Saturday, 5 May 2012

Special Saturday - Grief

Grief is something people feel uncomfortable talking about and people automatically think of death when they think of grief.

In life we grieve lots of things and often get confused by the feelings we are experiencing. We grieve the loss of a job we loved or friends who move away. Some people grieve the end of a season or the loss of a personal possession. This type of loss is talked about in a light way and people understand and accept it.

Then there is the loss we as parents of children with special needs experience. Quite often it takes a while for us to understand that we are experiencing grief and then as we stand back and look around nobody else seems to realize we are grieving and therefore we receive little support or understanding.

For myself grief started fairly quickly. Cameron was well and healthy one day and sick and dying the next. He survived but was no longer my baby. It was as if the hospital staff had taken my baby and given me a different baby. His name was the same but he looked different, sounded different and behaved differently Very quickly MMM and I were sitting down and discussing what our new future would hold. We didn't foresee grandchildren, marriage or university. Driving lessons, graduating high school or hanging out with mates and leaving home. The future we had imagined as we had dreamt about our son before he was born was gone and we were struggling to grasp the reality. We were grieving the loss of our son and our future.

Everybody was sad and distressed, everybody was grieving but nobody talked about grief. If Cameron had died everybody would have talked about grief and supported the grievers. I'm not saying people weren't supportive because they were and did everything they could to help but people didn't recognize we were grieving and that requires a different level of support.

People kept telling us how lucky we were and I wasn't feeling very lucky. I'd lost my baby, my job, my home and my husband Monday to Friday. I was living a new life full of constant driving, appointments, medical professionals and therapy. I was grieving my life as well as my baby.

The worst day of my grief experience was the first anniversary of Cameron's illness. That was probably the saddest day of my life. I cried and cried and cried - and I was alone. I howled and I rocked, it was very primal and it scared me because these were foreign feelings and they wouldn't stop. It was exhausting. Nobody acknowledged the day and I felt all alone in the world. I was confused that nobody realized what this important day was and why weren't they saying something. I was sad - why wasn't anybody else sad? If Cameron had died I know they would have rallied around and made sure I was alright. There would have been flowers and visits to the cemetery along with other ways to mark the day.

The early years were hard with bouts of extreme sadness, anger, confusion and deep grief. But I was very aware that people couldn't handle the sadness so I would try very hard to be happy and not bring people down. I was grateful that Cameron was alive and had survived so I focused on that to distract my mind as I fought to recreate my new life.

Grief affects you in many ways and it affects all aspects of your life and that is where the confusion lies because it is so hard for you to recognize, let alone everyone else. You experience denial and shock, pain and guilt, anger, depression and loneliness. Things start to improve and you eventually  arrive at acceptance and start to create a calm life again when it all happens again but in no particular order. The cycle of grief is unpredictable.  I would feel as if I was getting on top of everything only to find myself going through anger, confusion and depression again. And then every time Cameron had a seizure and ended up in hospital it would trigger it all again.

As the years passed by the grief lifted and the things that upset me when Cameron was young stopped upsetting me. I stopped grieving the life we weren't living and embraced the new life we now lived. But every now and then we reach or don't reach milestones in life and the grief creeps back for a visit. It will never leave completely because what happened is incredibly sad and unfair but we have learnt to be grateful and embrace life. We've learnt how fragile life can be and how we shouldn't waste it. We know how important it is to stop and have a cuddle, a hug or a kiss. There is always time for the ones you love.

Grief is confusing no matter what you are grieving and the most important thing is that people accept that grieving is a normal part of the experience of raising a child with special needs. The more people talk about grief and how they have experienced grief the more people will understand and then support others. Grief is overwhelming and parents need support.

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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/

Monday, 30 April 2012

Special Saturday - Pets

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.

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 intitally 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.

They only had 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.


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. And she hardly ever complains - 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.


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.


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.

We've had lots of other pets over the years - rabbit, birds, fish, crazy crabs and other cats and dogs -  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.

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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/

Friday, 27 April 2012

Our Angel is Flying Away



On Monday we had a chiropractor appointment and when I opened the door I knew something wasn’t right. I can’t explain it but looking back the energy was wrong in the room.

We were handed a letter as we walked in to wait for Dr Alison our chiropractor and a sense of dread spread over me, I sensed what was inside and I didn’t really want to open it. I didn’t need to read much more than one line to have my worst fears confirmed – she was leaving and not around the corner - to the other side of the country.

Dr Alison Scott has been our families chiropractor for over eight years. My Little Angel was only a few months old when we found her and Cameron was eight years old.

We were shopping and MLA was hungry as only babies can be hungry and Cameron was being difficult because he wasn’t coping with the stresses of being inside a shopping centre with post Christmas crowds. We decided to stop in a cafe, feed everyone and hopefully cope a little better afterwards. As I started to feed MLA a gentleman we didn’t know approached us and asked if Cameron always behaved the way he was behaving and did he have a back problem. This was so out of the blue that it irritated us – couldn’t he see we were struggling and needed to be left alone.

We were polite and explained that Cameron had brain damage and yes this was normal. We smiled but used body language to express our need for him to leave. He didn’t leave. He told us that as a fully grown man he used to behave like Cameron but he found a solution. We still weren’t really interested, we still had hungry upset children and felt uncomfortable drawing attention to ourselves in a such a public way.

The gentleman went on to explain that all his family were doctors except himself and so he understood a little of the medical world and so he knew that what he was about to tell us was safe and it works. He had found a chiropractor who had helped him and eradicated his behaviour. We looked at him bemused – what was he talking about. We knew about chiropractors because we had a friend and a family member who used one but they were for fixing your spine not your behaviour. This man was clearly unstable and the sooner we moved him on the sooner we could calm the children and have a cup of coffee.

The gentleman explained that the chiropractor he found was across the road from where we were sitting and he strongly encouraged us to visit her. We thanked him and breathed a sigh of relief when he finally left us in peace.

We finally got to eat and feed everyone and were doing the typical family juggling with a baby and food when our new found friend visited us again before leaving the cafe. With smiles on our faces we listened politely as he told us again how much he felt Cameron would benefit from seeing his chiropractor, he explained again how to find her and explained again how much it had helped him. He strongly urged us to go and visit this mysterious woman and get help. He walked away and we were left wondering why he had been so insistent, he just wouldn’t let it go.

Life took over and we moved on but this strange man kept popping up in our thoughts and within a few days we found ourselves asking each other if we should see what this chiropractor was all about. We finally swallowed our pride and made the phone call – he’d made sure he left us with the phone number.

The day we walked into the Dr Alison Scott’s consulting room was as significant as the day we first walked into Riding for the Disabled – it was a life changing moment.

Dr Ali was incredibly bubbly and kind. She specialized in children and she took the time to explain everything to us so we understood what chiropractic could do for us. We learnt that it wasn’t just about sore backs because everything links back to our spinal system and if it is all in the correct place then our bodies function and work much better. Consequently our behaviour changes.

She started working on Cameron and there were a lot of appointments to help Cameron’s body realign its self.  Slowly we started to see differences, the first being that he started to stop destroying rooms. Cameron would go into a room and pull everything out, down and often break things then he would walk into the room later looking shocked at the carnage he had left as if he knew nothing about it.

