It's been a while since I posted here, and a fair bit has occurred, mostly frustrating, but I have had to keep my fighting spirit up, and for some of it, I have succeeded.
W's EHCP request was refused by our local SEN team. Their 'experts' (made up of teachers, head teachers, health care professionals, to name a few) decided that although they recognised W had 'recognised special needs', the information submitted by W's teacher was insufficient. These professionals made this decision without even meeting W. They made their choice not to carry out an EHCP within one of their weekly meetings, along with many other children's applications.
To add further to their refusal, the telephone call to let me know the outcome was not forthcoming, despite them saying they had a duty to call me within 24 hours of their answer. So it was left to me to chase up, and when I finally spoke to someone in their office, she informed me with an air of patronising, that she was "aware it is not the answer I was hoping for". No kidding!
I approached my local Parent Partnership, who are volunteers, and who have experience and knowledge of the SEN system.
I met with one of their advisers, and through him, he arranged an informal meeting with a representative from the SEN team.
We met at W's school, and present were myself, W's teacher, my adviser from the PP, and the SEN member. W was still not required by this stage, and the representative was not interested in meeting him.
The child for whom the 'experts' on a panel decided didn't need an EHCP.
W's teacher fought her ground, and asked the SEN woman to clarify exactly what was not sufficient in all the information she had submitted.
Each time the SEN woman gave an example, W's teacher went into the information the SEN panel had received and apparently reviewed (to base their "no" decision on) and showed her just what she was asking for. There was nothing missing. Everything they claimed they needed to base their decision on, was there.
The excuses kept on coming though.
I was asked to approach W's ophthalmologist and request him to write a detailed report on W's eye condition, how it affected him day to day, the outlook, expectations etc. I was also asked to pay out of my own pocket for an educational psychologist report, and a speech therapist report. They were asking me to spend upwards of £500 for this.
If you consider that the EHCP has it's own educational psychologists and speech therapists to complete their own assessments, it seemed ridiculous, and another cheap tactic to make me give up trying to fight them to carry it out.
I decided then to continue on to Global Mediation. It is a relatively new idea (it wasn't a must do way back when I had a Statement (what the EHCP used to be called!) carried out on my eldest son).
The SEN team had a deadline to reply to the GM request, and two days before it ran out, I received a letter from the SEN team, which made no sense. They stated they had received a request to carry out an EHCP on W, and that they had 6 weeks to decide if they would do so.
I have dealt with this particular SEN team before, and I had been caught out by their lies and tricks before, so this time I knew it wasn't a mistake. They were hoping to catch me out.
I called GM and my adviser there said the SEN had not responded to their request for a meeting.
I called my SEN team. I asked why this letter had been generated and sent, and why they had ignored the GM request. The resulting waffle and lies were laughable.
I telephoned the GM back a little later that day, and was told the SEN had literally just emailed in a response to the meeting and had agreed. Funny that.
I had collated all the information for the big meeting. I even purchased a swish folder file to hold all the paperwork in. I wanted to look and feel confident.
I researched the GM mediator who was assigned our case. He seemed very adept at his regular career as a solicitor, and his mediation skills had all positive reviews.
I was ready to fight the SEN. I was actually quite looking forward to it. To show them up. To highlight their excuses. I even had photos of W to look over us as we talked around the table. I wanted them to see the child for whom they knew so much about (apparently).
40 hours before our meeting, I received a call from GM to say that the SEN team had backed down and had agreed to carry out the EHCP, and that they wanted the meeting cancelled.
I requested that the SEN confirm this to me in writing (email) before I agree to cancel, as I didn't want them to catch me out again, by lying about agreeing, me cancelling, and then losing the right to a meeting - there are strict rules and time frames for Global Mediation, and as we were right at the end of the time frame I didn't want to fall into a trap (I really really do not trust SEN teams!!).
So now the EHCP process has begun. We have met with the coordinator who is our 'go to' person throughout the assessment. An educational psychologist has been booked for a review of W, at school.
I am not letting my guard down however.
I have learnt the hard way about their specialists who assess children for the EHCP. The report generated for my eldest son's tribunal (going back a few years now!) was full of lies (claiming I had said X and Y), and was so biased towards the SEN council, it was laughable. I ripped the report apart, highlighted each inaccuracy, submitted it to the panel of three judges, and was praised by the tribunal head judge for not bowing down to the bullying of the council team.
The supposed 20 weeks time frame is also not tenable I have been told. They are so far behind with their EHCP's that even my eldest son who is being transferred over to the EHCP from the Statement (every child will be transferred over in the country) has a delay, despite him not having his EHCP questioned at all. He is severely autistic and has severe learning difficulties. The SEN team won't dare try and refuse him!
It should not be this hard to get my son help with his education. But it is. And it is happening all over the country. With the way the Tory government view people with disabilities, it is not going to get better any time soon. SEN teams need proper funding to keep on top of the many children with disabilities in their catchment, but because there are always budget cuts by each council (and the children's and disabled services always seem to be hit hard each time when they make cuts) and the councils don't get enough government backing financially, it is a mess. A disgrace. It is 2016 in modern Britain, and yet children and adults with a disability are treated with contempt by those in power.
SEN teams do not ever seem to be kind or amenable however, and the panel of 'experts' have no interest in an individual child, just how easily they can keep costs down by refusing to help children who need support.
Politics. There's only ever one winner.
I have a big fight on my hands.
I'm ready to give it my all.
My son needs me to.
Monday 21 March 2016
Sunday 15 November 2015
Eye Appointment And A New Diagnosis
W had another check up at the eye hospital this week. It should have been in early August, but there was some sort of problem at the hospital and the week before his appointment in August we received a letter informing us that a new appointment had been made for November - quite a wait in my opinion.
The appointment is the usual round of having eye drops, looking at the eye test charts ( bold black letters in a block of 4 or 5 which the practitioner is holding) and W holds a piece of card with the same bold black letters on, and he is asked which one the person is pointing to, and he has to point to the same letter on his card.
The letter size he can see, from a distance of three metres is fairly large, around 6 inches. When he moved down a size, where the letters were around 4 inches big, W couldn't make what any of them were, apart from the 'X', even from three metres away. W got frustrated that he couldn't answer them, but I told him it was fine, and that he didn't need to guess if he couldn't see them. He said it was " all confusing as they don't look like letters" so I asked W what they looked like to him, and he replied, " they look like lots of black dots".
We were asked again to take part in the study that his consultant ophthalmologist (Mr S) is running ( he is doing this study as a side to his regular work at the hospital, as he has a keen interest in nystagmus). This time around W had to look at a computer screen and look at a dot. They then took a photo of me, and uploaded it to the programme.
W then had to look at the photo of me on the screen, whenever it flashed up. The lasers were detecting how long it took his eyes to 'see' the image of me.
We then go back to have the back of his eyes photographed ( I blogged about this from our last visit there, and how the area Mr S needed to see was literally millimetres off of the photograph. You can find that post here - Unintentional Comments and Eye Appointments
This time the photographer manages to get a good image for each eye, and I am mightily relieved!
