Christmas cards

There are some things that totally amaze me about Charlotte. Last night she sat down and wrote all her Christmas cards to her friends and really enjoyed it. It really filled me with pride watching her do it (Yet again sticking to large fingers up at the old t*sser optician type). Making sure she sealed each one and some of them got kisses.

I shouldn't be amazed but I am. She even on an award at school for her writing and for that I think she has Mari to thank for her patience and understanding. Sadly I don't have that quality although I do try. For me it is teaching her to catch and play ball.

Elves

Today was Charlotte's Christmas play. Rather than subject the kids to long production this usual involves very short scenes involving the kids in song and dance. My goodness but my daughter makes me laugh. There she was singing and dancing with the best of them. Very proud of her own performance. Even remembering to do the count in to one of the songs. You know the song plays then a pause and then bag in. She got it spot on. Very proud I am of her too, very very proud.

The eye's have it.

Yesterday was our (Me and the Big C's) regular trip up to the hospital to have Charlotte's six monthly eye check. This usually involves a student doctor trying to get Charlotte to identify different objects on a card at different sizes. Bit like an eye test but instead of letters they use objects like; Fish,Cup,Sock,Apple,Clock and Van. I guess for the students it is a challenge as they have to use a different mind set to get C to co-operate and not guess when it gets to small. These test were at first very difficult as a) She didn't know the objects and b) Didn't really want to do them. Thankfully that has got a lot easier.

So yesterday was just the standard check, which they will now start doing at the school. The other test is the glasses test which involves a more in depth test and putting drops in her eyes to dilute the pupil so they can check the eye.

The day appointment always ends with Daddy having to do the tests that Charlotte has just done. She as actually very good at administering the tests even getting the squint test spot on (Involves cover one of the patients eye and then uncovering).

School play Monday should be good

Things you have to get used too..

Here is my list of things you will have to get used too.

Starers - Yep, you will notice it a lot at first ,especially when walking around, but as you become more comfortable you tend not to notice as much. In fact now I hardly notice and only pick up on it once in a while. Nothing wrong with it I guess people are either curious, concerned or just having a look. Sometimes is just feels like "go on take picture it last longers" but then someone will say "Sorry I was starring it's just my daughter has child with downs syndrome".

"They are happy and loving" - Generally from people who don't quite know what to say. The question is are they?? In truth depends on the day. Charlotte can be very happy and loving but get her on a bad day and she is the Spawn of the red man (No not Santa the other one) himself (as I would add most children are). Thing is to remember people just don't want to say nothing so that is what comes to their mind.

Popular - Charlotte is waaaaaaaaaaay more popular then I am. There is hardly a day goes by when walking around someone will go "Hi Charlotte", or "Is that Charlotte, She used to go to my school". It is a thrill to know she is touching the lives of so many different people.

to mainstream or not

Probably the biggest decision we had to face in recent years and not an easy one to make.

Charlotte started off her school days in mainstream. Nursery, reception and the all the way up to year 4. In the main I think she did ok but the school had few issues. I think Charlotte was the first with what is considered Special needs and it took them a few goes to get the system right. To be honest her Mum dealt mostly with that side. I am little embarrassed about that. However she was doing all these education course and seemed to know what she was talking about.

I think some of the reason for sending her to mainstream is we were still struggling to come to terms with the fact that she is different. We fight so hard to pretend that it is going to be ok. "See she can go to mainstream". We persisted until it became clear that to "Include" her she was actually being "Excluded". Didn't help either that her headmaster was a f**kw*t and said that "In the event of a fire all those that could not get out on their own would be left for the fire service according to Health and Safety". IE if there was a fire Charlotte and others would be left. It is clear now that Charlotte hated going to that school. really really hated it.

