Sunday, 29 January 2012

Disabled Toilets Frustrate Me

Cameron's Change Bag

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

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, 28 January 2012

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

Sorry - we have an appointment

Hang on - I have to check my diary

Do you accept cheques?

It's on Savings thanks

Stop hitting - she'll/he'll break

You are allowed to tell him to stop

Cameron doesn't speak

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

Oh Yes, he understands a lot more than you realize

Has Cam had his meds?

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

Oh no!!!!!!!!!

MICHAEL

Ambulance please

We're in hospital

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

Please don't hurt your sister

Yes, he goes to school full time

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

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

Then go to the toilet

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

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

Watch the step

Good looking

Playschools on

Turn the music down.

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

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

If you want a drink then go and get one

I love the fact you get sarcasm

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

Please don't touch the buttons

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

At least Cam got the joke

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

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

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

High Five

STOP! - You're hurting

Funny Cam

Not everyone wants to talk to you Cam

Hands down

Please don't touch

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

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

Has anyone seen Cameron's shoes?

Has anyone seen Cameron?

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

Hey Cam - well done

Please don't tap me

Yes, I know this is the way to Grandads

Not happy Cam

Please don't scream

That's fantastic Cam!!!!!!

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

Why????????

Oh, it's time for a hug - okay

Thank you Cam :)

I love you too

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This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.

Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturday.org/home/


Thursday, 26 January 2012

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

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

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

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

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

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

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

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

Tuesday, 24 January 2012

My Little Angel is Being An Angel

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

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

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

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

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

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

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

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

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

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

Monday, 23 January 2012

Is It A Seizure???

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

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

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

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

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

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

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

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

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

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

Sunday, 22 January 2012

Special Saturday - Dealing With Setbacks

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

We are no different.

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

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

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

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

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

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

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

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

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

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This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.

Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturday.org/home/

Wednesday, 18 January 2012

A Therapy Update - This Week is Better

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

Tuesday, 17 January 2012

Cameron is Doing So Many New Things

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

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

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

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

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

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

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





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

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

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



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

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

It's a Day of Double Takes


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

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

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

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

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

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

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

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

Saturday, 14 January 2012

Special Saturday - Me Time



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

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

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

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

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

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

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

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

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

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

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

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

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This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.

Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturday.org/home/

Friday, 13 January 2012

Cameron is Feeling Better

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

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

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

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

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

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

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

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

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

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

Thursday, 12 January 2012

Too Much To Say and Not Enough Time to Write

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

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

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

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

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

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

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



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

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



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

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

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

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

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






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

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

Tuesday, 10 January 2012

The Hand Machine and My Little Angel

Today was our first session after the third QEEG. So today was the first proper session using the hand machine.

We started with the hand machine and I wasn't prepared for being left on my own with Cameron to supervise him and do therapy with him for ten minutes. Those ten minutes felt more like twenty.

I think somebody forgot to explain what was going to happen. So when I was asked if I'd brought a book with me or was I happy to use the book in the room I was a little stunned and caught off guard. All of a sudden seeing parents walk out of appointments with books and ipads made sense. I'd often wondered why.

Each session Cameron will be wired to the machine through his left hand. The treatment machine doesn't use sticky pads like the machine we'd used on Saturday, instead it uses wet sponges and a bandage to keep everything in place. Oh no, my brain was saying as our doctor walked out of the room leaving us to it.

Immediately Cameron's fingers started to twitch and this stunned and troubled Cameron. His fingers didn't twitch on Saturday. Plus the sponges were dripping and Cameron was unhappy that they were dripping. Thankfully I had paid attention on Saturday and knew that the goal during the hand machine was to get Cameron to find colours and animals but the book I was using had excessively busy pages which I think were too busy for Cameron to cope with at the moment and were full of every object imaginable. He was also supposed to use his left hand that had twitching fingers to point at the colours I was asking him to find. He wanted to use his right.

Cameron didn't really settle properly at any point while the machine was on. He will improve but it was an unexpected jolt from our usual relaxed appointments and I didn't feel very comfortable.

