Saturday, 30 July 2011

Special Saturday - People with .... are different but still ........



My son is a typical fifteen year teen age boy. His hormones are raging, his hunger knows no bounds and he can easily sleep 12 - 14 hours per night. Loud music is the only way to go and the TV is his preferred form of entertainment. He loves hanging out with friends and will blush at the sight of a pretty girl

However nobody would label my son as a typical fifteen year old boy because he has special needs. In fact he has many needs coupled with epilepsy, hearing loss, an acquired brain injury and a severe intellectual disability. He is a non verbal two year old trapped in a fifteen year old's body which doesn't even physically move like a fifteen year old.

Of course Cameron is different. There are not many fifteen year old boys who walk arm in arm with their mother home from school, nor are there many fifteen year old boys who would sit and watch The Wiggles from sun up to sun down if they were allowed to. (No, he isn't allowed to) Nor would many fifteen year old boys think hanging out with a group of mothers twice a week was fun. However, for all his differences he also has a lot of similarities with other boys his own age.

He thinks, burping, picking your nose and passing wind are hilariously funny. Cars are to be admired and pointed out with huge enthusiasm and his bedroom has that funky smell that all teenager boys bedrooms have.

So there you have it, he is the same but he is different. So how do we deal with these contradictions?

Cameron is our son before he is anything else and he is a big brother as well. In our house those two labels mean a lot more than disabled, special needs, epileptic or acquired brain injury. 

Some families seem to change the rules for their person with special needs but we don't. Our lifestyle has had to change and the way our house is organized and run has had to change but Cameron is treated no differently to anyone else in the family. He is still expected to show respect, learn the rules, follow the rules and learn that every action has a consequence - sometimes good and sometimes bad.

Yes, allowances have to be made, just as you would for a baby or toddler, because Cameron can not physically or intellectually do a lot of the things the rest of us can do but we never expect him to be different, we expect him to be the same and consequently there have been times when he has shown great maturity, intelligence and grace.

So, how would I complete this weeks Special Saturday sentence?

People with Special Needs are different but still the same.

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Friday, 29 July 2011

It's a Pharmacy not a Chemist



I had to go to the hospital today to collect anti epileptic medication for Cameron. Oh joy of joys.

When Cameron was young I was in and out of the hospital six days a week so I would fit a visit into the pharmacy between appointments. As he got older we were either an inpatient or had an appointment often enough that we would always plan to stop at the pharmacy while we were in the hospital. This last year has been a bit confusing.

Cameron hasn't had a seizure for twelve months so we haven't been an inpatient for twelve months. Our other appointments have been inconveniently spaced so that we actually ran out of medication six months ago and I had to make a series of phone calls until someone took me seriously and organized a script for me. By the time this was achieved we had 24 hours of medication left.

When Cameron was young you could chose if you wanted a hospital or outside script from the hospital doctors but years ago somebody made the decision that the hospital doctors could no longer write outside scripts. This means you have to go to the hospital to get your medications.

They also used to have a really wonderful rule that said you could only have one month's worth of medication at a time. Thankfully someone changed that rule a short while ago and they are now allowed to dispense three months worth of medication at once but for years people had to go into the hospital once a month to fill their children's scripts.

Going into the hospital once a month may not seem that bad until you remember the drama you have to go through to park at the hospital and most of the parents have to take their children with them.  Something that would take ten to fifteen minutes at your local pharmacy takes hours and usually ends up costing you, petrol, parking, food and drink. Todays trip took me two and half hours, a panicked phone call to my parents to collect My Little Angel from school and I narrowly missed a parking ticket.

Some things however, never change such as the cashier closing for one hour for lunch and you can not collect your medication unless you have paid so if the cashier is closed when you drop off your script you just have to wait.

How long you have to wait has also never changed. Today I was told I would be waiting around half an hour but it was over an hour. That was actually pretty good because I have sat there with Cameron for two to three hours. You can not see where the pharmacists work and I often sit there staring at the wall wondering what is going on behind that wall.

Sometimes there is a TV to stare at, if it is turned on. Quite often there is nothing, not even a magazine. You spend your time people watching and pondering life, the universe and everything. I would love to have back all the hours I have spent sitting on those uncomfortable chairs, staring at that wall but they are gone.

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You may be wondering why I titled this blog post It's a Pharmacy not a Chemist. My Marvellous Man is a Chemist but he can not dispense your medication, he is an Industrial Chemist and knows all about  metals, rocks and chemicals etc. You go to a Pharmaceutical Chemist for medication and they work in a pharmacy while an Industrial Chemist works in a laboratory. It's a standing joke amongst our family and friends - if anyone calls a Pharmacy a Chemist they are immediately corrected - It's a Pharmacy not a Chemist!

Wednesday, 27 July 2011

Why Cameron is No Ordinary Kid - Part 36


After I'd got over the lovely surprise of my Mother Day gifts I  was able to have a leisurely shower while Michael watched Cameron. We got Cameron ready and then sat back to await the arrival of our doctor, hopefully he was going to say we could take Cameron out for a few hours.

We waited and we waited while the morning slipped away. We really had nothing to do except sit or pace the floor. Lunch was getting closer and closer. As the time got later we spent a lot of time standing in the doorway looking down the corridor willing the doctor to walk around the corner. The sense of anticipation and anxiety was mounting.

