Thursday, 25 October 2012

Cough, Cough, Echo, Splutter

One fine day in the middle of the night 2 dead men got up to.... cough their guts up!

When I say 2, I mean 1, and when I say 1, I mean Kyd!!

Bloody typical! 

It's half term as of tomorrow and guess what...... he has a chesty cough that sounds like a bigger echo than **enter rude comment here** coming from his chest area!

A chesty cough is that it? I hear you say....

A chesty cough to him means warning signs, alarm bells and sirens! Instant action needs to be taken.

A chesty cough leads to a chest infection....

Which leads to antibiotics....

It also leads to the rest of us getting ill.....

Which leads to weeks of issues and stupid problems....

Which leads to being housebound....

Which leads to us all climbing the walls....

Which leads to me needing a good strong drink....

Which is crap because I can't drink!

So to save my sanity it is best to nip this in the bud ASAP. There is only a few things that will work...

Medicines & Sleep...

and guess what we are running out of..... 


We have only one dose of Calpol left, an empty bottle of Nurofen and no Cough meds what so ever!!

I'm so well-organised this year!


Wish me luck!

Tuesday, 16 October 2012

Flu Jab Time.....

Duh duh duuuuuuuuh...

It comes around once a year, 

Not everyone gets it,

Most that do get it, dread it,

Most that don't get it, want it,

and ALL that do actually get it.... benefit from it!

Yep, that's it, you got it...
It's Flu Jab time!!!!

Kyd is a bug magnet! He gets everything within a mile radius, so each year we protect him by taking him along to the Flu Clinic at the Doctors and jabbing him in the arm. I get one too, as I am his carer so if I'm ill we are stuffed.... as we found out recently, with all that has gone on. 

So you'd think that the thought of a needle would mean tears and tantrums BUT NO this is Kyd and as you know he's bonkers.

He went bounding up the road from school, after telling everyone he was going to get an injection with a huge smile on his face.... The teachers looked absolutely confused as he went skipping off holding his arm. I just said 'injections are obviously a treat in his head' and they giggled. He ran into the doctors and babbled away about his arm and the needle. Then when he was called in, he had no time for chit chat, he rolled his sleeve up and said 'come on then' 'Ummmmmmm OK' said the nurse whilst looking at me puzzled. He watched her set the needle up and you could see the excitement in his face. She said 'sharp scratch' and he started laughing... Laughing!! WTF??? He's bonkers! Even grown men flinch at the thought of a needle let alone the actual moment it goes in! WHO LAUGHS AT THAT???? Honestly I have no idea when it comes to his mental state he's Hofficially a mentalist!

The nurse was amazed and said she even makes adults cry when it comes to these jabs and he laughed even more.

The thing is he has watched me have my bloods done constantly for months and he kept asking when his turn was. He had obviously been building up the excitement for this very moment.... absolute weirdo!

I can't complain really I prefer this to the mad tantrums some folk have, I'm just worried now as it's all over for this year and we now have no jabs for him to have, how is he going to cope?

Who needs Maccy D's when you have the flu jab ay??.... *weirdo face*

Monday, 15 October 2012

Seeing the world through your kids eyes

We see small things,
They see big things.

We see mess,
They see fun.

We see cute,
They see future embarrassment.

We see dangers lurking,
They see adventure.

We see complications,
They see a challenge.

We see a child with disabilities,
They simply see a child!

If only we could see what they see and live in a world where different is nothing to be scared of.

We adults seem to complicate things when we look at them. Sometimes we need to take a step back and realise that some things are quite simple really.

A disabled child is simply just a person, living their life, just like you and me. They like what they like, dislike what they want to dislike and they are as stubborn and as pushy and as sensitive to hurtful words as we are. They have a sense of humour, they have endless knowledge of things we will never understand which gives them more of an education than we will ever have (and in most cases they are more willing to learn).

Why do we see the difference before we see the similarities?

