Friday, December 25, 2009

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.

Friday, December 18, 2009

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.

Friday, December 11, 2009

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.


Monday, December 07, 2009

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.

Friday, November 27, 2009

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!

Monday, November 09, 2009


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.

Friday, November 06, 2009

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.

Monday, November 02, 2009

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?

Friday, October 30, 2009

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.

Thursday, October 29, 2009

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?

Sunday, October 25, 2009

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.

Wednesday, October 21, 2009

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!

Monday, October 19, 2009

Wednesday, October 14, 2009

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?

Saturday, October 10, 2009

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.

Tuesday, September 29, 2009


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.

Sunday, September 27, 2009

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?

Saturday, September 26, 2009

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.

Thursday, September 17, 2009

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.

Tuesday, September 08, 2009

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.

Wednesday, September 02, 2009

Tuesday, September 01, 2009

Back from Italy

Sorry I haven't blogged for a while. I've been in Italy with Papa for a couple of weeks. I'll upload some pictures soon. Spent last night with mommy and she let me sleep in her bed. I wanted to sleep with all my favourite things, so I took my football, High School Musical dvd cover, upsy daisy, elephant, winnie the pooh and tiger to sleep with me. There wasn't much room in the bed for mommy, but we managed ok.

Went to see my paediatrician today. She didn't do much, just asked how I was doing, listened to my heart & weighed me. She thinks I'm doing pretty well and only need to be seen again in a year, if necessary. :)

Friday, August 14, 2009

The colour blue

One colour at a time. The one I'm focusing on now is blue. Blue for the sky & blue for my eyes. It's also the colour of the inter Milan football shirt.

Tuesday, August 04, 2009

My new obsession

I'm officially a 'High School Musical' fan. I sing along to all the songs and dance too. I love it so much I even take the dvd cover to bed with me. It's also one of the first things I say when I wake up in the morning, because I dream about it. Aunty Kir bought it for me for my birthday, thanks Kir!

Saturday, July 18, 2009

Happy birthday to me !

I turned 4 today, but when you ask me how old I am I say 3, 8 or 9... never 4. I got lots of presents and even got a bike... but think it'll be some time before I learn how to ride it. I wish people wouldn't sing happy birthday to me, it freaks me out... find it too overwhelming. I didn't like it last year either. Thanks to everyone who came, I had lots of fun and loved having an audience when I was breakdancing.

Friday, July 17, 2009

Speech therapy

My therapist comes to see me at nursery school once a week for speech therapy. At the moment we are working on the “voicing” process using a therapy technique called “Metaphon”. This technique starts by teaching the concept of noisy and quiet. We have been talking about noisy and quiet animals, noisy and quiet sounds etc. I'll need to do this at home too. Some things I'll be doing...

Making noisy sounds (banging drums, clapping hands loudly, shaking maracas).

Making quiet sounds (rubbing hands together, softly hitting the drum, blowing air).

Talk about which animals are noisy (lions, elephants, dogs).

Talk about which animals are quiet (fish, snakes, spiders).

If I hear a noisy sound comment on it, and the same for quiet sounds.

The next step in this therapy is to start talking about noisy and quiet speech sounds.

Tuesday, July 14, 2009

My vision is perfect

I had thorough tests today and have been given the all-clear. They tested my vision first which is perfect. To test if I was colour blind they showed me pages in a book that showed images that were made up of lots of small coloured circles. I had to find a dog, a butterfly, an elephant, a flower, a rabbit etc. I got 8 out of 10 correct which means I'm not colour blind.

My visual perception will more than likely be a cognitive issue so will be working on that more and I'm sure I'll get the gist of it, with a little effort and support.

Tuesday, July 07, 2009

Speech assessment

I have a new speech therapist and she came to nursery to observe me. The good news is that there is no sign of a 'disorder', only 'delay'. It's just a matter of time before it comes together, I will be having speech therapy in blocks of around 6-8 weeks and should respond very well to this.

I am able to produce all the sounds expected in a child of my age. This shows that I don't have an articulation disorder (inability to say sounds).

I use some delayed phonological processes; therefore I have a mild phonological delay.

