The information sheet was read and re read by me. Detailing where we were to go, at what time, and what to expect.
I focused on minor issues such as having to starve him for such a long time prior to the GA (general anesthetic). I spoke directly to the anesthetist who said I could reduce the time for starvation as he was solely breastfed and therefore milk passed through quicker in his tummy. This made me relax more, as I was a demand feeder and couldn't bear the thought of holding my baby to comfort him, all the while him crying for milk, smelling milk, but being denied it.
The day arrived and we set off early. The waiting room we had to sit in was already bustling with staff, children and parents. There was an atmosphere of tension between us parents as we pondered the upcoming procedures on our children and the feeling that each of us wanted to go down first.
The moment I had to hand my little baby over to the anesthetist (I was not allowed into the room at all) was surreal. It felt wrong. I was meant to hold him. I was told to leave the waiting room and go elsewhere and occupy myself, as the room was not for waiting in once your child had been taken off. So I wandered round the little shopping mall within the entrance of the hospital and then sat and had a drink in the Burger King outlet also within the hospital.
I made my way back when the bleeper they gave me went off.
I could hear him crying and was ushered in. He was screaming. I finally got him to latch on for a feed and he settled down back to sleep, and he stayed calm like this until our departure and journey home.
The results were ready within a few weeks and all was clear. We knew it would be as I trusted (and had prayed) we would not be given all bad news.
As he was (and still is) so young, it is hard to know what his sight will be like in the future.
I do know that his vision has increased as he only responded to light from around half a metre, which then increased to a metre.
When he began crawling he initially was quite tentative about moving about. His natural desire in built in his development was urging him to move and discover but his sight made him scared of what was beyond his field. A few weeks of encouragement and became a little whizz. Speeding around and discovering the joy of emptying cupboards. He found he could crawl up right on his knees and hold an object in each hand and one in his mouth.
Walking took it's time to develop too.
Again he was unsure as his view had now changed to being higher up and there was a whole new world up there.
Within the home he was confident. He learnt to use the stairs very quickly and was adept at going up and down quite safely.
As he had learnt the lay out of the house he never really experienced many knocks and bumps. He did have a few toddler accidents which I feel could have easily occurred despite his vision.
Out of the home however he was shy and clingy.
I always carried him in a papoose ( a baby sling wrap) which enabled him to be close to my face so he could see me and hear me and not be 'lost' in a pushchair with the noisy world whooshing around him.
As an example of his fear of the outside world, I could be standing in a shop queue waiting to be served, and the person behind me strikes up a conversation about some trivial event. W would thrust his face into my chest. He would occasionally peek side ways out, but would shoot back into hiding.
This made it difficult for assessments on him. By this time we had been assigned a paediatrician. A cold, sterile room, with a stranger talking in a very strong foreign accent was not conducive in eliciting much interaction from W. He didn't want to take the little coloured bricks from the paeds hand. He didn't want to look at her at all. He just sat on my lap, face buried into my chest, and crying when made to turn round.
I would tell the paed that the tests she wanted him to perform, he was able to do. He did them at home. He had no problem passing toys between hands. He had no problem grabbing a toy dangled in front of his face. But because he wouldn't 'perform' for her, she was sceptical.
She also focused way too much on bowel habits. Over the top in fact. We were not there for bowel problems and it annoyed me!
Her first letter which we were 'CC'd' in on stated he had constipation as his FIRST problem, not his vision loss! He didn't have constipation at all but she was rigid in her belief that an older baby/toddler should be going every day, despite a regular pattern of every other day (perfectly normal by all other opinions).
On our second appointment the same situation occurred. The paed then said she wanted W to be assessed by a specialist in children with vision loss as she had no experience - why was she assigned to us then?
This assessment was eventually carried out at our home, as the paed wanted it to be held in a different office room in another building, but I continued to protest that he would not 'perform' for anyone in these strange and scary environments. At home he would settle far quicker to a strange voice.
I actually contacted the specialist directly and spoke to him, explaining my plight, and he readily agreed that my home would be far better an idea - cut out the middle woman and we started to get somewhere!
The assessment was similar to most development check ups. W demonstrated he could follow direction and requests. He showed off his incredible physical ability of flying up and down the stairs.
The report sent to me afterwards was glowing for W's development, where he was above average for many skills, but below average for his speech compared to visually able children, but still within accepted norms for vision impaired children.
I like to think that my relaxed approach to W has helped him become so confident. I never followed him round trying to protect him continually as I felt it would give him a complex. I obviously played with him and played chase games, but I wasn't fussing and faffing that he would bang his head on everything. I suppose having another child with special needs enabled me to be more confident myself and it certainly made me more forthright with specialists, as I was used to their tactics and expectations.
When W was a young baby I went OTT with light up things and bold black and white patterns.
His crib was filled in all visual directions with these patterns and I fashioned a fairy light contraption that dangled above him. I was all too aware that early intervention was essential. Stimulating his eyes and their responses to his brain.
I never left him alone with these though as I worried about the what ifs.
I also began to sing aloud all day long.
I wanted W to always know where I was and by singing I was encouraging him to have fun and it was less boring than hearing me talk nonsense.
Toys were bought with the element of bold patterns and textures. W would need someone with him during play as if a toy rolled even slightly away he had problems locating it visually. He soon cottoned on to basis that if he swept his hands around he would be able to find the missing toy.
As he grew, his middle brother became integral in his playtime. O, his middle brother (aged 6), began to love W as he responded to him and actively wanted him to play with him. Simple tickle games and roll the ball became their bonding time. As W would respond to O's games with giggles and belly laughs, it encouraged O to continue playing with him.
O still does not really comprehend the full scale of W's eyes. He knows they move about "like this mummy" (he wiggles his own eyes to show me) and he knows he needs to help W, sometimes either getting him out of trouble (when he gets stuck) or by finding his missing toy, but the understanding that W's eye do limit him and always will is not comprehended, and to be honest I don't dwell on it or talk about it as W is his brother first and I don't see why O should have to take on so much, so young.
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