So, the plane flights were finally booked on separate days, however there wasn't anywhere to sleep, I racked up my phone bill trying to find a bed for the night. The hospital preferred accommodation, normally anywhere from $60-$90 for a night were being sold for $550-600 for the night, and trust me these are really basic rooms, who knew that a football could be worth all the trouble. Exhausted and angry, I started pleading with the Red Cross and received a call back from them as they had a cancellation.
So anyway, I was very proud going in and seeing my Specialist and some nurses that had helped me get to this point. I think they were happy to see a good thing come from a bad case. I saw Sue, my Psychologist, It took a moment for her to click as to my story and I thanked here so much. The Specialist was able to get me a script for 12months, which means I don't have to go back to them for a year.
We mustn't forget the most important person who has always been at my side through all of this and more, Justin has been there for me through some really harrowing times, when I have felt at my darkest, he has brunted and sympathised with me and told me a few ugly truths. I know that I am lucky to have him, no one would have stay for even a minute of what Justin has been through. Thank you.
On a lighter note.
I have my Jewelry at a place called "High Falls Farm" they are a Tropical Display Orchard and home to two lovely people, Lyn and Shorty, they hold tours, a restaurant and venue, I will put a link to their website, they were happy to have my jewelry on sale there and Justin was lucky enough to design their brochure and is at present designing their website. Justin has also been busy designing a Logo for Jamie's Fishing Charters and doing their advertising ready to be published in tourism magazines.
Do I sound proud of Justin, because I am damn, PROUD.
Over the past few months I have been putting the feelers out about putting together a Support Network for anyone Family, Relatives or Friends, of anyone with a challenged sibling. As you know I have Drew, with Aspergers and Brayden, who is just challenging from all angles. Through a friend of Drew's at school David, he has Autism, his mum has put me in touch with Disability Services Queensland. I was lucky enough to go to a Dinner with a few mums with children with Disabilities. Here I met Selina the Area Coordinator, I was a bit surprised that I hadn't been told about these people sooner. Anyway, I went to the dinner and had a great time (despite Justin being annoyed that he wasn't allowed to come, we have always gone everywhere together, he has been in my role for so long, it was very strange for him, and if I was told that he was going and I wasn't allowed I would have felt the same.)
So I met Selina and we have an appointment to see her soon, we spoke a bit about what they do and she told me that whilst they can help they don't think we will met the criteria for funded help. This is the same with Respite, because Drew is diagnosed a ASD, Aspergers, their is a criteria for help but, he doesn't fit the funded criteria. So you get people wanting to help, but they let you know that he just doesn't make the cut. This is a similar thing where I have Chronic Pancreatitis, Respite have made it clear that whilst they can help me they really shouldn't, and it is only through them getting funding from a few different places, and they have told me that this is the case with Drew getting help through Respite, Autism is covered but not the Aspergers strain. Aspergers is and Autism Spectrum Disorder.
With Myself suffering Chronic Pancreatitis and Drew with Aspergers, two totally separate illnesses, they amount to a big problem in the one family, nobody recognises this!
What The!!!
I have been looking for information to give to friends and family about, Aspergers. It is very hard to get people to understand, what Aspergers and Chronic Pancreatitis is. People are sick to death of me being Sick! They tell me to just get over it, Pull my finger out, get off my ass. And for Drew, they think there is nothing wrong with Drew and again, that I am over reacting and that he is just normal and that I am dramatising. With both Drew and myself their isn't a physical thing that they can see wrong. If I was in a bandage they would be only to eager to help, but eight and a half years later, I'm still here and people are still not believing.
So, here I am looking for any information that can be put together, to help people see what Aspergers is and that it isn't just a thing that they can see happen, rather it is a whole lot of things that aren't necessarily happening uniformly. It is the whole big picture and how they translate what they are seeing and hearing. They are very smart in certain areas, his reading and maths are of a high standard, yet the teacher gets very frustrated that he can't just draw a picture to go with a story he is writing. Drew says that he doesn't understand what she means. He hasn't seen these people, so how can he draw them, yet if you were to ask him to draw a boy, he could, no problems, yet the kids in the story, he hadn't thought whether or not they are a boy or girl. We went to the show in Mossman today, as soon as we walked through the gate, he saw a Jumpy Castle, it was made to look like a shark biting a boat. Drew was so excited, we kept trying to put off when we were going to do this so, finally we went to buy the tickets and they said that Drew was too big for it, Drew has just had his 8th Birthday. Drew was shattered, it was the only thing he really wanted to do, I was shattered for him, I went up to ask why, as there were people from Drew's class on there, they just said to bad. I was shattered and Angry. So went to try and calm him down with another jumpy pillow, we paid $5each for both the boys to go and as they got on, Brayden decided that it was too big for him, so $5 down the drain as it wasn't refundable or transferable.
So... we went home.
