Back, Excited and ready to GO.

by Mum Talks Autism on January 7, 2014

 

ImageI don’t even know where to begin to try and explain where I have been these last few months. To say that life has been overwhelming is to say the very least. There comes a time when one has to stop and listen to their own heart and mind and admit that they are not okay….

This was indeed where I found myself. Not okay.

So I had to stop for a moment and step back and look after me. Look after me and my family, as we slowly tried to put ourselves back together after what has been a turbulent time for us all.

The death of my darling sister in law impacted me greatly and I was saddened by her death more than I can explain with mere words. But I will try in the coming months – to share our journey, our loss and how we are all so much better people for having known her. I need to share this story more for my sake than anyone else’s if the truth is being told. It is a story that needs to be told and a beautiful human being that needs to always be remembered, as I know she will.

My darling boy B7 had a serious break to his right arm. He actually broke it in two places and required three operations which ended in a terrible infection, not unlike the infection that killed my darling son Robert ten years ago. I found ourselves in the same hospital that Robert was also in. To say that was a difficult and challenging time would be true. Brought back some horrific memories that I had managed to settle deep away for a time. Depression reared its ugly debilitating head yet again as the trauma of my beloved son’s death engulfed my life and my dreams yet again.

Then T5 had a mitochondrial facial bleed and that ended in a three hour surgery into his little head to stop the bleeding. T5 ended up not only in the same hospital but alongside the very ward that out Robert had been in when he passed. This was so very traumatic for our family let alone for a family and little one with classic autism. It was devastating to see him go through this and we had no way of making him understand that we were only trying to make him well.

He now won’t let any one touch his head for anything. His hair is so long that he is looking like no one has brushed it in a year. We will get there. Slowly as with everything else and one step at a time.

My seventy two year old mum had some health scares that required hundreds of kilometers in travel back and forth to tests and doctors. She is away at the moment having tests and seeing even more doctors to try and sort out what is going on there. Even more things to worry about.

On a happier note;

I attended Problogger 2013. Met the most amazing people and one in particular that has been a god send in my life. Spent some time away with the boys where I met some beautiful people. I would like to say it was a rejuvenating break but unfortunately with autism times three I can not really say that was the case but they are stories I will share with you in detail over the coming weeks and months.

I renovated my house. Not a great plan with autistic kids. Did I mention they don’t like change. Lets renovate the house Coralie, now that sounds like a grand plan. It wasn’t. On the upside the boys have a therapy/gym back again and we have been working hard on some much needed goals with them in a much more comfortable place for everyone involved.

I spent some time in Sydney with a dear friend.

I connected with some old friends and ended some other relationships that were not working in this life of crazy. Sometimes we have to do what is best for us and stop worrying about everyone else.

I was blessed with friends that understood that I could not be everything for everyone and that I had to step back to simply try to keep my head above water. That for a time it just had to be about me.

The pilot boy took over for a few weeks where I cried and slept and cried some more and slept some more. Where I closed the door and turned the phone off and was just in a place I needed to be. The place I needed to be to be able to be okay again. I think I am getting there a day at a time. I can not thank him enough for having that time off work and supporting the boys when I no longer had the strength too.

I rejuvenated my blog from just a blog to a full website that you now see with the help from my darling friend Shari over at Teenager Survival Coach. We found ourselves high fiving each other along the way as together we overcome anything that the evil technical internet threw at us. All jokes aside she was wonderfully professional and patient beyond words with me as we got to work. It is still a work in progress but I am so pleased with how it is looking. There are still a few pages that need to be finished and some blog posts in the wrong position but I could not wait to get back writing to you all. I would love to hear what you think.

I received some beautiful expressions of love and support from people that I only know behind a computer screen. I am so sorry I have not been able to be there for you but I am so very grateful that you have been there for me. In some of my darkest moments it was your kind words that pulled me through.

I had a cancer scare that left those close to me waiting with baited breath and me personally terrified as to how I was going to cope. As a family we did and everything is now back on track.

Finally my mentor and a dearly adored friend Klaus Bartosch was diagnosed with Acute Leukaemia. I was thrown for six to say the very least by his diagnoses and can not say how angry I was. Angry and confused. The day after Klaus was diagnosed he texted me and asked when I would be writing again because what I had to say was so important. He is diagnosed with Cancer and worries that I am not sharing my story. As I have said on so many occasions this man continues to amaze me.

Klaus was about to ride in his second of six Rides to Conquer Cancer as the Captain of the Vision Crusaders Team when he became ill. The team that he dreamed could be and was because of him and his passion to make a difference. A team that went on to ride in the six rides to conquer cancer across Australia and New Zealand and raised $250000 for cancer research. All with the spirit of their Captain on their backs pushing them along.

Klaus had extensive EXTENSIVE chemo therapy and with his darling wife Edith and their children by his side he is now in remission. Klaus once again taught me the biggest life lesson; NO EXCUSES. NEVER EVER.