As we stood in the doorway looking down the corridor we observed a nurse enter the fourth isolation room. She was a lovely young nurse who we really liked. All of a sudden we heard a voice escalating in volume and then the nurse raced out of the room and around the corner out of sight. The mother of the baby in the room came to her door and started to scream abuse at the nurse.

Suddenly she had the attention of every nurse and parent on the ward. The nurse returned with another more experienced nurse and they tried to calm the mother down and figure out why she was so upset. The confrontation continued with more nurses trying to assist and then moving away to reduce the intensity of the situation. A nurse removed the first nurse for her own safety because physical violence was being threatened. The nurse was very upset.

Imagine standing there next to your baby as you hear an adult screaming and threatening abuse. It was terrifying and suddenly I no longer wanted to leave the ward. I picked up Cameron and held him tight. I was trying to protect him from the anger and noise. I was shaking inside and scared. I felt safer because Michael was with me but still scared.

After about half an hour a nurse managed to calm the mother down and soothe the situation. It had all escalated out a simple and innocent comment made by the nurse which had been taken out of context and misinterpreted. If she has said what she'd said to any other mother on the ward the mother would have laughed, it was just the wrong person at the wrong time.

Michael pointed out that we needed to leave, it was getting late and we were going to be late for lunch. I didn't want to leave Cameron and where was the doctor?

The staff couldn't explain why the doctor hadn't arrived but they couldn't allow us to take Cameron out of the hospital. We either didn't go to lunch or we went without Cameron. I sat on the bed clinging to Cameron,  not wanting to put him down.

Michael sat with me, while I clung onto Cameron, and assured me that he would be safe. The nurses assured me Cameron would be alright, it was time to go. I reluctantly left Cameron in the care of a trusted nurse and walked past room four with a knot in my stomach.

Once out in the real world, with fresh air, my brain suddenly turned to practicalities. We were now late for lunch and we knew our parents would be disappointed. Michael suggested we stop and pick up some flowers for our mothers. We ended up with potted chrysanthemums for each of them to try and make their special day a little more special.


We finally arrived at lunch, late, bearing gifts and apologies. We had a nice lunch but I was anxious the whole time to get back to Cameron and was relieved when we decided it was time to leave.

There was a sense of peace when I walked back into our room and found Cameron safe.

Sunday, 24 July 2011

Why Cameron is No Ordinary Kid - Part 35


Sunday was Mother's Day - my first Mother's Day.

I had actually forgotten about Mother's Day until a few days before. I was partly organized for our  mothers so I got Michael to bring down what I had put away. In reality having Cameron alive was the best present any of us could have wished for but I was usually a super organized person and would normally have had gifts ready and posted so it felt really unsettling to be so unorganized.

With Dad down visiting and Michael back for the weekend it was decided that Mother's Day should be celebrated at Michael's parents house. We would leave the hospital for a few hours. I was convinced by the suggestion that Cameron could have a few hours day release with us.

We spoke to our doctor on Saturday about the possibility of taking Cameron out of the hospital for a few hours and he was hopeful but said he would have to make the decision on Sunday morning. We were quite excited.


Overnight while I was sleeping the nursing staff crept in and left me a very special Mother's Day gift from Cameron - they had been busy. While we were at the shop the day before buying bathers they had taken a photo of Cameron. Over night they had taken a print of his hands and feet and made a Mother's Day card with the photo inside. This was my first Mother's Day card. I was so touched that the staff took the time to do something so special for us.


Michael also surprised me with breakfast and gifts. I'd not even thought about receiving Mother's Day gifts myself. I felt very spoilt. He gave me a beautiful photo frame because he knew that I was deeply upset about the fact we didn't have a family portrait of the three of us and if Cameron had died we would never have had one. I'm also pretty sure he gave me flowers - because he always does.
It was a lovely first Mother's Day morning

Friday, 22 July 2011

Special Saturday - My Special Needs Child Has Taught Me .......

My special needs child has taught me so much that if I wrote it all down you'd never come back to read my blog again - you'd be turned off by the length of my post.

I have learnt to be flexible and I have learnt to adapt. I have learnt who my friends are and I have learnt who I can rely on. I've learnt what my beliefs are and I've learnt that it's not important what other people think. I have learnt what is important in life and I have learnt what is not.

Dishes and housework are not as important as a precious moment hugging your child and spending time just being together. If Cameron was gone would I care about the dishes?  No, I would miss his presence and that hug and that hand in mine. I would miss his cheeky smile and his popping eyebrows.

I am not the woman I was fifteen years ago, I have seen a side of life that I never imagined and it has changed me. They say a mother who loses a child is forever changed and I can relate to that. Cameron hasn't died but he has almost died so many times that I am forever changed.

I don't take anything for granted because I have learnt that life can be taken away in the blink of an eye and everything that you think is stable and secure can become insecure and unstable in a second. We have spent so much time sitting in emergency, and on the wards, watching other patients and their parents. We have watched the grief after a child has passed away and we've watched the shock as a child has suddenly found themselves fighting for their lives. Every time we watch this we are reminded just how precious life is and every time Cameron has us standing in resus we are reminded how very precious his life and our family is.