We all know children ask the questions we are too scared to ask and we panic and get embarrassed by what they say. More times than not the people asked are happier to answer them, than to have people just assume the answers and get it wrong.

To be asked a question and give a straight and honest answer, is to educate someone who is willing to learn.

I wrote that! Not bad for me ay?!  
This weekend we spent time with some amazing kids at an event in London. Kyd was on his own at this event, with no familiar faces other than mine. The kids were mixed between normal families to ones in the public eye and not one of them paid any attention to his speech problem or the fact that he has downs. They dragged him around and showed him the experiments and laughed and smiled as he beat them at the games. Some of these kids won't have come across Downs before but they didn't bat an eyelid as they didn't see the difference between him and them, they just saw a kid.

I sat back and took it all in as he played with the kids and laughed and joked. I just wanted to wrap them all up and keep them at that age. Keep them innocent, inquisitive and young. Keep them in the stage of life where ignorance is bliss and adult minds and the media haven't destroyed their open minds.

It's just a shame that they will one day own that panic that we do when it comes to seeing the differences in others rather than the similarities.

I hope that one day we all see things through the eyes of our innocent kids and we will learn to not judge on first sight.....

I'm not sure it will happen that quickly but we can all dream ay?!

Friday, 5 October 2012

Including Children With Down Syndrome in Mainstream Schools....

 Today on Twitter @Jigsawcare & @earlyyearscpd made me aware of an article in the Telegraph. As it is Down Syndrome Awareness month this month I thought I'd share my two pence worth about my experiences with mainstream schools.

Kyd is now 10, as most of you know he has Down Syndrome, he has been to 3 different mainstream primary schools, moving from each for very different reasons causing it's own problems. Finding a mainstream school suitable for your child's need is a difficult job to get right.

I had Kyd at 16 and when he started school I was only just 21. I didn't really research any schools as I didn't have to. Kyd was going to the school all my cousins went to. We had a steady flow of people at that school from 1991 onwards. In 2006 we still had 3 members of the family in the school, so he knew them, meaning he had back up in the 'getting to know people' aspect.

This proved to be a huge mistake!

It seemed just because we knew the school and that the school knew us, didn't mean that it was the best place for him. They knew from the age of 2 that I wanted him to go there proving plenty of time to prepare and understand more about teaching a child with DS. NO! They were non the wiser even after accepting him into the school they still didn't seem to prepare. Well put it this way... by the time we left in Year 2 Kyd had fallen behind and was now doing less than he did in nursery. He had a FULL statement of educational needs giving the school funding for a 1 on 1 teaching assistant and materials needed for his education. It seemed like other than the TA nothing was really put in place. I printed out bits myself for the staff to read through and use but god knows what happened to them. I was told over and over by a mum at the school not to send Kyd there, as her children had SEN and they were failing them so she was waiting on a place at a Special Needs School. This all of a sudden rung alarm bells in my head where the first time she said it I said 'it'll be different with Kyd they have different needs'.... I'm an Idiot!!

It turns out a lot was going on behind closed doors that I didn't know about. I won't go into it but it was horrible to hear. What I will say is that I was informed by an ex member of staff that Kyd's feelings had been hurt several times after toilet incidents in his nappy (due to a bowel condition) which had left teachers openly and loudly commenting on the smell. I don't know if they thought he was unable to hear or if he was unable to feel any upset by their comments through not understanding but he is not stupid of course he could. He got embarrassed like any other child would. He might not be able to speak but he is able to have feelings just like them. Shame on them. Often when I picked him up he was upset I had just assumed it was due to his accident but I think there's more to it now.

I spoke to the Headteacher who blamed the class teacher.... I spoke to the class teacher and she blamed the head..... This went on and on until I decided that this was unacceptable and decided to pull Kyd from that school and research the new school properly this time.

His second school was brilliant. The teachers really went all out. We had a few teething problems with the head and her understanding his medical needs but they soon understood. Sadly we had to move him after a few years as we had moved to a different area but the next school was even better!