I want to thank Klaus and the team at 1st Available yet again for believing in me during the past few months when I was lost. Believing in me and yet again helping me out of the darkness. For their understanding and grace as always. I want to also thank the people at Belkin and Closer Communications for their understanding and patience during this time. I have some wonderful posts coming up that I will share with you real soon.

Thanks to my beautiful family that allowed me to be and feel however I needed to feel. To my treasured friends for your love, support and silence when I needed it. To you all reading this that sent me cards, gifts, flowers, letters, emails and messages of support when I needed it the very most. They were and will forever be treasured.

So I am doing pretty great right now and I have just signed up with Kate and Zoey over at Operation Move to do just that. Get moving and jump into 2014 with all guns blazing. No new years resolutions or I am gonna do that. I am just doing it… After all there are no more excuses and I wouldn’t want it any other way.

What do you think of the revamped website and the new and improved Mum Talks Autism?

Remember…You’re Never Alone.

coralie sig

Mum Talks Autism is linking up with Jess over at Essentially Jess for IBOT.

 

Mum Talks Autism is proudly supported by:

Help us build the way for better access to healthcare for all Australians.

Help us build the way for better access to healthcare for all Australians.

 

{ 8 comments }

There is no place like home….

by Mum Talks Autism on July 14, 2013

 

I cannot say how pleased I am to finally be home. When I planned this holiday/work trip I planned it around the whole fact that I had to attend a four day conference in Brisbane. After my five day trip to Melbourne that I will share with you in the next few weeks I decided that it was so much more important to take the boys with me. Mistake…. HUGE MISTAKE.

My intention was sincere but the execution was not too successful.

On the positive note and there were actually some positive things about the trip…..

I did enjoy the fact that I found the most amazing place to holiday being Darlington Beach Holiday Park about thirty kilometres north of Coffs Harbour. I cannot say how fantastic this place is in just a few words and so I have dedicated several posts that will come up over the coming weeks to talk about this fantastic retreat and the amazingly compassionate and empathetic people that I found there. They went above and beyond anything anyone could ask for or expect from a holiday park and I cannot recommend them highly enough. Stay tuned for some great photos and a blog or five about our adventures at my new favourite place to spend a couple of days or even a week or two.

I celebrated my darling B6 becoming B7 as he had a birthday while we were away. Still B7 does not understand why he did get to celebrate a birthday with his friends and I think a late party might be on the cards. Having said that as many parties as B7 is invited to it is hard to get him to EVER actually get to the party so I hate to think of twenty kids at a party and B7 melting down and ordering everyone to leave NNNOOOOOWWWWWW. Autism it is loads of fun. Not…

The pilot boy took the boys to visit with his mum and stepdad for the first time in a very long time (that is another story all together) I was pleased that the boys actually enjoyed the visit but still I am thankful that she is no longer my mother in law and that I do not have to see her and appease her and her ignorance of what my life is like living with autism. I am going to shut up now purely out of respect for the Pilot Boy and for NOTHING else. I would love to share that story with you and may one day.

Back to the positive…………

Yeah sorry but after sitting here for a moment or ten that is about it.

I never got to attend the conference that I initially planned the whole trip around. The boys really didn’t want me to go and where losing their little minds at the mere thought of me leaving. My grand plan of being able to take the boys with me and still work did not work and it was a very expensive, tiring, exhausting and infuriating lesson to learn. I am trying so hard to be everything to everyone, (especially these boys of mine) and have failed dismally. I just don’t know what I am expected to do. I really don’t have a clue anymore to be honest.

We had to leave Queensland after a horrific experience with the pig they call a manager at the Treasure Island Holiday Park on the Gold Coast. That is a story I cannot wait to tell you in detail as I review the services (or should I say lack there of) at Treasure Island Holiday Park. You will not believe what happened or the deplorable response from not only the staff but also the actual manager of the park. Disgusting to say the very least and how that man can treat a child with autism this way and still hold his job is beyond me. Lets say that I am in the process of reporting not only what happened but also the response of management to the Queensland Health Department. You will not want to miss the review I write about this park and the way they treat not only a child in general but a special needs child also.

We travelled some ridiculous amount of kilometres. I do not know what I was thinking when I thought that I could travel this many kilometres and not have meltdowns times a thousand along the way. Seriously it is like I did not know these children at all. To add to the to and from kilometres that were necessary the pilot boy decided that he would like to visit the train museum at Dorrigo. He promised it was an hour drive and that we would be back within a few hours. Hmmmmm… it ended up being a trip searching for a train line that no longer exists and train stations that are now dilapidated and abandoned to a train museum that is surrounded by six foot barbed wired fence and he no longer lets people look at or touch his trains anymore. The local shop owner said that he had gone weird and doesn’t want anyone touching his trains anymore. If that was not enough the pilot boys two and a half hour trip ended up being a seven hour trip. Yes a seven hour trip to nowhere. The pilot boy had a ball but I had to deal with my darling boys losing their little minds. Poor darlings. Never again.