The other day I was sitting with two precious friends and we were discussing Cameron and his happiness in life. My response was - That's because he knows what is important, he knows that relationships are all that matters. He places no importance on things, clothes, events or dates he knows that people and his relationships with them are all that is important.

And that is the most important thing that my special needs child has taught me. People and our relationships with them are all that matters.

Thursday, 21 July 2011

A Toileting Dilemma

Today we were at the Zoo and I needed to change Cameron. I was with a girlfriend which meant neither of us could take Cameron into the men's toilet to change him.

My immediate reaction was to find a disabled access toilet. These days disabled toilets are common and we quickly found toilets with disabled toilets however there was a problem. The disabled toilets were inside the normal toilets. There was a disabled toilet in the men's toilets and a disabled toilet in the women's toilet. What was I to do?

I couldn't go into the men's toilet to access the disabled toilet which was obviously where Cameron was supposed to go and Cameron couldn't come into the women's toilet. He is fifteen years old and the size of an adult, it is no longer appropriate.

We stood there and contemplated our problem for a moment and then my friend went and asked at the information desk if there was a separate disabled toilet. Apparently no one had asked this question before and yet the Zoo was full of people with special needs, we could hardly move without meeting another group or individual with special needs.

The staff were very nice and clearly understood the problem. There was a toilet we could access but it was on the other side of the zoo. The staff member who spoke to us was very helpful and decided we should access the toilets we were at so she came around, checked the women's toilets, which were empty and then stood guard alerting people who walked in after us that there was a young man in the toilets. She stood there until we were finished which I really appreciated.

Once inside I had another problem. In order to change Cameron I needed to sit him down to take his shoes off. Toilets don't come with chairs. Thankfully this toilet had a lid which I was able to sit Cameron on to take his shoes off but quite often there is no seat.

People seem to think that everyone goes to the toilet to use the toilet but there are lots of us who need to change our special needs person. Disabled toilets need rails to hold for support, surfaces to put your bag and change supplies down on so everything isn't on the floor, bins for used nappies and chairs or benches.

An alternative is using the baby change room and we contemplated that today but the room was three walls with the fourth wall being a frosted glass sliding door. We would have been on full display and besides why should Cameron have to use the baby change room, that's not fair. Plus it's not fair to the parents with babies who need to use the room.

The other problem nobody thinks about is the parent or carers needs. I needed to go to the toilet today but I couldn't go when I was in the disabled toilet with Cameron because he had clear access to the door and would have unlocked it while I was on the toilet. I was lucky today and took him outside to my friend and then went back inside to the toilet. I know this is a tricky problem but with a little thought a disabled toilet could be designed so the carer/parent could go to the toilet too.

We have come a long way in providing facilities for people with special needs but sometimes people forget that not all people are the same. Imagine today if I had been a father with a young adult daughter. It certainly wouldn't be acceptable for a father to take his daughter into the men's toilet or for him to go into the women's toilet.

Lately it has been on my mind a lot about facilities for people with disabilities and how things have improved but need to improve more.

Because of Cameron's difficulties with walking up and down stairs we will usually find the ramp, unless there aren't too many stairs, they are safe and we have plenty of time. Last week when we visited the aquarium we went down to look at the outdoor shark and ray display.  - Stingrays, Manta rays, etc. There was no ramp but instead two long flights of stairs. It took three of us to help Cameron go slowly down and up the stairs. As we slowly made our way down we discussed how someone in a wheelchair or even a mother with a pram would not be able to access this exhibit.

In some buildings a ramp is provided but it's at the back or side of the building or the person is expected to enter the building through a back entrance. Some buildings have separate entrances for the person who can't walk in like everyone else but someone has to unlock the door or gate for them to get in. That's not exactly equality, is it? How would everyone else like to have to find someone to help or have to ask permission to access a building that everyone else is walking freely in and out of? Food for thought.

The staff today were very considerate and at least there was one toilet on site which was accessible for us but it made me stop and think about how far we've come and how far we still have to go to make all facilities truly accessible for everyone. .

Wednesday, 20 July 2011

Why Cameron is No Ordinary Kid - Part 34

It was wonderful to wake up in the morning and have Michael arrive with breakfast. We had our new normal back.

The physio had asked during the week for me to organize bathers for Cameron and myself because she wanted Cameron to start hydrotherapy in the hospital indoor heated swimming pool. Cameron was fine, they had just started selling swimming pullups - Brilliant. Me - mmmmmmm.

Now those of you who know me personally know that my body is rather top heavy and I'm not a fan of revealing clothing and especially not bathers. The thought of bathers was rather daunting.

I'd had a few days to chat to mum about my dilemma and we knew of a swimwear shop that catered to body shapes like my mine. Michael and I planned during the week that on Saturday morning we would dash to the swimwear shop and, fingers crossed, buy me some bathers. This was back in the days when our shops weren't open past midday on a Saturday.

We couldn't leave the hospital until the morning routine of doctor visits had been completed. Our pediatrician arrived and we went through our usual routine and then he told us a group of trainee doctors were coming in to see Cameron and we needed to wait for them. We explained our time constraints and he assured us they would be arriving shortly.

Well, the one thing I have learnt about our hospital is that a doctor very rarely turns up when you expect them to and this was no exception. We waited and we waited and we waited and the time ticked away. I was becoming quite stressed and was pacing around the room.

