6 Years

 

Howdy!!! I am such a big boy now. This year (2003) I am in year 1 and still in the main stream school. Mum went through such a battle at the beginning of this year and even said that threatening word "Media" to the principle until they realized Mummy wanted me in a school just like my big brother and wasn't going to have it any other way. The trick to getting your kid into main stream is being stubborn and polite at the same time. I have two teacher aides which work with me and take turns each day. Their names are Mrs Hooper and Mrs Webber and I think they are wonderful. Mum managed to push the school to having me in with an aide full-time, though by the end of term one I was getting very tired and was having many seizures. After seizures I get very "zonked out" and I am not able to concentrate. It seemed like I was wasting my time going to school as I just could not concentrate and learn anything. Just for this reason Mum was not prepared to have me put into a education support unit/centre as academically I was having no problem. The principle and Mummy spoke together to try and find a solution and they both agreed that if I have Wednesdays off school and had a midday sleep it would recuperate me ready for the next day back. This system worked and still today I have Wednesdays off. Now I am learning heaps and do not have too many seizures. My teacher, Mrs Johnston gave Mummy a shock not long ago when she told Mummy that I am ahead of my group in reading. I can spell my name and some other kids that are my friends and I am learning how to use a computer. I am such a clever boy and Mummy is very proud of me. My speech is coming on really well and people are able to understand me more now. I am able to go to the toilet on my own though I still wear pull-ups at night. Mummy tried night training me and I went two consecutive nights dry though during the day I had quite a few accidents. Mummy then worked out that I was able to hold on at night though by morning my muscles were so tired I couldn't hold on at day. So she decided to not worry about night training yet. My life has changed a lot over the last year as Mummy is seeing a wonderful man called Arthur and he also is a single parent of four. He has twins Matthew and Scott, (12) and the have a disability like me. It is called Hartnups and Autism. The other two are girls Helen (10) and Jacqueline (8) so now I have three brothers and two sisters. They are getting married next year and then we will have a family of 8. My best friend is called Connie and here is a picture of us. 

       

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I am now 6 and 1/2 and my doctor ( Orthopedic Surgeon ) just confirmed that I do not need to wear my splints anymore for the rest of my life. I had a party at school to celebrate and all my friends are so happy for me. The operation that I had when I was 4 was definitely successful and now I just have to wear inner soles!!!!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 8 Years

 

Hi everyone!! Well it has been a while since I have added to my journal. I am now 8 and a half and I could swear I am now 18 (I like to think so anyway). I am in year 3, still in a main stream school with my aides and I am doing brilliant. Over the last 18 months I have learned to read and write, and Mum is so proud of me. I even got an honour certificate from the principle for neat writing. I know I can write neater then Mum thats for sure. Mummy got married to that lovely man I mentioned to you before, Matthew and I now part of a family of 8. My two older twin brothers (14), have also got a disability though they can not read or write. I am becoming a bit of a trouble maker now as I want to do as I like, though Mummy keeps telling mo off when I do. I hear her say regularly that I am very stubborn and tenacious and no matter what anyone says I will do what I want. I still wear pullups at night time and Mum has tried to get me to have dry nights though the doctor says that my muscles are weak and thats why I have problems still. During the day I am dry and Mum is happy with that. I still have choking problems like I did as a baby though now a days it doesn't happen to often and most of the time I get in trouble for putting to much in my mouth at once which caused me to choke. Oh well will write again in the next year or so and now I got to get back to chasing those girls at school. Seeya. P.S. Dont I look just absolutely adorable!!!!!! I know it too!!!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

10 Years

 

Well Hi all!!! I am nearly 10 in April and I think I am the bees knees. I still love reading and writing and refuse to clean my room. I am in year 5 this year and learning running writing. Wow that's the last thing Mum ever saw me doing. In March I succeeded in completing my level one swimming certificate that involved me gliding, floating and picking things of the floor. I have been trying to complete that certificate for 5 years now. Mum and Grandma were so proud of me. In the last year my main progress is I now know how to swear thanks to my brother. I don't know why though Mum doesn't like it.  I still wear pull-ups at night and have trouble if I dont. The doctor has been keeping an eye on my Scoliosis and says its still only very mild. he said that Mum was wise giving me calcium tablets all my life for the osteoporosis as I would definitely have had it by now according to the results. Any way will speak again soon. By for now.

