So now, on a Sunday night, lunch boxes prepped, clothes laid out for the morning, hair trimmed, nails cut, everyone fed and happy, I can sit down and write.
W, my youngest with Nystagmus, had his six monthly eye check up at the hospital, and he now has to wear glasses all the time (not for sleep obviously). His left eye is quite long sited but the right is fine.
They have started him on a lower lens as they find it better for the child to get accustomed to the glasses and the new perspective. We are going back in two months time for a check up on how he is fairing, and then another pair of glasses will be made with a stronger lens.
I have been astounded by his complete acceptance of the glasses. He had one wobble on the first day and one incident of being silly and hiding them, but he takes them off at bedtime and puts them on upon waking.
I have caught him just gazing at his surroundings in awe. He has exclaimed several times about the new things he is seeing. I find it equally amazing that a new dimension has opened up for him.
J is still loving his new school. Me however - there has been a rather upsetting incident with his teacher. I didn't warm to her right from the start, when she was rude about my surname (yes , I know stupid!), and she just doesn't seem to comprehend that she is a special needs teacher, in a special needs school, working with special needs children. The ludicrous part is that she expects J to be 'normal'. I am not going in to detail about the hurtful comment she made about J, but suffice to say, she is the first person to work with him that doesn't seem to like him.
I have blogged recently about the transport bus escort and her continual praising of him.
He was loved by staff and pupils at his old school.
He is popular with the children at his new school. Heck even the receptionist at the new school welled up when I took in J's Christmas card design for the competition to win the design being made into cards to sell for the school. She commented on how lovely he is, how much work it must have taken him to create the design etc. He brings joy to people, and I'm not just saying that because I'm his mum!
So I find it perplexing that this woman has such a dislike of him. By offending him (indirectly of course, as he doesn't understand) she has offended me, my mother (his Nana), his father. It really has cut deep.
Before all this, I had to notify the school about bruises on his arms. I could tell they were from being squeezed with hands, and fingertip type bruise patterns were plain to see.
I knew immediately that it was the girl I have spoken about before, the one that is a year above him, and for whom they reunited when he started at this school.
This used to happen at the old school and the staff would intervene there and encourage them to do something else.
So this time, I made a call to the school and gave the receptionist a brief synopsis about the situation and I was transferred to the Head Teacher. I mentioned my suspicions about the culprit, and that I had an inkling as to when this was happening (break times), and that I wasn't angry, as I understand. I just wanted them to be aware, intervene if needed, and know that it is not self injurious behavior or abuse from home.
So to have his teacher be so rude (unconnected to the bruising incident) hit me hard. I like to think I am a bubbly and smiley person, and am non judging of others.
I have also been inquiring about the genetic study J was accepted in to, two years ago. We were told it would take around a year for results, but I had heard nothing. Thankfully I was contacted by the local coordinator for our area, and have been informed the samples are now under testing. There was a huge backlog from the amount of people that entered the study.
This study is called the DDD Study and is based in Northampton, England.
We had the standard genetic tests completed on the NHS, and they test for around 1 million disorders.
The DDD Study is testing for around 10 million, and collating information on potentially newly discovered disorders.
I still maintain that any diagnosis does not change anything for us, it just means my other sons will have the choice of genetic counseling for when they decide to start their own family.
On a different note, there is a petition going that is for a man, Daniel White, who has learning difficulties, to be given his job back. The back story to it is, the council department he worked for was taken over, and out of the entire work force he was the only one made redundant.....
He has tended to the gardens in Collett Park, Shepton Mallet, for 27 years, with no sick days. He worked full time, on minimum wages.
His treatment has been disgusting, and all because he has learning difficulties. I suspect the person that wielded the axe had not met him, had not inquired about his work and skills, and so just saw Learning Difficulties, and decided he would have to go. I have read the excuses the new company have given, and they are weak. There are always ways round red tape, always. You just have to be willing to try.
The work Daniel has put in has not being acknowledged, and there has not been any humanity shown.
You can sign the petition here - Petition for Daniel White
Please sign it. Every single signature will make a difference.
