All posts for the month September, 2012

The canvas that can’t be painted

Published September 24, 2012 by swanfreddie

When you have a baby it’s almost like being given a blank canvas, a canvas that needs to be painted & given some character, It needs time spent with it to allow you to turn it in to the picture you want it to be. This canvas can be turned into whatever you want, much like a new baby.
A baby needs your help to help grow & develop. You can mould their personality to an extend & teach them how to behave. For example Evie is a mini me. She likes nothing more than snuggling on the sofa with a dvd, a hot drink & bowl of chocolate. Shes quiet & polite & just a generally lovely little girl & i’d like to think alot of that is down to the way she has been brought up. Me & her dad have helped change her blank canvas into a brightly painted one, that’s not to say she hasn’t added her own splodges of paint along the way but alot of her is shaped by us.
I suppose it’s the way the world works. You have children & you enforce your rules & your ideas of normal on them. In our house Evie knows at 7pm its story time then bed. Its been this way since she was a few weeks old. She put up a good fight against sleeping as a baby but with perseverance she began to understand & a few months later she knew bedtime meant sleep. She knows if she gets toys out she puts them away & knows if she doesn’t eat her tea she won’t get any pudding. This isn’t to say she doesn’t try very hard to go against these rules! She has her own ideas, no eating tea & just having pudding being one of them but she is beginning to realise that there are rules that she must follow.
I’m sure nearly every house has their own set of rules, different to ours but their own, unique rules designed to suit their family.
Now when Freddie was born we got a blank canvas, only it wouldn’t let us paint a picture on it like we were able to do with Evie. Our paint just dripped off. You see, Freddie seems to have an umouldable personality and the rules we enforced on Evie we are unable to teach Freddie and he has a very different idea of what normal is to what the rest of the family do. It’s always been this way since he was a baby but now hes older it is becoming more obvious that Freddie has bought his own rules to our house. Last night, for example both Evie & Freddie went to bed at 7pm.  At 10.30pm I crept in Freddies room while he slept & administered his medication down his gastrostomoy tube, changed his nappy & put his hand splint on. This woke Freddie up. I didn’t speak to him as I wanted him to go back to sleep, I closed the door & left him in the hope he would just go back off. I then went to wake Evie up & take her to the toilet before getting in bed myself. Evie went straight back to sleep, as she has learnt that it’s night time and night time means sleep, Freddie however had his own rules that he decided to follow.
So from 10.30pm – 1.45am Freddie was awake. He cried, screamed, banged, kicked & generally just made as much noise as he could. I spent the whole time he was awake getting in and out of bed trying desperately to resettle him so I could get some sleep. Freddie was having none of it & it was becoming more and more clear that my rules of sleep time mean nothing to him & he was awake & that is how it is going to stay.
This isn’t a one off event. This happens frequently in our house. Not just with sleeping but due to Freddies lack of understanding hes unable to see what people want him to do. This is where mine & Freddies worlds collide slightly. I try and enforce my rules on him in the hope he will gain some understanding but in turn hes trying to enforce his rules on me. And I have to say hes winning! and i’m begging to think i’m fighting a losing battle. When Freddie cries at night time I have always tried to not get him up as I want him to learn that he must go back to sleep but I laid in bed last night listening to him cry & realised that this is where Freddies world has to win. He can’t understand my world and my expectations. No matter how hard I try his canvas just can’t be painted.

So this morning after 4.5 hrs sleep I went into Freddie room waving a white flag. You win Freddie. Night times will no longer be me getting up & down like a yoyo desperately trying to enforce my rule of sleep on you instead we will approach it differently. It will probably mean me sat freezing & half asleep at 1am while you have a play but anything is better than 3 hours of screaming. Freddie seemed happy enough with this & showed his appreciation by covering me in his morning wee! But even after a horrendous night you just can’t be mad at this face –


Developmental delays

Published September 3, 2012 by swanfreddie

At the beginning of last year we had our first appointment with a neurologist. I remember sitting in the room discussing Freddie & his development, or lack of, and being told that Freddie has what they call global developmental delay.
‘Global Developmental Delay (GDD) is the general term used to describe a condition that occurs during the developmental period of a child between birth and 18 years. It is usually defined by the child being diagnosed with having a lower intellectual functioning than what is perceived as ‘normal’. It is usually accompanied by having significant limitations in communication. It is said to affect about 1-3% of the population.’ (

The neurologist went on to tell us that at this hospital they categorise GDD into 3 categories mild, moderate & severe (I have since learnt there is a 4th – profound). Freddie was classed as being severe. It was a horrible feeling to hear Freddie was at the worse end of their scale. I went home & did the normal thing I do after hospital appointments & had a google of what was said(not advised!). I searched what severe global development delay meant. I still remember the horrible feeling I felt when I read this sentence –
‘A person with severe or profound mental retardation will need more intensive support and supervision his or her entire life. They may learn some activities of daily living. Some will require full-time care by an attendant.’ (Wikipedia)

Freddie was still quite young at the time & even though we knew Freddie was behind we still had very high hopes that he would go on to be a ‘normal’ average child once he had caught up with his milestones, but the above statement really made us question the future for Freddie.

Freddie is now 27 months. Development is slow, very slow. It can be very frustrating at times. Things that come so naturally to most children just doesn’t click with Freddie now matter how much encouragement is given.
I came across a picture today of Freddie. It was taken back in August last year. 13 months ago.
Hes sat at an activity toy that has lots of buttons & lights & spinny bits on it. The idea behind the toy is that it grows with your child, it starts of as a toy to be sat at & eventually becomes a little table to do drawing on. When this picture was taken Freddie was 14 months old & was just beginning to enjoy playing with toys. He would bat at the spinny toys & there was a red button that he was always drawn to.

Most children follow a pretty typical way of developing, described by one fellow swan blogger here as being like a game of tetris (Do have a read it makes alot of sense) Freddies sister Evie, still plays with toys from a year ago, infact she still plays with toys shes had for a few years but the difference with her is that she has changed how she plays. Building blocks are no longer just bashed together like they were at 10 months old or stacked into a tower like at 18 months, at 3 years old  they are now built into big, carefully constructed houses. One toy, that has been played with in so many different ways simply through Evie developing as a ‘normal’ average child would.

The thing with developmental delays is that ‘normal’ goes out of the window. I took a new picture of Freddie today. A picture with the same toy he sat at over a year ago. I would love to be able to say the toy has now been changed into the little table & hes sat colouring a picture at it. But as you can see hes not.
I’d love to say hes playing with it in a different way. But the way he plays is exactly the same as it was 13 months ago. He still only has the ability to spin the toy & still drawn to the red button. He struggles to press the button to make them make a noise & has no idea that the toy has different buttons that can be switched to allow the toy to make different sounds.

I find these pictures scary. It feels like the weeks and months go by so fast but the development doesn’t keep up. Freddie continues to fall further & further behind. 13 months without any development in a certain area is a huge worry.
That’s not to say he hasn’t developed at all over the past 13 months as he has learnt to sit up from lying down position which is brilliant, but it’s can be very terrifying to see how delayed your child actually is & to realise that the above statement about needing support & supervision his entire life looks likely to be true.