We noticed that the small seizures and vomiting seizures which we had learnt to live with started to decrease and they eventually disappeared. Cameron became calmer and more focused and everybody noticed the changes.

When we started to see changes we asked if Alison could help My Little Angel with her silent reflux and within two weeks the reflux was gone and we were no longer catching constant vomit. Then My Marvellous Man started going to see if chiropractic could help him feel better and it did. Finally I started and within a couple of weeks I started to wish that I had found our new found Angel before I had given birth to MLA because I could clearly see that some of the pain I experienced was because of the alignment of my spine and it had now been corrected.

Over the next year we noticed we didn’t get as sick as we used to and we stopped making constant visits to our GP. Cameron in particular had been extremely prone to contracting every little bug going around and he was now much healthier and able to fight off a cold in a couple of days.

Over the years Dr Alison has saved us all from trips to the GP. The most dramatic being the day I took MLA in -  a quiet, clearly unwell little girl. She was cuddling her teddy and not interested in anything. Five minutes later she stood up, abandoned her teddy and walked out of the surgery much happier – it was amazing.

She has put me back together when I’ve fallen and helped my body cope with its hormonal unbalances. She’s taken away headaches and tummy aches, back aches and wonky hips. We really don’t go to the GP anymore – I forget I need to have pap smears. Consequently MLA at 8yrs of age has never taken an antibiotic and I don' t think any of us have taken an antibiotic since we found Alison.

If it wasn’t for that gentleman who was so insistent that we listened to him we wouldn’t have found our Family Angel. I am grateful he was so insistent. She flew unexpectedly into our lives and now she is spreading her wings and flying off to pastures new.

I had to admit to shedding tears on Monday as soon as I walked out of the building, I only just held it together as I hugged Ali goodbye and I couldn't say what I wanted to say. I don’t think I will ever find the words to express how grateful I am for Ali’s expertise, help and caring over the years but here goes ....... 
Ali - Thank you for everything you have done for us. You have been a major person in our lives and I honestly can not imagine life without you. You've answered all my questions, never made me feel silly. Helped us when we needed you and made us feel safe. You have helped me understand my own body as well as everyone elses and I'm a little scared you won't be there the next time I don't understand what is going on.
But you are entering a new phase of your life and I knew deep down that this day was going to come - I just didn't want to believe it. I hope as you hang your angels on your Christmas Tree each year you will remember that little boy that needed you to save him so badly and you will remember that young man that said goodbye to you on Monday. Bye Ali and Thank You for being our families Angel.

Sunday, 8 April 2012

Why Haven't I Been Writing?

It's almost a year since I started my blog and I was writing regularly until October/November when life became quite complicated. Why?

Partly it was Cameron. In October we discovered The Institute of Functional Neuroscience and suddenly our lives became emotionally overwhelming as Cameron changed daily and sometimes hourly. My days suddenly shortened as I started collecting Cameron from school after lunch to take him to the Institute three days a week. This therapy is expensive so we became financially strained as we watched our bank balance disappear rapidly. Then to add to our financial woes both our cars suddenly decided their time had come and they both retired within a couple of months of each other.

I'd driven my car for eighteen years and it was the car that drove me to my appointments as I strived to become pregnant with both my children. It drove me to appointments while I was pregnant and drove me to hospital when my children were born and then when we went home for the first time. With Cameron they were eight hour round trips. It was the car that we drove that fateful day sixteen years ago when Cameron slipped into a coma and thankfully didn't die in my arms and it was the car Cameron and I lived in as we drove all day every day between appointments and therapies. I once followed a car which had a sticker which said - If I'm a Stay at Home Mum How Come I'm Always in My Car?  I searched for that sticker for years and never found it. It described my life perfectly.

My car was where Cameron screamed so much I thought I was going to crash the car, where Cameron learnt to climb out of his seat belt and climb into the boot to look at cars out of the back window. He vomited so much in that car I couldn't guess how many times and he slept uncountable hours in that car. I screamed and I cried buckets of tears in that car and that car kept us safe even when my mind was not properly focused. Cameron and I lived in that car, it was our sanctuary between appointments - our safe place. I loved my car and it held an enormous amount of memories for our family so it was very emotional to watch her become unreliable and the day she went to the car yard was very emotional for me.

It hasn't just been Cameron and the cars. I don't have a paid job but I do volunteer with several organizations close to my heart because of Cameron. One of those organizations is Riding for the Disabled and I am currently the President of RDA Brigadoon which is where Cameron rides. Normally being President of an RDA centre means lots of meetings and decisions but our centre has suddenly grown so rapidly that it's taken our breath away and I have found myself doing an enormous amount of administration. So instead of sitting up late at night writing my blog posts I've been reading and answering emails and trying to keep up.

All up life has been overwhelming and I've been tired. Consequently I haven't had the energy or the time to write. But I am starting to feel my energy return, the old Jane is resurfacing and getting back on top of things, even the housework.

During my writing drought I have been leaving tit bits of Cameron's life on my blogs facebook page, http://www.facebook.com/This.is.No.Ordinary.Kid,  mainly about all the amazing things he has been doing, so if you've been missing out you could do some catching up there. I'm hoping that over the next few weeks my energy and coping skills will continue to improve I will find more time to write again. I miss sharing our story and journey with you.

So until my fingers hit the keyboard again I hope you all have a very Happy Easter spent with those you love. I suspect Cameron is going to consume way too much chocolate but watching him unwrap Easter eggs is so wonderful and not having to retrieve the foil out of his mouth whilst being bitten is really nice too.

Tuesday, 27 March 2012

An Amazing Surprise - Thank You

This morning I went and cleared the RDA mail box, I hadn't been for a while and expected lots of bills. There were a few bills and two parcel notices. I popped straight in to the post office to collect the parcels thinking nothing of it. One parcel had to be scanned and signed for and again I thought nothing of it, even when the woman checked what my name was and matched it to the parcel. As I started the car my curiosity got the better of me and I decided to open the parcel which had required my signature to collect.

It was a small parcel with an electronically printed label. I didn't even read the label just opened the end and slid my hand in to then pull out a white box. I was puzzled and slid the white cover along the box to reveal this ......


I sat in the car stunned. I was holding an iPod in my hand. Why was someone sending the Riding Centre an iPod? Then I read the label on the parcel and realized that the parcel was addressed to Cameron and Jane - this was private mail, then as I read further I discovered that it had been sent from Big W in NSW and the sender had asked to remain anonymous because the parcel was a gift to us. Someone had sent Cameron an iPod. (I know it's a presumption but I really don't think anybody would be sending me an iPod.)

My mind spun. I just sat there staring at the iPod in disbelief. Finally I turned off the car and phoned MMM to tell him. He was equally stunned at the other end of the phone. I had to get moving so I put the iPod back in the package and placed it into my handbag for safety. I drove off questioning if what had just happened really happened.

This afternoon Cameron came home from Stagedoor with Grannie and I told him something amazing happened today. I got the parcel, told the story and opened it up for him. He took the box from my hands with a smile and immediately tried to move the pictures of the apps, he knew what was in his hands.

As soon as dinner was finished MMM opened the box and set up the iPod and of course loaded iCommunicate. I showed Cameron the wallpapers and he chose his wallpaper saying 'paper paper'. Then we gave Cameron his iPod ........