George Palmer School, Reading have been the most accommodating of the schools. They've researched and prepared for his needs. Each of his teachers have learnt from the last and he hasn't had to worry about getting to know them as the teachers are all so integrated in the school. They have provided for each of his needs and made a full part of the school. His medical needs are accommodated for and they are fully understanding of all the needs he has outside of school. This is what all schools should be doing. This is what a Primary Education in the UK should be. This school put my faith back in the Mainstream Educational System.

The Children of all these schools have been amazing! They have all personally taken the time to get to know Kyd and we can't go down the street anywhere in Reading without at least 5 people saying 'Hiya'. These children are from every background and every culture that you can name and think of.

George Palmer school is at the heart of a well known area in which poverty is ripe, yet around the corner there is an area in which poverty certainly is not ripe. You can imagine the variety of families at this school and yet each of them have taken the time to get to know him. Some of the countries of which these families come from wouldn't necessarily come across Down Syndrome in their everyday life back home, so for them this is another learning curve for their new life here. Other parents have said that their children are constantly talking about Kyd and how funny he is and that he has taught not only the children but the parents about children with Down Syndrome and that they are no different to any other.

He gets into trouble, he laughs, he plays, he interacts, he works in groups, he does PE, he gets involved in football rivalry, he plays wrestling in the playground and gets into trouble alongside the other boys!

He is just a normal boy, doing normal things and enjoying life.

This is an extract from the article in the telegraph...
'But in my opinion, one of the most important reasons for encouraging inclusion is that a whole cohort of children will grow up knowing someone with a disability – there are 45 more children who will go out into the world having experienced learning with someone (usually) less able than themselves, and I hope it will teach them a little bit about tolerance.
It does have its downsides, though. Alexander is seven and, although he has been invited to birthday parties, he has not yet been invited home to play with anyone after school and, frankly, I’m not sure how we would cope if he were, though Alexander has one particular friend who has been to play at our house a couple of times.
So far, the only times we go to other children’s houses to play are to those families I know from before children, or people we met at baby groups, and it is still seen as normal for me to go along for a chat, too.
But what is going to happen when Alexander turns 10, or 12, or older? We all know how important it is to have friends with shared experiences, and the same applies to a child with Down’s syndrome. That is one of the main reasons why many parents opt to send their child to a special school when it comes to secondary education, so that they have more of an opportunity to make friends.
For the time being, I make sure that we spend quite a bit of time with other “DS” mums and their children, to give Alexander an opportunity to make friends, and it has the added bonus of giving me and my friends a chance to let off steam to others who really understand'
Katharine Horrocks is chairman of Down's Syndrome Oxford

I completely understand this worry although Kyd has an amazing outside of school life meaning at secondary school he can continue education in either a special needs school or a mainstream one and his social skills wouldn't be affected. He has friends in all shapes and sizes and of all ages. He has hobbies that involve him in several communities and he always has something going on. I have done this on purpose for many reasons but mainly so he has many learning aspects from across a wide range of people. We don't often get invited to birthdays either but Kyd isn't really that bothered by this as he's always got something going on which is obviously another bonus. I don't see this as a problem any more because he has such an amazing social life.

I don't have many friends my age with children that I see very often and this did used to bother me mainly out of loneliness but this is what social media is for now a days. I have a huge network of mums of all ages with children with downs online now (via Future of Downs) which puts me at ease with all the little things that crop up. Also our local support group (West Berkshire Down Syndrome Group) has been an ongoing support and there are many things that I can thank them for over the years. Other than that Kyd has a pretty normal life and is actually overly social and it's hard work keeping up!

In summary I completely agree with Katharine that Mainstream schools benefit ALL of the children involved BUT only when you pick the right one... obviously. I believe mainstream schooling provides the understanding of social skills from a much earlier age and that this is hugely important for our children. Special Needs schools have their benefits and sometimes they out weigh the mainstream ones but every case is different. Kyd has benefited from a mainstream education in Primary but as he is now in year 5 secondary school is calling and this brings with it huge decisions.