To his credit Cameron didn't rip the bandage off or pull the cords out. He did give up on the book so in the end we just had to sit there.

However a lot of praise is owed to My Little Angel. She was amazing. She watched everything as it was being set up and quickly realized I couldn't hold the book up for Cameron, find items for Cameron to find, restrain Cameron from the cords and bandage, point to pictures and restrain Cameron's right hand all at the same time as wipe away the water and  comfort and reassure Cameron whilst keeping him focused on the task at hand.

As I struggled and had bad therapy session and hospital flashbacks My Little Angel climbed up next to Cameron and started speaking in a beautiful calm, comforting voice. She held his right hand and started pointing to pictures to help me focus Cameron. She reminded him to use his left hand and wiped the water from his leg. She enthusiastically found the pictures we were looking for and playfully had pretend trouble looking for others. She praised Cameron when he found a picture and only encouraged when he didn't. When it all became too much she started to read him a fairy tale to help me keep him seated.

Things will improve as Cameron improves and at least next time I will be prepared - I will take some of Cameron's books. I could have taken the beautiful Playschool colours board book we bought him on Saturday but unfortunately less than 24 hours after we purchased it Cameron had weaved his usual magic. (It's worse now)



I'd like to take the ipad but I don't think the ipad and water should mix which is a shame because I have downloaded some brilliant colour and animal apps. Oh well.

As for my wonderful daughter -  she truly is my Angel and if she hadn't been there today it would have been really difficult.

Monday, 9 January 2012

A Broom Handle Update

This evening My Marvellous Man helped Cameron to do his broom handle. I was in another room and heard an excited - Jane come here!

Do you remember Dr Beck told us it would take Cameron two weeks to learn to move the broom handle up and down in his left hand?

Cameron was moving the broom handle down!!!! Of course his muscle strength has to develop so he didn't do the whole handle but his brain has already figured out what it has to do.

This prompted us all to try moving the broom handle up and down in our hand and you know what? It's hard and MMM and I had to stand there and methodically work out how to do it. Going down is the easiest but difficult. It then took me a while to get the message from my brain to my fingers to try and figure out up. Up is really hard.

I suspect we are in for another amazing week.

Saturday, 7 January 2012

The Third QEEG Results


Today we received the results from Cameron's third QEEG at the Institute for Functional Neuroscience. Saying that our appointment ended with me giving Dr Beck a heartfelt hug and tears welling in my eyes may give you a hint to how it went. Sitting here now it feels a little like a dream but My Marvellous Man assures me it did happen and My Little Angel was there too.

Again we were shown the colourful pictures of Cameron's brain and again we could see the changes happening. To our uneducated brains some of the pictures didn't look as successful as last time but Dr Beck explained the changes and why the colours were the colour they were and as he talked it started to dawn on me how fantastic those little coloured brains were. Cameron is doing amazingly well. Areas of the brain that are still red are being surrounded by green and that is what you want. And those red areas are shrinking. Plus the blue areas are also shrinking - green is moving in.

Mr A who conducts the QEEG's was sitting  across from me with the biggest grin on his face throughout the whole meeting. He knows personally what this therapy can do for you and is sharing our joy.

I told Dr Beck about some of the changes we have seen in Cameron and the room was filled with smiles and excitement. Apparently sometimes the test results show change but the family sees no change. On reflection I think deep down I thought that would probably be us but I'm so excited it's not.

So with the test results discussed we moved on to discussing how Cameron's treatment would now change. Our home activities are to continue but we now present four cards to Cameron not three. And we introduce the broom handle. Yes, you read that right - broom handle.

The broom handle, like everything else, has a very specific purpose. The goal is to get Cameron to move the broom handle up and down in his left hand by moving his fingers. This will target a very specific area of his brain. Dr Beck handed Cameron the broom handle and he thought that was pretty cool. He held the handle up and down when directed but didn't move his fingers, only his arm. Dr Beck moved the handle through his hand for him so he could feel the sensation and said that would be of benefit so to start with that and within two weeks Cameron will be moving the handle by himself. I had a fleeting thought of - yeah right - and quickly dismissed it because at the moment anything seems possible.