Our final port of call is when we see his consultant, Mr S.
He looks into W's eyes and confirms his lens prescription for his glasses is adequate and no change is needed.
Mr S views the images taken earlier, and looks at the swab tests he took earlier in the year, and confirms his suspicions that W has a genetic condition called oculocutaneous albinism from the tyrosinase gene.
I had thought he had ocular albinism (as I blogged about before) but Mr S said it was in fact the aforementioned form of albinism. It is a long held misconception that albinism only presents as incredibly fair/white hair, with pale skin. He said people can have brunette coloured hair and still have O/A.
What this means for W is that he has an inherited condition that could impact on any children he has.
This also means my other child, O, can be tested ( my eldest J, who has the severe autism and learning difficulties is excluded by my choice as he will never be married or have children) as he will need to be aware of any genetic condition he could pass down.
Mr S did tell me how the odds work, and that both myself and the boys father will be carriers, or maybe even affected but unaware, and so we are to be tested too.
I have always had comments passed about my fair skin and how pale I am against other people in my family. Photos of me with other people always highlight how pale I am!
It may well be because I too have O/A, but as my eyes are not affected as such, it was never suspected.
All of my children are dark blonde, and I was very pale light blonde as a child. Another clue maybe?
I have had a few days to try and digest this news, and have been on Google trying to learn more about it.
I must say that right now I feel quite emotional about it all. That I may have passed a genetic condition on to my children, and that I have contributed to their disability. My eldest son, J is a part of the DDD study in Northampton, and after three years they finally got back to me with half an answer, which is they have excluded any condition J could have that is not hereditary, and so they are now testing mine and his father's samples for answers, and to see if we have passed anything on to him. The DDD study is huge, and therefore it is taking years for them to test and to collate all their data from every sample taken.
W was, as always, a superstar at the hospital. I had prepared him for the fact he would need eye drops, as the last time he got so upset and it took ages to persuade him to have them.
This time, he knew it would be unpleasant, but he sat down, put his head back, and let the chap administer the drops. He flinched, as we all do, and rubbed his eyes, but he did it, without screaming or point blank refusal. Afterwards he told a few other people in the waiting room, that "the eye drops are okay but a bit stingy".
The next day he was over the moon as we went to the optician to order some new pairs of glasses. Even though his prescription is the same, I thought it was time for him to have some new pairs. He choose a Star Wars themed pair, and a style similar to his current Gruffalo pair. He is currently doing a countdown till the day we can go and collect them!
The appointment is the usual round of having eye drops, looking at the eye test charts ( bold black letters in a block of 4 or 5 which the practitioner is holding) and W holds a piece of card with the same bold black letters on, and he is asked which one the person is pointing to, and he has to point to the same letter on his card.
The letter size he can see, from a distance of three metres is fairly large, around 6 inches. When he moved down a size, where the letters were around 4 inches big, W couldn't make what any of them were, apart from the 'X', even from three metres away. W got frustrated that he couldn't answer them, but I told him it was fine, and that he didn't need to guess if he couldn't see them. He said it was " all confusing as they don't look like letters" so I asked W what they looked like to him, and he replied, " they look like lots of black dots".
We were asked again to take part in the study that his consultant ophthalmologist (Mr S) is running ( he is doing this study as a side to his regular work at the hospital, as he has a keen interest in nystagmus). This time around W had to look at a computer screen and look at a dot. They then took a photo of me, and uploaded it to the programme.
W then had to look at the photo of me on the screen, whenever it flashed up. The lasers were detecting how long it took his eyes to 'see' the image of me.
We then go back to have the back of his eyes photographed ( I blogged about this from our last visit there, and how the area Mr S needed to see was literally millimetres off of the photograph. You can find that post here - Unintentional Comments and Eye Appointments
This time the photographer manages to get a good image for each eye, and I am mightily relieved!
Our final port of call is when we see his consultant, Mr S.
He looks into W's eyes and confirms his lens prescription for his glasses is adequate and no change is needed.
Mr S views the images taken earlier, and looks at the swab tests he took earlier in the year, and confirms his suspicions that W has a genetic condition called oculocutaneous albinism from the tyrosinase gene.
I had thought he had ocular albinism (as I blogged about before) but Mr S said it was in fact the aforementioned form of albinism. It is a long held misconception that albinism only presents as incredibly fair/white hair, with pale skin. He said people can have brunette coloured hair and still have O/A.
What this means for W is that he has an inherited condition that could impact on any children he has.
This also means my other child, O, can be tested ( my eldest J, who has the severe autism and learning difficulties is excluded by my choice as he will never be married or have children) as he will need to be aware of any genetic condition he could pass down.
Mr S did tell me how the odds work, and that both myself and the boys father will be carriers, or maybe even affected but unaware, and so we are to be tested too.
I have always had comments passed about my fair skin and how pale I am against other people in my family. Photos of me with other people always highlight how pale I am!
It may well be because I too have O/A, but as my eyes are not affected as such, it was never suspected.
All of my children are dark blonde, and I was very pale light blonde as a child. Another clue maybe?
I have had a few days to try and digest this news, and have been on Google trying to learn more about it.
I must say that right now I feel quite emotional about it all. That I may have passed a genetic condition on to my children, and that I have contributed to their disability. My eldest son, J is a part of the DDD study in Northampton, and after three years they finally got back to me with half an answer, which is they have excluded any condition J could have that is not hereditary, and so they are now testing mine and his father's samples for answers, and to see if we have passed anything on to him. The DDD study is huge, and therefore it is taking years for them to test and to collate all their data from every sample taken.
W was, as always, a superstar at the hospital. I had prepared him for the fact he would need eye drops, as the last time he got so upset and it took ages to persuade him to have them.
This time, he knew it would be unpleasant, but he sat down, put his head back, and let the chap administer the drops. He flinched, as we all do, and rubbed his eyes, but he did it, without screaming or point blank refusal. Afterwards he told a few other people in the waiting room, that "the eye drops are okay but a bit stingy".
The next day he was over the moon as we went to the optician to order some new pairs of glasses. Even though his prescription is the same, I thought it was time for him to have some new pairs. He choose a Star Wars themed pair, and a style similar to his current Gruffalo pair. He is currently doing a countdown till the day we can go and collect them!
Sunday 18 October 2015
Applying for a Statement (EHCP)
W is happy in his kindie year at school. He is technically in Year 1 of primary school here (UK), but as I took the decision not to send him to a mainstream school (due to the overcrowding of the classrooms - our area have roughly 40 pupils per class - and the fact our Local Authority would not provide him with any assistance), he is still classed as a kindie student (along the lines of the US and Montessori way of schooling).
He is in a class of no more than 12 children, and has a lot of one to one teaching.
