At the bottom of this post I have put links up to all my previous posts about him, so you can view what I have written about him and his 'wobbly eyes'.
To recap very briefly, W has nystagmus. He was born with it, and I was the first to pick up on there being something wrong with his eyes, as early as around two weeks of age.
A lot happened, and I had to fight, and eventually pay to have him diagnosed, as my local NHS stated they wouldn't offer him an appointment until he was at least nine months old (plus the TEN month waiting list after that).
Well, W has recently turned five years old (where does the time go?), and he has been wearing prescription glasses for around 14 months. The prescription glasses are for his severe short sightedness and not, as many believe, for his nystagmus.
Nystagmus cannot be corrected or helped by wearing glasses, so when someone wears them, it is for a different vision impairment.
These are his current glasses, and he loves them! The good old Gruffalo!
W started at kindergarten in January of 2014. He is still in the kindie class now, and will move to lower primary when he is around six years old. Technically in the UK here, he would have started at a primary school in September of 2014, but I didn't want him in a big class of 30-35 children, with three to four classes per year, where there is an over worked teacher that does more paper work than teaching, and where I felt he would not receive adequate care, let alone teaching.
In my area too, there is no provision for a specialist vision impairment school, and despite there being one just outside of our catchment, our local authority refused to send him there.
So again I took matters into my own hands, and instead of putting up with the poor offerings for schooling, I looked around for myself, at fee paying schools.
At that time my middle son was not progressing well at his primary school, and when the school informed parents that it was expanding again to accommodate even more children per class, I knew it was time to remove him, and at first home educate solely.
I then found a private school that had the ethos of education I am very passionate about - child centred learning, within small classes (maximum of 10 per class, and 60 throughout the whole school), with excellent teaching staff, and the focus of learning not derived from continual testing and reaching government targets.
My middle son excelled here, and as I became more involved, I could see my youngest would only attend here, and would bypass state schooling completely.
The school has been very involved in understanding about W and his eyes, and they are aware of helping him negotiate stairs, obstacles, a new layout in class, making text larger for him to see, and allowing him longer to look at things, as his eyes sweep over continually and take longer to 'see' what the image is.
W has to attend a twice yearly appointment with an ophthalmologist, who performs a routine eye exam to see if he requires stronger lenses for his glasses. This Dr is also a specialist in nystagmus, and therefore he has performed various other exams on his eyes, and recorded a lot of data about them.
As of our last appointment, the Dr has suggested that he doesn't think W's nystagmus is idiopathic (no reason) any more, and he believes it stems from a cause of another reason, one of which he thinks is a high possibility, is ocular albinism, (which does not cause skin or hair pigmentation loss).
There is still no cure, and despite there possibly being an actual reason for him having nystagmus, it still means he'll never be rid of his wobbly eyes or vision loss.
He and I have had some genetic tests taken, to see if there is a rare disorder that I may have passed down to him. I am still waiting for the genetic tests for J to come back as well, and that has been three years now! J's tests are part of a huge independent study, and because there was such a big interest and uptake of people wanting to join, they are taking a lot longer to test the samples sent to them.
As I have said before, I am fully aware that genetic tests will not mean we will find a cure for either boy, it is important for me to allow my children (not J for obvious reasons) to be forewarned and armed before they start a family. If there is a genetic disorder uncovered, the boys will be able to decide if they start a family, or if they adopt. I am trying to give them a choice over their future. O my middle son does not appear to have any disability, but it is important for me to allow him to know if he could be a carrier of a GD.
Another part of W's disability is that he has a speech delay.
One year ago his speech was still very poor, and he was unable to communicate clearly to people, but me being his mum, I knew what he was trying to say.
We had been to a speech therapist before, and were told that he was okay and to wait another year.
When he reached four years old, I was fed up of the NHS again not willing to offer him any help. So again we had to go down the private route, and I paid for a speech therapist.
In her initial assessment, she said he had oral motor delay, and that what he hears, somehow gets a little lost or confused, and what he then says doesn't come out properly. He thinks he's said it the way he's heard it.
We had intensive therapy, and only a few months after starting it, he was improving so rapidly, that the speech therapist said she didn't think he would have progressed as well as he did, after her first meeting with him. He surprised her with his will to succeed.
His speech is still faltering and he misses letters out of certain words, but he is a lot more aware of his own speech, and aware that he must listen to the end of words and hear if they are different - an example being the words 'too' and 'tool', 'sue and soup', 'loo' and 'loot' - the last letter sound he must listen for. We do little games where he has to perform a fun thing, such as hop or jump, only when he hears a word with a sound on the end. If it doesn't he must stay still. I do little bits of therapy with him at home, several times a week, as it's important to keep it up, and not rely on a one hour session per week with the therapist.
Recently I took him for a hearing test, as I wanted to rule out any hearing impediment being a hindrance to his speech, and sure enough the test came back that one ear cannot hear low tones very clearly. He also has glue ear, and after a repeat test in a few months time, he may have to have grommets fitted to help. His overall hearing is fine.
As for W himself, he is awesome. He is funny, clever, spirited, cheeky, loving, kind, thoughtful, expressive, and above all, perfect. He has lots of friends, and is very chatty to people, wanting to say hello and goodbye to the postman, bus driver, shop keeper....he loves life, playing games, having stories read, drawing, crafting, singing, and spreads joy and happiness with his smile and friendly nature. He wants to help others. He hugs you when you feel sad. He wants to make you happy again. It is only when people see his eyes moving involuntarily that they realise he has a disability. He looks 'normal' and behaves 'normally', with no behavioural issues or learning disability.
He wears his glasses with no complaint. He attends all his appointments with ease, and although the last eye drops were a bit of a drama, he allowed them to be re-done - the first nurse to administer them was not very friendly, and then was clumsy and spilt the drops so wasn't sure how much went in. His eyes were stinging and he refused to allow her to do any more - he was frightened and in pain. A second lady appeared, and her skill and chatter put him at ease, and he let her re do the drops.
Recently we took him and his middle brother to a bowling alley. We had taken them before, and W had always got bored and started acting up. This time, whilst it was his turn to bowl, and using one of these metal bowling stands for children,
(stock image of metal bowling stand)I realised something - When he lets go of the ball, and it rolls down this frame, he doesn't see where it goes, or what happens at the end of the lane. I was like,"duh, that's why he gets so bored "!! I felt so bad for him, and for putting him through it. We have tried so hard to not make an issue of his eyes, and to include him in everything. I should think a bit more it would seem.
W takes it all in his stride. He is my Super Boy, and I am so proud of him and his achievements and will to succeed.
Here are links to my other posts I have written about W and his eyes.
Nystagmus Update on my Toddler 24th March 2012
Nystagmus and the New Baby 13th March 2011
Nystagmus - My Third Child 14th May 2010