Time was just about up and we were about to do something we had never done - walk away and not see the doctor when a group of young trainee doctors finally walked into our room. They had no sense of urgency and had no understanding that they were holding us up. Clearly we had all the time in the world and their arrival was more important than anything else we could possibly imagine doing.

They all wanted to physically examine Cameron and question us about his illness and treatment, his birth and my pregnancy. You can imagine that this was not what I wanted to be doing. Not only was I sick of answering these question, I actually did have something more important to do.

We saw a lot of trainee doctors during our stay in hospital, Cameron was a story to be told and doctors wanted to use him as a teaching tool. We understood that doctors have to learn and we were in a state hospital where doctors train. It just would have been nice if people had been more considerate of our time.

Finally they were all finished and wandered out with the same lack of urgency and lack of acknowledgement that they had arrived with. We quickly organized ourselves. The staff knew what we were doing and were set for us to leave. I suspect my parents were also there that morning. Finally we raced out the door.

We got to the shop with a limited time left to find some bathers. The ladies at the shop were wonderful and found me some bathers which made me feel as comfortable as possible. They cost a fortune but they were worth it. As we left they locked the door behind us, we really had arrived just in the nick of time.

We went straight back to the hospital. Mission accomplished.

Unfortunately it wasn't the only day that weekend that we were left to wait for a doctor.

Monday, 18 July 2011

Why Cameron is No Ordinary Kid - Part 33

It was Friday, the end of the week, and Michael was due to fly back for the first time. I was so excited, it had been so lonely without him. He had been able to go home and sleep in our bed, feed our pets and be normal. It was exciting.

My Dad was also back for a visit so the day was just getting better and better and of course Mum was happy too. The mums I was talking to on the ward all knew Michael was flying in and they were excited for me.

I was standing having a chat with a mum in an isolation room when Dad walked up and dropped the car keys in my hand. It was getting close to the time Michael needed to be collected from the airport. I panicked!

I had one of those weird conversations that only I can have with my father when he wants me to do something and I don't want to do it. He wanted me to drive to the airport and collect Michael and I didn't want to.

It had nothing to do with Cameron and nothing to do with Michael, it was all about me. I hadn't driven a car in over a month and I was in the middle of the city and didn't have the foggiest idea how to get from the hospital to the airport. I was having a full on panic attack. It was also the first time I was going to leave the block of the hospital - that was scary.

I ended up standing in the middle of the ward, throwing my hands up in the air and saying - "I just want someone to take me to the airport to get Michael." I felt stupid and Dad was struggling to understand why I was being so difficult. Thankfully he backed down and agreed to drive me to the airport. We left Mum to watch Cameron.

It was so exciting to see Michael come off the plane, the week had seemed so long. He came bearing gifts of fresh clothing for Cameron and myself. He had Cameron's pram and rocker and a few other things which made life just a little bit more comfortable.

Michael was excited to see Cameron again, it had been a long week for him. He didn't want to leave us and he was now out of contact with what was happening. I'd met people and had experiences which he had missed out on. This wasn't how our family normally operated.

But none of that mattered now, right now we were a family again  and we wanted to spend as much time together as possible over the weekend.

Why Cameron is No Ordinary Kid - Part 32

When we were in ICU we found a pamphlet that explained what Meningitis was. That pamphlet was produced by The Meningitis Centre which at that point was in the grounds of the hospital. We contacted The Meningitis Centre once we were on the infants ward to see what they could offer us.

The coordinator of The Meningitis Centre came up to meet us and hear our story, she was lovely and very supportive. She popped back in several times throughout our stay and she offered us peer support. Peer Support was an opportunity to link up with another parent who had experienced meningitis like we had.

I thought this would be interesting to hear what someone else had been through but beyond that I don't know what I wanted because I didn't really understand what I was dealing with and couldn't see the future beyond the next few hours.

The coordinator let me know that I would be receiving a phone call from a mother who had a child who had pneumococcal meningitis at the same age as Cameron - 5 1/2 months of age. She had survived like Cameron.

I was really nervous about talking to this total stranger but at the same time very excited so I spent the morning waiting nervously. Finally the ward clerk told me I had a phone call and the hall phone was free so I could take the call now.

That phone call was amazing. I heard about another family who's story was very close to ours. We had both nearly lost our children to a deadly disease we didn't understand at the time and we had lost our precious baby to be left with a different baby. However that wasn't the most important part of the conversation.What was important was that her child was eight years older than Cameron so her story was eight years old.

Knowing that I was speaking to someone who had lived through what I was living through made a world of difference to me - she had survived. She turned the light on at the far end of the tunnel, it was  a dim, distant light but it was on and I will be forever grateful to her for giving me that hope because I had almost forgotten what my real life was like because I was so absorbed in my new life.

I suspect if you were in a hospital in the same location as you live it would be different because your life would be there, tangible, reachable and you would have some physical connection. My life was so far away that it seemed like a dream and I wasn't dreaming about the future - it was gone. That phone call let me know that a future was possible and their family had survived so we could too. They had gone on to increase the size of their family, maintain their family and friendship connections and stay sane. If they could do it and find happiness and meaning in their lives, so could we.