I have just begun the process of applying for a 'Statement' for W, although it is now called an 'EHCP' (Education Health and Care Plan). To actually get the required forms to apply for this was a challenge, with numerous answer phone messages being left with the SEN department of our LA, emails being sent (with the courteous automated acknowledgement replies from their inbox), and mis-information being offered by someone in their office, which confused and delayed the supplying of the forms to me by several weeks.
Our LA do not provide provision for VI children under 16. They may, at a push, offer a few hours a week of an SEN assistant to help out during school hours, but for the most, it is a kind of "get on with it yourself" attitude. Only a few miles away, but not in our catchment, is a specialist school for VI children, and also a unit attached to a mainstream school that is for VI children, that is equipped fully with all the useful tools to help with the teaching and education of a VI child.
There is a person who works 'for' VI children, via the LA, and advocates what assistance there is in schools, but he just has leaflets to give out, and spouts a lot of hot air, which doesn't do much. When asked about the schooling just outside the catchment, he closes down faster than an MP being asked about his expenses fiddle. He has a grand job title, is paid by local taxes, and doesn't actually 'do' much - quite common nowadays.
As W has oral motor delay as well as his VI, it should not be too much of a struggle to get a Statement (EHCP). It is then with this, I can push the LA into action, and either get them to allow him to attend one of the VI schools, or to pay for his education at his current provider, to which I am funding myself currently.
There is a fabulous primary school for SEN children (aged 4-11), which is where my eldest son, J, who has severe autism and learning difficulties attended, but this wouldn't be suitable for W, as although they provide excellent tools for communication, PECS, equipment, sensory, and outstanding staff, (yes I am biased as they are truly amazing!), W is not impaired cognitively or socially, and so it would not be appropriate schooling for him - plus the school is in such high demand, being the only SEN primary school for autism and learning difficulties in our LA. They have expanded once already, and are expanding again. Testament to A) the school being led by a wonderful Head Teacher, and B) how many more children are needing special education.
Yes I could just put up and shut up and just send him to a mainstream school, but he wouldn't receive tailored teaching to his needs, and he would fall behind (quite literally as he has balance and co-ordination limits due to his depth of perception ). If the schools were not so over crowded, under funded, and had more trained staff for SEN, then I would consider it, but I just can't push him into a cattle market conveyor belt of education.
I still have all the paperwork from J's (my eldest's) Statement application and process. It was a lot of work, and took time to achieve, but it was smooth and almost effortless, as there was not doubting he would get the Statement, due to his severe disabilities. It was also carried out in a different area, and the LA where we were then were a lot more practical and approachable.
This time around, almost 10 years on, and in this current LA, I think it will be a lot harder to obtain, and the obstacles placed by the SEN team of the LA, will no doubt test my limits of patience. I have had several dealings with them in the past, in relation to J, and it can be like wading through knee high mud, with someone throwing water balloons in your face. They make it hard for the parents/carers ( I have spoken to many, many parents like myself who have struggled with them too), which is terrible, considering we are already dealing with our children's special needs.
He is in a class of no more than 12 children, and has a lot of one to one teaching.
I have just begun the process of applying for a 'Statement' for W, although it is now called an 'EHCP' (Education Health and Care Plan). To actually get the required forms to apply for this was a challenge, with numerous answer phone messages being left with the SEN department of our LA, emails being sent (with the courteous automated acknowledgement replies from their inbox), and mis-information being offered by someone in their office, which confused and delayed the supplying of the forms to me by several weeks.
Our LA do not provide provision for VI children under 16. They may, at a push, offer a few hours a week of an SEN assistant to help out during school hours, but for the most, it is a kind of "get on with it yourself" attitude. Only a few miles away, but not in our catchment, is a specialist school for VI children, and also a unit attached to a mainstream school that is for VI children, that is equipped fully with all the useful tools to help with the teaching and education of a VI child.
There is a person who works 'for' VI children, via the LA, and advocates what assistance there is in schools, but he just has leaflets to give out, and spouts a lot of hot air, which doesn't do much. When asked about the schooling just outside the catchment, he closes down faster than an MP being asked about his expenses fiddle. He has a grand job title, is paid by local taxes, and doesn't actually 'do' much - quite common nowadays.
As W has oral motor delay as well as his VI, it should not be too much of a struggle to get a Statement (EHCP). It is then with this, I can push the LA into action, and either get them to allow him to attend one of the VI schools, or to pay for his education at his current provider, to which I am funding myself currently.
There is a fabulous primary school for SEN children (aged 4-11), which is where my eldest son, J, who has severe autism and learning difficulties attended, but this wouldn't be suitable for W, as although they provide excellent tools for communication, PECS, equipment, sensory, and outstanding staff, (yes I am biased as they are truly amazing!), W is not impaired cognitively or socially, and so it would not be appropriate schooling for him - plus the school is in such high demand, being the only SEN primary school for autism and learning difficulties in our LA. They have expanded once already, and are expanding again. Testament to A) the school being led by a wonderful Head Teacher, and B) how many more children are needing special education.
Yes I could just put up and shut up and just send him to a mainstream school, but he wouldn't receive tailored teaching to his needs, and he would fall behind (quite literally as he has balance and co-ordination limits due to his depth of perception ). If the schools were not so over crowded, under funded, and had more trained staff for SEN, then I would consider it, but I just can't push him into a cattle market conveyor belt of education.
I still have all the paperwork from J's (my eldest's) Statement application and process. It was a lot of work, and took time to achieve, but it was smooth and almost effortless, as there was not doubting he would get the Statement, due to his severe disabilities. It was also carried out in a different area, and the LA where we were then were a lot more practical and approachable.
This time around, almost 10 years on, and in this current LA, I think it will be a lot harder to obtain, and the obstacles placed by the SEN team of the LA, will no doubt test my limits of patience. I have had several dealings with them in the past, in relation to J, and it can be like wading through knee high mud, with someone throwing water balloons in your face. They make it hard for the parents/carers ( I have spoken to many, many parents like myself who have struggled with them too), which is terrible, considering we are already dealing with our children's special needs.
Wednesday 19 August 2015
The Need For A Visibility Cane
It's something most parents of young children have experienced, but it has become a bug bear of mine of late.
Other people and their attitude towards young children when you're out and about.
Supermarket shopping, walking in busy places, queueing...... places where there are plenty of people, who are busy, and want to get to where they're going, and if your child is in their way they tut, sigh, roll their eyes, or mutter.
It's, of course, not just young children that fall foul of this, and I know many, many people with a VI have had similar happen to them.
As W takes longer to 'see' things up close, and does not see from a distance, he can bump into people accidentally, or stand in their way, as they march towards their destination, and because he doesn't move out of their way with lightening speed, they feel their whole day has been ruined, and thus have to make sure he, and I know of this terrible trauma to themselves.
Yes I write that paragraph with a huge dose of sarcasm, but I have had enough of selfish, thoughtless people and their bad attitudes.
We were in the chemist recently, and were in a queue. W was talking away, (he doesn't stop chattering these days!), and the queue movement was stagnant for a fair while, which obviously caused the woman in front of us to become annoyed.