Cameron was so delighted and very at ease, holding his iPod very carefully. Tomorrow we will find a screen protector and cover for his iPod to keep it safe and then we can relax a little. I also have to remember to phone his Speech Therapist and let her know the news.

Even as I am typing this and looking at the photos this all feels totally unreal. Nothing like this has ever happened to us and I am feeling very emotional that someone would care so much to help Cameron communicate his wishes. We respect Cameron's secret benefactors wish to remain anonymous so my blog is the only way we can say Thank you.

Your gift will give Cameron a new found freedom and a way for him to control his own life. He has shown us that he has preferences and opinions and now we can give him choice no matter where we are. His iPod will go to school with him so when they leave the school Cameron will have a voice. It will go with him to Stagedoor with Grannie and swimming with Grandad. It will go out with us whenever we go out so if we stop for a drink, an ice cream or any situation where we would make a choice we will be able to give Cameron a choice and we will no longer stand there making decisions for Cameron. There may even be situations at Riding for the Disabled that Cameron can use his iPod.

Whoever you are - Thank You. Imagine the hug I am giving you and the enormous smiles on everyone's faces this evening. We raised our glasses to you this evening at dinner and I know if Cameron understood what you did for him he would give you the biggest smile, the biggest 'Taaaaaaaa' and the biggest hug.

Thank You.

Sunday, 11 March 2012

Special Saturday - Technology


This week for Special Saturday we are discussing the impact of technology on our family members with Special Needs.

Initially I only thought about the here and now, what technology Cameron is using now. That is easy to answer - Television, DVD player, iPad, iPod, CD player, electronic games, electronic books.

Life would be very different if Cameron didn't have his DVD's to watch The Wiggles and his CD player to listen to his music. He really enjoys his books that make sounds and talk to him and then there are all the fabulous Leap Frog electronic toys which he falls in and out of love with constantly.

The modern technology which has made the biggest impact on Cameron's life is definitely his iPad. He uses it so much the 10 hour battery sometimes doesn't get him through the day. It has opened up his world, given him new fine motor skills, new responsibilities, filled his empty hours, made him popular, made others envious of him, introduced him to another world where he is learning about shapes, colours, numbers and letters. He's discovered books, games, music and fun. He has even learned to share and show. He will come and show me what he has found and he will let me share an app with him. He has discovered a whole new world.

Over the last month Cameron has been trialing an ipod. This trial has shown us as a family that Cameron doesn't need an electronic gadget to communicate with us what he needs and wants around our home but he does need a way to communicate his choices when he is out in the big wide world. Our next family mission is to get Cameron an iPod so he can use the iCommunicate app to make choices and then he can eat and drink what he chooses instead of what we guess he might like. Hopefully that will stretch to making choices about activities and other things we can't even imagine at the moment.

After thinking about the obvious answers I then reflected on Cameron's life and realized that he wouldn't be alive if it wasn't for technology. Technology has saved and kept Cameron alive more than once. Of course technology at this level is no good unless it is in the hands of a trained technician and that is what our doctors in hospitals are these days. The hospital is full of technology from the front door to the back, so are the ambulances. And considering the fact that my Uncle died of Meningitis as a young child in the same hospital that Cameron survived Meningitis I think technology probably had a lot to do with it.

Life has changed dramatically over the last 60 years and technology has been one of the biggest changes. It's saved Cameron's life and continues to support him now. I think we are incredibly lucky to be raising a child now and not 60 years ago when there wasn't the same level of technology to help save lives and then support those who survive.

Thank goodness for Technology.

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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, 2 February 2012

It's Been a Great Start To The School Year



I was nervous about Cameron's first day of school this year which was unusual but I think understandable. This year was completely different to the previous thirteen years. This year for the first year I knew what my son needed from his teacher and I was so worried that his teacher wouldn't be able to adapt his program for Cameron's needs.

When you look back over Cameron's school life he has achieved very little. His IEP's (Individual Education Plan) haven't really changed over the years and really school was about socialization for Cam. Even the excursions to develop skills weren't essential because Cameron is always out and about with us and knows how to behave in public he just hasn't developed the independence skills.

Occasionally I've made requests during IEP meetings, such as please don't put ripping or scrunching of paper into the plan anymore he is ripping everything up at home or please don't timetable Cameron's toileting - he's not getting it and it's placing a lot of pressure on us all. We've been open to suggestions and new ideas but in reality - we just haven't progressed. School is a great social event for Cameron.

Yesterday for the first time I was able to sit down and confidently explain what has happened to Cameron over the last four months and discuss what Cameron needs to be able to continue his development. It was with huge relief that I heard Cameron's teacher agree that Cameron needed to have the program adapted to his needs and that we needed to plan for developmental appropriateness not age appropriateness.

Cameron will be able to use his iPad at school with the communication app we've found so he can make choices and attend the Institute during school hours so he isn't going in the afternoon or evening when he is tired. Cameron's teacher loves iPads which is convenient since so does Cameron.

It's going to be a collaborative effort with meetings needing to be organized so the teacher can meet the Institute and the speech therapist meet the teacher. It's very exciting and it feels so supportive with everyone on the same page and wanting to co-operate.

It's been a great start and hopefully it will all run smoothly and continue.

Mind you as we all walked home today, as we have for the last four years, My Little Angel and I discussed our new plans and how much our school week is changing. It's made me feel a bit sad to think we won't be all walking home and to school together like we have and I'm going to miss it. MLA is growing up and becoming very independent which is very handy at this point in our lives.

And as a side note -  today for the first time Cameron walked home independently beside us, he didn't charge off like a rampaging elephant threatening to fall flat on his face or walk with his hand tightly entwined in mine. Instead he walked along independently figuring out how his umbrella worked and getting wet. Life really is changing. :)

Sunday, 29 January 2012

Disabled Toilets Frustrate Me

Cameron's Change Bag

A few days ago I had to take Cameron to the toilet while we were in a public place. Again just like when we went to the Zoo the disabled toilets were inside the male and female toilets. I couldn't go into the male toilets so I had to take my sixteen year old son into the female toilets. I felt incredibly self conscious doing this and was relieved when nobody was around to see us when we went in but when we went to leave there was a young teenage girl washing her hands. I waited till she left and then walked Cameron through.

Why are toilets set out like this? I couldn't even just walk straight into the cubicle I had to walk across all the basins to get to the disabled toilet.

That then brings me to the actual toilet. As I noted later the sign for the disabled toilet did show a person in a wheelchair and that is exactly what the toilet was set up for - a person in a wheelchair. Not a carer toileting or changing a person with special needs.

This frustrates me so much. The disability community is made up of a lot more people than those in wheelchairs. When I sat and chatted to my sister afterwards about the toilet situation it occurred to me that people really have no idea what happens when you take a person with special needs to the toilet. I think people think that if the person is walking then they are sitting on a toilet. Life really isn't that simple.

When we take Cameron to a public toilet we have a change bag which we often have to either balance on a wet basin or place on the floor. There is never any bench to place it on or a hook. Then we have to help Cameron get undressed - where do we put his clothes? Again on the wet basin or on the floor. If we are changing a dirty nappy we have shoes and socks and sometimes it is easier if the top comes off too. Can you picture us squashed into a normal toilet stall doing this. Don't forget if it's me I have my handbag as well.

