite and Cameron thoroughly enjoyed joining in with his tenor note whenever he could.

It was an incredibly uplifting performance by people who find the basics of life challenging. Not everyone remembered their lines, in fact some people forgot all their lines but every time someone walked on to the stage the audience enthusiastically showed their support and when they left the stage the audience very enthusiastically showed their appreciation for their performance.

There was lots of prompting, carers on the stage helping and assistants on the side helping wherever needed and they added to the wonderful experience that made you cry with joy and pride and laugh at the comedy and slip ups.

Cameron thoroughly enjoyed his moment in the spotlight and was back at Stagedoor three days later to join his friends again.




Wednesday, 21 May 2014

We Live in Parallel Universes

Here is the first of my forgotten draft posts. It wasn't finished so I thought I would add to it to highlight the differences over 4 years. I've also added this photo of Cameron at 15 years of age dressed up and ready to go to school for Foundation Day - he's a Swagman.

 
Cameron 15 years old
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We live in parallel universes with Cameron. On one hand he is 15 yrs old with teenage mood swings, pimples and a desire to destroy what little hearing he has left with very loud music.

CD Player - Very Loud
On the other hand he spends hours playing with his Primo throwing it around the room and building basic towers. like a two year old. He gets angry like a two year when he can't get his own way and wants cuddles like a two year old when he's scared.

Prmo - Almost indestructible
He looks at board books and rips them.

Board Book - Heading for the bin
He pushes buttons on anything with a button. He doesn't play, he investigates at a very basic level. He will pick an object up, look at it and if it doesn't grab his attention immediately he disregards it.

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You would think after 4 years I could write about all the enormous differences from what I wrote back then but unfortunately no. Cameron still rips up books, still has a short attention span if he is not immediately interested, he still likes his music really loud but now it is on his ipad. We have moved from Primo to Duplo.

Cameron has changed a lot in 4 years, he is so much more engaged in life and aware of his surroundings. He is no longer Epileptic which is a huge difference. He has finished school and is now with his Post School Options Provider and me during the week. There have been enormous changes in Cameron's life and yet he still lives the same life.

Reflecting back on the title of this blog post - Parallel Universes - I think that is still true. Cameron is now a grown man, strong enough to knock me off my feet. We are currently going through an extreme self pleasuring phase which is causing some distress to those of us sharing the same home with him. He obviously has strong sexual urges like any young man his age but he lacks the appropriateness which would be age appropriate.

We live in one existence with a mature young man with an appetite to match his size, a sex drive to match most young men and a social personality which attracts people to him. In our other existence we have a toddler who only has a good attention span if the activity is truly motivating to him, he is stubborn and gets upset easily if he can't do what captures his attention in the moment. He still likes The Wiggles and Playschool, still rips up board books and investigates young children's toys. He has an ipad like other young adults which is full of apps like a toddler. He needs constant supervision for his own safety and requires assistance with all his personal care needs and activities outside the safety of his own front door. Plus he can't talk.

We delight in his achievements whilst reliving the same existence we have with Cameron for so many years. We live with our feet in two worlds - we live in parallel universes.

Monday, 19 May 2014

Why Cameron is No Ordinary Kid - Part 54

This was the first day of my new life and from here on I can't retell our story day by day because my memory isn't that good so instead we will leap all over the place from memory to memory. I'm also aware that some memories and periods of time are well and truly buried but this process may bring them back to me. I will try and follow a generalized time line but I know I will remember things out of order,

The next month was busy. Plans were falling into place for us to move into a more permanent home in the city. I had to gather everything we needed to survive without our belongings until then and we started the never ending cycle of therapy and hospital appointments.

Thankfully I had my car and that was one thing that made life feel normal. I had Cameron's car seat and his pram and while we were in the car or using the pram life was just a little bit normal. My car became my safe place and consequently I shed a lot of tears, screamed, shouted, pondered and puzzled over life in my car. I wasn't the only person who cried in that car, Cameron did too.

