Thursday, 26 June 2014

My Nightmare Came True

Cameron 18 years old

I've been quiet for a week because I was in shock and trying to process what happened. Why??? Well ....

Last week Cameron left our house with a person we had been asked to trust and we believed we could trust. When Cameron arrived home his clothes stunk and I immediately questioned what this odd smell was. It was overpowering and I had to change all his clothes immediately.

I admit I have lived a sheltered life, yes I drink wine but didn't try alcohol until I was in my twenty's and I've never smoked and have never taken drugs either.

I know what cigarettes smell like and what cigars and pipes smell like and this smell was nothing like them. It was different and my mind kept searching for an explanation.

Finally after discussions with several people I realized that Cameron had been in an environment where people had been smoking marijuana. Even as I typed that my brain went numb. How did this happen? This can't be true.

We don't know if the person he was with was using or took Cameron into an environment where others were using. We don't know if they offered Cameron an opportunity to try it too or if they forced him to try it. Cameron is so young of mind, he would have had no idea that where he was was wrong or that what was happening was wrong. He wouldn't have known what to do or how to remove himself from the situation. He would have stood there like an innocent child.

Meanwhile we know he breathed in the smoke and was potentially put at risk as the person he was with drove him home.

My biggest fear of letting Cameron out into the big wide world without us is that he can not speak and tell us what he has been doing. He can't tell us if someone does something to him or that he felt uncomfortable or something was wrong. He can't protect himself by himself and can't remove himself from dangerous or scary situations. He is mentally a toddler and toddlers need protection and others to care for them and speak for them.

The person Cameron was with took advantage of the fact Cameron couldn't come home and tell us what he had done that day or where he went. He took advantage of the fact he couldn't tell us what the other people were doing or what the person he was with did. He used the fact Cameron couldn't speak to take advantage of the situation and completely abused his position of trust.

This situation has been my biggest nightmare and now it has happened and it's shaken me up. I want Cameron to go out into the world but I want him to be safe and I want the people who are with him to care as much about him as us. That may seem an unrealistic desire but I don't think so.

We've been criticised for years for not putting Cameron into respite care or paying strangers to care for him and this very situation is why we didn't. Cameron has no voice and we feared people would take advantage of that and clearly our fear was not unfounded.

It is awful that Cameron was exposed to drugs but I can get over that, what I can't get over is that Cameron's lack of communication was taken advantage of so the person he was with could do something that was wrong and potentially dangerous.

I hasten to add that this person was not a family member or friend, thank goodness because if that happened I don't think I could ever trust again.

Friday, 20 June 2014

I Fake Called Cameron and it Worked

Cameron 18 yrs old and Me (Quite a bit older than him)

The other day Cameron was being rather difficult about getting ready to go out with his carer. He'd resorted to sitting on a chair in his bedroom and was refusing to move or get dressed. It didn't matter how I pleaded or demanded, Cameron just wasn't moving.

What was I going to do, time was ticking away and I needed him ready when his carer arrived. Then I remembered a trick which has worked rather successfully on his sister a few times in the past.

I fake called his carer.

"Cam, do you want to go out today with .......?"

Head shake no.

"Are you sure?"

Head shake no with a look on his face that said - try and move me.

"Alright then I will ring her and tell her that you aren't going today."

Cam just sat there and stared me out.

I left and returned with my phone pretending to look up a contact and dial it.

"Hello ....... this is Jane, Cameron's Mum. Hi. Cameron doesn't want to go out today with you. He won't get dressed because he doesn't want to go"

Listening to silent phone while Cameron watches me.

"You're ten minutes away? Okay, well I'll tell him. See you soon."

Close phone.

"....... says she is almost here and you better hurry up because she needs you dressed when she gets here and you're to stop being silly."

Turn around and walk out of room to put phone away.

Walk back into room to find Cameron walking towards his clothes whilst taking off his top with a rather worried look on his face.

I was grinning on the inside whilst being very matter of fact about getting Cameron ready because he only had ten minutes.

I could not believe that the fake phone call had worked. Cameron totally understood the scenario I had played out for him and had taken it very seriously.

I have to admit I am very lucky that Cameron couldn't walk out and ask his carer about the phone call and therefore couldn't catch me out in my little white lie. I was lucky.

Then this morning I had another little struggle with Cameron again whilst getting ready for his carer but this time over brushing his teeth. He was standing at the front door waiting for his carer and wearing a huge grin whilst refusing to go to the bathroom.

"Cameron do you want me to call ...... because I will and I will tell her that you can't go with her today because you won't brush your teeth."

Suddenly a look of concern crossed his face and he begrudgingly walked slowly towards the bathroom. I wont lie and say the teeth brushing experience was wonderful because it wasn't. It was the usual tussle and argument which I am sick of but at least I did my best to get his teeth clean and he did as I asked so I see that as a Win Win.

Even though this seems like a little story about getting dressed and brushing teeth it is much more important than that. Cameron understood a very abstract concept and reacted accordingly and I think that is amazing and a reason to be very, very happy.



Thursday, 19 June 2014

Toileting - 18 Year Old Style

 
Cameron 18yrs old

The quest for Cameron to become an independent toileter continues. It is painstaking and tiring, frustrating and infuriating. And sometimes it's just plain funny but not very often anymore.

From time to time Cameron has a dry bed and there is much celebration on my part because I don't have linen to wash that day. Then you also have days where you have two or more sets of linen to wash in the morning because it's been an unsettled wet night. My eyes just roll when I get out of bed on those mornings. It's so frustrating.

Cameron goes through phases where he will take himself to the toilet and he does actually go to the toilet. However we still have wet pull ups so he isn't doing it instead, it's just as well.

We have very little success in taking Cameron to the toilet. 99.9% of the time he will not do anything. He just gets frustrated and so do we so we generally don't push the issue.

Lately he has been having a morning wee in the shower and I figure this is fine. It's all going down the drain and he knows he's doing it so that has to be a positive thing. Sometimes he will tell you he needs to go to the toilet after waking up and takes himself off successfully which is always exciting.

The other thing he has been doing I think is a positive sign. You know how toddlers will wait till you put a fresh nappy or pull up on them and then do a poo or a wee? Well Cameron has been doing this a lot lately so I think this is developmentally appropriate. But that's not all.

He has also developed a habit of standing on the front door mat watching the traffic go by and going to the toilet. Toddlers will often have a favourite place to go to the toilet so again I think this is a good sign that this is developmentally appropriate.