The ex mother in law is oblivious to the insult that she said to me some years ago about her grandchildren when they were diagnosed with autism – actually she does not even recall what she said but she now thinks that she can now contact me because pilot boy told her why I no longer spoke to her. Doesn’t work like that and I am hoping my silence will inspire her to leave me alone.

The boys stressed about everything and anything and even made up some things to stress about just in case god forbid I be given three seconds of peace. Autism is exhausting and unless you are walking in them shoes you really REALLY REALLY have no possible way of understanding what it is like to deal with. I watched all the ‘NORMAL’ families with their ‘NORMAL’ kids and I was more than a little envious of them. Envious of the fact that they have no idea how easy they have it and how they take that ‘EASY’ for granted. I don’t begrudge them I just some days wish I was them. Just some days. Not every day but some.

I missed my mum and my darling D20 but as much as I wanted to enjoy this trip I don’t know why I thought I could as my head and my heart was at home with my darling sister in law and my brother as she continues her heroic struggle as cancer completely engulfs her. I just wanted to be there.

There are so many stories to tell. There have been some wonderfully positive experiences and some not so that I will share with you over the coming weeks. As usual you can jump on the rollercoaster with me and come for the ride but at the end of today I am just so pleased to be home.

Dorothy seriously got it right when she said, ‘there is no place like home’. She so got it right – there really is no place like home and I am so glad to be here.

MTA signature

Mum Talks Autism is proudly supported by 1st Available.

 

{ 2 comments }

IMG_6634

I am often emailed or contacted from families with children or loved ones with autism and they ask me if I know of anywhere that they can go on a holiday. Somewhere that they will be accepted and that the fact that they have a child on the spectrum will not be seen as a inconvenience for everyone involved. My answer has been simple to date, ‘I did not know of any’.

You see any experience I had found whilst holidaying with two children and one adult with autism has been nothing short of exhausting to say the least. It usually consists of spending the first two days spent with T5 having a meltdown because he does not know who has had a shower in the shower before him or that the plates are not the right colour ending with the fact that the bed has not been made with the right feeling sheets let alone the wrong blanket that feels ‘scratchy’ so he wont have any blanket on thank you, regardless of the fact that it is five degrees outside. Travelling with a little mind (or in my case, THREE little minds) that have to have everything a certain way and going to a different motel with a different room every time does not make for a joyous experience for this family. I am sure there are many other families living out there with a child on the spectrum that are nodding their heads and agreeing with the above said statement.

A few months ago I had to travel for work and was away from the boys for the first time for more than a night. On my return it was horrific to say the least as I discovered that the boys had regressed not only with their words but even more so with their eating and sleeping. So I had a decision to make; do I give up my work, everything I am doing to build Mum Talks Autism Holistic Retreat and continue to try and make a difference for my family and other families living with autism or do I step back, give up work (or just work around my house so I don’t have to be away from the boys) or do I try and find an alternative.

I thought of taking them with me to my speaking engagements, conferences or whatever it was I was attending but than decided that was insane with everything that I have just explained above about my boys hatred of motels and change. So I came up with one last ditch plan to keep all of my balls that I am juggling up in the air; I brought a caravan.

Yes I brought a caravan and as I am writing this I am sitting here on my way to Coffs Harbour where I will spend a couple of nights before heading up to the Gold Coast to attend the Reed Gift Fair (hoping to find some products for the kids I am working with). I am hoping that this will solve all of the problems I have mentioned. The boys have their own beds, their own sheets and blankets, the plates are the right colour, the food is what they like to eat and I am hoping this is the answer to all our prayers.

I still get to work but am only away from the boys for a few hours of a day. We get to see a little bit more of this beautiful country and we are together. The most important thing out of all of them – the boys and I are there for each other.

I was fortunate enough that the Pilot Boy was planning on heading to the Gold Coast to visit his mother anyway so we were able to make our holidays sync and I have him there to be with the boys while I am working, they can visit his mum and step dad and I still get to have a bit of fun and a holiday with my darling little guys. I must add with out the support of the pilot boy I could not do this so I am publicly thanking him for being the best dad and X-husband any woman could ever ask for.

So finally I had another great idea. I thought I would take these travels of mine as an opportunity to do some reviews of the service and treatment that we come across on our way. I will tell it as it is and what I thought of the service offered to my family and so when families are wondering if there is a nice place they can go for a holiday with their special needs children all they have to do is click on the new category I am calling, ‘Holiday reviews for families with special needs and autism’ and they will have all the information they need including the cost, plenty of photos and our overall experience.

I look forward to sharing my journeys with you and I hope that you can find the information you are seeking so you too can have a much needed and enjoyable holiday also…. Autism and all.

Don’t Stop Believing,

coralie sig

Mum Talks Autism is proudly supported by 1st Available.

 

{ 4 comments }