When it came to her being served, she was short and clipped with the assistant. When her prescription was handed to her, she snatched it, turned, saw W and I behind her (we were not close enough to whisper sweet nothings in her ear, or kiss her neck) and proceeded to barge at him. Barge. She could have walked to either side of us and the queue, but she decided to walk straight at us, or to be precise, W. I believe she thought W would jump out of her way. He didn't. He wasn't aware of her manner and expectation, and was still talking to me.
In the ensuing seconds of her turning and barging, she sent him flying backwards. He fell into the metal display shelves, banging his head, and crumpling to the floor crying.
She stood still, tutted, exclaimed "he should have moved then", and walked off.
Two assistants came round to help W. The queue stood there half shocked at her brazenly walking off after what she had just done to a child.
Cuddles, head checked out by the pharmacist, a promise of a bar of chocolate, and W seemed okay.
I got our prescription, and left as quick as possible.
Should I have pursued it further and had her stopped? Maybe. But it happened so quickly, and W was my priority. Hindsight is a wonderful thing.
I know this kind of incident is not common, but it did happen, and it was traumatic for W.
I sourced a white visibility cane for him soon after, and I have noticed the difference in many people's attitudes towards him.
When walking into or out of a shop door, in an aisle, stairs, buses, parks, etc, we get less bad attitudes, and instead receive a head nod type of acknowledgement (directed at me), and a half smile and head tilt (in W's direction). It really does make a difference to the way W is treated.
I purchased the cane from - RNIB Children's Visibility Cane
W understands the cane is to help people understand he has special eyes, and that he needs a little more time in walking, negotiating new places, and being in busy places. He likes to hold the cane. I feel less anxious when he has it too. Less anxious, as people are kinder towards him, and have more patience.
Other people and their attitude towards young children when you're out and about.
Supermarket shopping, walking in busy places, queueing...... places where there are plenty of people, who are busy, and want to get to where they're going, and if your child is in their way they tut, sigh, roll their eyes, or mutter.
It's, of course, not just young children that fall foul of this, and I know many, many people with a VI have had similar happen to them.
As W takes longer to 'see' things up close, and does not see from a distance, he can bump into people accidentally, or stand in their way, as they march towards their destination, and because he doesn't move out of their way with lightening speed, they feel their whole day has been ruined, and thus have to make sure he, and I know of this terrible trauma to themselves.
Yes I write that paragraph with a huge dose of sarcasm, but I have had enough of selfish, thoughtless people and their bad attitudes.
We were in the chemist recently, and were in a queue. W was talking away, (he doesn't stop chattering these days!), and the queue movement was stagnant for a fair while, which obviously caused the woman in front of us to become annoyed.
When it came to her being served, she was short and clipped with the assistant. When her prescription was handed to her, she snatched it, turned, saw W and I behind her (we were not close enough to whisper sweet nothings in her ear, or kiss her neck) and proceeded to barge at him. Barge. She could have walked to either side of us and the queue, but she decided to walk straight at us, or to be precise, W. I believe she thought W would jump out of her way. He didn't. He wasn't aware of her manner and expectation, and was still talking to me.
In the ensuing seconds of her turning and barging, she sent him flying backwards. He fell into the metal display shelves, banging his head, and crumpling to the floor crying.
She stood still, tutted, exclaimed "he should have moved then", and walked off.
Two assistants came round to help W. The queue stood there half shocked at her brazenly walking off after what she had just done to a child.
Cuddles, head checked out by the pharmacist, a promise of a bar of chocolate, and W seemed okay.
I got our prescription, and left as quick as possible.
Should I have pursued it further and had her stopped? Maybe. But it happened so quickly, and W was my priority. Hindsight is a wonderful thing.
I know this kind of incident is not common, but it did happen, and it was traumatic for W.
I sourced a white visibility cane for him soon after, and I have noticed the difference in many people's attitudes towards him.
When walking into or out of a shop door, in an aisle, stairs, buses, parks, etc, we get less bad attitudes, and instead receive a head nod type of acknowledgement (directed at me), and a half smile and head tilt (in W's direction). It really does make a difference to the way W is treated.
I purchased the cane from - RNIB Children's Visibility Cane
 |
| Posing with his visibility cane. Note the labradors behind him! One is just visible above him on the left side, the other is looking grumpily at the camera. Both sitting in their bed, waiting for the photo to be taken. |
W understands the cane is to help people understand he has special eyes, and that he needs a little more time in walking, negotiating new places, and being in busy places. He likes to hold the cane. I feel less anxious when he has it too. Less anxious, as people are kinder towards him, and have more patience.
As it's Wednesday, I'll add this in to the post. The NAD is in a few months.
Tuesday 14 July 2015
Little Girl Wearing New Glasses For First Time
This video has been circulating around social media places, and I have watched it many times. Each time brings me to tears, and also a big smile, as the little girl really shows just how wonderful something so many of us take for granted, is to her.
Just click on the link - Little girl wearing new glasses
This link will take you to a public Facebook video being shared by the little girl's mother.
Just click on the link - Little girl wearing new glasses
This link will take you to a public Facebook video being shared by the little girl's mother.
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| I have captured a screen shot from the video. Look at her beautiful little face! |
Saturday 27 June 2015
Unintentional Comments and Eye Appointments
When an unintentional comment about W and his eyes is thrown our way, it could be easy to throw one back, but for me I take it in the genuine nature it was intended.
For example, on the last visit to the eye hospital, W had to have a special photograph taken of the back of his eyes. This photograph was to determine whether he had another sign of an eye condition called ocular albinism. I would like to be able to explain what he was looking for in detail, but to be honest, I cannot remember it correctly, and I don't want to give the wrong information.
We walked down to the room with the camera, and were greeted by a nurse and a chap who was operating the machine.
W sat down, and placed his chin in the rest, as requested by the photographer.
The photographer then proceeded to try and take some photos.
He soon looked up at W and made the following request - "young man, can you please stop moving your eyes around as I cannot get the correct photo that we need."
I looked at the nurse, she looked at me, we both then comically looked at the photographer and said in unison - "he has nystagmus, he can't control his eyes!"
He was so embarrassed! However, I didn't take offence. It was an honest error and meant with no malice. But at least now he understands that when he see the word 'nystagmus' he knows it's an involuntary eye movement.
Some photos were taken, and we headed back to the specialist. But, unfortunately, the photo of the area he wanted to see, was missed by only a few millimetres, and therefore he didn't get the answer he had hoped.
As we had been at the eye hospital, by that time, for four hours (!!), W was tired, I was tired, the waiting room was empty, the reception staff were closing up, and I just wanted to get home, despite knowing we would hit the rush hour traffic, and all the hospital staff vacating the site as well.
Swabs were taken from W and myself, during that visit, and will hopefully either rule out or determine a genetic factor in to why W has nystagmus (and any other condition). It may even link into my eldest son's disability (he has severe learning difficulties).