Cameron cried a lot for the next 12 months. He cried in the morning, he cried at night, he cried during the day and there was little I could do to stop him. Comforting cuddles didn't work, feeding didn't work, driving, walking, rolling, didn't work. Other people doing all the above didn't work - nothing worked. Cameron just cried. I know why now but at the time I had no idea why he cried so much and it made people move away from us, glare at us and complain loud enough so we could hear them.

I would sit in the airport waiting for Michael to arrive home at the end of each week and everyone would stand up and move away, some glaring as they went. We would walk through the supermarket and we would hear people complaining about our upset child. Occasionally I wished I was brave enough to walk over to the people complaining about my poor parenting in loud whispers and hand them my child saying - if you can make him stop crying please do because my head hurts and I'm exhausted by it.

I would drive home between appointments from the hospital because there was nowhere I could go that his crying wouldn't upset other people. The comfort of my car was much better. But the car didn't stop him crying and sometimes I would turn the radio up in desperation to drown out the noise but that never worked. It was the type of noise that rattled your brain. Sometimes I would join him because I was so exhausted and desperate and there were some really bad days when I would contemplate driving into a tree or a wall so the noise would just stop.

The nights were the worst, he seemed to have a sixth sense and whether the house was in darkness or not, the minute my head hit the pillow he would start crying. It was particularly hard while we were staying with Michael's parents because I was so aware that he was disturbing them and so there I sat night after night rocking him and trying to calm him all by myself in the dark. It was a lonely time even though I was surrounded by people.

Now I know why he cried but I wish I had known at the time. Adults report that after having Meningitis they suffer terrible headaches. He was in excruciating pain and all he could do was cry. I instinctively gave him Panadol because he seemed to be in pain and I knew that it would start to help 20 minutes after I gave it to him but it didn't always last until I could give him a new dose. I often joke that I should have bought shares in Panadol because I bought enough of the stuff and never left home without it.

An adult described the headache to me and I was shocked. She would curl up in the foetus position for hours, scream at people, punch walls, she couldn't tolerate light and punched in a few doors trying to relieve the pain in her head. She also told me that on her way to the hospital before she was diagnosed with Meningitis she almost kicked the front window out trying to stop the pain. She was a tiny sweet natured girl who was very scarred by her experience with Meningitis. Just imagine that pain in a baby's head and no way of understanding it.

There was one day that I will never forget because it was the only time we were in a group of people who understood  totally. We attended our first gathering of The Meningitis Centre and as we met these strangers Cameron started to cry in his usual very loud way. We started to feel uncomfortable because he was so loud but the other parents immediately rallied around us assuring us that they understood and actually took Cameron off to another room to give us a break. They had been through it themselves. We immediately felt a part of this group and so grateful for their understanding and assistance.

Since that year whenever I hear a baby inconsolably crying in a supermarket I immediately feel sorry for the parents and wonder if there is a greater reason why their baby is so upset. I hate the thought that their baby is in the kind of pain our baby was.

Saturday, 17 May 2014

I'm A Carer Now

Cameron 18 yrs old and Me
I am a carer now and that has been one of the big changes this year. Some people would say - what are you talking about, you've been a carer for 18 years - but I've never felt like that.

I am a mum to two children and it didn't feel right to say I was Cameron's carer when I was mothering him and nurturing him just like any other mother does for their child. I am his mother. I haven't done anything for Cameron that I wouldn't do for My Little Angel so carer didn't feel appropriate. I know other parents feel differently but this is how I felt and still do.

However this year has been different. It's been very emotional for me and the realization has built up. When school finished last year we slipped into the summer holidays just like we always had so everything felt normal. Then we got to the day before school started for this year and it hit me - Cameron is no longer a child, he's an adult, he's not going to school tomorrow and from now on it's mostly just him and me. I didn't want that day to end and tried really hard to make it last as long as possible. I was very teary.