However it is all rather frustrating in the mornings. I get Cameron all ready for his carers so we are ready five to ten minutes before they are due. He then stands at the front door waiting for them and guess what? I am then madly cleaning him up and changing him with seconds to go. We often watch his carer arrive as I am grabbing wet wipes and then I am yelling out to give us a minute.

I've tried waiting to dress him till the last minute but he still manages to catch me out even if he only has to wait for a minute or two. Friday I thought I'd timed it all perfectly but no, the carer arrived early and he wasn't ready. I can't win.

Having a non toilet trained 18 year old is horrible. The messy clean ups are horrendous and the constant accidents and wet clothes and wet linen are tiring. But I can see progress so maybe one day we will get there. I just wish one day would hurry up and get here a little faster.

Wednesday, 18 June 2014

Where's Cam? Yelling at People Over the Fence.

 
Cameron 18yrs old

Cameron really doesn't have much chance to be independent so when he wants to go outside and look over the fence, I let him.

He used to stand outside at our old house and look over the fence and there he had a view of the school oval so he watched people jogging and people walking dogs after school. He would have loved it this year now that he isn't at school because he could have watched school sports carnivals and sports lessons.

Recently some friends arrived and when they did the obvious question was asked - Where's Cameron? Oh, he's outside yelling at people, I said casually. Oh my goodness, he's yelling at people!!!

Yep, there he was standing at the fence yelling something that was incomprehensible to passers by. I can't imagine what people were thinking and considering some of the people who live around here, I'm surprised we didn't hear people yelling back at him.

He was quickly enticed inside because we had visitors he loved but today he decided he was going outside and I had a mini panic. What if he started yelling again? The lovely old lady was outside across the road, would she be offended?

Thankfully he was quiet today and just watched the world go by for about half an hour. But you can see in his eye a wistful look of longing to be out there in the big wide world himself and that makes me feel sad for him.


Cameron 18 yrs old

Tuesday, 17 June 2014

Just How Many Pairs of Jeans Does One Person Need???

 
Jeans

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This post is not an advertisement and has not been paid for.
I just like to tell people when I think a  product or service is good.

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Recently I took Cameron shopping for Jeans. He very inconsiderately grew out of about 4 pairs of last years jeans and now that we don't have school uniforms we need more casual clothes.

We walked into our favourite men's wear shop - Ed Harry at Southlands Shopping Centre and told our favourite shop assistant, who's name I think is Hannah - that I needed 4 pairs of jeans for Cameron. She is like the angel of shop assistants and has been dressing Cameron for the last few years. She guided us through the transition from children's clothes sizes to men's and also guided us into what was appropriate and fashionable for Cameron to be wearing. Cam's been looking pretty cool ever since we met her.

We started searching around the shop discussing what the other guys his age are wearing and what will look good on him. We eventually walked into the change rooms with an arm load of jeans.

Thankfully nobody else was in the change rooms and I was able to put Cameron into the end room where I could keep the door open and let him walk out to look in the mirror at the end of the passage. The change rooms are way too pokey for two adults.

I started undressing Cameron and he started growling. I'd stand up and undo his button and zip and then squat down as I pulled his jeans down and wrangled them off his feet with him grabbing onto whatever he could find to keep his balance. Cam kept growling. Jeans fitted and jeans didn't fit and the jeans kept coming until at one point I was completely confused as to what fitted and what didn't. But Cam kept growling.

I started to get really hot and then the sweat started. I was getting quite a work out trying well over 20 pairs of jeans on Cameron. And Cameron didn't appreciate one single drip of my sweat, he was just mad that I kept putting jeans on him and taking them off him.

We eventually ended up with 6 pairs of jeans that fitted and I was so exhausted that we bought them all. I wasn't going through all that to leave something that fitted in the shop.

Cameron happily escaped the change room and proceeded to check out the service desk and try and use the computer while Hannah and I sorted out my mess.

As I stood there ready to pay Cameron's growls were still ringing in my ears and then the thought occurred to me that nobody else had come into the change room while we had been in there and we'd been in there a long time. I quickly apologized realizing that we possibly put customers off with our racket. That is when Hannah said the sweetest words I'd heard in a while.

"You didn't but if any customers had said anything they would be customers I wouldn't have wanted anyway."

My heart melted, how often do we as special needs parents receive such support from people in the retail world. I wanted to cry.

Over the last few years Cameron has really challenged us as we have bought him clothes at Ed Harry and Hannah has always looked after us with a smile on her face and wonderful support. She is one of our favourite shop assistants.

You would think 6 pairs of jeans was a little excessive but I am so glad I bought them all because Cameron being Cameron has actually wet his way through most of them in a day, a couple of times now. We always need to be prepared as the Girl Guides say.

The morning after our shopping exhibition I woke up and as soon as I moved my legs I felt pain shooting through my thigh muscles. I lay there for a second wondering why I was in so much pain and then it came to,. I'd done squats for 45 minutes the day before and now my muscles were complaining - loudly. Ouch.

Monday, 16 June 2014

Cam Got a Haircut .... Ooops

Cameron 18yrs old

On Saturday Cameron went with MMM to get a much needed hair cut. I was referring to his hair as Sideburns Gone Wild. He really needed a hair cut.

They went to the new hairdresser we had found after a bad experience at a hairdresser a few months back. He looked so bad that time I actually felt he needed to go and get another hair cut. Prior to that we had been travelling back to his old hairdresser near our old house. Changing hairdressers is one of the bad aspects of moving. I still haven't braved up myself.

MMM has done such a great job of teaching Cameron how to behave in hairdressing salons and Cameron has built up his skills to the point that he can now sit in the chair independently. I'm so proud of him and I think he's proud of himself.

This visit MMM settled Cameron into a chair and spoke with the hairdresser before leaving them both and sitting in the waiting area. Cameron did really well and after a quick consult with MMM about whether product should be put in his hair or not the hairdresser was just tidying up the back before the hair cut was over when ........

Cameron whipped around to look at something. Whooops. the clippers shot up through the back of Cameron's hair leaving a very uneven hair cut.

The poor hairdresser then had to even his hair up meaning that as the temperatures are dropping here in Perth, Western Australia and we are rugging up for winter Cameron is now sporting a very cool summer length hair cut.


Cameron 18 yrs old

What a duffa. Oh well, his hair is cut and it will be a while before he needs another one. And full marks to his hairdresser who dealt with the situation so beautifully. We have definitely found Cameron's new hairdresser.

Friday, 13 June 2014

Knock Knock, Who's There ........



Knock Knock

Who's there?