I have spoken in detail about the genetic tests carried out on my eldest son, J, in the blog I write for him ( you can find it here ), and I clearly state that I have not wanted genetic tests carried out, in the vain hope of finding the boys have something that could be cured, but rather I want my middle son O, (who has no disability) and my youngest W, to be forewarned about anything they could pass on to their children. My eldest will not have children of course.
Our next appointment is in early August, and we may have some results back from the tests. The appointment is always the same routine
* have general chat with ophthalmologist about how he's doing
* have eye test (at this age it is pictures to point to, not letters)
* nurse administers eye drops
* wait for 20-30 mins
* see the specialist who performs an in depth examination of his eyes and determines if new lens strength is needed for the glasses
This usually takes around 2-3 hours, but can and does run on for longer when there are delays with other people's appointments, staff shortages etc.
So far, over the years, W has taken these appointments with such graciousness. He doesn't complain or moan. He complies with the requests from those who are looking at his eyes. He is amazing.
For example, on the last visit to the eye hospital, W had to have a special photograph taken of the back of his eyes. This photograph was to determine whether he had another sign of an eye condition called ocular albinism. I would like to be able to explain what he was looking for in detail, but to be honest, I cannot remember it correctly, and I don't want to give the wrong information.
We walked down to the room with the camera, and were greeted by a nurse and a chap who was operating the machine.
W sat down, and placed his chin in the rest, as requested by the photographer.
The photographer then proceeded to try and take some photos.
He soon looked up at W and made the following request - "young man, can you please stop moving your eyes around as I cannot get the correct photo that we need."
I looked at the nurse, she looked at me, we both then comically looked at the photographer and said in unison - "he has nystagmus, he can't control his eyes!"
He was so embarrassed! However, I didn't take offence. It was an honest error and meant with no malice. But at least now he understands that when he see the word 'nystagmus' he knows it's an involuntary eye movement.
Some photos were taken, and we headed back to the specialist. But, unfortunately, the photo of the area he wanted to see, was missed by only a few millimetres, and therefore he didn't get the answer he had hoped.
As we had been at the eye hospital, by that time, for four hours (!!), W was tired, I was tired, the waiting room was empty, the reception staff were closing up, and I just wanted to get home, despite knowing we would hit the rush hour traffic, and all the hospital staff vacating the site as well.
Swabs were taken from W and myself, during that visit, and will hopefully either rule out or determine a genetic factor in to why W has nystagmus (and any other condition). It may even link into my eldest son's disability (he has severe learning difficulties).
I have spoken in detail about the genetic tests carried out on my eldest son, J, in the blog I write for him ( you can find it here ), and I clearly state that I have not wanted genetic tests carried out, in the vain hope of finding the boys have something that could be cured, but rather I want my middle son O, (who has no disability) and my youngest W, to be forewarned about anything they could pass on to their children. My eldest will not have children of course.
Our next appointment is in early August, and we may have some results back from the tests. The appointment is always the same routine
* have general chat with ophthalmologist about how he's doing
* have eye test (at this age it is pictures to point to, not letters)
* nurse administers eye drops
* wait for 20-30 mins
* see the specialist who performs an in depth examination of his eyes and determines if new lens strength is needed for the glasses
This usually takes around 2-3 hours, but can and does run on for longer when there are delays with other people's appointments, staff shortages etc.
So far, over the years, W has taken these appointments with such graciousness. He doesn't complain or moan. He complies with the requests from those who are looking at his eyes. He is amazing.
Monday 25 May 2015
Learning To Ride A Scooter and Bike
When W was a baby, I knew I wanted to allow him the freedom of a regular sighted child's childhood, and not be over protective, or stop him from trying something.
When he was a toddler, it was easy, as we all hold toddler hands when out and about, and we take extra care with them.
As W got older, around three years old, he would watch his two older brother ride around on their scooters and bikes.
In time, W inherited his middle brother's scooter, and I was very nervous about him using it, although I didn't say this to him.
The first time he had a go, was in the garden, and he was so confident, and actually incredibly good at it. No wobbling or difficulty with push starting, and using his foot to push along. It was fantastic to see. He flew around and around, so proud he could join his brothers in their games.
The above scooter is very similar to the one he was handed down from his middle brother. It has a wide foot plate, and three wheels, which make it more sturdy for beginners. It's still in the garden shed now, and W does still enjoy his scoots around the garden. Sometimes he is a delivery driver and I am given parcels from his scooter van. Other times he takes order for a grocery shop, and will bring you back your 'goods'.
When he was a toddler, it was easy, as we all hold toddler hands when out and about, and we take extra care with them.
As W got older, around three years old, he would watch his two older brother ride around on their scooters and bikes.
In time, W inherited his middle brother's scooter, and I was very nervous about him using it, although I didn't say this to him.
The first time he had a go, was in the garden, and he was so confident, and actually incredibly good at it. No wobbling or difficulty with push starting, and using his foot to push along. It was fantastic to see. He flew around and around, so proud he could join his brothers in their games.
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| Scooter similar to his |
The above scooter is very similar to the one he was handed down from his middle brother. It has a wide foot plate, and three wheels, which make it more sturdy for beginners. It's still in the garden shed now, and W does still enjoy his scoots around the garden. Sometimes he is a delivery driver and I am given parcels from his scooter van. Other times he takes order for a grocery shop, and will bring you back your 'goods'.
He is super quick on it, and on days when the dogs are lazing about on the patio, enjoying a particularly warm day, they do have to have quick reflexes and get out of his way!
As he got older, he wanted a bike. I had heard good things about balance bikes, and after reading reviews, and talking to other parents, I decided to purchase one for him. I felt a balance bike would help him with his coordination, and as there are no pedals, he would have one less thing to think about.
The above bike is the one I bought, and it has been an excellent choice. W flies off on it. He's so confident.
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| Balance bike from Toys R Us |
The above bike is the one I bought, and it has been an excellent choice. W flies off on it. He's so confident.
With a helmet for safety, I introduced him to the local park with the bike. He whizzed off. It was quite scary for me to see.
I decided to come up with a 'call out', that W knew meant he had to stop where he was and not move.
I decided to come up with a 'call out', that W knew meant he had to stop where he was and not move.
This was because there were other cyclists (some of whom have little respect for any other person in the park and ride fast, and close to children without a thought or care). However, most cyclists moved to his side, and smiled at him, as he waited where he was, waiting for my all clear call for him to begin riding again.
The reason I used this call out was for the simple reason ; W cannot see these people on their bikes, or walking along, other children on their scooters, dogs chasing a ball.... from a distance. As I've mentioned before, he only sees them from around 3 metres away, as a figure, and then only their features from around a metre away. Naturally he uses his hearing, and sometimes stops automatically before I've called out, as he can hear the rhythmic turning of a cycle wheel, or the thud, thud, thud of dog paws running his way.
I've been told that these balance bikes are a better way for any child to learn how to have bike confidence. Apparently the transition to a pedal bike is easy, as the child has learnt the art of balancing, speed control, turning the handle bars. and stopping (no breaks on the balance bike, but the child learns to slow down).