Because of our involvement with The Meningitis Centre our families have now known each other for fifteen years and we have been in the privileged position of being able to observe how they have coped with their children and their daughters disabilities. We have learnt so much from watching them and have been incredibly grateful for the support and advice they have given us over the years.

Thursday, 14 July 2011

Why Cameron is No Ordinary Kid - Part 31

I had people in and out of my room all the time between nurses, doctors and therapists. I was getting to know people on a personal level and it felt nice to feel like I was making friends. Our physiotherapist was particularly lovely and would take the time to have a chat. There was a nurse who grew up around the corner from me so we found a bond which was really nice.

However these were not friends they were acquaintances - very nice people but they weren't my friends. When I was gone from the hospital they would hopefully remember us for a while but then they would move on and be friendly with our replacement.

What I didn't realize at the time was that I was going to form a lot of these acquaintances. People would constantly come into our lives through therapy, support groups, the hospital, school and I would feel a friendship and grow very close to them only to then lose them when we had to move on or they moved on.

I found this difficult because I need my friends to ground me, to talk to me, to connect me and to make me happy. I was very cut off from my true friends, they were either too far away or unable to see me very much. I wasn't able to sit and have long chats or have any privacy. Most of my conversations were on a phone in a public corridor or in a room surrounded by nurses and other parents. I was so grateful for the friends who were able to visit. My friends were trying to be there for me but it was difficult.

Our friends at home were getting married and my girlfriend managed to pop in and visit me one night with another friend. We were both the bridesmaids. They decided we would spend a couple of hours making wedding plans in an attempt to take my mind off things.

I settled Cameron for the night and then we went into the parent room to ponder colours, patterns, flowers and all things girlie. It was a lovely couple of hours however all nice things always come to an end and my friends had to leave. It felt really lonely when they were gone but it was a lovely memory which is still there today. I can see us sitting in the parent room with magazines between us discussing green bridesmaid dresses which I didn't like the idea of but ended up loving.

The significant thing about that night was that I was making plans for the future and up to that night I really didn't have any plans past the moment I was in. We had become stuck in the here and now.

Then I received a phone call that showed me that there truly was a light at the end of the tunnel.

Wednesday, 13 July 2011

Why Cameron is No Ordinary Kid - Part 30

Remember the other family who's daughter was raced to the same hospital from our home town with Meningococcal Meningitis?

They popped in to say goodbye when they were discharged. Their daughter appeared to be fine so you can imagine their shock when they saw Cameron laying in his cot not really responding to anyone. We all sat and discussed our experiences but I still don't think they realized how close they came to disaster.

At the same time as we were all in the hospital so was another family from town. Their daughter was having major surgery which was major news until Cameron got sick.

They kept in contact with me and popped in for a couple of visits while they were in the hospital. it was nice to see people from home and we had an understanding of the seriousness of each other's situation. However they were discharged and headed back to town and back to reality while I stayed behind.

One day a hospital administrator popped into our room and asked if we minded Cameron having his photo taken for the hospital's admissions information booklet. They wanted a photo of a baby and our room was extremely colourful. It seemed like a nice distraction and I thought our room was colourful too.

The photographer arrived and one of our favourite nurses was asked to also be in the photo. They wanted the photo to reflect the care offered to the patients.

You would think taking a photo of a baby wouldn't be that hard but it took ages. Firstly there were angles and lighting. Then how the photo should be composed - Cameron on his own with us looking at him, me holding him or the nurse holding him. Should he have a dummy, a bottle or nothing? How many toys in the cot and where should they be? Trust me, it wasn't easy and then Cameron decided he wasn't all that interested in being a model so he started crying. and pulling very sad - I'm not happy - faces.

Eventually we got the photos and Cameron was free to get back to what he did best during the day - sleeping.


The next time we were admitted to hospital there we were in the booklet. I had a friend who's son ended up in hospital and she was a bit excited to see us looking back at her when she opened the booklet.

Tuesday, 12 July 2011

I Love School Holidays

I love school holidays. I love the kids sleeping in and not having to rush in the morning. I love the relaxed evenings and time for our family to relax and be together. I love the weekdays feeling like the weekend. I love the lack of structure and the lack of appointments.

We've had holidays which have been filled with medical appointments and therapies, we've also spent  holidays in hospital. We've often had holidays where someone gets sick. Rarely have we had a holiday which was completely ours to enjoy so imagine my joy when I realized we have two whole weeks free this time.

This week I stopped and pondered why I love school holidays and why I am so delighted that these holidays are not full of bookings. Why do other people fill their holidays from beginning to end and I try very hard not to.

Why do I feel stressed when people looked puzzled that I don't want to send my child on camp or book him into activities. I'm not opposed to having fun, we have gone to some great activities over the years and we are going to the zoo this holiday.

It finally occured to me that our lives are always busy and full. I love the school holidays because it is our time to stop and relax. We have endured fifteen years of endless appointments and doing what other people tell us to do, running from one thing to another. Rarely is, or was, there a day with nothing. The thought of scheduling more scares me and exhausts me.

The school holidays are a wonderful time to catch up with our friends, to relax and let the children play. A few planned outings is fine as long as there is time left for doing very little.

I'm ignoring the fact that today one has a cough and the other a sniffle.

