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Showing posts from June, 2013

Loves & Hates

Recently I read a blog post from a fellow swan mummy and it was about the things she hates that is happening in her life at the moment...after reading it got me thinking a lot about it and how I had recently been feeling a lot of "hate" moments as well as "love" moments...it kept going round and round my head so I thought I might as well write a blog about it to get it out of my system!
First of all I'm going to start with the "hates" in my life at the moment...
* I hate that I'm no longer the same mummy to my older boys, that I play with them less than before due to Roo being so demanding and needing constant attention..
* I hate that I shout at them when Im stressed out and they dont listen to me...they are just being typical boys & I need to relax more instead of running around like a stressed headless chicken...
* I hate that Lucas felt upset last night due to Roo going in the bath with daddy and he feels Roo always gets to do things firs…

The Importance of Support

Support is important, we all will need support at some points in our lives whether short term or long term but if you are a parent of an undiagnosed child you need support 24/7. But often in the case of many undiagnosed children the parents are finding it hard to get the support their child desperately need & every spare moment they have instead of using it to have some time to themselves or to simply sit and have a cuppa they are on the phone, writing letters, going to appointments & having meetings to try and get the support their child needs...every day is a battle, everyday we have to fight for support, when the going gets tough, when we feel like giving it all up and hiding, this is where SWAN UK comes in. Instead of sinking into the depths of despair at the lack of support from professionals & feeling so isolated we can go on line and log onto SWAN UK.
SWAN UK support network is invaluable to us parents/carers of undiagnosed children as there we can ask for advice a…

The Torture of Waiting..

Waiting for a diagnosis is one of the most difficult things a person can experience, especially to a parent of an undiagnosed child...when waiting on test results especially of a serious nature is almost unbearable at times...but it seems to be a common factor in the life of a parent of an undiagnosed child - you are forever waiting for a final diagnosis as to what could be wrong with your child but while waiting for that final diagnosis that may never come you have the waiting of the many different test results your child undergoes...You are continually counting down the months, weeks, days & hours till the next appointment where you hope to get the test results or you are watching for the postman every single day wondering if they have that all important letter that you are desperately waiting on, every time you see the letters on your doormat you are looking for the all too familiar hospital letter hoping that you will finally answers but secretly dreading reading it at the sa…

Overwhelmed by a tidal of emotions..

Its been a strange 2 weeks, suddenly out of no where this huge tidal wave of many different emotions has crashed into me sweeping me away in its path...I have felt like I am drowning sometimes, but I can still touch the bottom with my feet..just....
Where do I start? The first wave that hit me was a combination of jealousy, anger, sadness, & longing... Why...all because my husband has recently started a new job of being a childminder as he has had to leave two jobs due to his back condition so needs a job where he can rest when he needs to and childminding seemed a great idea... he was very lucky to get 2 girls who are sisters... they are lovely children so what is the problem you ask....well in the 3 wks since they have started I have not been prepared at all for being hit with those feelings... the eldest is only 6mths older than Roo & her sister is only 10mths old..seeing Roo alongside the elder girl has hit home how "different" he is, when I look at the elder gi…

Brewer belongs in the sewers

Sewers are places underground, Out of sight, out of mind The stench is overwhelming Slime running down the walls.
Murky water running through the tunnels, Full of waste from above, A breeding ground for diseases, and much more.
A manhole for access, that allows a little sunlight through, so you can see your way  but its mostly dark and dreary..
Its the perfect home for someone called Brewer, he is one of the most vile men the words that come out of his mouth are simply disgusting.
So off you go Brewer, Down into the sewers among the filth and waste as thats where you belong now


Im totally crap at writing poetry so excuse the above but thought I'd just give it a try! After reading an article ( click on article to read it) I could not believe the comments he came out, suggesting that disabled children should be put down...My son is disabled but he is human and deserves the same rights as the rest of us, if it means that he needs support from services provided by authorites then so …

Most recent stay in hospital

Last week the date finally came round for Roo 24hr video monitoring EEG so packed a bag for us both including toys & ipad to amuse him, snacks & drinks as hospital food isn't on our agenda! I was really nervous about it as the last EEG Roo struggled to tolerate the wires due to his sensory issues with his head and spent most of it screaming ....
We arrived to be shown to a room which had two beds and one was already occupied and instantly my anxiety levels went through the roof as did expect that as we were told that we would have a room to ourselves so I had bought my own baby monitor etc to alert me to Roo waking through the night and now knew this wasn't possible as monitor would pick up the other patient...did all the usual questions answering with the nurses etc and then we were left to wait till it was time for Roo to get wired up...It was then that I noticed the other mum sitting with her son on the next bed... when our eyes met she got up and came to me with a…

Planet Unknown

Happy Birthday to SWAN UK !!
Just thought I do a wee post today seeing that its SWAN UK second birthday....if you want to know all about it just click on the link above which will take you to its website and you can read all about it...
For me its a lot more personal....I see SWAN UK as a second family as its somewhere I can say "I belong here" . I have only been a part of this online family since the summer 2012 so not even a year & I only wish that I knew all about it when it first started then maybe I wouldn't have felt so alone, feeling that I was the only one living on Planet Unknown...
Finally I could speak to other parents who were in the same shoes as us, having a child who was undiagnosed, a place where we could rant about the lack of support from professionals, cry when we are down, share our worries about our little swans, ask & give advice about many things ranging from feeding issues to poo problems! We can basically talk about anything and know tha…

Living in a bubble that pops occasionally

I live in a bubble world...the world can be a harsh place for children who have disabilities like my Roo... so I have created a bubble world where he is protected, shielded from the harsh realities...Living in our bubble world we can still see and hear everything that is going on in the world around us but I am able to deflect and bounce away issues that isn't worth breaking for.
I know living in a bubble world is not reality but it enables me to "forget" that nothing is the way its supposed to be...Lately that bubble has been stretching to its limits due to certain changes that have been happening over the past couple of weeks raising concerns - 
Roo shaking/twitching/tremors episodes have started to become a lot more apparent over the past month... before they were only relevant to his night time problems but now myself, Waz & the nursery staff have noticed several episodes where Roo will tremor, be more shaky/twitchy than normal...his last EEG showed no epileptic …

The 1st UCAD..