 

 

 

11 Years

 

Well here I am, 11 years old and I'm in year six at school. This last year has been a bit hectic for me. I had surgery earlier in April ( two days before my birthday at that). My right foot needed the second surgery which Mum was warned about when I was 4 and had my first one. The doctor reconstrusted my foot by cutting my heel bone and inserting a screw on my foot.  I had to stay in a wheelchair for a week and keep a plaster cast on my leg for 6 weeks. After that I had a special boot made to keep my foot in the same position.

 

 

 

11.5 Years

Well it is the end of the year and my school had its book awards. Mum and Dad were told to come along but they did not get told why. Mum, Dad, Grandma and an Auntry came to the school and waited to see what the surprise was. As the principle read out the book awards and came around to my class, Mum got anxious. As he called out the name Mum realized it wasnt me and thought that there was a misunderstanding and I wasnt getting anything. At the end of the assembley, the principle read out the notices then said there was one more thing. He said that the school decided they were going to start doing an additional award called the Principles Award. He called my name and Mum started crying. He said he thought he knew everything about teaching until he met me. He said that I had taught him how to teach when it comes to disabilities. By this time half of the ladies including my teachers and aides were crying. Mum said it was one of the proudest days of her life. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

12 Years

 

 

Well this is the last year of my primary school years. I am so excited about going to high school next year. Since my operation last year my foot has turned back out and Mum is getting a second opinion about my foot and what to do. I have definately started approaching pubity as I a getting grumpy and wont ever shut up. I have my first computer and love drawing on it. Mum and Dad bought my a couple of crazy crabs for my birthday and I keep getting bitten from them. Later this year I am going on my year 7 camp which I am looking forward to.

 

 

 

 

 

 

 

13 Years

 

I am now in High School and absolutely loving it. I am in the Education Support Centre, which is part of the main stream High School. I have many friends and still associate with my old school friends from primary school. My birthday has just gone by and Mum and Dad got a new laptop for me. I now am a computer wizz like my Mum. My speech is still very basic though I definately know how to tell my brother to get stuffed. Since leaving primary school I can now read to the level of a 8-10 year old and my independence would be improving. I am still incontinent at night and Mum just left it up to me to sort out when I am ready. Mum still has to tell me to clean my room and gets cross if I dont. I hope this update has helped many of you parents out there reading about me. Take care until next time.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

14 Years Old

 

Hi all.....well I seem to be growing up into a young man and becoming quite a cheeky one at that. I am able to read at the equivalent of a 10 year old and can right most words that I would use on my daily basis. Mum is not impressed as I am growing tally and catching up with her height. In the last few months due to Mum and Dad working, I now have a live in carer. Mum has an aupair program going and we meet lots  of people from all around the world. I get spoilt rotten as they all fall in love with me and buy me lots of icecreams.The photo below is of one called Kristin from Norway. Mum has nearly completed her Diploma in disabilities and will then be qualified to manage organisations for disabilities. I have a special pair of shoes made up for me which cost a furtune as they are hand made leather to fit over my splint. Doctors decided last year that I was better off having a splint for the next several years as every operation I have had has ended up being a waste of time. Within a year or two of each I grow and my foot grows back out. Recently mum got told by the endocrinologist that if I didnt take my calcium tablets that Mum put me on when I was 2 by her own choice, I would definately have osteoporosis. The doctor said Mum managed to stop that from happening and to keep up the tablets. My seizures have also stopped and its been 3 year since my last seizure. I still am on medication just to be safe though. I now get to go on lots of camps and excursions with an organisation and I love it...mind you so does mum as she gets a break from me. My big brother Matthew is flying over to Alabama from here, Australia in septmeber to go to NASA school camp.... because of me a company sponsored for him to go and think he has earned it looking after me....I am so jealous. But I cant complain. Mum, Dad and I are going to Sydney and Melbourne in November for the first ever SOFT (support Organisation for Trisomy) conference n Australia. That will be fun.. I will right back after the conference and put some photos up. Take care for now.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Well I have been to Sydney and I had a great time at the conference. I met lots of other families and kids that are the same as myself. I made friends with a lovely lad called Dylan and we are now good friends. I got to go to the Sydney Opera House and drove over the Sydney Harbour Bridge. After the conference we went up to the Blue Mountains and then trained it down to Melbourne to spend a week with my cousins. My cousin Wendy has this gorgeous dog which I spent lots of time playing with. His name is Terry and here is a photo of him and myself.

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Kristin and Christopher

SOFT Conference Sydney 2011

Aunty Coral, Christopher and Terry the dog