Time will tell if this applies to W. For now he is happy with his current bike, and feels like he is keeping up with his older brothers.
Tuesday 19 May 2015
17 Year Old Young Woman, Who Is Blind, Wins Bronze At Pole Vaulting
A friend sent me a link to a news article about a young woman, who is a pole vaulter, and also blind.
It was brilliant to read about her winning a Bronze medal in her state of Texas, USA, high school championship.
Charlotte Brown, who is just 17 years old, was joined on the winners podium by her Guide Dog, Vador.
Charlotte developed cataracts at 16 weeks of age, and had artificial lenses inserted. Her vision began to worsen when she was around 11 years old, and now, at the age of 17, she is classed as 'legally blind'. Her only vision is what she describes as a 'jigsaw puzzle' of light and dark shades.
What an amazing young woman. She proves that barriers are only there to be vaulted over, and are not there to stop her from achieving her dream.
It was brilliant to read about her winning a Bronze medal in her state of Texas, USA, high school championship.
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| Charlotte Brown |
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| Charlotte with Vador |
Charlotte developed cataracts at 16 weeks of age, and had artificial lenses inserted. Her vision began to worsen when she was around 11 years old, and now, at the age of 17, she is classed as 'legally blind'. Her only vision is what she describes as a 'jigsaw puzzle' of light and dark shades.
Charlotte has been training in her pursuit of winning a medal for the past two years. She finished eighth, and then fourth in previous attempts, and then won third place last Saturday.
Charlotte first took up pole vaulting, which is not a Paralympic sport, in seventh grade because she wanted something a little, as she says - "dangerous and exciting".
Charlotte says that she counts the seven steps of her left foot on her approach, listening for the sound of a faint beeper placed on the mat that tells her when to plant the pole and push up.
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| Charlotte Brown |
Charlotte says ;
"It took me three years to get on the podium, and I finally did it."
"If I could send a message to anybody, it's not about pole vaulting and it's not about track. It's about finding something that makes you happy despite whatever obstacles are in your way."
"This story really wasn't about me."
"It was about everybody that struggles with something."
What an amazing young woman. She proves that barriers are only there to be vaulted over, and are not there to stop her from achieving her dream.
Sunday 17 May 2015
What Does He See? Nystagmus And My Boy.
One day, a few weeks back, W matter of factly told me, whilst walking down our stairs, that the stairs look flat to him. He said the floor on the ground looked all one level to where he was standing at the top of the stairs.
This was the first time he had ever conveyed to me just how he sees. It was a big moment for me. I didn't make out to him it was a big moment though, as I didn't want him to be put off telling me things, or be scared by my over enthusiasm.
What he described to me is called 'depth of perception', and is something I have been aware of from the early days of me researching nystagmus. I have always informed him about steps, tree roots sticking up, or holes and dips on pavements or roads, etc, as I knew he didn't 'see' them as they were, and could, and did at times, fall over them.
I did however take what he had told me as a sign that I could begin to ask him little questions about what he sees.
I asked him to tell me what he could see on my face. He pointed out all my features.
I then asked him to stand four metres away, and asked him the same question. He immediately answered with all my features, but I could tell he was just repeating them, as he knows where they are anyway. I asked him if he could actually see them, and he paused, looked, and said "no". He was a little bit confused by this question, but I explained to him that I know he remembers where my features are, but that's different from seeing them.
He moved closer, to three metres, then two metres away, and then by one metre he exclaimed, "yes, yes mummy, I can see your eyes and mouth now!"
I was slightly overwhelmed by what I'd just experienced, as it brought home just how close he needs to be to see details, but he was happy to comply with it all, and I didn't make it out to be a big deal.
I had had some inkling that he could decipher people's shape and clothing from further away, but didn't actually know if it was them or not until they got close enough.
An example of this was in the supermarket with a friend, with W sitting in the trolley seat (he still sits in the seat aged five as I like to keep him close in big supermarkets due to over zealous trolley and basket shoppers who barge through aisles, barely missing children's heads).
My friend went off to another aisle, and a minute later W started talking to someone who was a few metres away. I looked round, and saw it was a stranger, and said that that person wasn't my friend. W told me that they were wearing the same clothes though, and yes I admit she was in similar coloured clothing, and was a similar shape and height, but it wasn't her. I explained this to him, and he was puzzled. That was when I thought he was struggling with details from a relatively close proximity.
It was another incident that made me really think about all of this ; When the boy's dad came to visit, and I hadn't told them he was coming (in case he cancelled last minute and let them down), that I said to W, "open the door, I wonder who is there?". He did open it, and looked at the person standing in front of him. W looked him up and down and asked "who is it mummy?", and only then did his dad speak to say "hello", that W recognised his voice and yelled out, "daddy!!".
That made me really have to reconsider just how hard seeing is for W.
W is a confident boy now. He was painfully shy as a baby and toddler and would cling to me - I can't blame him, as the world is massive, and being so little, and not seeing too far away, it must be scary.
But, to people that meet him now, they can't believe he was ever a clingy, crying little boy that needed me to be there with him all the time (not that I minded, as I believe in 'attachment parenting' ideals (a lot of them, not all).
Something that W was afraid of was strange dogs walking in the park. Yes, we have two dogs ourselves, but he would scream when these strange dogs came up to his face. I understood why, and explained to the owners, that he wasn't scared of dogs per se, but he can't see them running towards him, and it's only at the last second that they appear in his view, and 'wham' they are there in front of him. That is quite scary if you think about it. And a 2 or 3 year old, right down at a dogs level, suddenly having a strange dog in his face - that's scary!
I would then always do a running commentary about the dogs roaming near us, and warn him if they were near, even calling the dog to me first, to allow W to see him/her first, be able to reach out to stroke them, and then know what the dog looks like. I still do this now.
He is so confident in familiar places. There have been occasions where his confidence has been dented, for example when keeping up with his friends when playing in the forest, he doesn't see little branches poking out, and he always smacks into them. He can't keep up with them completely either, but at this age I explain that it's not a race, and that he has a few friends that try to keep near to him to help him, when they remember (they are still only little so it's not expected that they either understand fully why he has difficulty keeping up with them, or remember to).
Due to his confidence, it makes people believe he can see far better, and further than he really can.
When I try to explain, I have been met with disbelief and sometimes even scepticism that I am a liar!
As he is only five, I know we still have a lot to learn, but he will be able to talk to me more about this, and educate me on his vision. We are lucky that we have a great team of eye specialists where we live, and one of them is a leading researcher in the area of nystagmus. We are part of his research study, and it is very reassuring to know that he understands all about nystagmus and wants to find ways to treat it and even cure it one day.
Saturday 16 May 2015
I Am Back And Blogging - Nystagmus
I have neglected this blog, and I apologise. I write another blog titled 'My Boy With Autism' and I have written many updates on there about W and his nystagmus.
I will put those links here, so you can read what I have written over the last few years.