Knock Knock

Cameron, you don't need to knock.

Cameron has decided that you should knock when entering doors in any situation. That includes his bedroom, shops, the bathroom, the dance studio, the laundry, our front door and public toilets.

I am presuming that Cameron was taught to knock at school, probably when entering other class rooms or staff members offices. However, Cameron being Cameron has decided that this skill is required in all situations no matter how ridiculous it seems. He has a habit of adapting skills he learns in one situation into other situations whether they are appropriate or not.

He knocks on the door of The Institute and then knocks on the door of the empty therapy room we enter. He will even knock on the main door when we are leaving The Institute. It doesn't worry him if there is no actual door or if the door way is enormous or small, he will find something to knock on.

When shopping he insists on knocking as we are trying to enter shops and has also knocked as we entered the disabled toilet. This could be looked upon as politeness but when it's done Cameron style it's frustrating.

The funniest knocking is at home where he will knock on his bedroom door, the kitchen door, the front door as we are trying to enter or exit. We keep all the doors open so he isn't entering closed rooms. I don't think I've caught him knocking on his wardrobe door but I wouldn't be surprised.

So life is full of ......

Knock Knock

Cameron you don't need to knock

Knock Knock

Cameron stop knocking we just have to walk in

Knock Knock

Cameron, let go of the door frame and just get in there.

You never know, one day he might actually tell  me a knock, knock joke but in the mean time at least I know he understands it's polite to knock,

Thursday, 12 June 2014

Why Cameron is No Ordinary Kid - Part 60

I know you were expecting to read whether our marriage survived or not but that was further along in the story so you will just have to wait and see.

There were some absolute positives about moving back to the city and mostly they were based around our families and friends.

Sadly we had left a couple of our best friends behind in the town we had been forced to leave but thankfully they forgave us eventually and now we live closer although not close enough.

In the city we were back with Michael's family and my extended family plus most of our good close friends. We were able to join in with birthday celebrations, Easter, Christmas, Mother's Day, Father's Day, Anniversaries, New Years Eve, births, deaths and weddings. It was really nice to be able to be part of everyone's lives again and be part of the celebrations. I do like a good get together.

I was able to see some of my friends on a weekly basis which was heaven. We could sit and chat, have a coffee and just be us again instead of communicating through letters (shock horror - there was life before email)  and expensive short phone calls. One very definite positive was our cheaper phone bills.

I started going to Michael's Mums for dinner each Wednesday night which broke my week up. I'd see my Grandmother up to three times a week and I timetabled my girlfriends in for coffee catch ups, often at my house so we could put Cameron down or at least have his things so it wasn't such an upheaval for him and me.

I looked forward to my catch ups and normal time. It made me so happy to be with the ones I loved and it took me away from my reality for just a little while.

Michael also had a huge positive by moving to the city. He became a Docker's member with his best friend and they were able to go to the AFL games when Fremantle played in town. He loves Australian Rules Football and to be able to see his favourite team play live each fortnight was heaven for him. Plus he too was spending time with someone he had missed by living so far away.

By living in the city we even saw more of my parents because it was much easier for them to visit us in the city from their country town than it was to get to the town we had lived in. The only person we saw less of was my sister, which was really sad. If you can recall she lived in the major country town we had been flown out of to get Cameron to the city hospital. She got down to the city as often as she could and did eventually move down here just like my parents eventually did too. So in the end I had my family all around me just like Michael and that made life much better.

I believe things are really not that important, people are and if you have your family and friends around you, you can just about cope with anything because you have the love and support to lift you up and help you fly when you need to.

Wednesday, 11 June 2014

Why Cameron is No Ordinary Kid - Part 59

Michael flew out every Monday morning and in every Friday evening. It was a heartache to see him leave and a joy to see him return but it wasn't ideal.

Monday morning I would roll out of bed, throw some clothes on, gently lift Cameron up and pop him in the car when Michael was ready to leave. We would chat as I drove out to the airport and because of Cameron I would drop him at the door kissing him goodbye for another week.

His flights were in the wee small hours of the morning so I would drive home, pop Cameron back into bed with my fingers crossed and then crawl back into bed myself to grab a few more hours sleep before the routine of the week kicked in without any way to stop it. As the weeks and months crept by I got this routine down to a very fine art and Cameron and I were out of the house for the barest amount of time possible and my body would drop back into a deep sleep the minute my head hit the pillow again.

Cameron and I would survive our week and then drive through the Friday afternoon peak hour traffic to the airport to meet Daddy. We always parked and walked in to meet him. The airport is very different these days but back then you could sit in a waiting area which faced glass walls through which you could watch the travellers arrive and then have time to hop up and meet them at the door.

Each Friday we would go into this area and most afternoons Cameron would cry and I'd receive dark glares or even worse people would get up and leave. More than once we sat in the area all on our own with Cameron's cries echoing around me.

Michael was always happy to arrive home and delighted to see his baby boy. We'd pile into the car and head home in the traffic for another weekend of fitting in as much family time as possible.

Over the weekend Michael would help with Cameron but as time went by things changed a lot week to week and I began to get agitated with Michael because he wasn't doing things the way I did them or the way they had changed. Therapists would have asked me to do things certain ways and of course Michael was working off last weeks requirements not this weeks. I developed routines and coping mechanisms because I was on my own and Michael just didn't understand them or follow them.

I also started to notice that Michael wasn't doing as much around the house and then it occurred to me that he was getting used to single life on the mine in single men's quarters where  his food was always there in the mess and his room was always cleaned for him. He really didn't have to do much for himself anymore. This started to really upset me, especially as my exhaustion grew.

After months and months of this routine our relationship started to feel the strain. Michael didn't want to be away all the time, he missed us and was missing out on everything. I didn't want him to be away all the time, I missed him and I wanted and needed the help and support.

I remember standing in a friends kitchen one night on the brink of tears saying - I'm not sure we are going to stay together. It's just not the same anymore, I love him but ........

They were good close friends and knew us well enough to say - you are going to get through this, trust us, he loves you.

By this point I was well aware that a lot of marriages that involved a child with special needs ended in separation and it was terrifying me. I didn't want to be another statistic and I didn't want to lose Michael, I loved him too much. But the cracks were cracking.

Tuesday, 10 June 2014

Why Cameron is No Ordinary Kid - Part 58

We were finally settled in our new home with Michael flying in and out Monday to Friday. Life started to settle into a routine. And I felt so lonely.