Within 30 seconds the prediction of two weeks dropped to one week as Cameron's fingers started to move as Dr Beck moved the handle up and down between his fingers. I think my mouth may have dropped open. Mr A joked that maybe it would be half a week. At the moment I am living in so much shock that I am not dismissing anything.

So, we were instructed to visit MMM's favourite shop - Bunnings - and buy a $4.00 broom handle for Cameron to let him practice for two minute intervals throughout the day at home.

Next we moved onto another new thing that to be completely honest - I can't remember the name of. I'm sure I'll get to learn the name but for now I'll call it the hand machine.

Dr Beck explained that the hand machine would send a current through Cameron's hand and this will accelerate what is happening in Cameron's brain. Apparently this is a big step in his progress. Dr Beck and Mr A seemed a bit excited about trying this with Cameron but warned that he may not be able to tolerate it. For a split second my brain said - I don't think he'll cope with this - and then I dismissed the thought because at the moment anything is possible.

They took Cameron's left hand and placed two sticky pads with cables attached to either side. (One on each side) . Mr A linked his hand up in exactly the same way to share the experience with Cameron. Dr Beck turned the machine on and slowly turned the current up. Cameron was intrigued but I thought he would pull the pads off because he won't leave a bandaid alone until it's off ten seconds after you've put it on.

I was wrong, he sat looking at his hand and made noises and smiles to let us know he could feel the current. Mr A was able to talk to Cameron about what he was feeling. Then Dr Beck showed Cameron a book and at first just turned the pages but then he asked Cameron to find colours or animals in the pictures. Cameron pointed at something each time he was asked and when he pointed at the right picture Dr Beck celebrated with Cameron very enthusiastically that he got it right.

This didn't go for long but both Dr Beck and Mr A were very pleased with how Cameron had gone and Cameron seemed very pleased with himself. So now each session at the institute Cameron will spend time on the hand machine as well as receive the rest of his treatment. I'm looking forward to Monday to see if the rest of his treatment will change or stay the same.

After all that excitement it was decided that Cameron's brain had probably experienced enough for one day so it was decided to not give him his usual treatment. Probably just as well because he was looking a little tired when we arrived at Bunnings to buy his broom handle.

My Little Angel asked if she could have a broom handle too because she needed to demonstrate for Cameron what he needed to do. Considering how patient she has been during many hours at the institute and the fact that a broom handle costs $3.70 we decided she could have one too. (It doesn't take much to keep my children happy) So we then walked through Bunnings with me reminding my children not to swing their broom handles and to look out for other people. Miraculously we made it out without injuring anybody.

So there you have it, the results of Cameron's third QEEG and basically he is doing really, really well. I don't think anybody expected him to progress at this pace. His world is opening up and he seems to be able to finally start progressing developmentally. I can't even begin to imagine what the acceleration from the hand machine is going to result in. I think I am now beyond my dreams. Hold on to your hats for the next installment.

Special Saturday - How do you and your family cope with holidays and the change of routine?



Holidays - I love holidays. I love the lack of routine and the change of pace. I love the sleeping in and the relaxed bedtime routine. I love spending time with my children and watching them relax and enjoy spending time with me. I love not having to go to school and the lack of homework.

Our lives are always so constrained with appointments and fitting in with other people's timetables and I think that is what I love most about holidays - even just a long weekend - we set our own timetable and only have to fit in with ourselves.

Admittedly we often have appointments during holidays but at least before and afterwards we control what we are doing.

Cameron likes school holidays, he loves being able to watch Playschool in the morning and sleep until he wants to wake up. He loves grazing over his food and not being rushed in the mornings. He loves time to do the things he loves and he loves having the time to watch Wiggles DVD's. He doesn't like the intense routine that our lives often follow for appointments. It also means we have the freedom to spend time with our family and friends and Cameron loves spending time with the people he adores and loves.

Holidays also give us the advantage of time when it comes to giving Cameron time to try and become independent. I have the time to sit back and let Cameron struggle to dress himself. When you have to be out the door you don't have time let him put his pants on backwards and then change them around or give him time to get lost inside his t-shirt before finally finding the head hole.

