Time to wind down

I have my own voice now, am at school so it's only right this blog comes to an end. Yes, my mommy's been blogging for me. It's captured my progress from birth right through to primary school. My challenges, my successes and my wonderful nature.

Thanks to everyone who's read the blog and commented on it. Another blog will be starting soon, this time it will be written through mommy's eyes, please watch out for it because it will still be about me... and all things special needs.

Love x

Milo

Milo is our class mascot. You get to take him home for the weekend if you're well-behaved. I was a 'joy, helpful and affectionate' this week so I got to take Milo. I had to photograph what I did with him and record it in the special book.

Big school

It's now been nearly 2 weeks since I started big school. I didn't really know what to expect. It's not very different from nursery, the main difference is everyone wears the same clothes as me, on the first day I told my classmate that our jumpers matched. They've matched ever since. I haven't really made any real friends yet but hope to do that soon. There's a little girl with down's syndrome in my class who gave me a big hug today when I arrived, then signed 'hallo' to me in makaton, I'm not too familiar with makaton anymore.. but that doesn't matter. I think we'll be good friends. Oh! I've also had a haircut, I've had lice so the hair had to go.

Palate

I went to Great Ormond Street today for a palate check up. There were 8 people in the room to see me, but that didn't phase me at all. In fact, I had a ready-made audience so I put on a bit of a show and sang a Killers song. They seemed to enjoy it. As it turns out I have a submucous palate. I will need further tests to see if I'll benefit from surgery or not, hold thumbs I won't need it. One doctor looked in my ear and saw that my left eardrum isn't quite how it should be, will need further tests for that too but at least my hearing is ok - well it was at the last test. They all commented on how confident I am, so to top it off I said 'bye bye poo poo' to them all when I left.

Merry Christmas!

Today I woke up, turned the TV on and chilled out until mommy woke up. It didn't take her long and she showed me all the presents under the tree that Father Christmas bought. I don't quite get the whole Father Christmas thing, but I tried to understand. I got everything I asked for, and more. My favourite present is a guitar and microphone, I can really rock out now! I hope you all had a wonderful day with your families and a special hug to all those who have angels, I bet they had a wonderful party in the sky.

Leavers assembly

Today I got to sit on one of the special chairs covered in gold, because I'm leaving my nursery school next week, for good. I've been doing yoga every Thursday and I was given a certificate. I loved yoga and hope to continue it at big school. I was also presented with my year book, showing lots of activities I've done this year. Ben was doing facepainting and I asked to be batman. I'll miss all my friends at nursery, but am ready to make new ones at big school.

Dear Father Christmas

I've been told you're coming through our front door, because we don't have a chimney. I've hung my stocking near the kitchen door because you'll walk that way when you come in, I believe that's where you'll put all of my small presents. If you keep walking you'll come to our Christmas tree, that's where you can leave all my big presents. I'd like a high school musical dvd, hannah montana dvd, drum sticks, guitar hero and a Ben 10 watch. I'll leave a glass of milk out for you and a carrot for your reindeer.

Thanks

Big school

Today I went to my new primary school to have a look, Rob took me from nursery. I loved it! There were lots of activities, arts, books, a computer interactive board, pcs for kids with games and music. Until 11.30am we were free to do what we wanted then we all sat down and played a game. I hugged some of my new classmates and chatted to them, could barely contain my excitement.. there was so much to see and I had lots of fun exploring. Papa came to hang out with me too which was a nice surprise. I start in January and I can't wait!

We will see how I cope and if I'm struggling we will call an early review of my statement to get more funding, either way I just know I'm going to be very happy there.

Good news and bad news?

The good news is I've been discharged from physio. Apparently I'm doing so well they don't need to see me anymore. OK, I insist on being carried most of the time, all 17kgs of me.. but when mom asked if that was related to my hypotonia and they said no... well, I wanted to shout out! I have no excuses now... and guess I'll be walking more than usual :(

Ok, this is good and bad news. Apparently I won't need 1:1 support at school, I'm not complex enough? But the school I'm due to start at are worrying because they already have 3 kids with special needs in the Reception year. Not really my problem, because I was accepted into the school, so I belong there and will get all the support I deserve. I may need a bit more funding though so the CDT and mommy and papa are going to fight for that. Nothing's ever simple in my world.. all I want to do is get on with my life, these little obstacles will only make me stronger though.. so bring it on!

Adenoids?

I was referred to ENT for my 'enlarged adenoids'. My speech is a bit nasal so the speech therapist wanted to have them checked out. Well, as it turns out I have something up with my palate, not my adenoids! I'm being referred to a plastic surgeon at GOSH. I've been under various speech therapists since I was born, not sure why this wasn't noticed before but will try find out. Surely my palate is the first thing they should've checked? I'm no expert.. but surely? I don't really fancy more surgery so hopefully it won't come to that.

This time, three years ago

.. I was weaned off my feeding tube. I used to have 4 bolus feeds per day. I went to the Austrian clinic and never looked back. My development improved so much when I started eating. The best bit though? I got to taste and experience the textures of food. I eat everything, so much so that a lady from the council interviewed mommy to find out her secret(s). There are no secrets, I never ate before so I'm just making up for lost time. http://www.notube.at

I'm a pirate!

Papa and I went to India and Tara's birthday party. It fell on halloween so we had to dress up. I loved being a pirate and loved play fighting with my sword. Don't I look smart?