There was a lot of discussion about should we move her. I was a little upset that she was going to be moved. Totally my fault for being ignorant about "Special Schools". However it was decided that Charlotte would go and have a tour with Me, Mari and Christine (Her 1 to 1 or LSA). I was dreading it. You see for every time I had to take her to school she would end up in flood of tears with me having to walk away while she cried. Heart wrenching I can tell you. So I was a little scared as this was going to be a new school, even if it was only a visit. Boy were we wrong.

Somehow she knew. Somehow this place calmed her. We pulled up in the car and before I had chance to battle with her to get her out the car, the seatbelt was off and she was ready to go. She happily walked with us to her class and Sat down with the other kids and took part in some lessons while Mari and I were shown around the school. My fears/ignorance were totally laid to rest and I have a new sense of enlightenment for what they can do. after the tour we returned Charlotte to her mainstream school where the horrible ritual of leaving a crying child continued.

She has been Addington now for a year and half and I can't describe the amazing transformation in her, Confident, independent and learning so much. No more whinging or moaning (well no more than any one having to to go to school.....or work). She loves it. I have no doubt that mainstream school helped her and her peers but Addington is where she belongs and is growing in herself.

Sickness

This something you have to get used to. I know kids get a lot of colds and stuff but Charlotte does get more than most. See she finds it hard to regulate her body temperature so often when it is very cold she feels hot and removes the lovely warm clothes she has on. When she was younger it did mean removing them all, but thankfully she has grown out of that.

The problem is we can't wrap her in cotton wool, so often we push through with plans when maybe we shouldn't have. This weekend for example, Charlotte has had a cough so we headed into town on Saturday. Which was OK because it was all inside but Sundays trip to the local supermarket was I think a step to far. She has now been off school for a week.

although she did love the trip to town as she and Mari went Girlie clothes shopping while I sat outside. She was very happy. Once she had shopped, Mari had to shop for clothes too which she helped with. On leaving the shop. Cahrlotte informed us that it was my turn so I now have two new work trousers and some socks....woo hoo

Sitting back the other day I noticed how much my Little girl has grown and become just and independent young one. I think the strange thing is how quickly it has happened. One day we are having to get up with her, she wont let let us lie in and wants us to be with her. The next she is getting up, making her own breakfast (including toast and Jam), entertaining herself.

In truth it hasn't been a hard job. Certain things have taken a while, but on the whole it has come down to not accepting certain things. The question we often find ourselves asking is "IF she didn't have down's syndrome would we accept that". The answer is of course no, Well I know I wouldn't. Obviously there is a line but it doesn't have to be a broad line. I have Mari a lot to thank for that. Sometimes I feel I was helping to much. It is often easier to do something than to watch someone struggle, or have the time to wait for them. The truth is at some point we have to let go (as long as they are not in danger). Milk can be cleaned up, Counters can be wiped down, the toast will still be there.

So Mari and I started giving Charlotte the freedom an Eleven year old should have. The results have been very encouraging. Like I said she pretty much takes care of herself in the morning. The next thing we are working on is Kitchen knives.

Tears of Joy

When I said that the only time I cried about (I think I used broke down) Charlotte was just after she was born. This is bit of lie because I have shed many a tear over her. fortunately most of the time they have been tears of joy.

I have had the opportunity to enjoy all her achievements in a way that I think other parents are not able. I remember the first time she grabbed for my hand. I choked up so badly. Then there were the milestones in physio. Rolling, Reaching, sitting up and then finally walking.

Holding back the tears as she swam her first length in the pool un-aided. read the words from a book. Performed in the chorus at her last school, only needing her friend Jackie to prompt her. Seeing her with her peers is something I can't describe. Kids who see her as Charlotte. Even now a joy is overwhelming as I write this. Not sure I would feel this emotional (And it is a good feeling) had things been different

No Thanks to :

I guess this would be the first rant (well not really a rant but a shout out to those who tried hard to pull me down)

Eye Doctor - Silly old tosser who did Charlotte's Eye correction. At the assessment he told us. In a matter of fact way that he was only doing the surgery for cosmetic reasons as she would never read anyway. Charlotte now reads at level 5 and is on of the best readers in her class. UP YOURS.