Our days were so busy with appointments and life but come the late afternoons/evenings and suddenly it was just Cameron and me all alone. No adults to talk to, no adults to eat with, no adults to share the burden with, no adults to cry with. The evenings were horrible. I'd look after Cameron and then stare at the kitchen unenthused to cook. I started eating frozen dinners because they seemed healthy and were hot in minutes.

Cameron would often go to bed at a very reasonable hour so I would sit and eat on my own and watch TV on my own, and potter around the house on my own. It wasn't right, this wasn't my plan. I had a husband and here I was all on my own.

Eventually each evening I would head to bed and without a doubt, whether the light was on or off, the second my head hit my pillow Cameron would start crying. It didn't matter what the time was, early or late. It was as if he was linked to my eye lids and as they tried to shut his opened.

I would do everything possible to get him back to sleep but it was a thankless task. He would usually end up sleeping in my bed with me and when he finally went to sleep I was exhausted and frustrated.

Most nights were restless and consequently we were not early to rise. We were roll out of bed in a blind panic because we were due at an appointment in half an hour. Thankfully the freeway wasn't as bad back then as it is now and I perfected flying out of bed, dressing myself and Cameron, medicating Cameron, grabbing bottles and food for Cameron along with the always packed change bag and flying out the door in no time flat.

It was this time in my life when I really started to not look after myself anymore. I generally skipped breakfast, I existed on little sleep. I drank copious amounts of coffee and grabbed fast food on the run. Showers were skipped, clothes were recycled, make up became something of the past and haircuts became infrequent along with colours. It was a slow and gradual process and the Jane I knew began to slip away into exhaustion and despair.

I didn't take to drinking and I'm very glad I didn't. I was always fearful of drinking even a small glass of wine on my own because I knew I had to be alert and ready for Cameron at any time and I knew I couldn't do that if I'd been drinking. A glass of wine or two is a commonly talked about crutch amongst the Special Needs Community along with coffee and chocolate. I embraced the coffee and chocolate, big time.

This period of time was not an easy one for me and I became frustrated with Michael flying in and out and getting, what seemed to me at the time to be, the best of both worlds.

Monday, 9 June 2014

What Will Happen When I Am Gone?



There is one secret fear that burns in the heart of every parent who has a child with special needs. What will happen when I am gone?

It is the natural way of the world that parents die before children. Generations after generations have followed this natural progression. Occasionally things go wrong and children die before parents and it devastates the parents and unbalances the natural balance of life.

However from time to time some parents wish their children would pass before themselves and it isn't for a selfish reason, in fact it is for a very unselfish reason. If they die first who will care for their disabled child who is now an adult and unable to care for themselves.

Every now and then you see news stories of parents taking the life of their child and then themselves and it is not uncommon to then read that the child had special needs. That parent was so desperate they didn't see any other way. They didn't believe that anybody else would love their child the way they loved their child. They didn't believe that anybody else would take the time and make the sacrifices that they had made to care for and love their child. They believed that their child would be worse off if they were alive without them and they felt they had only one option left but to die together on their own terms.

This is an understandable belief that all parents have. All parents feel this way when their children are children. Nobody can parent your child as well as you nor love them as much as you do. The problem is that our children with special needs grow up but we still parent them as we were when they were children because that is what they need and therefore those intense feelings do not go away.

It is a devastating turn of events when a parent double suicides but when you stop and think you really can't blame the parent for their beliefs because where is the proof that they are wrong. Where are the incredible care homes full of plentiful staff with realistic staff to client ratios so the clients are cared for as they would be in their own home. Where is the funding so care homes are set up as comfortable, homely environments where people can live meaningful, fulfilling lives to the best of their abilities with all their individual needs met and every effort made to improve that quality of life and ensure social interaction with the world at large.

Where is the social attitude that everybody regardless of their lot in life deserve comfortable appropriate housing full of every resource that each person needs. Why does society still turn a blind eye and pretend that nursing homes are only full of old people and not people of all ages requiring nursing care plus adults with special needs who require high care but not necessarily nursing care. Why does everyone think that nursing homes are sufficiently funded so everyone is living a comfortable, happy life? It's just not true.

Yes, you are right, there are some facilities set up for adults with special needs to live in. They have appropriate client to staff ratios and care is provided in a home environment. However there aren't enough of these facilities and sometimes what is available isn't suitable for the needs or wants of the person with special needs.

Every parent with a special needs child spends countless hours pondering the what will happen question. It scares us at night and bring tears to our eyes during the day. If your marriage has been fortunate enough to survive the test of a child with special needs then your child has two parents which will hopefully give them more time living at home but so often the stress of raising a child with special needs destroys the marriage. And then what happens as the parent ages and can no longer physically cope with the physical demands of caring for an adult who needs lifting, showering, changing, controlling, etc, etc, etc.

When My Little Angel was born one person announced that they were relieved she was a girl because now there was someone to care for Cameron when we were gone. I was aghast..Why couldn't a brother look after him as well as a sister but that sexism argument can wait for another day. The real reason I was horrified was because I didn't bring MLA into this world to be a carer. That isn't her lot in life. She is here to live her life and if that takes her around the world or just next door that is her life to live and she shouldn't be tied to her brother because it was her lottery win to be born with a brother with special needs. I hope, and truly believe that she will, care about her brother and look out for him and ensure he has a good life but it's not her job to physically care for him.

So then I come full circle back to the initial question - What will happen when I am gone? And still the question is unanswered and I am just one of thousands of parents asking the same question, and worrying the same worries and losing sleep over the same nightmares. We will of course make plans and hopefully create a good life plan for Cameron but what about the thousands of other parents who don't feel they can? What if there are no care homes available and what if the care isn't good enough? What if the home is a long way away and visiting is difficult and what if Cameron isn't happy? What if we can't find the money to make plans on our terms?

What will happen? We just don't know so for the moment we just won't die - problem solved.

Sunday, 8 June 2014

How To Be A Receptionist

Cameron 18 yrs old
Welcome to The Institute of Functional Neuroscience, this is Judith speaking, how may I help you.

I hear these beautifully spoken words every day when we attend our sessions at The Institute of Functional Neuroscience. As you enter the front of the building or when you call there is Judith with a huge smile on her face and a friendly warm disposition welcoming you in and offering to help in any way she can.

And sometimes she is presented with rather challenging situations to assist with but her smile never slips, her patience never shifts and her gentleness is always bathing you in a warm glow. Judith is the perfect person to greet you as you walk in after surviving traffic, your children and just life in general.