So in answer to the question I think you can guess - we cope very well with holidays and the change of routine, it's the going back to routine that we don't cope with very well.

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This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.

Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturday.org/home/

Thursday, 5 January 2012

He is Going to Communicate One Way or Another



This evening I was in my bedroom making the bed when my ears became aware of a sound in the lounge room. I didn't really pay too much attention at first and then eventually my brain stopped me and forced me to pay attention. I stopped and listened and then it dawned on me - Cameron was playing with a communication app on his ipad.

I popped my head around the corner in disbelief and there he was investigating a communication app. Unbelievable.

It took me a bit to convince him to hand over his ipad but when he finally did I downloaded the communication app I had purchased a few days ago. I then sat with him and we went through the word list. I chose words he would recognize like car and cat and played them to him, showing him the picture as well and with a huge grin he mimicked most of the words along with the app.

He pronounced the words in his own way but I knew what he was saying and he knew what he was saying and we were both grinning. We scrolled through the whole list and then I went into another communication app I had found on the same day and set that up with words he would recognize and he thought that was wonderful also.

I'll let him play with the apps as they are for a while and not stress him to use the apps purposefully because I don't want to stress him or turn him off. He has rejected therapy in the past because he got sick of it and he was put under too  much pressure. I find it's best to follow Cameron's lead.

I was sitting with him afterwards, with his head cradled in my lap, and I asked him how he is feeling. I know I am starting to feel like I'm not living in reality because he is changing so fast. I can't even believe I was trying to have a conversation about his feelings with him but I was. I asked him if he always knew all these things and it was nice to get them out or was he learning them now and after I repeated myself he smiled at me when I got to - learning them now. He is loving these changes, I can see the joy in his eyes.

Sunday, 1 January 2012

Special Saturday - 2011 Memories/2012 Resolutions



Well, 2011 has certainly been an interesting year for Cameron.

Cameron has stayed seizure free all year which is very exciting, Strangely it didn't mean a stress free year for My Marvellous Man and myself because there was a sense of suspense while waiting for the big one. Cameron's seizures have scarred us deeply.

At school this year Cameron went to work experience which was more of a social outing for Cameron than work experience.

The one student he had shared a classroom and at times desk with for seven years was moved to another classroom in 2011 - the good news is they will be back together again for 2012. It will be her last year at school so I am really pleased they get to share her final year together.They ignored each other for the first term of school, we think they both blamed the other for abandoning them.

2011 saw Cameron spend a lot of time at the Perth Dance Company while My Little Angel danced. Cameron settled in so much I could leave the room in the knowledge he was safe and happy. He made lots of new friends with the other parents  and I know he is going to disappointed in 2012 when he realizes some of them are no longer waiting for him at dancing.

2011 will always be remembered as the year we made our big new discovery - The Institute of Functional Neuroscience. This discovery has changed our lives. Cameron is now accessing new technology that is only four years old and we are able to see exactly what his brain is and isn't doing and why, He is receiving very specific therapy targeting specific areas of his brain and we are seeing changes and improvements. It is really exciting.

This brings us to 2012 and what the future holds. I can honestly say I have no idea. Cameron is changing so much that my brain is starting to imagine all kinds of things but at the same time I am still extremely cautious and protective of my emotions because I don't want to be devastated if I get too excited and then my dreams don't come true.

So what is my resolution for 2012 for Cameron? I think it is to let Cameron be Cameron. Let him develop at the rate he needs to develop with lots of support and love. Continue with The Institute of Functional Neuroscience and be open to everything it brings. If he starts to talk you may hear my screams of excitement from here but if he doesn't that is alright, Cameron is very good at letting me know how much he loves me and most of what he needs.

Some things don't change no matter what the date of the year is. I will always be grateful that Cameron is still with us and grateful for everything that he can do. I will continue to strive to give Cameron the best life we can offer him and help him to live the best life he can give himself.

I don't know what Cameron wants but I am pretty sure he just wants to be loved with a side dose of Wiggles, Playschool and lots of hugs.

I wonder how Cameron would sum up his year?

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This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.

Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturday.org/home/