It has been a long time since my last update of my youngest son, W, who was born with nystagmus.
I first wrote about him here, and then made a few more updates here and finally here.
Today I felt I wanted to do another update, and when I checked the last entry update, it was exactly a year ago - what a coincidence!
W is now 3 years and 1 month old. He is a bundle of love and kisses, mixed with oceans of cheekiness.
There are slightly different milestones set out for children with visual impairments, and W is almost on target for all of them. His speech is the main issue he has.
He has complete understanding of speech, but because he can not focus clearly on a mouth when it is talking, he has never been able to observe mouth shapes for each letter and word. Babies spend a lot of time studying the mouths of the person holding them and talking to them. Because W couldn't do this, he has a lot more work to do. And he really does try. It is frustrating for him as sometimes I cannot understand what he is asking for. But as most parents will attest to, you get to understand their words, when to others it is just mumbled up.
He is putting three to four words together into a sentence, and makes sense, but again the enunciation is not perfect.
W loves to role play, and has his own mini vacuum cleaner. Lately he has wanted to use my vacuum cleaner to 'help' me, and what should take me 10 minutes to do, ends up thirty minutes later with W not letting me do it, and him not really vacuuming up much of anything.
The depth of perception is still a big issue for him. He is cautious when in new environments, and has trouble knowing if a painted line on a pavement is actually a step up or down. He cannot see this as a painted line only. When out and about he does demand independence, but he just cannot have all the freedom he wants, as he could have an accident. Examples being, in the playground he can't judge the distance of the child on the swing, or actually see the swing at all, and so he could walk into a child as they swing heavily towards him.
Another example is crossing the road. Obviously he is only 3, so is not allowed to cross a road on his own, even if he was fully sighted. The depth of perception affects the kerb. He can't judge the distance or the height of the kerb, and easily trips on them. He is fairly compliant with holding hands and following an adults lead though, so that helps immensely.
He was due to start at playgroup recently. He had a few visits there, and seemed happy. On his first official day, he went into absolute heartbreak. My mother went with him, as he adores her. The staff asked her to go into the next room, to show him he has to be at playgroup without a parent/carer. He became so upset and distressed that he made himself sick. The crying was so bad, it is burned into my mother's memory. He was shaking when I arrived, and would not allow either my mum or I to be too far from him.
After a long time of helping W become more confident with people outside of the family, I was not keen for him to backtrack.
I took the decision there and then to delay his start date until September. I am hoping by then he will be more mentally and emotionally ready for it.
I of course understand it is fairly common for children to be upset either when they begin nursery/playgroup, or a few weeks into it when realisation hits them that they are going it alone.
But this upset was far more than a few tears, and then happy placation with some paints and playdough. W's disability is an unknown quantity for me, and I have to feel I am doing my best for him and his wellbeing. I also feel that because he is not as emotionally developed as other children his age, he needs more time. And childhood is so brief, I do not find it a drag having him with me more, I cherish it.
I couldn't imagine what he would be like at this age, when I first discovered he had nystagmus, and I was filled with uncertainty and doubt. All the reading I did on nystagmus, and the videos on YouTube, helped me understand it from a person who has its opinion, but the real learning has been through W.
There is still a poor input of help and resources from my local authority and medical services.
As funding is so basic nowadays, thanks to huge budget cuts, W was even brushed off by the speech therapist at our initial consultation! He more than qualifies for her input, but she said to leave it longer before seeing her again - despite all other specialists stating he needs her help.
I also changed paediatricians, as the previous one and I just did not gel. As I have a lot of experience of special needs, I won't put up with half-hearted specialists, or the ones that talk a lot of good, but don't follow through with their promises. The new paediatrician is much better, more on the ball.
I am guessing he can see to around three metres now. Whether this is clear to him, or hazy and blurry I won't know until he can tell me. He has become interested in the t.v, but he finds it easier to watch programmes on an iPad, as he can hold it close to his face, and he is not having to stand right next to a big screen.
W is perfect. He loves to be in familiar company, and snuggles up to you. He asks for cuddles and kisses. He is kind and helpful. And of course he is a typical toddler. So he has tantrums when he doesn't get what he wants. He gets frustrated when he is not being understood by me. He is exhausting at times. But like any mum will say about their child,- he's mine and he's perfect just the way he is.