I am aiming to start blogging on here properly again, but as a mum of three, with two labradors, one rat, and a mother living in my house due to her relocating across the country, I have very little spare time.
I should try harder though, as I remember how much I needed to read about nystagmus when I first heard about it, and the worry and upset I had about my son.
First post on my Autism Blog - My Third Child
Second Post on my Autism Blog - Nystagmus and the New Baby
Third Post on my Autism Blog - An Update on my Now Toddler!
Fourth Post on my Autism Blog - The Baby is now Three!
Fifth Post on my Autism Blog - Update on my third son, who's now Five!
I will put those links here, so you can read what I have written over the last few years.
I am aiming to start blogging on here properly again, but as a mum of three, with two labradors, one rat, and a mother living in my house due to her relocating across the country, I have very little spare time.
I should try harder though, as I remember how much I needed to read about nystagmus when I first heard about it, and the worry and upset I had about my son.
First post on my Autism Blog - My Third Child
Second Post on my Autism Blog - Nystagmus and the New Baby
Third Post on my Autism Blog - An Update on my Now Toddler!
Fourth Post on my Autism Blog - The Baby is now Three!
Fifth Post on my Autism Blog - Update on my third son, who's now Five!
Sunday 15 July 2012
First visit to the group
I finally went to a group for children with visual impairment.
It was amazing.
Now I have had plenty of experience with charity run groups, due to J and his autism, but this group was in another league.
The building was large and well equipped, modern and clean.
There were ten members of staff, some volunteers within that, all wearing the same top, with a name badge clearly displayed.
The activities W did were painting a ceramic pig, decorating a wooden spoon and a mask, which resulted in much glitter being sprinkled all over me and a little over those, thanks to W and his over zealous shaking.
He made cornflake cakes and played with toys.
It was just so well thought out.
I met several other mums, whose children had differing levels of vision, one young chap who is blind, and another young boy who has nystagmus like W.
I can see the place is well run, as they run an eBay shop to generate funding (100% of the sale price is given to them), they have tables with sweets and chocolate, and goods which have been donated to sell.
I want to show J's old special needs place that THIS is how you run a charity. THIS is how you hold a group for children.
I am so pleased I finally went, and we will be going every session from now on.
It was amazing.
Now I have had plenty of experience with charity run groups, due to J and his autism, but this group was in another league.
The building was large and well equipped, modern and clean.
There were ten members of staff, some volunteers within that, all wearing the same top, with a name badge clearly displayed.
The activities W did were painting a ceramic pig, decorating a wooden spoon and a mask, which resulted in much glitter being sprinkled all over me and a little over those, thanks to W and his over zealous shaking.
He made cornflake cakes and played with toys.
It was just so well thought out.
I met several other mums, whose children had differing levels of vision, one young chap who is blind, and another young boy who has nystagmus like W.
I can see the place is well run, as they run an eBay shop to generate funding (100% of the sale price is given to them), they have tables with sweets and chocolate, and goods which have been donated to sell.
I want to show J's old special needs place that THIS is how you run a charity. THIS is how you hold a group for children.
I am so pleased I finally went, and we will be going every session from now on.
Monday 11 June 2012
More words, and a little copycat
W is coming along so well with his speech. We now have almost recognisable words for jelly, milk, more, yes, Barney, Max (dogs) woof, and up, which is the clearest of them all.
He is a little copycat too. I noticed him standing with his hands behind his back and commented to a family member about how grown up he looks, only to be told I stand like that myself a lot of the time.
I'd never been aware of that.
Whatever his brothers do, he has to do, or at least try to do. Scootering, dancing, blowing raspberries, building brick towers and so on.
He role plays quite well too. He'll get a bag and fill it with toys. Then come up to me, grab my head and give me a kiss, wave, and then get in his Little Tikes car and drive off to work.
He sits still when I cut his hair, as he is following his brothers lead.
I let him brush my hair and he is in hysterics when he brushes it forward over my face and I pretend I can't see him anymore.
He has become aware of others pain, and will rub your arm if you exclaim out in pain. It does'nt matter where you have hurt yourself, he always rubs your arm.
And he now waves at everyone. He high fives the lolly pop man as we take O to school.
His confidence in others has grown so much.
But, he gets that little sad quivery lip when he thinks I am going out without him. I may put my shoes and coat on first, and he stands there, bottom lip quivering, tears in his eyes and a furrowed expression, and it is all I can do to scoop him up and cuddle him, and reassure him I am not leaving him.
He is a little copycat too. I noticed him standing with his hands behind his back and commented to a family member about how grown up he looks, only to be told I stand like that myself a lot of the time.
I'd never been aware of that.
Whatever his brothers do, he has to do, or at least try to do. Scootering, dancing, blowing raspberries, building brick towers and so on.
He role plays quite well too. He'll get a bag and fill it with toys. Then come up to me, grab my head and give me a kiss, wave, and then get in his Little Tikes car and drive off to work.
He sits still when I cut his hair, as he is following his brothers lead.
I let him brush my hair and he is in hysterics when he brushes it forward over my face and I pretend I can't see him anymore.
He has become aware of others pain, and will rub your arm if you exclaim out in pain. It does'nt matter where you have hurt yourself, he always rubs your arm.
And he now waves at everyone. He high fives the lolly pop man as we take O to school.
His confidence in others has grown so much.
But, he gets that little sad quivery lip when he thinks I am going out without him. I may put my shoes and coat on first, and he stands there, bottom lip quivering, tears in his eyes and a furrowed expression, and it is all I can do to scoop him up and cuddle him, and reassure him I am not leaving him.
Thursday 10 May 2012
Speech Assessment
We had our speech and language assessment the other week.
W was observed at play, I was asked numerous questions, and W was then given 'tasks' to perform, so that his ability and level could be observed.
Apart from the lack of words, he is doing everything that is expected of a 27 month old.
I was advised to do the following -
Two days ago W had his two year check with the health visitor.
I had requested it for a home visit as he is much easier to assess when relaxed with his surroundings.
The HV was fab. She was friendly and chatty and keen to learn about W and his eyes.
When we discussed his lack of words, she said to relax. It is not something to begin worrying about until he is around 2 and a half. She said the combination of being a sibling and having his middle brother talk for him, being a boy, and his eyes, can be a delay.
As he understands everything, does tasks requested, role plays with teddies and cups and spoons and can make his needs known by either pointing or taking me to what he wants, or by making his noises, he is doing just fine, for him.
W seemed to progress along with his peers, verbally, at first. But he did'nt continue to learn more words or continue to use what he had already spoken, and this made some feel I was lying about his abilities. It happened around the time he became more mobile and I feel that because he was concentrating so much on the physical aspect of his development, his verbal skills dwindled.
What has made me so happy this week however, is that W is really trying to repeat words now.
Only on his terms though - so if tired or just playing a game of smiling at me and refusing to repeat, he won't play ball.