I have a good ability to combine sounds in different combinations.

I have a moderate reduction in speech intelligibility (how easy I am to understand). My speech intelligibility is impacted on by reduced speech precision, reduced voice volume, hypo-nasality and reduced intelligibility with increased length of utterance. I appear to have reduced breath control for speech.

Monday, July 06, 2009

Am I colour blind?

I'm being referred back to great ormond street opthalmology for an eye test. I struggle with colours and visual perception so need to find out if i'm colour blind or not. Papa is colour blind, so I could well be.

Saturday, July 04, 2009

Swimming with papa

HOT! We need to cool down so papa took me swimming after my hair cut.

Got the chop

Papa took me for a haircut, it's so hot now and my hair was too long. I like it, I feel so much cooler. What do you think?

Tuesday, June 23, 2009

Italy with papa

The best bit about going to Italy is flying in an aeroplane. When I see one in the sky I always want to fly in it. Anyway, on Friday morning we went out to the centre of Milan to buy books and papa bought some sunglasses. That afternoon I went to the park with papa, nonna and nonno and played football and frisbee and cooled myself down in the fountain.

On Saturday nonno and Elisa took me to the lido, had a swim and played with all the other toddlers. On Monday morning papa and I went for a walk on the navigli and met up with Lorenzo for an icecream. I like Lorenzo, have met him a few times before, hoping to see him in August when I go for my summer holiday.

I ate lots of good food, as usual, my favourite being nonno's home-made pesto pasta.

Friday, June 12, 2009

Challenging times ahead

My visual perception is very, very bad. I may also be colour blind and will need to be tested. Things will be tough for me at school but I'll do my best and will remember to focus on things I love to do, as well as things I can't. I know the school I'm going to uses the phonic system for reading and writing, so that's good. :)

Visual perception is the ability to recognise, interpret and organise visual images.

Pupils who have difficulties in this area may have:
* a poor sense of direction
* difficulties with organisational skills
* reverse words in both reading and spelling (eg. saw for was)
* difficulty understanding abstract maths concepts, paticularly in the areas of shape, space and measure
* problems with comparative language (eg. taller than, shorter than, longer than)
* difficulty completing jigsaw puzzles
* problems with copying from the board
* problems with interpreting and organising diagrams, charts, graphs, maps and other * visual methods of recording
* difficulties judging speed and distance
* difficulty with letter and number orientation
* difficulty with structuring and organising written work
* strengths in logic, verbal and non-verbal reasoning
* enjoyment in using multisensory strategies when learning
* a preference for a phonic approach to learning to read
* a preference to use audio methods of recording information.

Saturday, May 30, 2009

Prefer to see Lazytown on the telly

I went to watch Lazytown live today. No thanks. It was way too noisy and they were right there, alive in front of me. I just wanted to go home. Sportacus came on about 10 minutes into the show, was great to see him and I was very excited, but then the audience shouted too loudly and I just had to leave. Maybe I'll prefer it when I'm older. I did get some great Lazytown goodies though, activity book and a microphone that flashes which is great for my rock'n rolling.

Saturday, May 16, 2009

Made mummy & I lunch today

Pizza.. yummy!

Friday, May 15, 2009

Educational psychologist report

It arrived in the post today. My statementing process has started and I have a copy of the first report, supporting my need for extra help at school.

My strengths...

I am active and curious about the world around me and keen to engage with my surroundings. I am a sociable child and interact well with both adults and children. I am particularly interested in physical activities and really enjoy the opportunity to play outside. I respond very well to songs and am enthusiastic to learn the actions to them. I like story time and enjoy looking at picture books.

I don't have weaknesses so won't write anything for there, instead areas to focus on when I go to school are...

build on my expressive language and language comprehension skills

improve on my attention, waiting, listening skills in group settings, such as story time and develop my social interaction skills with peers

develop an acceptance of clear boundaries set by adults, and develop positive behaviour through redirection, and making choices

build on my gross and fine motor skills so I improve my pencil grip and manual dexterity and work on my visual perceptual skills so I can copy designs and letter formation and improve my drawing skills

develop self care skills, including dressing, undressing and using the toilet independently

access a broad and balanced curriculum, including the National Curriculum, in a mainstream school setting, so I can acquire early literacy skills, such as letter recognition and phonic skills, and develop an understanding of mathematical concepts.

