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All posts for the month October, 2013

Perfect as he is

Published October 26, 2013 by swanfreddie

From quite a young age there were concerns over Freddie’s eyes. There were alot of questions over how much he could see so Freddie began having regular eye checks from 6 months old. He was found to be long sighted and have astigmatism and he also had an inturned eye. Freddie began wearing glasses when he was 16 months old to try and correct his eye problems. 2 years later he still wears glasses and his inturned eye has become worse. 

At his last eye examination his ophthalmologist was worried that his inturned eye was beginning to stop working so Freddie was only seeing through one eye which meant everything looked 2d to him rather than 3d. In order to help encourage Freddie’s eye to start working again we began patching Freddie’s good eye in the hope that his bad eye would switch back on. There were also concerns that Freddie had cortical vision impairment, which is a form of visual impairment that is caused by a brain problem rather than an eye problem. 

On Wednesday we went back to the ophthalmologist so they could look in more depth at Freddie’s sight. He said his eye is structurally ok but confirmed that it was likely Freddie’s bad eye had pretty much stopped working and confirmed that it did seem that he had cortical vision impairment. The decision was made to carry on patching Freddie’s good eye and keep using his glasses to try and strengthen his eyes. We also spoke about what to do about the way Freddie’s bad eye is inturned. The doctor said that there is an operation that can be done to straighten Freddie’s eye but the likelihood is that it will just eventually drift back to being inturned within a year. We were fine with this, we never had any plans to operate on Freddie for cosmetic reasons anyway, to us hes perfect as he is. But what the doctor said next shocked me. He told us he would be happy to operate for cosmetic reasons as we may find as Freddie’s grows older people may stop talking to him if he has an inturned eye!

REALLY?!

With all that we have been through, and continue to go through with him, the daily tasks to keep him healthy and happy we are now told that we should start thinking about how other people may view him? We are now supposed to consider putting a 3 year old through his 6th operation just incase other people won’t speak to him because of the way he looks!

I must admit though, lately it’s been something that’s been bothering me. Will perceptions of Freddie change as he grows up? As a baby and toddler (can I call him a toddler if hes never toddled?) hes always been very welcomed where ever we go. People have been very accepting of him. But as he grows up and becomes bigger will the acceptance continue? Will people still like the child who pulls hair, dribbles and spits his food everywhere in a few years time? Will people still think the child who is unable to feed themselves or use a toilet is cute? Will people still play and talk to the child who can’t talk back?  Will people still want to talk to the child with the inturned eye? 

The doctors comment has left me worrying over the future with Freddie. I always hoped as Freddie got older things would get easier for us but i’m now left wondering if it will only get harder. Will people accept Freddie as he grows physically into an older child while hes still remains mentally a baby. 

For the people who may decide that Freddie’s eye is so off putting that they can’t talk to him or his other problems bother them so much that they won’t interact with him, they should just know it’s their loss. If they can’t see past Freddie’s issues and see the smiley, happy, funny child who loves life then Freddie wouldn’t want to interact with you anyway. He only saves his smiles and laughs and cuddles for the best people who deserve them. 

So no doctor we will not be operating on our son for the sake of other people, we will not put him through the pain of his 6th operation purely for acceptance off people who don’t matter to us anyway. Anybody who loves or cares about Freddie will agree he’s perfect just the way he is. 

fred eye

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School Update

Published October 14, 2013 by swanfreddie

A quick update on how Freddie is doing at school –

Freddie has been going to school for 4 weeks now. He is doing 2 hours on Monday, Tuesday & Wednesday afternoons. Freddie’s school is quite a distance from our house so he gets picked up by a taxi and an escort and they take him to school and drop him home afterwards. 
Here is Freddie on his 1st day of school waiting to be collected by his taxi –20130916_115545
20130917_155018Freddie has been a bit of a monkey on the way to school so has been banned from sitting next to any other children in the taxi! When sat next to another little boy he spent the whole 30 minute journey to school pulling on the child’s clothes and trying to grab his hair.(typical Freddie) His poor escort had to spend the whole journey trying to get Freddie to keep his hands to himself. 

At school Freddie’s been very busy. He’s spent alot of time in the sensory room,(his favourite place) he’s been busy looking at his reflection in the mirrors and painting. His teacher wrote in his ‘home to school’ diary that rather than painting “Freddie especially liked throwing the brush across the table!”  
It would seem Freddie’s favorite thing to do though is explore. His teacher wrote that “Freddie seems to have travelled many miles around the classroom this afternoon! He should be tired” He definitely is tired when he comes home, this is what Freddie tends to look like after school –20130918_16185320130924_154106
Freddie has some goals that have been set by his school for him to work on. Freddie’s first goal is for him to learn to take turns with an adult. This is done by an adult rolling a ball with Freddie and Freddie learning to roll it back. Freddie has to do this 10 times in a row for him to meet his goal.
The second goal is for Freddie to choose between 2 items by reaching out and touching what one he wants. This is done by Freddie being shown 2 items and he has to touch his preferred item. Once Freddie does this consistently his goal will be met. 

Freddie seems to be really enjoying school and i’m really pleased at how quickly he has settled in. I wasn’t sure how i’d feel sending Freddie to a special needs school but it’s been amazing for him so far.