The letter 'P'

Last week Tom's school did the letter 'P'.


P is for pancakes, popcorn and .......Pirate! He was so happy with himself. He was slightly taken aback when he got to school and the teachers were dressed up as pirates. He came home minus an eye patch and a telescope but he knows the letter 'P'.

Back to blogging and Tom's blue ears

I can't believe how long it has been since my last post. I have spent the last couple of weeks thinking that I must be a bad blogger because I don't make time to write. However...I've now decided that I am just adjusting to my new lifestyle which is less structured than my previous one and more Tom filled - which is great but I have less time at a pc.

Quick Nursery update
Tom makes me so proud, he is doing so well and is such a little character. He has been at his nursery school for about 4 weeks now and loves it. He still doesn't tell me what he does in much detail (or any detail actually) which I am now getting used to, our daily conversation goes like this - Me: "What did you do today" Tom: "I was at school" Me: "what did you do" Tom: "I played" Me:"What did you play with?" Tom: "Cars". Tom always plays with cars, thinks about cars, probably dreams about cars and imagines that he is playing with them when he isn't so what did he actually do at nursery?

Talking about ears
He is becoming more aware of his implants and talks about them, I have taken this cue to talk to him about them. For a while Jason and I have talked about how we will explain to him what happened to him and we have decided that we will just talk to him casually about it from a young age so that it's not a big deal. Last week we went to a soft play area which is a bit of cochlear implant nightmare in terms of avoiding static (static can wipe the programming on the external parts of the implant). There are ball pits and plastic slides everywhere. I asked him if he would take off one of his 'ears' and he said he didn't want to. I said ok but don't go down the slides. He really wanted to go down the slide but he wanted to go with me so I thought 'Ok, he's got to live a little and his friend Chloe is going down so I don't want him to be left out'. We went down the slide and I was scared - it's a massive tube, very steep and dark, hot and stinky - lovely. The worst part is that I got a big electric shock and wasn't even going down very fast. On the way home I talked to him about it and said that next time we go there he has to take his processors off if he goes down the slide. I tried to explain why in 3 year old speak "if you go down the slide with your ears on they could break them and we'd have to go to see Tracy (his audiologist) to fix them". I explained that he had very special ears and sometimes we need to take extra care to look after them. He said that Joe (his friend) goes down the slide without ears, he thought about this and then said "Joe can't hear his mummy". I had to try and explain that Joe uses his different ears to hear and that he doesn't have the special ears that are blue (Tom's coils are blue) so can hear without blue ears. I went on to say that Tom has special blue ears because his other ears were damaged and broke when he was a baby. He was then given a new pair of blue ears to hear with. You have to understand that this is all new territory to me, I had (and still have) no idea what to say without permanently damaging him emotionally, and that by this point my heart was breaking and I wanted to go home, go to bed, hide under the duvet and cry. Tom was in the back of the car, he was looking out the window and squealed "mummy a lorry, it's red just like Mack (from the film cars), look it's big". Hopefully no damage done this time.

First day at nursery

I am sitting here twiddling my thumbs because I've just left Tom at Nursery school for the first time. He is used to be away from me at his childminder's but this seems like a much bigger step. He starts properly next Wednesday but they wanted him to come in for a session when it was quieter (before all the rest of new intake starts). We met his Special needs assistant, she will be there for his full 2 and a half hour session but focusing on him for the first half hour spending the rest of the time with another child with special needs. The first half hour is when they tell the children the plan for the afternoon so for Tom I feel that it could be a good arrangement. We don't want him to have a one to one set up because we want him to be independent, he does however struggle in noise so knowing the plan will help. But then maybe it would be better to have more than half an hour? I don't know I guess we need to see how he does.

Anyway in the meantime I just want to know how he has got on this afternoon, he was soooo excited about going I just hope the reality of nursery school has lived up to his expectations.

Excitement levels rising

Tom loves christmas. He keeps saying "we are getting ready for xmas", he has been waking up earlier than we'd like so I'm hoping that after December 25th he will go back to his long lies.