Her desk is always organized despite the rest of the staff constantly moving in and out and leaving all manner of things on the end of it. Her desk is always clean despite how many children, mine included, visit her desk, climb on her spare chair and often play, eat and drink at her desk.

She cuddles babies, entertains toddlers, manoeuvres everybody to give access for wheelchairs of all imaginable sizes and manoeuvrability's and chats to everyone about their day, their therapy and their life.

Due to the enormously varying degree of conditions that attend the institute Judith copes with destructive children, seizures, adults who are not exactly happy and people with every kind of disability imaginable. Some can't talk, some can't hear, some can't see, some can't walk and some can do very little at all. Everybody is treated with the same level of gentle kindness, respect, understanding and consideration. Doors are held open, special arrangements are made for payments through third parties, taxi drivers are accommodated.

This is all done whilst she does her clerical duties with swift, neat, efficiency. Dealing with computer crises whilst juggling appointments to accommodate everyone's personal life needs is just an average day for Judith. All solved with a smile.

So while Judith keeps all the balls moving in her three ring circus she also manages to allow my son to shine at her desk beside her. Cameron loves to be a receptionist too and it is near on impossible to stop him going straight behind the desk when we arrive, sitting next to Judith and immediately trying to help - I say help very loosely.

Judith has a silent signal for the days when Cameron just can't be accommodated behind her desk that day and as soon as I see files piled on the spare desk chair I know to steer Cameron to the waiting area but it is usually accompanied with a lot of grunts and growls from Cameron and a great deal of effort from my muscles because Cameron is not happy and spends the rest of his wait trying to spring off his chair when I'm not looking and try to race into what I'm sure he considers - his chair.

On the days Cameron can sit in his chair he sits there with a huge smile on his face and welcomes patients to the desk. He has on occasion helped patients who didn't realize his disability by handing them a pen or another item from the desk, all by himself. He wishes Judith's computer screen was a touch screen and she is eternally grateful that it is not because Cameron would have caused so much chaos on the booking program by now if it was. He interacts with all the staff and flips through magazines because you have to do something that looks like work when you sit at a desk.

It can take quite a bit of effort to get Cameron off his desk chair and into his appointment some days because he really enjoys sitting with Judith who makes him feel special and he really likes greeting all the other patients who often comment that Judith has a helper. It's a special day when you hear Cameron say Hi and Bye to patients as they arrive and leave.

Cameron has a habit of walking out of his therapy sessions because he figures he's been there long enough and he wants to get back to Judith. It's not uncommon for the doctor to walk in for a chat after treatment and find Cameron gone - he's with Judith. So the doctor and I chat and then we wander down to find Cameron sitting with a huge grin at the front desk. But that is what is so great about The Institute, they accommodate everyone and understand that this is normal toddler behaviour which Cameron is developmentally appropriately displaying.

Cameron makes a few demands of Judith. As anybody who knows Cameron knows, he likes to admire jewellery and Judith wears beautiful jewellery so Cameron is quite often pointing her jewellery out to her and admiring it. This can become tedious but Judith deals with it beautifully and then Cameron asks for his shoulder rub and the game is on. Cameron tries to trick Judith into massaging his shoulders and then in return Judith tries to get Cameron to give her a should rub. This is an ongoing ritual between the two of them. He tries to get other staff members to give him shoulder rubs too and his success rate seems to depend on their age - he gets more from the younger staff.

Being a receptionist is hard work, and being a really good receptionist is something that not everyone can do. We are so lucky to have Judith at The Institute looking after us all and Cameron is especially lucky to have his special friend who lets him be a receptionist for a couple of minutes each time he visits, allowing him to spread his sunshine alongside hers.

And guess what guys? I see the two of you waving to each other through the glass door and front window of the car as we back out of the car park, sharing one final farewell for that visit.


Judith and Cameron
 

Saturday, 7 June 2014

Life Just Isn't The Same Anymore - But it's Good

The last of the lost blog posts and this one describes how I was feeling when Cameron started therapy with The Institute of Functional Neuroscience and everything changed.
 
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Cameron 16yrs old
In only a couple of months our family, as we knew it, has changed and it is really strange and a little unsettling. Not for a moment do I wish it would change back and I want it to keep changing but I wasn't prepared. Before October our life was predictable we knew what Cameron would usually do in any situation and we went through our days with a certain level of certainty about what to expect. Now we have no idea.

As Cameron's brain is changing due to the work we are doing at The Institute of Functional Neuroscience almost everything about him is changing. Then throw in a growth spurt as well and I have a new child.

I always used to say that my son was a giant toddler, a one to two year old trapped in a sixteen year olds body. A low level of skills but he can reach everything. He is cheeky and adorable but very limited in what he can do and totally reliable on others for everything. Of course he could do lots of things and we knew how to communicate with him and he showed us how much he loved us everyday but he was trapped and we had to find the key to let him out. People always commented - 'there's a lot more going in than is coming out'. I honestly think we've found the key and we are on a journey that finishes - who knows where?

And that is partly the problem at the moment. All of a sudden Cameron is doing all these amazing new things and is no longer predictable. Things that he never used to pay attention to he is suddenly interested in. Like my laptop. This isn't a bad thing, in fact it is fabulous but it's all happening so fast that we are having trouble keeping up and catching our breath between amazing new discoveries and intrigues. Some days I haven't finished being amazed about one thing and suddenly Cameron does something else new and amazing.

It must be incredible to be inside Cameron's brain at the moment. It is wearing him out but after a few days rest from therapy he recuperates again and the smile returns. Can you imagine suddenly after sixteen years discovering your world?  Did he know he couldn't do these things? Was he trying or was he caught in a fog and didn't know what he was missing? Will he ever be able to tell us? We have never ending questions now and we keep looking at each other and wondering what life will be like in a year, six months, even next week. Or will we wake up and this will have been an incredible dream where we made all our dreams come true. I hope not.

It's funny how you get what you wish for and then don't know how to deal with it. As we ride this incredible roller coaster I'm recording as must as possible in my blog and on my facebook page and every therapy session I tell his doctor the incredible things he has done since we saw her some times only the day before. It's almost like an out of body experience because you've never imagined you would be in this situation and it sounds almost too good to be actually true. Could he really be threading pasta and using chopsticks and learning to use a knife and learning to use the toilet and using a choice board and, and, and ......

We've spent years and years trying to do the simplest of things and I've always had this underlying feeling that if you leave him alone he will do it when he's ready. He had to learn his skills developmentally and something had stopped him from learning developmentally. You watch him now and that is exactly what he is doing. He needs to go back and do what one, two and three year olds do. I've caught him crawling between rooms and bum shuffling . He's finally doing what his brain needed to do all those years ago. You can see it in his eyes, they are different, he is seeing his world and he's wondering what it's all about.