As the weeks have passed I've adapted to Cameron's new routine, his new carers, his new activities and all that these things have brought with them. But one feeling has kept growing and growing - this is for the rest of my life. I'm living my own version of Groundhog Day. This can't be right.

Just in the last week I've been able to make sense of my own feelings and I can finally put them into words. - This is wrong. I shouldn't be dressing my son, cleaning his bottom, holding his hand, changing his wet bed, taking him to dancing, etc, etc. I should be worrying about him driving on the roads, I should be questioning his choices, I should be wondering where he is and if he is drinking. He should be at Uni or Tafe or enjoying the joys of earning his first wages in his first job. He should be spreading his wings, tasting independence and planning his future. This is all wrong.

I will always be Cameron's mother but reality is that I am now his carer. I am taking care of his personal needs, his physical needs, his emotional needs, his social needs, his daily needs, his intellectual needs and his happiness needs and I will be doing this until I can do it no more. Of course My Marvellous Man is going to be doing this all as well but I am the one at home each day with Cameron.

I don't begrudge him my commitment but I wish it wasn't so. I wish I was worrying about him at 2am because he wasn't home yet. I wish I was raising my eyebrows at the decisions and choices he was making. I wish I was having deep and meaningful conversations with him about the dangers of drinking and driving, drugs and unprotected sex, his future plans. I even wish I was arguing with him. I just wish it was different and not how it is. I'm sad and I'm depressed and I feel cheated.

It doesn't mean that good things aren't happening. I am delighted with how his therapy is going, I'm delighted with what's happening at dancing. I'm delighted that he is putting his lips on my cheek and saying mmmmmmm. I'm delighted that he is happy with his carers. But I can't deny my feelings and it's going to take a while to work through them and come to peace with them but I think the hardest part has been achieved. I've figured out why I am feeling so lost and emotional and now it's time to work out how to make this work so we both have a happy future.

Friday, 16 May 2014

It's a New Start


Cameron 18 yrs old
2014 is a whole new start for Cameron.
 
Cameron is now attending his Post School Options Service - DADAA. (Disabled in the Arts, Disadvantaged in the Arts Association. No more school for him and I think he's rather pleased about that. We went and visited his old school a couple of weeks ago and he really didn't want to get out of the car until I convinced him we weren't staying. It was so nice to catch up with our old friends.
 
Life is very different this year. Cameron receives funding for 3 days of care from 9.30am - 3.00pm. Therefore it is just the two of us for two days a week. One day we use for therapy and the other we bumble our way through.
 
It's a big change for Cameron being occupied for a significantly less number of hours a week than he used to be. He seems lost at times and sometimes bored. But on a positive note he is very impatient in the mornings when he is waiting for his carers to arrive and is very happy to head off with them.
 
He has 3 main carers, 2 females and a male and they are all lovely and he is getting back into his favourite activities again with them. He is back in the saddle horseriding again at RDA Brigadoon and he is back in the pool swimming.
 
I've also started taking Cameron to a special needs dancing class at his sisters dancing school - Dance Etc - which Cam is really enjoying. My Little Angel helps in the class and has consequently made friends with a sibling of one of the other dancers which is lovely. MLA hasn't met many other siblings and when she does it's a special bond they share.
 
With his carers Cameron is trying some new experiences. Friday is art day and he spends the day in the Dadaa art studio. Some days he comes home accessorized with paint and other days I have no idea what he has been up to but apparently he enjoys himself. He has also been going to new places like sports centres, exercise parks, a farm and checking out Fremantle and Perth. His care is one on one so they are free to follow Cameron's interests which makes it great for him.
 
It hasn't been an easy transition because it is such a huge difference from how our life has been for the last 15 years but we are adapting and adjusting and Cameron is happy to be an adult now and no longer a schoolboy.
 
Apart from Dadaa Cameron is still doing his therapy, visiting his family and going to Kelete. Dadaa has arranged for one of Cameron's carers to take him to Kelete for me, which is great. So life isn't too bad.