A wet nappy is easiest but for a dirty nappy we need to clean Cameron's bottom. We have trained Cameron well and he turns around and bends over for us - in a normal toilet stall that would put his head in the toilet or banging on the toilet door with us sitting on the toilet. In a disabled toilet I often end up on the floor. Just think about some of the public toilets you have used and the state of the floors.

Poor Cameron is always searching for something to hold on to so he can balance and lift his legs for us and sometimes he gets very frustrated and hot and bothered so he growls and yells. Picture the looks as we leave the bathroom.

When Cameron was younger he couldn't stand up to be changed, he was walking but we had to lay him down to change him, his balance wasn't good enough for him to stand. You can not lay a five year old on a baby change table so where is he supposed to lay - on the floor? We've had to do it, laying fold up change mats on the floor to try and stop any cross infection happening from the toilet floor. Thus we were on the floor too.

Then how do you get shoes back on, there is a phase between learning to stand and having good balance where the only way you can put on shoes is if you sit down - where? On the floor? On the toilet? When you don't know how to use a toilet sometimes there is a fear of sitting on the toilet or you are a bit small and slip into the bowl or the situation is so strange that the distraction factor interferes with getting the shoes on. On occasions we have walked out and found somewhere else to put Cameron's shoes back on but that can be unsafe in some situations.

So if you see a woman in her forties walking into to a woman's toilet with a teenage boy it might be me or it could be another mother or a carer working and just trying to do her job. And what on earth does a Dad or a male carer do with a young girl or woman? Trust me - those nappies don't last all day and bladders can't be held all day.

And how is the parent or carer supposed to go to the toilet?

I wish people would stop and think for a minute when they plan public toilets. It wouldn't be hard to include grab rails, hooks and a flat solid surface for people to sit and be changed on. How about thinking about the parent/carer and the layout of the toilet so the parent/carer isn't on the toilet unable to stop their charge from opening the door for all to see.

All people should be able to go to the toilet with dignity and the other day when I had to take Cameron into the women's toilets I don't think that respected his dignity or mine.

Saturday, 28 January 2012

Special Saturday - What This Special Needs Parent Says - over and over and over again

Sorry - we have an appointment

Hang on - I have to check my diary

Do you accept cheques?

It's on Savings thanks

Stop hitting - she'll/he'll break

You are allowed to tell him to stop

Cameron doesn't speak

no, no, No, No, NO. NO, NO, NO !!!!!!!

Oh Yes, he understands a lot more than you realize

Has Cam had his meds?

Wiggles again? Don't you think we've watched enough Wiggles?

Oh no!!!!!!!!!

MICHAEL

Ambulance please

We're in hospital

Shower Cam- come on - please don't yell - I'm sorry I'm not Dad

Please don't hurt your sister

Yes, he goes to school full time

Do you really think I am going to forget about your medicine - please swallow your tablets - have a drink and swallow your tablets please Cameron - Cameron, swallow your tablets.

I've developed formaphobia (I also invented a new word - but I think it's pretty accurate)

Then go to the toilet

The last I looked you didn't have a drivers licence please go and sit in the passenger seat

Get out of the car Cameron, Cameron please get out of the car, Cameron get out of the car - PLEASE

Watch the step

Good looking

Playschools on

Turn the music down.

We don't have to sit in front of the music to hear it.

We need to plug your iPad in to charge otherwise you can't use it. No, we need to plug your iPad in to charge or you can't have it later. No .........

If you want a drink then go and get one

I love the fact you get sarcasm

Yes Cameron, Yes Cameron, Yes Cameron - honey please stop telling me over and over again - Yes Cameron, Yes Cameron.

Please don't touch the buttons

We'll have to wait till Daddy gets home - Cameron's untuned the TV again

At least Cam got the joke

Put Pav down - NOT NEAR THE FAN!!!!!!!

It is very difficult to brush your teeth with your lips closed - please open your mouth

Please don't yell - I'm only trying to help

High Five

STOP! - You're hurting

Funny Cam

Not everyone wants to talk to you Cam

Hands down

Please don't touch

How many times have I told you, you can't put DVD's in your CD player.

Where's the _________ Wiggles DVD - I've got the case?

Has anyone seen Cameron's shoes?

Has anyone seen Cameron?

Cameron get out of that car - it's not ours

Hey Cam - well done

Please don't tap me

Yes, I know this is the way to Grandads

Not happy Cam

Please don't scream

That's fantastic Cam!!!!!!

Cameron, Cameron, CAMERON, CAMERON - C A M E R O N!!!!!!!!!

Why????????

Oh, it's time for a hug - okay

Thank you Cam :)

I love you too

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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, 26 January 2012

I Can 100% Guarantee That No Weed Will Grow in our Front Entrance

The summer heat has truly hit here in Perth (Australia) over the last week. It got so bad yesterday that the kids bedrooms felt like saunas and we decided everyone should sleep in our bedroom where our only working air conditioner is. We've been basically living in our bedroom for the last week, the bed has been our lounge chair and there's been lots of togetherness happening.

Today it was 41 degrees, although when we came home at lunchtime the car said it was hotter. We bunked down in the bedroom with the air conditioner, the TV and anything else anyone wanted to keep occupied. The air con struggled but it was better than anywhere else. Cameron wandered off occasionally but he always came back because it was just too hot.

He wandered off just before dinner time and we presumed he'd come back - he did - holding a spray pack of weed killer. We quickly retrieved the poisonous item and went to see how he'd got it because there isn't any in the house. I then discovered the front door wide open letting all the heat in - fabulous. As I went to close it some thing struck me as odd and then the reality of the situation struck home. Cameron had sprayed the front wire door, the front wooden door, the walls, pictures, bag hooks, umbrellas and floor with the weed killer. It was pooling at the base of the door.

My Marvellous Man quickly raced Cameron off to the bathroom and scrubbed him clean while I started the job of cleaning up, which involved hosing the front wire door. There is no chance of a weed ever growing inside my front entrance - believe me.

So how did he get his hands on a bottle of poison? Simple, a neighbour moved out today and gave us a few of their last items - including a bottle of weed killer. He had dropped in just as we were about to leave the house this morning so we put the bucket down at the front door and didn't even look to see what was in it. When we came home we were so hot we didn't give it a second glance. But bored Cameron did.

In the past this would never have been a problem for us, Cameron didn't have that kind of inquisitiveness and nor did he have the fine motor skills to use a trigger pack. Obviously he does now.

It is dawning on me more and more just how different this year is going to be. I have a giant toddler who is getting into everything and is becoming inquisitive and is developing the skills to do things for himself. I'm in trouble .......... He can reach everything!

Tuesday, 24 January 2012

My Little Angel is Being An Angel

My Little Angel has been a true angel these school holidays. She has spent her summer holidays either at the Institute or helping us with Cam's therapy at home or listening to us talking about Cam and the Institute or being very understanding and patient because Cameron's needs have been greater. It has taken over our holidays and she hasn't complained once.