Meanwhile I am wondering if I should be heading for the shops to re buy all the toys we gave away from when he was little so he can stack and push and count and swirl. How hard do I push the school to give him a Pre-Kindy program? I know that sounds ludicrous, a sixteen year old doing a Pre-Kindy program but it is what he needs. I can't figure out when and how to fit therapy in and around school and have one week to figure it out. If the school can not accommodate our needs for Cameron do I keep him home and put my teaching hat back on. (It is after all my area of expertise and I've got my girlfriends who are still teaching to back me up) but will Cameron accept me as the teacher when he has rejected me as the therapist?

Life is a giant What If and Do We but How Do We and What Next mixed in with lots of smoochy cuddles from Cameron because he is needing a lot of Mum and Dad cuddles at the moment and constant shock and You Won't Believes and Ssshhh - Look at Cam.

But despite all the shock and uncertainty I wouldn't change it for the world. It is so exciting to see Cameron try each new thing and every little achievement brings my son closer and closer to me and if that means life has to go on hold so I can keep turning that key then that is what I will do. Because I am still chasing my deepest dream which is to sit with my son and hear him say 'Mum - ............... 'and to hear him talk to me about his day.

I may be dreaming but it's a good dream.

Friday, 6 June 2014

I Don't Consider Myself a Special Needs Parent

 
Me
 I've read a few blog posts over the last few months about how parents of children with special needs would like people to talk to them and be friends with them. The blog posts I have read have been wonderfully written and have stirred up a lot of good discussion amongst the special needs community.

Every time I've read one of these posts something has niggled in the back of my mind and it was only today as I read another wonderful blog post that I realized what it was.

I don't want anybody to treat me any differently to how they would treat me if I didn't have a son with special needs. I don't consider myself a special needs parent - I am a parent with a child with special needs.

I purposely go out into the world as me - Jane - and I don't label myself as anything else. It's never occurred to me to be anything else. Yes, I have a son who has lived to tell a lot of amazing tales and likewise has given me a lot of tales to tell but I also have a daughter who challenges me in completely different ways and gives me lots of tales to tell too. I'm a wife, a sister, a daughter, a niece, a cousin and a granddaughter. The list goes on and on.

I like being me and I will purposely walk into situations and not share the unique aspects of my family life so I stay uniquely me for a little while longer. Eventually if the opportunity arises I will share our uniqueness but I think because they meet me first news about Cameron becomes just another part of my story.

Don't get me wrong, I'm not embarrassed or want to run away from the reality of my life, quite the opposite, I will happily talk for hours and share our experiences with anyone who wishes to know but when that is all someone focuses on I am left wondering why? I haven't enquired about only one aspect of their life.

Don't we all at different times in our lives stand out from the crowd because tragedy or triumph strikes? We are all unique when we become expectant mothers, mourn for our parents, stand tall as proud parents or huddle together as scared siblings. We make connections because of our experiences and some of those connections turn into lasting wonderful friendships but we don't always need a commonality to become friends, sometimes our differences are what make our friendships stronger and these people can turn out to be our greatest allies and supporters.

I see the life I live as my way of growing and learning and at times the lessons are extremely painful and quite frankly life would be a lot nicer if I didn't have these lessons to learn from but I'm here to grow and learn and my children's extraordinary journeys are a part of that.

As I read lists on blog posts about how people would like their friends to treat them I reflect upon my friends and my good friends treat me as me. I sit and laugh with them, eat out with them, complain about my day with them and celebrate my achievements with them. We all get too busy and have to remind ourselves to make time for each other just like everyone else and we all struggle sometimes and fly high other times. (No we don't take drugs) I can be me with my friends and that is just the way I like it. I don't need a lot of friends, I just a need a few truly good friends who care about me as I care about them.

I've experienced friends turning away because of the discomfort of what happened to Cameron but truth be told, at some point those friendships would have ended anyway because they obviously weren't strong enough to withstand the test of time.

I've made friends because of Cameron just as I've made friends because of My Little Angel. Some of these friendships are lasting and some of them have not but there is a common thread. The true friends see me first and my child second.

Of course I've experienced the tactless comment mostly made by strangers and friends who haven't stuck around but occasionally also from good friends who just didn't stop and think because their life was hectic at the time or they just didn't have the insight into my life to understand the impact of what they said. But from my good friends I know they meant no harm, I know they were trying to help or trying to understand because they see me and my family as an important extension of their lives and they wouldn't want to hurt us in anyway.

My true friends treat Cameron as he should be treated with love and understanding. They learn his little ways and follow our cues for appropriate behaviour. They support us when times are scary and laugh with us when things become just down right ridiculous. They receive Cameron's seal of approval and when Cameron thinks you're special - you are. And they do the same for My Little Angel.

My friends let me be special. Not because I am a Special Needs parent but just because I am me,

Thursday, 5 June 2014

The Most Fun Appointment Ever

 Another forgotten blog post and this was from last year. There's an update at the end.

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Cameron's Ipad and Ipod
The Most Fun Appointment Ever is what I think Cameron would have called our appointment at the Independent Learning Centre.

Cameron has days when he is really switched on and performing and this was one of those days. I think the good mood started from being allowed to sleep in for an extra hour and then getting to hang out with mum instead of getting in the car with MMM and MLA for the trip across the river. He really enjoyed the trip to the ILC and pointed out cars to me in the traffic jam - apparently I couldn't see them.

In true Cameron style he introduced himself to all the reception desk staff and then settled back with a magazine which he read upside down at lightning speed without looking, as he does.  Fairly quickly we were joined by our consultant and two students. Surprisingly Cameron didn't worry too much about the students although I caught him having a look from time to time.

We walked into the room which had computers and technology set up and we all sat down in the middle of the room. Up to this point everything was normal - then Cameron proceeded to take off his shoes. Yes, you read that right. Can you picture my look of shock and then laughter. He refused to put them back on and instead spent most of the appointment trying to tuck his legs up onto his seat as you would if you were lounging at home watching a movie.

Then the fun began. We were there to discuss communication devices and apps for Cameron. He has progressed so much that we can now see him using a communication method effectively unlike in the past when he played with them. Technology has progressed so dramatically in the last few years that  lots of old devices that were large and clunky have been replaced by ipads and similar devices.