Sunday, 10 July 2011

Cameron Invented a New Food

Today at lunch time it was cold and we had leftover chicken noodle soup in the fridge. The kids and I were on our own so I called out - "Everyone happy with nice warm chicken soup for lunch?" I received a "yes" back from My Little Angel so I went ahead and started to warm up the soup.

A minute later Cameron walked into the kitchen and went to the fridge, he opened the door, studied it's contents and proceeded to pulled out some left over pizza. I asked him if he wanted pizza for lunch and he nodded enthusiastically.

This may sound rather uneventful to you but for me I was standing in the middle of a miracle. Cameron has never really had any strong opinion on what he's eaten. He eats just about everything and if he doesn't like something he just doesn't eat it. If he has a choice he will generally want a bit of everything or the thing closest to him. Out of habit he will help himself to an apple if he's hungry and I'm not standing there to give him something.

Over the last few months we have realized that Cameron really likes sweet and sour pork when we have Chinese. He happily eats everything but when asked if he would like more he will always point to the sweet and sour pork with an enormous grin. Today he didn't want to settle for anything else, he wanted pizza, he wanted to make his own choice.

I told Cameron he needed a plate which after some assistance he got out of the cupboard and then he organized the pizza pieces for reheating. I warmed up his pizza and he happily sat and ate it while we ate our chicken noodle soup with a bread roll.

When Cameron was finished he took his plate to the kitchen but then I realized he was scanning the kitchen again. This time he decided on a bread roll. I was happy with that and told him he could have it. He seemed really pleased but then he went to the pantry and very quickly retrieved what he wanted - sprinkles! Cameron wanted fairy rolls, his version of fairy bread.

I was so pleased that he had made his own food choices I made him fairy rolls and he enjoyed every bite.

I suspect life is going to become very interesting now that Cameron has developed an opinion on what he wants to eat - how exciting!

Saturday, 9 July 2011

Special Saturday - Music

If Cameron did not have music in his life I think he would be a very sad young man. His life is filled with music in so many ways and he would have more if he could.

In the days of BC (Before Cameron) I used to listen to music all the time so throughout my pregnancy there was always music being listened to in our home. My focus changed a little in the years since and silence became golden but this didn't remove music from his life.

Cameron singing in his music group concert

He was born to music and I wouldn't be surprised if his Grannie sang to him in his first few hours of life because she sings to him now any opportunity she can. She takes him to a special needs music and dance class and in the car she will sing scales to Cameron and encourage him to join her which he does in his own special way. Grannie also sings words to Cameron in a hope that his musical ear will delight in the sound and want to reproduce the word to hear the music.

I used to sing songs in the car to soothe Cameron when life became unbearable for him but then when life became unbearable for me I would turn up the radio and drown the car in music to distract both of us from the stress we called our life.


Cameron recognizes music in all it's forms and if he likes a piece of music he will join in with loud claps to keep the beat and a loud tenor voice singing along with one deep note. His smile glows as he immerses himself and he doesn't care if the music is an advertisement, a symphony orchestra or The Wiggles.

The Wiggles have been his musical companions for most of his life and he will sit for hours and hours watching them sing and joining in at the top of his voice until everyone else leaves the room and he can be left in peace to enjoy his friends.

Most of Cameron's toys play music and he responds to these toys the best. When he was young I became allergic to the sound of Old MacDonald's farm because that seemed to be the only song they put on toys fifteen years ago. Now we have a fabulous variety which Cameron adores.

When it comes to musical instruments Cameron loves pianos because he can play a piano, The musical output may be a little contemporary and maybe not to anybody elses taste but he thinks it's great to sit and play - VERY LOUDLY.


Lately Cameron's latest independence with music is his CD player. This year he suddenly realized he could operate his CD player by himself and we have been listening to VERY LOUD music ever since. Whenever Cameron feels like he has nothing to do he will go straight to his bedroom and crank up the music. He plays classical, rock, pop, children's nursery rhymes, he doesn't mind what but he does seem to have a preference for rock music - but what teenage boy doesn't?

Music is part of Cameron's life and without it he would not be as happy as he is. Music makes him calm and music makes him independent. Music makes him sociable and music makes him Cameron.

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This post was written for inclusion in Special Saturday a day, every week, when we all unite to raise awareness around the world of people living with special needs.

Please join us in raising awareness of adults and children living with special needs by tweeting with the hashtag #specialsaturday and following Specialsaturday on twitter. https://twitter.com/#!/SpecialSat

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You don't need to have a special needs person in your life to help raise awareness you just need to care.

Friday, 8 July 2011

Why Cameron is No Ordinary Kid - Part 29


Now that I was on my own my days changed again. Michael wasn't there to bring me breakfast or just to sit and talk to. This is when some very special friends and family stepped up and looked after me. The novelty of visiting us in hospital had started to wear off on everyone and our visitor numbers were decreasing. There were also people who didn't feel comfortable visiting because they felt so helpless.

One friend made me a huge batch of healthy and very yummy muffins. I kept them in my room and each morning I would run upstairs to a parent room that had a microwave to freshen and warm my muffin. On the way back I would make a cup of coffee in my wards parent room and that was breakfast.

My mum continued to bring me lunch and Michael's mum continued to bring me dinner.  Michael's dad would also try and visit as much as possible. Cameron's Auntie (Michael's sister) also tried to visit as often as she could. She was able to give Cameron lots of lovely Auntie cuddles.