She hasn't been perfect, I am not going to pretend I have a perfect angel but when I look back over the summer holidays she has had to deal with a lot and most people have not realized the role she has played. We have reached a point now that I can't cope in our appointments without her and at home she often begs to be allowed to help Cameron with his cards and broom handle.

At times she has been clingy and at other times she's asked for her own time but that is understandable and we have made an effort to make sure she has had some special days and lots of cuddles and attention. Grandad has come to the institute twice over the last week so she could have some special time with Grannie which has put a huge smile on her face.

This morning it was My Little Angel who found Cameron laying on the ground and this evening she has been a little panicked about him. She even told us we better check him because he'd shut the door and she couldn't hear him singing. She's worrying about him.

People don't understand the impact on siblings who share their lives with siblings who have special needs. They constantly make sacrifices and they watch the stresses their parents go through and they try to help whilst being impacted by their own emotional response to the situation.

We have seen My Little Angel struggle emotionally because of the life she lives in our family. You couldn't find a more loyal, loving or caring sister and it breaks my heart sometimes to watch her fears for her brother and how confused she gets.

This evening she got very confused because Cameron was still up and she was going to bed. This may not sound like something that should upset her but you've got to look at the big picture. My Little Angel has grown up with her big brother being treated like her little brother and quite often she is given privileges which are more than Cameron is given. Such as staying up later. Why all of a sudden have the rules changed? Because Cameron has changed and suddenly doesn't need as much sleep but how is an eight year old supposed to understand all that? It's a lot for us as parents to absorb so how is she supposed to cope.

We spend a lot of time making sure that My Little Angel gets time with us which is special time just for her. We make sure that we don't forget her age and that she has different needs to Cameron. it gets challenging at times but we have to. She is just as important and we love her just as much.

Every family is different and every sibling is different just as every person with special needs is different but I think we can all agree that life is definitely not normal for a brother or sister who shares their life with a sibling who has special needs.

So here's to My Little Angel who brings incredible sunshine to our days and sometimes supports us more than the adults. We are so lucky she is our Angel.

Monday, 23 January 2012

Is It A Seizure???

This morning My Little Angel told me Cameron was awake listening to music in his bedroom so I asked her to ask him to come and have a shower. We had forty five minutes to get everyone organized and out the door for Cam's Institute appointment.

She came back fairly quickly to tell me Cameron was laying on the floor. It was the way she said it that got me moving quickly. Cameron doesn't tend to lay on the floor.

He was sitting up when we got to him but it only took a second to realize he wasn't quite right but he was conscious and with me so it was alright. We sat with Cameron for at least twenty minutes and slowly his smile returned and he started to interact with us and respond.

While I sat there watching him and trying to figure out if he'd had a seizure or what? It occurred to me that this was the third time this week that we had found him laying on the floor and My Marvellous Man and myself had pressed the panic button for a few seconds the first time because Cameron didn't respond when we spoke to  him. Interestingly if these are seizures he is laying down for them not falling down. They have also started when we've become aware of how tired he has been - is that because he's having seizures or is the tiredness causing them?

Thankfully we had our Institute appointment - I needed some questions answered.

I explained what I had seen and Cameron's doctor said it could be absence seizures. But why is this happening and how could he have short seizures when he has no inhibitors to stop seizures? Well this is where we get to the good news.

If this is absent seizure activity then that tells us that Cameron's brain has improved enough to send the message to tell his brain to stop - which is really exciting. However, why is this happening in the first place?

We knew the work we are doing at the Institute could trigger seizures but it is almost three months now so the likelihood of the treatments causing seizures is unlikely. However Cameron's brain is going through enormous changes and it could be the changes triggering the seizures since he is already seizure prone. He is also incredibly tired from all the hard work his brain is doing and we also have the heat of summer so we could be looking at several factors.

We need to watch and see if Cameron has any further seizures so we can see if there are any links and if they increase or worsen. Basically we keep, keeping on with fingers crossed that his brain doesn't allow itself to go into a major seizure and hope that as things continue his brain will strengthen and cope better. It was a lovely seizure free eighteen months and I'm very grateful we had it.

Cameron's sitting here beside me as I type this, watching a Playschool DVD whilst tormenting his cat Pav, looking at a book and generally relaxing. He is a lot better this afternoon, more his usual self. This morning he was lost and confused - it's nice to have him back.

Sunday, 22 January 2012

Special Saturday - Dealing With Setbacks

This week for Special Saturday we are talking about Setbacks and how we deal with them. I've been reading all the posts and every one's setbacks are very different. Some people cry and others just get on with it but the over riding theme is - everyone copes because they have to.

We are no different.

Cameron's life has been filled with setbacks, even before he was conceived. We tried for five years to have Cameron and to be honest - we almost gave up. We had set back after set back and we really thought parenthood wasn't going to happen for us - which was a thought almost too much to bear.

But like everything else that has set us back we just didn't give up. Some times we take a break, sometimes we find another way and sometimes we just get really pig headed and just keep trying.

I could probably bore you to death with all of Cameron's setbacks but I think the one setback that springs to mind the most is what happens after he has a seizure. Cameron's seizures aren't short, they aren't seconds long or minutes long, they aren't even an hour long - they are hours long.

Every time Cameron has a seizure we sit in emergency and wait for him to come back to us. We have waited for up to eight hours and then he isn't with us but he is alive and breathing calmly and ready to move to a ward. I then sit beside him and wait for him to wake up, thankful that he has survived again.

It's during those twelve to twenty four hours that I start to imagine all kinds of things based on past experience. The anxiety builds and builds and the tiredness grows and grows. I search his face for any sign of normality and eventually his eyes flutter open and if we are lucky his smile returns.

Then reality sets in and we find out what skills Cameron has retained and what he has lost. Some times he is drooling and can not drink. Some times his fine motor abilities have diminished. At times he's lost the ability to eat and he's lost the ability to stand on his own two feet. We've lost words and signs, confidence and knowledge. The ability to blow his nose and blow out candles has been achieved and lost.

I think the worst recovery was the time we realized that after all the huge achievements we had made in almost toilet training Cameron - it was all gone. And even today four years later, despite all the incredible gains he has made in the last two months we are still not back to where we were with his toileting. I will never forget the look of horror on his face when I took him into the bathroom to go to the toilet and he saw the toilet. It was as if I had shown him the most terrifying thing in the world, my heart sank.

It's been incredibly sad and frustrating to watch Cameron achieve new skills which were so much hard work to achieve in the first place and gave him independence and then to lose them in the blink of an eye. It has frustrated his teachers and assistants and I'm sure it has frustrated Cameron.

But we have a motto in our family - Always Look on the Bright Side of Life - and never is this more poignant than after a seizure. Sometimes there are tears - there certainly were when we lost the toileting abilities - you have to grieve. Then there is acceptance and then you move on to moving on. There is no option to give up or give in. You just keep trying, I believe if Cameron has done something once he can do it again, we just have to convince his brain to make that connection again.

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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/

Wednesday, 18 January 2012

A Therapy Update - This Week is Better

This morning we were back at The Institute of Functional Neuroscience but this time we took Grandad instead of My Little Angel. I'm sure Grandad went home with more questions than he had started with because your first time at the Institute is overwhelming and baffling.