Pumpkin fun!

It's halloween this weekend but I'll be at papa's house, so mommy and I had our own little halloween and carved a pumpkin. Emma came over to help us. Mommy cut a hole in the top and we both scraped out all of the seeds and flesh. Loved it, so messy! Then we drew a face on the pumpkin and I watched her carve it, I helped remove the bits that she'd cut. She made a bit of a boo boo on the nose though, so I pulled the loose bit off so our pumpkin's nose and mouth was one big hole.. but it still looked scary, which is the main thing.

Flushed my poo down the loo

Still haven't quite got the hang of the whole toilet malarky. I was in the middle of doing a poo when papa quickly put me on the toilet. I finished it, then flushed the toilet and watched it vanish... I wonder where it goes?

Show me the puzzles!

Visual perception and cognitive are where I've struggled the most. I only have 3 puzzles, I'm not usually a fan so mom didn't buy too many of them. Today she suggested I try one, it was dead easy... so I did another, and another! At my recent developmental assessment I couldn't do them so I've really come on a lot since then. There was lots of celebrating going on and I have a sneaky feeling I'll be getting puzzles for Christmas.

New comment

I'm so sorry. Someone left me a comment not long ago, which I published. But now I can't find it and I think you were looking for information. Please comment on this post and I'll see what I can do to help. Thank you!

Aunty Elisa visits :)

Baby poo poo bum bum

There seems to be a common theme at nursery these days. We call eachother baby poo poo bum bum. When I'm waiting at the bus stop with mommy and I see someone, I say 'hallo poo poo'. Sometimes I like to say 'you're a baby'. People don't seem to mind, but mommy does?

Oh my God!

I'm not so sure what this means or where I picked it up from, but I know it's meant to be said when something outrageous happens, or something unexpected.

IEP

My toilet training (or lack of) was mostly discussed today. Nursery have been taking me to the toilet every hour, to sit there and hope that something happens. Well, I'm going entire days now without going to the toilet which is not very good or healthy. Goals are to try and increase my fluid intake during the day and not to take me to the toilet every hour, but to let me go on my own, if I want to. It's about me having some control over it. I don't like going to the toilet at home, so mabye this goal will change that.

My rough play is still an ongoing issue. Well, I'm not rough intentionally, I just love physical contact. I'm quite a big boy for my age so I tend to hurt people without realising. I am very sensitive though, if they are sad I will cuddle them. But if I see someone kneeling down outside, that is a green light for me to run and jump on them and tackle them. Some of my friends enjoy that, but not everyone does. I have to learn to respect people's space a little more.

Nursery will be in touch with my primary school to arrange a visit, nearer the transition time. The SENCO at my primary school will also be invited to my final IEP, this will also give her a chance to observe me.

My speech is coming along well. I've now got the hang of the colour blue, now I'm going to learn all about the colour red.

Picnic on the heath

Such a beautiful day today so we went to the heath for a picnic. Had lots of delicious food.. a roast chicken, salads, cheese, olives, bread. Mommy had just dished me up some chicken when a tearaway puppy came and put practically the entire chicken in it's mouth. Very nearly got away with it so had to go in the bin anyway. We should've just given it to another dog, someone may as well have enjoyed it if we couldn't?

Autumn fun day

Once a year nursery has a fun day for all the children in the local community. There's always a lot to do, bouncy castles, face painting (I would NEVER sit still for long enough so don't bother), beat the goalie, cakes, burgers and madness! Had fun, didn't stay in any one place for longer than a minute.

Statement for school

I start school in January 2010 and my statement is soon to be finalised. Everyone submitted their reports about what support they thought I'd need. Mommy wrote one, the CDT wrote one and nursery did too. Mommy and Papa met with the council to discuss the statement. He told them that he sees many statements and feels that I seem to be one of the few children that has improved so much and will continue to, which can only be a good thing. He summarised the report and this is the support I'll have on a weekly basis:

A language development programme which is drawn up with advice from the Language and Communication Team. I need a sctructured approach to communicating using a total communication approach, including Makaton, photos and pictures to support my understanding and expression as appropriate.

Support for the development of my early basic skills including literacy and numeracy. There should be adaptation of the curriculum to meet my specific learning needs. Tasks will need to be broken into small steps with the use of repetition, visual cues and multi-sensory learning to reinforce information.

Individual and small group work to develop my attention control. I need a teaching environment that provides a consistent and structured approach to learning, with the use of visual cues and timetables to support my understanding. There should be consideration of the environment from a sensory perspective, such as limiting the amount of noise to improve my ability to concentrate and offering regular movement breaks, in order to maximise my learning.

Regular opportunities for individual and small group work to develop my social skills. I need adult support for the development of my play skills and to guide my social skills.

Activities and exercises across the curriculum to further develop my self care, motor and co-ordination skills which incorporate the advice of the occupational therapist and physiotherapist as appropriate.

I did it!

I slept in my own bed at mummy's last night, for the first time. It's taken a little while to get used to the new rules, I've tried everything to stay in mummy's bed. I've said I want milk, have a sore finger, hurt my head... nothing worked though. But now that I'm in my own bed I feel very proud of myself and enjoyed self-soothing when I woke up through the night. It's very important for my self-awareness, after all I'm starting school in January so am preparing for that. I know mummy will let me into her bed every now and then, just not every night and all night, and that's ok.

Italy with papa