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.’ (http://www.specialeducationalneeds.co.uk)
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.