Grandad and Cameron have a very deep bond. Grandad challenges Cameron and manages to get him to try things that others can't entice Cameron to try. On the flip side I think Cameron brings out the child hidden in Grandad - they sometimes have way too much fun together.

Last week was difficult because Cameron struggled with the new hand stimulation machine. On Monday this week he was a lot better and I sat and talked through how to manage the situation with our wonderful doctor. She popped in and saw for herself what Cameron was doing when she wasn't in the room, which helped immensely. We came up with a new plan to keep Cameron on the machine and I relaxed a lot.

Today I was much more comfortable but still needed another pair of hands. Cameron automatically points to everything with his right hand and he often gets the choice correct but if you make him use his left hand his choice is often wrong and he struggles. Aren't brains incredible things?

Today we went through the cards first and Cameron tried but it was difficult. He decided he had to sit with his legs on Grandad - I don't know why. Once we finished the cards we tried a book that Grandad had brought. It was a child's I Spy board book and it was very successful. He still wanted to use his right hand so to imprint upon him the need to use his left hand I suggested that he pointed my finger. He responded really well and with an iron grip he pointed my finger using his left hand. He got most of the choices correct which was really surprising. Towards the end he lost interest and was looking to see if the doctor was coming but all in all today was the best therapy session we have had since introducing the hand machine.

We've got a break now until Saturday which I think is just as well. Yesterday Cameron had the darkest black rings under his eyes, his brain is working so hard with all this new input. He should sleep well tonight.

He is Finally Doing What Little Boys Should Do ....And Then


Today was hot and Cameron and I had spent the afternoon in the house with the fans on. My Little Angel was out for the day with her Grannie so Cameron enjoyed blasting me with his music, watching some TV and throwing his Primo before trashing his bedroom shelves.

As I contemplated letting him have a swim he walked out the back door without a backwards glance. That seemed odd but I let him go. After a few minutes I wondered what he was doing and wandered out to find him sitting on the edge of the bricks playing with some sand. Astonished I quickly retreated so I wouldn't disturb him and went inside to get  my camera. Typically I got distracted several times as I walked through the house and half suspected that Cameron would be out of the sand and wandering about but he wasn't - he was sitting in the sand, totally engrossed and he was having FUN. He'd found a scoop for balls and was digging the sand with it. I left him alone after I got my photographic proof. This is not normal behaviour for our Cameron. Occasionally over the years he has had a digging session but this felt different, this felt appropriate. He wasn't just digging, he was exploring and he wasn't looking for any praise he was doing it for himself.

My Marvellous Man got home a few minutes later so I sent him out to see for himself and he was equally shocked. Cameron was having a wonderful time in our wonderful black, sandy soil and he was slowly turning the same colour.

We left him alone and suddenly he appeared at the back door - filthy. He clearly needed a shower but we wondered how he'd go in the bath.

I know you are wondering why we are excited about all this - a kid getting dirty and needing a bath - not exactly Prime Time News. In our house it is. I can not recall a time that I have had to bath Cameron because he was dirty from playing.

In the past if you put Cameron in a bath you had to expect a flooded bathroom and often the carpet in the hall as well. If you left him alone for even a second he would bucket the water on to the floor. He'd splash and do everything possible to get the water out of the bath. He didn't play in the bath like other children. As soon as Cameron was stable enough to stand in a shower we stopped baths.

Tonight we gave him a bath and he was delighted and so were we. He played and he had FUN and he didn't get the floor wet beside a few stray splashes. We no longer have bath toys. (My Little Angel grew out of playing in the bath a long time ago, I suspect because she was bored on her own.) I suddenly remembered that a friend had given Cameron a sand pit kit for his birthday so I retrieved that and then the fun truly began. He tipped and poured, splashed and marvelled. He was totally engrossed and didn't notice us standing and sitting there watching. He wasn't looking for approval he was too busy.

We decided that playing in the sandpit and the bath warranted a celebratory meal. (Don't tell MLA - she missed out.) We asked Cameron what he'd like for dinner. We started listing various options and we got smiles and head nods to everything. Once again we were faced with taking the choice away from Cameron because he couldn't communicate what he wanted. Until I suddenly remembered ....

I went and got his ipad while he got out of the bath - leaving a tub full of black silt. I went into the Communication App (ICommunicate) and with a few mistakes and MMM's help I made Cameron a choice board so he could chose his dinner. The elation we experienced when Cameron told us he wanted Chinese for dinner is unmeasurable. It was the first time he has ever used a communication device properly and purposely and we really knew what he wanted to eat. (Wait till I tell the Speech Therapist)

Cameron loves Sweet and Sour pork and that's what he had for dinner and he deserved every yummy drop of it.

Tuesday, 17 January 2012

Cameron is Doing So Many New Things

Over the years we have become accustomed to Cameron learning or starting to learn a new skill and then losing that skill after a seizure. It was incredibly disheartening but it became the norm and I would sit beside his bed on the ward after we had saved his life yet again and wonder what he would be able to do when he woke up. When we found out what we had lost I would sometimes curl up and shed a tear for all the hard work gone and independence lost.

However, I have a theory that if Cameron's brain has done something just once he can do it again, the pathway was there. I hang on to the memories like that sentence he said in front of a room full of my family as my Grandmother lay dying (or so we thought) - "Wake Up Great Gran". I don't forget that Cameron was almost toilet trained five years ago after watching his little sister and joining in or the odd times that he has done something unexpectedly like build a tower independently or thread some cotton reels.

Therefore it is all the more exciting to see some of these skills reappear because it says to me that my theory is on the right track.

Cameron is toilet training himself again and I am doing nothing. I have learnt over the years to keep right out of it. If you put Cameron and myself into a toilet room together one or both of us will come out crying - it's inevitable. Both of us become so frustrated and we were put under so much pressure when he was very young that we both snapped. Imagine telling a mother of a severely brain injured child to toilet train her child before he was one - he couldn't even crawl. I know now that was ridiculous but at the time I was a sleep deprived, stressed to the max, first time Mum who was doing whatever the therapists told her to do. Sixteen years later I am cheering from the sidelines and helping to put on the pull ups.

Over the years I learnt through research why Cameron couldn't toilet train and I learnt to stand up for myself and say - NO. I had to do it again during term 4 at school last year.

It's exciting to watch Cameron's independence this time around and his sudden realization that he is wet - that has never happened before. We are going through a LOT of pull ups but that is okay, it is all positive and feels right.

Last night for dinner we had a tube pasta salad and chicken kebabs. Normally we would remove the meat off the skewers for Cameron because otherwise he will consume the wood along with the meat. Yesterday we tried again to see if Cameron could eat the meat off the skewer and guess what - he ate the meat off the skewer just like the rest of us. The wood was intact. We all kept eating and Cameron suddenly decided he would eat with his skewer instead of his fork. My Marvelous Man drew my attention to Cameron stabbing his pasta with the skewer rather expertly. As we watched and admired his excellent efforts a new idea occurred to Cameron - threading. He proceeded to thread the pasta tubes onto the skewer. How clever was that? In fact so clever that My Little Angel thought she should join in and thread her pasta on to her skewer too.





In the past we have stopped Cameron picking up his food and generally making a disgusting mess but now things are changing and Cameron is playing with food like a young child would - he is experimenting and discovering. It's very exciting and developmentally totally appropriate.