So, all in all I've got quite a bit to learn but there's plenty of time for that. For now, I'm just going to enjoy being the little boy that I am.

Monday, May 11, 2009

More good news

I've been accepted into my first choice of school. It's very close to home and the staff are lovely. They wanted me to go there, even though I'll need extra support. Some heads are funny like that, they don't want to provide the extra help because of funding issues. The school is in a lovely, old building, only one class per year and the afternoon clubs are brilliant. I'll have the opportunity to play sport, learn any musical instrument I like... and even swing on a trapeze. They already have 5 statemented children there so they're pretty clued up already.

Friday, May 08, 2009

Good news

Went for my testes check up today. Both are still descended and I have to go back in a year. They're a little small but that doesn't matter. I'm relieved I won't need them doing again, I've had more than enough general anaesthetics. :)

Friday, May 01, 2009

Developmental assessment

This was done to prepare my statement for school, to give the local authority an idea of what i'll need support with. I'm doing better in verbal than non-verbal. I need to focus more on my shapes, colours, numbers and visual perception. Some questions were silly. There was a book open with pictures of 4 different houses, i was asked 'which one is the posh house?' The POSH house? I think my homes are pretty cool (I have 2!), but have never referred to either of them as 'posh', or small, or big for that matter. These assessments are good because I now know what to focus on more, but they're always to be taken with a pinch of salt.

Thursday, April 30, 2009


Papa went to nursery today to meet with the SENCO and the educational psychologist. I have new goals now but overall I'm doing very well.

My speech is coming along great, I have 'classes' every day for 15 mins where the focus is purely on language. I'm to make more animal sounds to encourage more words.

Time also to focus on toilet training. I'll be nappy free for an hour both at nursery and at home. I'm quite aware now so it should work out.

My concentration has improved a lot, I engage in all activities at nursery for over 10 minutes at a time. I love cooking and playdough the most. My fine motor skills need a little more work, I need to learn to draw a full circle and an 'L' for Luca. I love drawing and painting so don't think those targets will be too hard to meet.

I have my developmental assessment tomorrow, to prepare my statement for when I go to school... so watch this space!

Friday, April 03, 2009

Celebrating food, because I can

I started eating orally in October 2006. I've just had a meal so thought I'd celebrate food, it's still such a novelty. For the first 15 months of my life I didn't eat or drink. I had breast milk but never tasted it, it went straight to my tummy via my nose.. avoiding all taste buds. You wouldn't believe it if you saw me today. You wouldn't believe I was once tube fed. I love raw broccoli. I love tomatoes. I love chicken. I love weetabix. I love liver. I love pasta with cheese. I love spinach. I love lamb. I drink water and milk. I use a fork and feed myself, I drink from a cup. I love the texture of food and I love the taste. I'll try everything once and so far there's nothing I haven't tried twice. I love sucking on lemons. Thanks to

Wednesday, March 18, 2009

2nd teste descended today

Well, I'm back home now after not such a long day, but a very early rise. Papa fetched mummy and I from home and drove us to hospital. I didn't really know what was going on but I handled the preparation for surgery very well. The nurses didn't frighten me like they usually do at times. We went for a long walk to a room and the last thing I remember before waking up was drawing mummy and papa pictures, I was aware of a funny smell but It didn't bother me too much. I started getting tired and couldn't draw at all, I lost all strength.

Next thing I woke up in a strange room and my throat was very dry and I was so thirsty. Mummy and papa came and i sat on mummy's lap, but I was so disorientated I was trashing about a lot. I just didn't want to calm down, only managed to when we were back at the ward and eventually fell asleep for an hour and a half. When I woke up I was right as rain. I had some water to drink and mummy let me eat her lunch, it was yummy! After that I went for a wee in the toilet, I told mummy and papa how much I loved them and had a little walk around the ward. I was allowed to go home an hour later. I'm doing so fine and feeling great. Hopefully that'll be the last general anaesthetic for years to come.. touch wood.