I felt the need to write on here after seeing so much support on facebook...
Today was UCAD and the aim of it was to raise as much awareness as possible to the world out there that not all children have a diagnosis and have a long battle to get one or may never ever get one...So many people held events throughout the UK to celebrate this day & I only wish I lived near to some of them to join in the celebrations and actually meet some fab SWAN friends face to face..but not yet...hopefully sometime in the future meetings...
We had a quiet day, just my family & I... we decided to take the boys to the beach as it was actually sunny for a change & knowing Reuben loves the sand & water we thought it would be a perfect day for it... we popped to Superdrug first and bought blue & pink colour spray for our hair! ( which is very painful to brush out at the end of the day!! ) Once we were wearing our colours we set off for the beach...Got lots of smiles at first in the car p…

UCAD - About ourselves..

I'm going to explain a little more about what life is like having an undiagnosed child....
To outsiders our lives may look fine and dandy on the outside but in reality our lives is totally different than you expect...We are often told that we always have a smile on our faces which is true as that is just the way we are... we try to keep upbeat about life in general...behind close doors life can be hard....having an undiagnosed child means we have no idea what to expect or happen in the future...will he get worse or will he improve? No one knows, no one can give us the answers we seek...We cant have our house all nice with picture frames, ornaments or objects on surfaces as everything has to be kept out of reach from Roo...pictures are hung on the walls..ornaments/objects/vases etc are all hidden away as Roo will destroy them, he doesn't understand right from wrong...Our surfaces on units etc often look very boring but we have gotten used to it now...drawers, cupboards need to…

Undiagnosed Children's Awareness Day

Over the next couple of days I will be make a couple of posts to help raise awareness about SWAN . So I apologise if you feel I'm bombarding you with this but its close to my heart and I feel its important to get as many people aware of what SWAN is all about and get us recognised instead of being shoved into a corner and ignored.
Before Roo entered our lives I had never heard of SWAN and if someone mentioned it to me I would not have a clue what it was all about... it was a different world to what I lived in...Along comes Roo and suddenly we were thrown into the unknown, wandering aimlessly during his first year, feeling so alone, thinking we were the only ones who had a child that was undiagnosed, not knowing who to turn to for help as we didn't "belong" to any of the groups that were out there as they all required a diagnosis/reason to why your child was disabled.
Then one day I came across a newspaper article that showed a picture of loving parents holding their dau…

Changes for better or for worse..

We have seen some changes around here and its taking some time to get used to! As mentioned before Roo was prescribed melatonin - a medication given to children with sleep disorders/issues and after the first week of not much changes suddenly everything became so much easier... he would settle very quickly in his own bed with me sitting in the chair next to him and most nights would stay asleep till 5am which was a massive improvement from waking every hour or so... Once a week or so he would have a bad night despite the medication but it was bearable as I got to get a good sleep on all the other days and it was a lifesaver as I felt more energetic & refreshed than I have since Roo was born. 
6wks later after several emails back and forth with his consultant, she decided that he had to come off the melatonin as it wasn't making a difference to his jerking/twitching when asleep..some nights it was worse so we have taken him off them in the meantime until we know further what is …

Siblings have needs too...

Due to recent events I have been thinking a lot about the impact on my other children in having an sn brother...As many of us know many brothers and sisters argue with each other, have fights, say that they don't like each other and that is completely normal but what if it goes that wee bit further than normal and gets to the point where you think " whats changed to caused such extreme behaviour?"
I get jealous of the attention he gets...
I don't like him having to undergo so many medical tests..
He always wrecks my things...
Why do I always have to help him, why cant he be "normal" like my friend's brothers & sisters...
The above comments are what my children especially my eldest has told me... We have been have several issues with his behaviour recently and after talking to him it was brought to my attention that while we ( my husband & I ) were learning & trying to accept and adapt our lives to having a child with special needs we had not gi…

Two sides of Reuben..

Following the trend among my fellow SWANS who have been making maps/diagrams of their swan's so I though I would make one of Reuben that describes two different sides to him... I have just done a simple version on the computer as Im far too lazy to draw one! 


As you can see the list on the left is much longer than our list about him but those few words sum him up totally... he is the most happiest child I have ever known, always smiling and giggling with us whenever we tickle him...Sometimes when he been caught doing something like climbing onto the storage box so that he can reach the tv on the wall in our living room he will look at us with the most mischevious look in his eyes and breaks out in the most cheekest grin that you cant help but laugh instead of telling him off! Despite all his problems I wouldnt change him for the world....

Meetings, more referrals, more tests..

I woke up today nervous as I hate meetings esp ones where there are a few people grouped together as I always feel on "display" with them all watching me talk!! Also the added fact of having to concentrate so hard on lip reading our consultant who can talk pretty fast and we do have to ask her to repeat often what she says! Also learning to lip read people that you havent met before is challenging so I always come away from those kind of meetings with a big headache from the concentration...
Anyway we turned up and receptionist gave us a look as if to say " I think you have the wrong day, you stupid woman" look and I just glared back at her ...she then phoned some number just to check that we were supposed to be there!! Phone call finishes and she comes round and gives me the letter and says "yes you are right you are meant to be here so just wait here"!
Less than 2 mins later we are greeted by our consultant who has a big smile on her face, so much better …