Mainstream or Special Needs Secondary Education????

We've decided a Special Needs school will be best for him at this stage as I think he'd get swallowed up by a mainstream secondary. His social life is, and will always be, hectic and so he has learnt as much as he needs to in that aspect from a mainstream education. It's time to focus on his educational needs and I think the Special Needs school will be able to focus more on this with specialists involved. He will then have had the best of both worlds and I think he will benefit from this for the rest of his life.

Schools are hard to pick and my advice from lessons learnt in the past.... Research, Visit and Talk to other parents with similar needs at the school. Also it might be worth asking if they've ever had any SEN kids at that school or if any of their teachers have any experience with DS.... often it is a big fat NO!

Sorry if I drivelled on a bit but it's a subject I have a lot of passion about yet find it difficult to express without patronising other parents decisions. Each child is different and each has their own needs meaning each decision is made differently... if you get what I mean.... and therefore each is neither right or wrong.

Anyway I'll shut up now...

Thursday, 4 October 2012

I'm going to Mumsnet Blogfest...

Right well as I was cruelly kept away from all the other blog conferences this year due to pregnancy and illness, I, Alice Baillie, have decided to brave the unknown and go to the Mumsnet Blogfest in November!! Get me!

OK so it's not that brave, I hear you say, but for a girl who a few weeks ago couldn't even walk THIS is like heaven. It's freedom! It's normality! It's..... got NO CHILDREN involved!!! Amazing.

My lovely sister has even agreed to put me up in the fabulous Hampstead that night too so I don't even have to get home! I'm not supposed to drink as I'm on Warfarin... but I intend to have a few 'nerve calmer' type drinks, which is technically medically needed for nerves, so surely it is classed as medication.... yeah I'm going with that!!

So for those of you who don't know me this is my meme input.... Come and say HI on the day if you see me! xx

Q: What’s your blog title/URL and how long have you been blogging?
A: I have been blogging as My Life, My Son, My Way since May 2011.

Q: Will Mumsnet Blogfest be your First blogging conference?
A: No, I went to Cybermummy last year but sadly due to pregnancy and a DVT I couldn't attend any this year... making this one special!

Q: Did you bag yourself a sponsor?
A: No but always open for offers... wink wink

Q: What are you most looking forward to about the conference?
A: Well a bit of freedom without the kids would be nice but also I like the idea of meeting new people and learning how to take my blog to the next level and what I'm doing right and wrong.

Q: What is your planed style for this event?
A:Jesus I've not even thought about it.... But I'm pretty sure the theme will be... Whatever fits!!

Q: What do u hope to walk away having gained from the conference?
A: A bit of a blogging boost, some new friends and contacts!... and maybe some sort of hazy glare which is alcohol fuelled would be good.

Q: What speakers are you most looking forward to listening to?
A: I've not made my mind up yet but I intend to research them a little until my mind is made up for me.

Q: What workshops will you be attending?
A: Again I haven't fully decided but I know the Social media & Getting published jump out the most at the moment.

Q: Will you be looking for after party drinks?
A:I'm staying at my sister's house in Hampstead so unless she decides we are going out... I'm IN!

Q: Are u worried about not knowing anyone or being confident and socialising on the day?
A:Yes! I've not spotted many people I know going yet... although I've not really looked too hard so it will no doubt turn out at least 1 person I've met before is going.... I hope! Please tweet me if you are reading this... *desperate tone to voice*

Q: What are you most likely to be found doing whilst attending Blogfest 2012?
A: standing awkwardly in a corner until someone gives me a drink... after that god knows I become a little sociable so more than likely I'll be bending a few people's ears off.... not literally I'm not violent!

Q: How will you recognise me on the day?
A: I am 6ft and blonde... it is hard to miss me. I don't think I'll need a name badge but I may make one just because I think it's a good look. I have no idea what I am going to be wearing but it will include leggings as I can't get trousers over my one fat leg... other one is fine! OH WAIT this will be how you can spot me I'll be the one with the tree trunk left leg! Brilliant I knew that DVT would come in handy for something!!