It's just as well he is so happy and excited as we haven't had the best week. I don't want to go into detail tonight but a combination of implant funding battles being lost and family members going through a terrible time are making things a bit hard. Thank goodness for Tom and his xmas spirit. I have to say that I have learnt a couple of mummy lessons on the xmas front.

First -Read the party invitation properly
We went to our first CICS Xmas party and it was fab. However we did get there a teeny bit late and were the last to arrive, when we walked into the room I noticed that all the other children were dressed up. There were fairies, policemen, santas etc... and then Tom dressed in normal clothes. I thought he would be too young to notice but he said to me "they are all dressed up". My heart sank - poor little chap is going to feel like the odd one out - anyway he didn't dwell on it. His comment was had the same tone as "it's raining today" and thankfully no further comment was made.

Second - hide the presents well
Tom has been asking for a garage and a mini for a few weeks now. His previous garage broke and was thrown away, he accepted this but when he realised that Santa brought presents he started hinting that he'd like a garage and a mini. I scoped out the garages on offer and bought him one that looks like it will last (he loves his cars). I hid it in our spare bedroom which is in the loft thinking that he never goes there. His friend Franky came over to play and they went exploring in the spare bedroom (a.k.a known as Dave's room, Dave is my brother who Tom adores). Tom came running downstairs and had the happiest look on his face "there's a garage up there, in Dave's room, Mummy come and look". Oh noooo, I looked at Frankie's mum in a panic, she advised that I say it's someone else's so I did but I couldn't think whose it might be. Tom's face dropped a bit and then he said "It's Dave's". Phew, so I have since told him that I posted it to Dave. He seems to have accepted all this.

Smart boy stupid parents

I know I'm biased but my son is very smart. He does however struggle with getting his stupid parents to understand simple things so has to find ways of explaining things to them. He often has to break down information into bite size pieces so that we are clear about his needs. Yesterday he had us in stitches when he did this. He has been testing his boundaries recently and getting him dressed can often be a battle. He finds a million and one things to do that are far more interesting than getting dressed, he is the king of distraction. It is tricky because at some points during getting dressed/undressed he doesn't have his implants on and so then communication can break down. I wonder if I let him get away with things that I wouldn't normally because of this. Anyway I ended up losing my patience realizing that I was being taken for a fool and so I put him on the naughty step. We have only just introduced the naughty step and usually the threat of a spell on the naughty step gets him to comply. Yesterday it didn't!! I put him on the step and went to talk to Jason who was working (trying to work) in his office.

We could hear Tom shouting and having a full on tantrum. Then he stopped and started saying "I want to get off the step" followed by more shouting...followed by silence then "I want to get off the step" (he could get off the step at any point but he is inherently a good boy so stays on it until we say he can get off). Then more silence whilst he realizes that his parents are clearly not understanding what he wants so how to explain it them? ..hmmm... then "I want to get my bottom off the step" ...silence..."I want to get my bottom off the step and walk it to the bathroom".."my bottom doesn't want to be on the step mummy"

What do you say to that? I had a good chat with him about why he was on the step then we got on with our day.

Needless to say this morning he got dressed without any problems.

Changes

Big change
This is my first week as a non working person and it's great. I feel as though a massive weight has been lifted off my shoulders and all this fuzzy stress noise has been taken out of my brain. I am still doing a few things for my EX work place but I get paid a daily rate and do it when it suits me.

I did have a few panicked moments late last week when I looked at our bank statements and thought how will we manage without my salary (not that it was that great but it was something!!). I think I am worried about the financial side of things because I feel that a lot of the care that we have been able to find for Tom since leaving hospital has been privately funded. His second ear..his speech therapy...his physio... Then I think about the long term and put things into perspective. Friends, family and the meningitis trust have been and continue to be very generous and help us fund 'Tom's recovery', so actually having more time with him is much more important right now. I think he loves the new pace of life. The big things I have noticed are that I have time to enjoy being with him and to turn his speech and physio therapy into games. Last night Tom started feeding me imaginary Green Eggs and Ham. It was so funny- he kept putting imaginary spiders in them. I also had time to get him to help me put things in cupboards which is part of his physio - reaching up at different heights and in different directions. Last week our time together was so rushed that I didn't have time to make a game out of tidying up or pretend eating.