Our consultant was fantastic with Cameron and always asked him every question and Cameron responded by head noddling or saying yes or no and he was very reliable in his responses. We discussed his ipad and how he uses it, his ipod and how we use that and what we want for his future, which is for Cameron to be able to request what he needs but also to be able to have social conversations with people. Up to this point we have only used technology for him to request his needs. She then showed us her ipad and Cameron's eyes lit up. She demonstrated an app we trialed before called Prologuo2go which I had hated and showed me how the developers had improved it and addressed most of the issues I had with it. She then created a page just for Cameron so he could introduce himself. He loved it.

She let Cameron have her ipad and he had watched what she had done and very quickly introduced himself and then pressed the next icon she had made for him saying that he liked his ipad. We continued to talk and Cameron started exploring her ipad. He went in and out of  apps, some of them familiar to my ears. Then she showed us the mini ipad which is halfway between an ipod and ipad in size. The mini ipad has become very popular for communication because the screen is larger than an ipod and the device is not as big as an ipad to carry around.

Lastly we looked at the Samsung device which has another name which I have forgotten. Basically they have two sizes equivalent to the ipod and mini ipad with a solid case and handle and speakers at the back. They were quite heavy and cumbersome compared to the ipod and ipads. If you had an issue with hearing then the speakers would be helpful but we haven't found that to be an issue with either the ipod or the ipad for us.

Cameron got to have a play on the mini ipad and the two Samsung devices too. He really was in heaven.

After much discussion and contemplation it was decided that we will trial Prologuo2go again in it's new version and all going well we will put in a funding application for it on a mini ipad with a protective cover since this device will be out and about all over the place. This is the last year that Cameron can apply for funding because he leaves school at the end of the year so now is the time to get moving.

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Cameron's Communication Mini Ipad
An update - Following the trial Cameron was funded by Rocky Bay for a mini ipad with a Griffin Survivor cover and Prologuo2go for communication. The purpose of this was to give Cameron a way to have social conversation. We set up pages so he can share his life with others.
 
He used his communication ipad at school during his final term successfully and we attempted to use it with family and friends but Cameron tended to get very embarrassed when we suggested he use it. We have given him a break and now we are introducing it with his carers at Dadaa and hopefully with a fresh start he will find it a valuable tool to share his day to day life with everyone that he would like to talk to. Eventually we hope to also add pages so he can make requests and express his feelings more successfully. Stay tuned for updates.
 


Wednesday, 4 June 2014

Kiddikutter

Have you heard of kiddikutter knives for kids and people with special needs?
 
kiddikutter knife
This is not a paid advertisement I just like to share wonderful products when I come across them.
 
I remember my Mum meeting the lady behind this ingenious product years ago and she gave Mum a free knife to try with Cameron. I don't know what happened to that knife but I have my suspicions we may have given it to the school to use because Cameron's fine motor skills were too poor at the time to use the knife. Over the years I've heard the name and knew the knives were still around but the other day I saw them for sale and had to get one for Cameron because his fine motor skills are much better now.
 
These knives will not cut the person using them but will cut food to eat or to prepare food. They have been designed for children and people with special needs. There is great information on their website about the knives if you are interested.
 
We gave Cameron the knife to try with spaghetti and meatballs for dinner and he used the knife really well. We were able to sit back and let him enjoy his food without hovering just in case he slipped or held the knife by the wrong end. He did put the blade in his mouth but again we didn't have to panic. It will be great in the future to be able to let him help us in the kitchen and not have to worry about him cutting himself. The knives now come in a range of colours and look very modern and fun but not babyish.
 
You can buy these knives on line at the kiddikutter website or there are stores that stock them like the gorgeous Baby Goose Boutique I have found at the Gwellup Plaza Shopping Centre full of gorgeous gifts for babies and beautiful children's and babies formal wear. I confess I am slightly addicted to this shop and it's gorgeous things, thank goodness I have a pregnant friend and a reason to shop there again. Plus if you need a Cameron endorsement - he loves the ladies in the Baby Goose Boutique and they make a huge fuss of him every time he goes in there.
 

Tuesday, 3 June 2014

Why Cameron is No Ordinary Kid - Part 57

I don't remember much more about the time I stayed with Michael's parents apart from the fact I was very, very grateful for a place to call home which was larger than a little room surrounded by glass. And the pot belly heater was on the other side of my bedroom wall so my room was always toasty warm.

Finally the time came to move into our new home which was my parents home, they were living in the country, and where I had spent many happy years growing up. Cameron was going to have my old bedroom and we were going to be sleeping in my parents room. That felt odd so first priority was ensuring the bed was in a different position to how theirs had been.

The removalists arrived and the boxes started coming. If you recall we didn't decide to move, the mining company decided we no longer required our accommodation and sent packers into our home and packed it up. Thus I had no control over what was packed or how. I'm a very experienced mover and packer and every move is a wonderful opportunity for a cull and tidy up but of course that hadn't happened. We found rubbish in bins, food in containers and I think it was a miracle that the fridge was empty.

The house filled up with boxes very quickly and we resorted to creating corridors through the boxes so we could get around the house. Furniture was put everywhere but where it was needed and at the end of it all we had one huge mess to sort out. But it kept my mind occupied and active and I actually think that was a good thing.

Slowly but surely I got the boxes unpacked and everything sorted. The rooms were familiar so arranging furniture was easier than most moves but as always your furniture never fits the new home the way it fitted the old home and a few different pieces had to be acquired to solve some pretty dire storage problems.

It also didn't take long to realize Cameron needed to change to my sisters old bedroom which was further away from the kitchen and lounge room so he would hopefully stay asleep whenever he actually went to sleep. Sleep became a very precious commodity in my life.

It was so nice to sleep in our own bed again and eat out of our own crockery with our own cutlery. Rediscover our treasures, have all our clothes and finally get all of Cameron's baby items back again. It was heaven to have our own place where conversations were private, nobody was listening or watching you. You could have a bad day in private and you could collapse in a heap in comfort. It was wonderful.

Hanging Out With His Cousins

 
Cameron 18 years old
Cameron went to a 1st Birthday Party last night for his little cousin who holds an extra special place in our hearts because last year he too fought for his life just like Cameron did. Thankfully he won the fight with no apparent long term damage unlike Cameron but I have to admit to fighting the tears as his beautiful mother shared how thankful she is that he is here to celebrate his first birthday with us all. I remember saying similar words at Cameron's first birthday party.

Cameron loves our family get togethers with all his Aunts, Uncles, cousins, Great Aunt, Great Uncle and Grandparents. They all accept him and let him be himself whilst looking out for him and including him. He joined in pass the parcel with the little kids and played stick the coin on the rainbow gold pot with us big kids. He ate, he drank and he was merry.