He spent one meal using tongs and moving food out of the serving bowl and onto his plate and then back again. The dog enjoyed the mush that was left at the end and we were all very impressed with Cameron's new found skill.

Last night when I walked into the kitchen before dinner I discovered Cameron was serving the dinner.



He needed no help and understood exactly what he was doing. There needed to be a little bit of portion adjustment before the plates could be sent to the table but he did it all by himself and he was very serious about it.

As I start each day I wonder what this day will bring - surely not another new found skill? But lately that is exactly what each day is bringing. Along with pure joy and a lot of shock.

It's a Day of Double Takes


It has been a day of double takes today. This photo was taken just after the final straw where my mouth dropped open followed by - Sorry.

The kids were asking to have a swim and I went out to see if Cameron really wanted a swim or not. I found him standing around the side of the house with a cricket stump in his hand and My Little Angel riding around him on his bike. I went to take the cricket stump away presuming he was going to hit her and hurt her when I was admonished for doing so. "Don't take it away, I'm waiting for my spray job, Cameron is going to paint my car." Mouth drop open moment.

I quickly apologized and returned the cricket stump to Cameron. I walked back around the house in a daze - my children were playing a game that involved imagination. I don't know what exactly Cameron was doing and whether he understood what he was doing but as far as My Little Angel was concerned I was about to muck up their game.

Earlier in the day I had assisted Cameron to put on dry pull ups again, he is changing his pants quite frequently  some days because he realizes they are wet - Hooray!!!!!! I thought nothing of it and went into the bathroom to find his shorts. I noticed the toilet lid was open and went to close it and that was when it dawned on me that Cameron had been to the toilet independently and done a poo. Wow - he got a huge hug for that. He was very pleased with himself.

We had a visit from our speech therapist today and again her planned program was scrapped because Cameron was further along than she realized. She was interacting with Cameron on his ipad and Cameron was behaving very oddly. I sat back and watched and then left the room to see if my absence would make any difference - it didn't. Cameron was embarrassed.

The speech therapist and I discussed what had happened and she realized that she had simplified her language too low. Cameron was embarrassed by the interaction. We discussed how we communicate with Cameron in our family and we have never lowered our language for Cameron. We speak to him just like everyone else. We include Cameron in all conversations including family discussions. We ask his opinion and discuss our plans with him. It's never occurred to us not to do this, Cameron is part of our family. I sat and chatted with him at lunchtime about how tired he looked and whether he felt tired. Sure, I didn't get much verbal response back but I got smiles and nods, sometimes I get kisses, turned backs and hugs. Sometimes you have to watch Cameron's eyes to guess how Cameron feels.

We have another new plan for speech therapy, this time using his ipad and the communication apps we bought. We are going to set up for Cameron to be able to make his own choices when we visit a cafe for morning or afternoon tea. This is one time when I feel so frustrated because we impose on Cameron what he is going to eat or drink if he isn't able to let us know his preference. Imagine if you really wanted a chocolate milkshake and you were given banana - I always feel bad.

The ipad has revolutionized the communication world for people who are non verbal.  Instead of spending hundred and hundreds of dollars on very restrictive and bulky communication devices we have one device with an app which we got on sale but which would normally cost $50 and with that one app you can take photos and create storyboards, choice boards and picture boards so somebody can express themselves, make choices and understand what is going to happen. With a little research tonight I have learnt that I could create a choice board for Cameron right there in the shop. It may take me a while to get that good but it's possible and really not that complicated. Not all apps are equal so between the couple of communication apps I purchased and the free ones I found we should be set to give Cameron a way of communicating, if he can get his head around the idea - fingers crossed.

Saturday, 14 January 2012

Special Saturday - Me Time



This week for Special Saturday the theme is - Me Time.

Such an interesting topic because different people interpret Me Time differently. Some people think they don't need it, others will move mountains to get it and others just can't get any.

Some people think Me Time is respite - when their child with additional needs is cared for by a third party and is usually paid to do so. This can range from a couple of hours to a week. Have we ever had respite - No. But you wouldn't believe the number of people who have had a go at me and set a personal mission to convince me that I am wrong and must organize respite time for Cameron -  immediately.

I've been told I must get into the system or Cameron will never get respite. I've been told respite is for Cameron's own good. I've been made to feel like I am the worst mother in the world because I haven't sent my child to stay with strangers for a weekend.

Personally I think respite is essential and wonderful - if you need it. I think respite saves some families from imploding and gives some siblings the break they deserve. Respite is important and there is definitely not enough government attention placed on this very essential service. We just don't want to use it at the moment.

I think every families situation is different and because of the path you have walked you feel differently about things. We are a very tight family unit and love to spend time together,  yes there are days when my patience is stretched to snapping but My Little Angel does that to me too. All children do.

So how do I get a break - well Cameron is at school six hours, five days a week and I see that as a huge break. We are lucky to have family support so my children will have days out with their grandparents and the occasional sleepover. My parents pick Cameron up twice a week from school and one takes him for a swim while on the other day the other one takes him to his musical theatre group. That gives Me time to spend with My Little Angel which is very important.

From there my Me Time is catch it when I can. Once a year I go away for a weekend with a group of old friends. We've known each other since our uni days and I look forward to that weekend with a passion. I'm not Cameron's Mum that weekend - I am Jane. And once a month I have dinner out with a group of Mum's from My Little Angel's school - we count the days down to our next dinner.

I've always worked hard to spend time with my friends and family, timetabling in coffee catch ups where I can. It gets harder as every one's children grow, our lives change and a lot of Mum's return to the workforce but even an email is a connection and I will see my friends whenever I can. I see these times as Me Time, even if we have children with us.

I think I look at Me Time as a time that I do what I would like to do and it can include my children. It's time that I spend feeding my soul. Because our lives have been so constrained and controlled by the medical, therapy and education world I feel freedom when we can do whatever we want. I think having the time to sit and cuddle my child as Me Time just as it is to have a precious night out with My Marvellous Man. But to be honest I don't have to leave the house - I'm very happy staying at home.

If I want to completely switch off and let my brain stop I will switch on the TV and make a cuppa. This seems to be a great way for my brain to stop thinking and I can get lost in the world of the program. I spend so much time out and about that I love being home. I love it when the house is still and quiet and it is only me at home. Even if I am doing the washing, the space is mine and feels so precious. To me that is truly Me Time and I groan when the phone rings and shatters that peace.

Right now writing this is Me Time and as I prepare to press Publish Post reality is knocking once again.

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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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Friday, 13 January 2012

Cameron is Feeling Better

After another afternoon of being left alone and then a long cuddle with me Cameron slowly became himself again and this morning he seems a lot happier. We need to be much more aware of Cameron's feelings and how all the treatment is affecting him. He's happy doing his cards, ball and broom handle at home with My Marvellous Man so that is good and it keeps me in the role that Cameron wants me to be - being Mum. He has rejected doing therapy with me before when he was younger - he wants a Mum, not a therapist and I can understand that considering the hours, days, weeks, months and years we have spent together doing therapy.

Yesterday was our third session at the Institute of Function Neuroscience this week and it was better. For starters Cameron wasn't as out of sorts as he had been the day before and secondly because our doctor saw why I'd been having trouble with the hand machine.