SQN LDR Marshall - While trying to impress a young lady officer told his infamous I want a dog so I can him syndrome. I will let you work the rest of the joke out. Needles to say he was a) Very nearly shot with a flare gun b) Asked never to return the tower...twat didn't even work there. UP YOURS.

Oh there are plenty more but most are ignorant arses who find it all very funny until something happens to them.

The truth is it is very easy to get angry and want to hit out at these people. I have not included the kids who have (I guess through no fault of there own picked on her) but the truth is it makes you no better. I am now getting very good at the emotion come back and making them feel very small.

And finally

It was a bitter sweet home coming for us. After eleven years I don’t really remember much about it. If there was anyone there to greet us. I know at some point we took Charlotte in to see the people at work. Charlotte's Mum became more withdrawn and I found myself looking more and more after her. She attend one or two of the physio meetings but after that it became my responsibility. She also attended the medical meetings but day to day it was down to me.

Around about four weeks after Charlotte's birth I was called into my bosses office and informed that I was in fact being promoted and posted but that I would have the choice of two local air bases. The money at this time was to good to turn down so after discussions it decided an Air base Wiltshire was the best solution. For the time being we were allowed to keep our house, as this prevented re-assising for a new authority.

Sadly I struggled to cope with the job, a very good and rewarding one for a rank that I was. However with a great many things on my mind I struggled and made many mistakes that affected me a lot. I was working NATO shifts (2 days,2 nights and 4 days off), which was great but I got handed Charlotte on my 4 days and very rarely saw her mum. I might be doing her a dis-service but that is how it felt. The upside to that is a got to spend a lot of time with her and formed a bond that is as strong today as it was back then.

I decided that I could not cope with home life and the new job and decided to request a preferential posting back to the air base I was at. (knowing the job and that I could the job meant I could concentrate on home life). You would think that this would have been easy bearing in mind my situation but it proved very stressful. You see the forces are great when everything is going positive and people are happy, but soon as something comes up that is out of the ordinary they are crap at dealing with it. After a very tough battle, where Charlotte's treatments, physiotherapy, speech etc were ignored, the reason I got the posting back to the Air base was because we only had one car. One f**king car.

So it was back to Odiham, which meant we got to keep the house we were in and therefore treatments could continue with people who knew Charlotte.

Guess in terms of my story this is good place to leave it for now apart from tying up some loose ends. I finally managed to snap Charlotte’s mum out of the depression by taking Charlotte away from here. It was enough for her to see what she would be missing. I left the RAF in 2000 to work in the interweb. Charlotte's Mum and I separated a few years after and finally divorced. I would like to stress that this was not caused by Charlotte. That is completely different kettle of fish and I may rant (or have ranted) about it before. I have since re-married amazing women who has taken Charlotte to heart. Helped largely by whom she is but also that her uncle has Down’s Syndrome. Charlotte and she have formed a loving bond and as her Farther I am very happy to see that.

I will now start posting current experiences with Charlotte and my family. I may dig further into the past if and when I feel I need to explain things further.

A bit of a shock and time to decide.

Following the rather confusing and frustrating diagnosis from Doctor Bosnia, we were moved to a lovely private room. Seems strange but I can’t remember an awful lot about the emotion of the time. I knew that Charlottes Mum was struggling, and who can blame her. On the other hand for me I discovered a strength I never thought I had. To explain that I would have to discuss aspects of my life that aren’t for this blog but to say that having been more less controlled in marriage up to that point I found I had to deal with a lot a of things. Most of all Charlotte.