My Twitter is @Baillie_MyLife add me if you haven't got me already.

Apologies for the random picture it is probably the only one I've had taken since having Rocky... I look rough 99.5% of the time so I hide.... I will make an effort for you lot though, I promise. I might even get dressed.....

Down Syndrome Awareness Month - October '12

D - Is for Doing exactly what we want to in life.
O - Is for Opening others eyes when we do.
W - Is for Wishing that people didn’t judge.
N - Is for Nothing can stop me even when they do.

S - Is for Saying exactly how we feel.
Y - Is for You listening with all your might.
N - Is for Nobody stopping and staring.
D - Is for Dreaming that the above was in sight.
R - Is for Reading up on Down Syndrome and knowing your stuff.
O - Is for Opening your eyes after doing the above.
M - Is for Me being me and you being you.
E - Is for EVERYONE, everywhere, sharing the love.


Wednesday, 3 October 2012

What a difference 3 months makes...

I can't believe he is 12 weeks already!! He's even in his 3-6 month clothes now. If the past 3 months had been normal I don't think I'd be this upset but as this is me we are talking about 'Normal' doesn't exist!

I'm having a woe is me moment, bare with me......

It's just not fair that all those early weeks were taken away from me because of some stupid mistake by the hospital. I currently want to scream louder than ever before but my throat feels like razor blades because it's winter and that's just what happens to us in this house. I just want to be healthy. I just want to be strong enough to live my life properly again. But normal doesn't exist to me so I will just have to man up take the pills and do what I can!

So as exciting as it is seeing my little Rocky grow... I wish I had just that little bit more time to take in the early weeks.

So here's to the next few months with me taking every tiny breath in and storing it in my memory... which I will soon forget because I am a forgetful soul so I'll just write them on here instead!

Tuesday, 2 October 2012

Snizzles, Snorts & Snot Rags

So Kyd turned 10 last week and as amazing as that is, his birthdays also have an alternative meaning....

The start of the season of Snizzles, Snorts and Snot Rags!!

Yep, every year, as soon as Kyd's birthday has past us, it's time to start stocking up on Calpol, Tissues and Comfort food. It sort of puts a downer on his birthdays as I know he has months of suffering ahead. It does make me want to go all out each year for his birthday celebrations, as this is generally the last time he gets to have fun outside or without worries of catching all sorts of nasties.

You see Kyd's immune system is almost absent. He tends to get/catch anything within a mile radius. This can be anything from a common cold every other week to a chest infection that lasts months. Oh and don't get me started on the virus' he receives so kindly from his friends at school either, as they can be horrendous.

I know it is normal for kids to get ill in winter but this year alone he had the whole of February off school due to illness. Once he gets his first cold...... that's it..... his immune system shuts down for winter. It's a sad old time for us all as once he gets it it's like dominoes!..... and I don't mean the Pizza company..... It goes Kyd, Me, Hoff.... and now we have Rocky to contend with too. Poorly babies are not fun when you are ill yourself, let alone with a poorly 10 year old and Mr Man Flu added into it. It means we have to be housebound quite often and are restricted with activities and visitors too.... To be honest there is no difference to the last year of my life there anyway due to being pregnant and then ill myself in many, many different ways!

Yay for me.... cue massive sigh of self pity!

Oh and get this, once winter is over, he gets his hayfever back. How lovely is that??.... but to be honest this is easily medicated each year, so I don't count it as an issue.

So here's to the sneezes that land in your hair, the sound of the snorts and blowing of noses and even the mound of Snot Rags I will soon be tripping over and finding in odd places, like in cups and shoes (don't ask). And here's to the empty bottles of Antibiotics, the stash of Calpol and the packets of kleenex in every bag, coat and orifice!

Welcome home winter!.... 
 I would say it's lovely to see you but that'd be a lie and I was always told not to do that so I'll leave you with SOD OFF!