It seems silly that a little machine that puts electrical pulses through your hand could cause me so much angst but it did. I sat back and thought about why Cameron was getting agitated by the machine and why it was pulling up dark, black feelings in me and visions of hospital entered my head.

After Cameron has a seizure he sleeps for up to twenty four hours and then the medications start to wear off and he wakes up. Because he usually has his seizures in the middle of the night he often wakes up in the middle of the night. Being in the middle of a ward of sleeping children when Cameron wakes up is no fun and then you add parental stress and sleep deprivation on top.

Once Cameron is awake he tries to get off the bed but he is attached to monitoring machines and a kangaroo pump. He gets angry that he can't move freely and starts to vocally object and that is stressful because it's loud and it disturbs the other patients. Then he notices what is attached to him and starts to disconnect himself. So I have to become an octopus trying to pin his arms down and stop him pulling out cables and tubes whilst trying to stay calm and keep him quiet. It usually becomes a war that results in me getting emotional and hugely frustrated. And I have to deal with it all quietly and on my own.

The hand machine was bringing back those same emotions because I was trying to keep him quiet and in one place whilst stopping him from pulling off the cables.

Yesterday I explained to his doctor that if I was to bring in enough books to keep Cameron occupied for ten minutes I'd need a wheelbarrow because his attention span is very short. Even the magazines that he looks at in reception get turned rapidly and he doesn't actually look at the pages. Everyone who knows Cameron knows that this is how he reads magazines.

After a chat we decided to try picture cards for as long as I could hold Cameron's attention but he has to use his left hand to point because we are trying to stimulate specific pathways in his brain. He started off really well until the doctor left the room and then he wouldn't co-operate. My Little Angel and I were doing our best but it wasn't working and he pulled the cables off his hand.

The doctor popped back in to see how we were doing and I think my exasperated expression probably explained it all. He then became unco-operative for her and quite determined to remove the cables. She bandaged the cables which helped a little and then she agreed with me that we could only do what we could do. We gave Cameron a ball to hold in his right hand to try and distract that hand from pointing and it worked for a while and then we abandoned any thought of pointing and just left him on the machine, as long as he sat in one spot he could do what he wanted. Finally the tension in the room relaxed and My Little Angel devised a game with the ball to distract Cameron.

When the doctor returned she commented that it is a Team Effort - it certainly is!!!

Thursday, 12 January 2012

Too Much To Say and Not Enough Time to Write

Life in our household is changing and it is hard to keep up. I have so much I want to write about but I haven't been able to find the time so I thought I would do a blog post of all the bits I've been wanting to say.

I'll start with today's session at the Institute. It was better than Monday but still challenging,. We asked for a non wet sponge hand machine thanks to another Mum's advice and that definitely helped but Cameron attempted to pull the sticky pads off at least four times and it took My Little Angel and myself everything we had to keep Cameron in the seat and looking at the ipad. Actually, if we are honest, we lost that battle and Cameron almost pulled the machine off the shelf so we made him change seats. He wasn't happy.

Ten minutes just seems to be too long for Cameron at the moment - developmentally he is still at a one to two year olds level and when I think about it - you wouldn't expect a child of that age to sit quietly with cables stuck to the hand for ten minutes whilst expecting them to point with twitching fingers to pictures that you request.  We are back to the institute again tomorrow so we will see how he goes - he will eventually get used to it.

Cameron has been very out of sorts this week. When his doctor walked into the room this morning she could see he wasn't happy.He'd just hurt My Little Angel. I noticed before our appointment on Saturday that he wasn't himself and it seems to have escalated up to today where he was just grumpy and annoyed.

I decided to leave him alone at home and let him do whatever he wanted. That resulted in a full afternoon of Wiggle DVD's, more book ripping and primo block throwing. He eventually crawled up beside me on my bed for a while before returning to the TV and then this evening he crawled into my lap while we watched TV for a hour. That in itself is unusual because he doesn't usually want to be cuddled for so long anymore.

I think the therapy is tiring him and I think it may be overwhelming him. I wish he was able to tell me how he is feeling but I imagine his world must feel very strange at the moment. I've decided he needs to be left alone and allowed to rest, he will let me know when he feels happy and content again.

However while Cameron has been growing grumpy with us all he has still been doing things to make us sit up and whisper - Did you see that?



This evening at dinner we suddenly realized Cameron may be able to use a knife so we gave him one and he immediately figured out how to use it and how to use the fork with the knife to hold the food. It was hard and he was cutting meat but he was very happy with himself and My Little Angel announced that in future it will be four knives and four forks when we set the table. He has a little ways to go before he's using a knife like the rest of us but I was so proud of him for not putting it anywhere near his mouth or trying to use it flat or like a spoon - which he has in the past.

Cameron is responding to instructions immediately which is still taking us all by surprise. He is even picking up on comments and realizing the implied instruction, such as - I reckon that would be easier if the plate was turned around. I wonder if the cat wants to go out? If we put this away we can have a drink. These comments are generally not made to Cameron but he is responding to them and getting the job done.



In the swimming pool Cameron used to specialize in tsunami's and generally be in his own world annoying the other child as he went. This summer he is playing with My Little Angel and it is a miracle to watch. The other day they played for two and a half hours and had so much fun. They shot rocks with water pistols, Cameron gave MLA piggy back rides, they threw things into the pool and dived to see who could find them first. The biggest miracle is at the end of the swims when I ask Cameron to get out of the pool and he does. There have been days in the past when we have had to get into the pool to get Cameron out.

Over the years disciplining Cameron has been incredibly challenging because he has had no understanding of consequences and didn't care if you took anything from him. The only time he would object would be if you took something from his hands but even then he'd be over it in thirty seconds and forgotten about it or he'd just wait until you forgot about it and then reach up and retrieve it. But if you hid it he'd forget.

During the week Cameron has got in trouble twice and I have put him in time out. In the past this was pointless but something told me he would do it and both these times he was in the pool and I wasn't. I verbally sent him to the step and he went and he stayed there for the two minutes and only left when I told him he could. And both times he followed my direction to go straight to My Little Angel and apologize. He seemed sad that he had done something wrong and realized he was in trouble.

Last week we had to wait for our doctor at the Institute and we were in the consultancy room with a whiteboard. My Little Angel knows she is allowed to draw on the boards and started to quietly add to a drawing of Father Christmas. Cameron suddenly stood up and joined her. He carefully took the top off a pen and started to draw. Not little tiny repetitive scratchy lines but big, swooping, full arm movement lines. I was in shock. I watched as he kept changing pens, making sure to replace the pen lid every time and adding to his master piece. Suddenly he decided to erase his creation and start again which he did two more times.

I was so excited because I know how important this is to his development and there I was without another adult to witness what I was watching. But I took photos.






And one final little gem - this afternoon when Cameron climbed on to the bed with me I was texting someone on my phone using the voice to text function. (I was speaking and the phone was converting my voice to written text) Cameron watched me and then lifted his ipad to his mouth and spoke. I wish I could have understood what his message said. :)

So  there you have it - a very disjointed but exciting catch up. Life is one big roller coaster at the moment which feels like a dream. Please don't pinch me because I don't want to wake up.