I know I went back to Parent ex laws house and had a kip. At which point I think my parents had arrived. I could hear a lot of crying and discussion but managed to fall asleep. Then it was back to the hospital. I guess the conflict in Charlottes mum’s mind was what to do with her. I know that she was seriously considering adoption and leaving her at the hospital. I am not writing this to be spiteful but just being factual. My mistake was telling her that I would support her, knowing damn well that there was no way in hell I was leaving my daughter there. I was becoming a rather dab hand at this point at tube feeding my girl and changing the nappies. Various people came in to visit. All with the kind of sympathetic look on their faces. Difficult to know what say really. Of course the clichés came out “They are very loving”, “they are happy”, “You have been chosen because you are special people”. Can’t really blame them, I guess people look for the positives.

My own thoughts were more on the lines off. I have a blank book now. I don’t need know all the stats on when she will walk, talk, read etc. I knew she would but it would take a bit longer. I never immersed myself in the how’s and why’s of the condition. Still don’t to be honest. I know what I know and that is Charlotte is a little girl who, will be what she will be.

Guess the hardest part was telling people. Not because I was embarrassed of anything. It was hard because people have an expectation when you are having a baby. So of course as soon as they see you they want to congratulate you. Then you have to tell them, then you have to watch them trying to search for something to say. In the whole I think I did ok with this. First was my boss at work, to ask for more time off to deal with it. I also asked him to tell everyone as it was easier than me having to go around individually. I also asked not to be promoted or posted. I was in the RAF at the time and both were immanent. The one I did screw up was our neighbour. Having gone back to our house for the first time to collect a few more things. I walked past Charlotte’s room and lost it. Probably the first and only time. I had been supporting everyone else at that point so it was my turn to take a moment. Anyway I ran into the lady next door. Who of course bounded up with a cheerie. “Congratulations !! How was it?” To which I coldy replied “ Did anyone tell you She has downs syndrome”. That knocked the stuffing out of her and felt awefully bad about it. A few days later I did apologies with a large bunch of flowers and explained that I had not been in full control at that moment.

Mean while back in hospital things were much the same. Well after ten days I decided it was time to take Charlotte home.

The beginning

Like all good stories ours must start at the beginning. Not right in the beginning as that would be a whole different kettle of fish. Our story will start at the birth of one Charlotte Neve. Guess the first thing to point out is that before that day I knew nothing about downs syndrome apart from seeing the occasional person. The next thing to establish is that throughout the pregnancy there was no indication of what was to come.

I was awaken by Charlotte’s Mum at around 2am proclaiming that it was indeed time to go to the hospital. None of this waters breaking or contractions staring at 1hour apart nonsense. Straight in to main event of every 5 minutes and constant. Grabbing the bag and the car keys we headed out to the local hospital. Charlotte was born at 6am and 5 pounds and 8 oz. At that moment I was so excited but I did notice that she did not look like either of us. I put this aside by thinking that she has just been born and too be honest I had never seen a new born baby before. Taking the change I had bought I sought a pay phone (yes in those days not everyone had a mobile) and began ringing parents. I also remember thinking as she was born I will need to start saving for a wedding.

Back in the room the midwife kept popping in out looking at Charlotte, taking her aside to measure and weigh, which seemed reasonable. “Is she ok?” we said. “Yes, she has 10 fingers and toes” was the reply. Really should have been the first clue. I think by this time Charlotte’s mum’s parents had started to arrive.

Then it happened. Two hours after Charlotte was born we were told the news. I can’t remember the exact events. What I do know is we had some Doctor who could hardly speak English trying to tell us what was going. He was talking, the midwife was translating. We were stunned. It was a bit of a shambles really. Everyone talking trying to ask questions which he did not understand.

I looked at Charlotte and knew that I had to protect her. This was my daughter and nothing was going to hurt her. Nothing.

Hello

Sorry this will be the first post and to be honest not a very long one. I am actually just off to go and get Charlotte who is at the childminders. We are then off to do a bit of shopping which she loves to do, as long as we get Oranges, grapes and Coco pops.

I will post more as soon as I can