We have some other big changed coming up -
Tom will start nursery in January. He has got a place at the local preschool attached to the school. It'll be two and half hours every morning which I'm sure he'll love. He has been going to a childminder since he was 11 months old but it's different in that he was often the only child there and it's in her home. It feels like a big step as he'll be completely mainstreamed. The school have made some adaptations for him in terms of putting in a door and carpeting an area to reduce noise. We are going on a couple of pre-visits with him and also going to a training session with our teacher of the deaf. I think it's a bit daunting for her because she usually does the training without the parents being there but we feel it's important that we input into it. We haven't really worked out what we'll say yet...any advice greatly appreciated but we are thinking in terms of practical issues such as how to put his hat on without his "ears" falling off.

***since originally posting this I have decided not to 'publicise' one of our changes so have deleted part of my post. Apologies to those of you who have commented on this 'event' as I have also had to delete your comments. Thanks for commenting though :) ***

Right I actually have a few hours to myself now...what to do?

Weekends and things

Firstly thanks to those of you who have read and commented on here, I didn't really expect anyone to. Now the pressure...people actually read what I write.

Our weekend
We have had a nice weekend and I'm starting to think Tom and I share common interests. I have evidence of this because he talks to me about it which is so cute. When I was pregnant and found out I was having a boy I didn't really think about the baby phase, I just thought about the cute toddler phase. Needless to say when he was born and was a baby I went into shock for a week or so. I hadn't really thought about what you do with a baby, then we got into the whole getting him to eat, sleep and burp thing and it was all fine. Anyway, now he does talk and it's lovely. I don't have hobbies as such but I like to go out to eat, go on holiday and go to the cinema and I think that Tom likes to do all these things too. Tom regularly says to me "can we go to a cafe and we will eat chips", a cafe for Tom can be a cafe, restaurant, fast food place or pub. So on Friday we went to Pizza Express for dinner and Tom ate olives, dough balls and garlic butter, A pizza (he did remove the mushroom because apparently they are yucky), strawberries and icecream, and mine and nanny's chocolate straws. Then we got into the car and he told me he was hungry so could he have some pomcorn (popcorn) so we went home and he ate some snackajacks!!

We took him to the cinema for the first time a couple of weeks ago and it was a big winner. We went to see Ratatouille which is a cartoon about a rat who becomes a chef in Paris. Tom loved the whole experience, the flip up chairs, the hotdog, the movie and the popcorn. When we drive past the cinema he asks if we can go there and eat pomporn. Pixar need to bring a new film out soon.

It's very handy that he can now tell us what he likes and sometimes embarrassing that he tells us and other people what he doesn't like.

Bilaterals
The fact that he can tell us all these things reinforces to me that we made the right decision when we decided to self fund his second implant after the NHS turned us down. Tom and I have made some new friends - a family who have a little boy who is about 3 weeks younger than Tom and is also profoundly deaf. He was born deaf due to CMV. His mum is an amazing mum to four boys. We met them because they emailed us asking about our appeal for funding for a second implant as they were now going through the same process. Their son has one CI but they feel that he would benefit from another one. They went before an appeal panel on Thursday and I got an email from them on Friday saying that they had been successful. This news is fantastic for them and their little boy. Their email said that it made them angry that we did not get the funding for Tom. Well if I am honest it makes me angry and sad too but that doesn't take away from the fact that I wanted them to get the funding because it will make their life much more straightforward than if they went down the private route. Had they been turned down it would have made me even angrier at the unfairness of the whole system.

So congratulations to them and their little soon to be bilateral man.