There was one big difference last night to previous family get togethers and that was the way Cameron socialized with his older cousins. He is the second eldest of the group and both he and the eldest are the same age. Last night Cameron hung out with his older cousins and wanted to chat with them and see what they were doing. He looked very at home standing there with them.

And that was my second teary moment of the night as I looked through the kitchen window at him talking to two of his cousins and I realized how much they all look alike with there dark hair and gorgeous faces. They were including him but soon they moved on and he gravitated back to the adults. Just for a fleeting moment I saw what should have been and it looked so nice and normal.

Cameron had a great night and played his usual game with his Great Aunt. He refuses to talk to her until the end of the gathering. It's hilarious and he will tell her he isn't talking to her if she asks, with a huge cheeky grin and then laughs. Lucky she loves him.

Monday, 2 June 2014

It's Been A Week of Ups and Downs

 
Cameron Drawing
It really has been a week of ups and downs and it left me exhausted. So exhausted that I couldn't even share on Facebook what was going on and if I talked to anyone about it I got teary. By the way, did you know my blog has a Facebook page This is No Ordinary Kid . I tend to post day to day happenings on there.

The week started off alright, Monday was a relaxing day at home until after school when we headed off to the chiropractor and Cameron did something so amazing that I forgot to take a photo. He did a drawing and gave it to the receptionist. He has never done that before - given a picture to someone. I felt a little disappointed that he gave his picture to someone else but at the same time I was over the moon that he had independently drawn his picture and given it away without any involvement from anybody. Quite a moment.

Tuesday started out okay with an appointment at The Institute of Functional Neuroscience and our next QEEG. We arrived and Cameron went in by himself for his test. I sat in reception a little lost but so proud and then something happened that has never happened in Cameron's whole life. The receptionist suggested I pop out to the closest cafe and get myself a coffee. I was only gone 10 mins but the freedom I felt realizing that I didn't have to worry about him having a seizure and knowing that he was in very safe, experienced and caring hands was amazing.

QEEG done we then moved on to his report and again it was wonderful news, in fact it was almost too good. The last treatment plan worked so well that we went too far and have to bring his brain back to what we were trying to do, so the treatment plan was altered. As we sat there discussing Cameron and the changes in him, we observed how differently he behaves in the reporting sessions now, as he noticed items in the room as if it was the first time he had ever seen them. He was very much like a toddler getting into everything.

Next was his treatment session and he was much happier with the new treatment plan. He is now only linked to one machine so his hands are free and instead of growling for 10 mins he happily sat and looked at a magazine.

Tuesday afternoons is when Cameron goes with his carer to Kelete, his Musical Theatre group that he's been going to for years. His carer didn't arrive and I had one very agitated and upset young man standing at the front door growling for 45 mins until I had to make him come with me and his sister to her appointment. The next day we found out his carer had been sick but that didn't help me the night before when Cameron was still looking for her as I drove him away and nor did it help me as he became agitated and unco-operative in his sisters appointment.

Wednesday seemed uneventful until Cameron arrived home with his carer without his jacket and apparently no way of retrieving it for a week. I was a little frustrated to say the least since it's winter and he needs his jacket so I had to head out to horse riding on Thursday to retrieve it.

So far the week hasn't been so bad but then Thursday after Cameron arrived home happened and there really isn't any nice, clean way to describe this so if you can't cope with discussing bodily functions or what comes out of bodies you should probably stop reading. I have been torn between talking about this and not but the whole point of this blog is to raise awareness of Meningitis, the after affects and what life is like living with a child with special needs and this is my reality.

We have been dealing with a delicate issue lately with Cameron - excessive masturbation. Some afternoons at least once an hour for several hours, in addition to mornings and evenings. We have always accepted that Cameron is a sexual being like the rest of us but taught him that there are socially acceptably ways to express his sexual side - in other words, in his bedroom. Lately he hasn't managed to keep his urges to his bedroom and it is rather confronting to walk into the lounge room and find him mostly naked and enjoying himself. Our present home is quite small so there is no avoiding him.

All week I had been dealing with this issue each afternoon and it was getting to me, My frustration was growing. So Thursday afternoon I didn't really have a lot of calm left when I walked into Cameron's room to find him naked, with a pull up full of faeces on the floor and faeces smeared all over his bed where he had been sitting to masturbate. Thankfully the bed hadn't been made yet and the waterproof mattress protector was what he had sat on but it was confronting.

My nerves by Friday were on the edge, I hasten to add that there were also extended family issues going on and MLA had had an issue during the Tuesday appointment, that we had had to take Cameron with us for, which had by itself stressed me. I couldn't stand the sound of The Wiggles coming out of his ipad and I was fed up with growls about everything, it was getting hard to see the good bits of life. and then he did it again but this time on his made bed and he was still there when I discovered him. I snapped.

I hate it when I snap because I can hear myself exploding and I know I need to calm down but I am so stressed it has to come out. Cameron knew he had done the wrong thing but clearly he doesn't know how to control himself.

I know this is a developmental stage with Cameron and I know he can't help himself but living with this reality is really hard and these moments just about always happen when I am on my own with him. I also know that children go through these stages and parents all around the world are dealing with the same issues but... my child is the size of an adult with bodily outputs the size of an adult and I am tired after 18 years of doing this. It's gross, it's yuck and I don't want to deal with it but I have to and it's not fair.

I had my melt down, I cried on my Mum's shoulder and I drank some wine and then after an internal discussion with myself about how I am going to cope with this I switched off another bit of my heart because I know it's the only way I can cope, the only way I can stay calm in these situations. I've done this twice before but I'm sure I will discuss those other times as our story progresses in Why Cameron is No Ordinary Kid . It doesn't mean I don't love Cameron it just means I have switched off the place that reacts so that I can cope.

So that was my roller coaster of a week. Cam and I have kept our distance over the weekend. He had a wonderful time last night at a birthday party but I might write about that in a happier post and tomorrow we will start again and hope it's a better week.

Friday, 30 May 2014

Why Cameron is No Ordinary Kid - Part 56

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

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

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

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

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

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

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

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

Do You Think He Has Special Needs?

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

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

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

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

Monday, 26 May 2014

Why Cameron is No Ordinary Kid - Part 55

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

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

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

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

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

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

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

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

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

Sunday, 25 May 2014

Pets Are So Important

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

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

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

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

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

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

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

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

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

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