My aunt worked a few blocks from the hospital and she would drop in and visit me. It was always lovely to see her smiling face come around the corner.

My friend who made my breakfast muffins tried to visit me regularly. I would see her several times a week and it was always lovely to sit and just chat. There's something very special about sitting with your girlfriend chatting that makes you feel happier and more able to cope with life.  Her life was not easy at the time and she was going between two hospitals visiting us and her grandmother. I really appreciated what she did for me.

Because I didn't have Michael to talk to during the day I started to talk to the others mother's on the ward more. Despite the fact they were there with their sick children many of them felt badly for us. They would be on the ward for a few days and then be gone and I would celebrate their release and their babies return to good health.

We all had to be very careful to be aware of which babies were in isolation and you literally couldn't put your toe across the doorway of an isolation room. We would stand just outside and chat with the mum inside for ages, learning about each other's children and lives. Occasionally we would get in the way of nurses but they never minded.

I met some lovely Mum's who I'm sure I could have been friends with in less stressful circumstances. One mother was especially touched by our situation and as she prepared to discharge she brought Cameron a gift of a little cloth clown doll. It was covered in fine motor activities such as buttons, zips, velcro, press studs, etc. She wanted to do something to show her support for Cameron and to assure me that Cameron would develop and improve. She was lovely and her gift deeply touched me.

I also had another visitor who puzzled a few people. The friend who made me the muffins has a beautiful husband who also worked near the hospital. He started to bring his lunch and pop in to visit me at lunchtime. As time went by and my mother needed to return home his visits increased and I looked forward to seeing him appear with his smiley face and beautiful soul.

After a while it became apparent that some of the staff thought my male visitor was my husband - clearly they had not been on the ward when Michael had been there. The day a nurse asked my visitor a question he couldn't answer, because he wasn't Cameron's father, caused much confusion for a few minutes until the embarrassed and confused nurse left and we both burst into laughter. Now that is true friendship impersonating your husband for you.

I don't know if I ever said thank you enough to those wonderful people who kept me fed, clothed and connected with the real world. There were also a couple of friends who would attempt to run the gauntlet of the hospital reception staff and try to have a chat with me on the phone but if they didn't succeed they would leave me a message which let me know they cared and were thinking of us.

So thank you to each and every one of you, listed or not, who looked after me and did what you could. You kept me sane and you kept me connected to reality which had slipped away and you filled our lonely room with love every day.

Thursday, 7 July 2011

He Did What!?!

This morning while I was brushing my teeth My Marvellous Man wandered in and told me that Cameron had attempted to brush his teeth this morning.

"I'm sorry, what did you say????????????????????????"


For years brushing Cameron's teeth has been one of those jobs that we each would have preferred to not do. In fact if there is a choice I will chose the nappy over the teeth brushing.

We did all the things parents of young children do, using small soft toothbrushes to start and making teeth brushing a fun and relaxed time but it didn't take long for Cameron to decide he was no longer going to play along.

Cameron has a habit of jamming down his lips so you can not wedge a toothbrush into his mouth  between his teeth and lips. It is extremely difficult to brush the teeth of someone who's lips have become concrete. He clamps his jaw shut so you can't get behind the teeth either whilst screaming, growling and moving as far away from you as possible. It really is a headache in the making and there are days when I have to admit I have given up or not even tried because we were already having a challenging day. You have to pick your battles.

Many people have asked if we have tried an electric toothbrush and we have, several times and that was even worse because he didn't like the vibrating sensation. He liked it on his hand and in fact, anywhere else on his body but try to enter his mouth and you will be told exactly what he thinks of you. We have also tried different types of toothpastes and many, many different types of toothbrushes in varying styles, colours, sizes and shapes.

This year Cameron developed a new trick to stop the tooth brushing trauma. He raises his arms above his head. I know that doesn't sound like a problem but you try brushing someones teeth with their arms above their head - you can't do it because you need your arms to be in their shoulder area.

I'm afraid Cameron and I have had some rather horrendous times in the bathroom trying to get his teeth clean. Some days we end up both screaming at each other and we have both been in tears on occasion. I've found backing him into a wall and better still a corner is the best solution because it is more difficult for him to move his head and I have a better chance of restricting my moving target. I have been bitten on more than one occasion.

Cameron and I can get very stubborn and there are days when I will not be beaten and he will have his teeth brushed no matter what it takes. His teeth always look so much better and he is happy when we are finished however I am usually exhausted. But, no matter what, we always end with a hug to make us both feel better.

So you can imagine my shock this morning when I found out he had put the toothbrush in his mouth himself and then to add to the shock he did it again for me to see. I even got the photo to prove it. He never shows me something he has done for his Dad - it's a game he likes to play on me.

Tuesday, 5 July 2011

Cam Can Lick

This evening something magical happened. Cameron suddenly worked out how to lick.

We had a chocolate pudding for dessert and Cameron rather enjoyed his serve. So much so that he picked up his bowl, walked to the empty bowl on the kitchen bench and tried to serve himself more. I was tickled pink with that and encouraged him. I wandered off and came back and he was still trying to serve himself more.

Out of the corner of my eye I saw him raise the serving spoon up to his mouth. He's never done this before so I encouraged him. He was trying to fit a large serving spoon into his mouth which even for him was a pretty big stretch so I suggested he try and lick the spoon.

I didn't expect him to lick the spoon. Cameron can't lick. When he licks he actually drags his bottom lip on what he is licking. Eating ice cream can be extremely painful to watch and I try to get him a cup with a spoon instead of a cone when we have an ice cream treat otherwise it melts and he misses out all together.

So this evening I encouraged him to lick and I demonstrated with exaggerated air licks and after a little while Cameron's tongue started to move past his lip. After lots more encouragement his tongue extended out and he actually licked the spoon.

He was very excited about what he was doing and I kept encouraging and demonstrating and that tongue kept coming out and licking the spoon. We had to scrape the bowl out a bit more because he ran out of chocolate to lick. I didn't even care that he was wearing a white t-shirt, I figured it was a sacrifice worth making but lo and behold he didn't get any chocolate on the t-shirt.

I am so proud of Cameron. Licking is a skill that people take for granted and yet when you watch Cameron you realize that it is not a skill to be taken for granted, it takes planning and muscle control and when it works it's magical.

Something Interesting Happened On The Way Home From School Today


Today something very interesting happened as we were walking home from school.

Our children attend schools which are next door to each other and when My Little Angel goes to high school she will simply walk across the oval to her new school. All three schools are on the same site.

We walk to and from school. We cross the high school oval and then across the primary school oval to access the primary school and special school. Because we cross the high school oval we often see the high school students playing sport. Their school starts first so the first classes are often on the oval in the morning and in the afternoon there is often sport being played after school.

We walk across the oval being sure to hug the side and avoid being hit by footballs, baseballs, golf balls, frisbees, javelins and large groups of teenagers. Cameron is usually more interested in pushing his sister or squeezing the hand of whoever is holding his to pay any real attention to the teenagers around him.

Occasionally when Cameron's behaviour is not age appropriate I will point out the teenagers around him and point out that they are not grunting or growling. I don't think he absorbs what I mean. He doesn't seem to notice what's going on around him.

This afternoon as we walked home there were quite a lot of teenage boys hanging around the edge of the oval, a sausage sizzle was being set up so obviously something was happening. Cameron walked past hanging onto me as he does and then suddenly he pulled me towards the gym and all the boys. I didn't think anything of it and just pulled him back onto course.

We took a few more steps and then Cameron became adamant that he wanted to go and join the other teenage boys. It took a lot of effort to stop him and I thought I'd nearly lost him several times. As I dragged him away I sensed his confusion and frustration and then I felt sad.

Cameron spends most of his life around adults and he likes hanging out with adults. At dancing he pays no attention to the children, just the adults. We have several friends with teenage children and I have noticed over the last few months that Cameron has wanted to watch the boys playing computer games and he will wander into a room to see what they are doing.

Today it was obvious that Cameron recognized that all those boys were his peers and he wanted to go and see what they were doing, he wanted to be with them. As we walked away I had to compose myself because I was feeling sad that I couldn't let him go and introduce himself or join in.

I guess we are entering a new phase in our lives as Cameron matures and recognizes who his peers are and that he is different to them.

Sunday, 3 July 2011

Why Cameron is No Ordinary Kid - Part 28


Every time things settled down into some type of routine something else came along to tip it all upside again. This time it was Michael.

Michael sat me down and told me he needed to go back to work. I was shocked, how could he leave us. I didn't want to do this on my own. I couldn't do this on my own. I'm always braver and stronger when he is by my side. We can conquer anything if we are together. I didn't want him to go.

On a practical level he reminded me that he couldn't take indefinite leave it was already almost a month and he had to go back. He couldn't take leave without pay because we needed the money. My head knew he was right but my heart was breaking. How would I cope?

Michael made arrangements with the company to become a fly in fly out employee. He would fly in on Monday morning and out on Friday afternoon, spend the weekend with us and then head back for another week of work. It was the best we could do in the situation.

There were advantages in Michael going home. He could get some of our possessions which would help make our lives a little more comfortable.

On reflection I don't think Michael felt like he could do anything to fix our situation so the best thing to do was get back to work and earn the money. We needed the money but I needed him and saying goodbye was so hard.

Everything was set for Michael to fly out on the Monday morning and since he was sleeping at his parents home we had to say goodbye on Sunday night. I hung onto him, not wanting to let him go. I walked him down to the end of the ward and then stood there and  and watched as he walked away. The lump in my throat was suffocating me and the tears were burning my eyes. I wanted to sit on the floor and sob but I couldn't so I crawled into bed and composed myself after a silent sob into the pillow. I felt so alone.

Saturday, 2 July 2011

Special Saturday - My Special Needs Child is Amazing because .....

My son is amazing because ............

- he never gives up trying

- he touches the hearts and souls of total strangers

- his smile can fill a room

- he is the loudest non verbal person I know

- he still loves going to school even though he is doing things he was doing 12 years ago

- he smiles during blood tests

- he can work the TV and iPad but struggles to find two matching shoes

 - he never forgets a face, no matter how many years have passed

- he shows compassion for everyone

- he tells me that he loves me even though he can't say the words

- he finds joy in the simplest of things and then shares that joy

- he can sing even though he can't talk

- he is my son