Quite funnily now though he has started to repeat a word, almost perfectly clear for a stranger to understand as well - "SpongeBob". As in SpongeBob Square Pants - a favourite cartoon of his middle brother. When the theme tune comes on, he stops still and looks towards the t.v, and then 'sings' along. It's more "ba ba ba ba" but it is in sync with the words being sung.
He says "Maaa" for Max the dog. "Ouuu" for out. "Uuuu" for up. "Doww" for down. "Mar" for more.
He is getting there and he is just perfect to me.
W was observed at play, I was asked numerous questions, and W was then given 'tasks' to perform, so that his ability and level could be observed.
Apart from the lack of words, he is doing everything that is expected of a 27 month old.
I was advised to do the following -
- Reduce the amount of words within a sentence
- Go back to basics and use noises for things, such as "shwwwissssh" for water out of the tap
- Offer him two choices of toys or food/drink
- Sabotage this at times by offering something he will not like and something he does
- Keep on using the basic picture books and not use a negative if the incorrect picture is pointed to, just remark on what he has pointed to
- Use photo pictures for him to request (similar to PECS)
Two days ago W had his two year check with the health visitor.
I had requested it for a home visit as he is much easier to assess when relaxed with his surroundings.
The HV was fab. She was friendly and chatty and keen to learn about W and his eyes.
When we discussed his lack of words, she said to relax. It is not something to begin worrying about until he is around 2 and a half. She said the combination of being a sibling and having his middle brother talk for him, being a boy, and his eyes, can be a delay.
As he understands everything, does tasks requested, role plays with teddies and cups and spoons and can make his needs known by either pointing or taking me to what he wants, or by making his noises, he is doing just fine, for him.
W seemed to progress along with his peers, verbally, at first. But he did'nt continue to learn more words or continue to use what he had already spoken, and this made some feel I was lying about his abilities. It happened around the time he became more mobile and I feel that because he was concentrating so much on the physical aspect of his development, his verbal skills dwindled.
What has made me so happy this week however, is that W is really trying to repeat words now.
Only on his terms though - so if tired or just playing a game of smiling at me and refusing to repeat, he won't play ball.
Quite funnily now though he has started to repeat a word, almost perfectly clear for a stranger to understand as well - "SpongeBob". As in SpongeBob Square Pants - a favourite cartoon of his middle brother. When the theme tune comes on, he stops still and looks towards the t.v, and then 'sings' along. It's more "ba ba ba ba" but it is in sync with the words being sung.
He says "Maaa" for Max the dog. "Ouuu" for out. "Uuuu" for up. "Doww" for down. "Mar" for more.
He is getting there and he is just perfect to me.
Tuesday 24 April 2012
Education
My eldest son, J, who has autism (and for whom I write the other blog for), has been in the special schools system for around 5 years. He never started in mainstream at all. It was decided at nursery level that mainstream would not suit him, and so I never had a fight to get him suitably educated.
It is completly different with W.
There are no vision impaired schools, at all, within our local authority, and then there is only one school further afield ( 35 miles away) that is suitable from the age of eleven, and even then it would be a battle to get him in there due to red tape in opposing councils.
So W will have to attend a mainstream school. He will have to learn alongside fully sighted chidren.
He will get no real 'extra' help either.
The school would be able to apply for extra money to finance certain special equiment such as large print text books, a tilted table (if it helps him to read with his null point), marking stairs and steps out clearly with yellow, and perhaps an assistant that would shadow him and ensure he is confident moving around the school. The assistant though is usually a no no though as councils deem it too expensive, and as he is not in need of acute medical care, it is more a lifestyle assistance, they can, and most often do, refuse.
I feel very uneasy about sending him to mainstream.
I am not talking about sending him to a special school like J's which is set up for learning difficulties, as W appears to be neuro-typical, and it would not be suitable.
I do however feel he, and the many other children with vision impairment and blindness should have a school dedicated just for them.
Every aspect would be designed with their needs in mind and all the children would be comfortable in their surroundings, with staff fully converse in sight impairments.
In a mainstream school I would be on edge all day worrying about him. Tripping over simple objects. Falling up or down stairs or steps. Banging into walls, tables, chairs, doors, other children etc.
If you looked at the first video I uploaded in the previous blog entry you can see an example of how he sees stairs. He can not distinguish them at all.
This applies to other everyday things such as tables which are a similar colour to walls or floors. His eyes can not see that they are separate and therefore he is more likely to bump into them. Children are little whirlwinds, W no exception, and whizzing about here there and everywhere, playing chase games, he is likely to crash into many things.
I know children need to be children, but he is my baby and my need to protect him is immense (like most parents).
I want him to be able to learn with appropriate tools that are not different from everyone elses and where he won't be singled out as the 'special needs kid.'
It is early days still, I know, but sitting back and just hoping is never going to achieve much.
I may well have to fight for him to have an assistant to aid him in the first few months. To help him learn the layout of the school. To educate the children into why sticking their foot out to trip him up will not be tolerated. To make sure their resources for him are suitable. It's always a fight though.
Readers of my other blog will know how hard and how much I have to (as well as many other parents do too) fight for (sometimes) even basic things. This is another battle I have had to undertake, and although it is stressful and tiring, I know that I am doing it for the well being of my children , and that is always a good thing.
It is completly different with W.
There are no vision impaired schools, at all, within our local authority, and then there is only one school further afield ( 35 miles away) that is suitable from the age of eleven, and even then it would be a battle to get him in there due to red tape in opposing councils.
So W will have to attend a mainstream school. He will have to learn alongside fully sighted chidren.
He will get no real 'extra' help either.
The school would be able to apply for extra money to finance certain special equiment such as large print text books, a tilted table (if it helps him to read with his null point), marking stairs and steps out clearly with yellow, and perhaps an assistant that would shadow him and ensure he is confident moving around the school. The assistant though is usually a no no though as councils deem it too expensive, and as he is not in need of acute medical care, it is more a lifestyle assistance, they can, and most often do, refuse.
I feel very uneasy about sending him to mainstream.
I am not talking about sending him to a special school like J's which is set up for learning difficulties, as W appears to be neuro-typical, and it would not be suitable.
I do however feel he, and the many other children with vision impairment and blindness should have a school dedicated just for them.
Every aspect would be designed with their needs in mind and all the children would be comfortable in their surroundings, with staff fully converse in sight impairments.
In a mainstream school I would be on edge all day worrying about him. Tripping over simple objects. Falling up or down stairs or steps. Banging into walls, tables, chairs, doors, other children etc.
If you looked at the first video I uploaded in the previous blog entry you can see an example of how he sees stairs. He can not distinguish them at all.
This applies to other everyday things such as tables which are a similar colour to walls or floors. His eyes can not see that they are separate and therefore he is more likely to bump into them. Children are little whirlwinds, W no exception, and whizzing about here there and everywhere, playing chase games, he is likely to crash into many things.
I know children need to be children, but he is my baby and my need to protect him is immense (like most parents).
I want him to be able to learn with appropriate tools that are not different from everyone elses and where he won't be singled out as the 'special needs kid.'
It is early days still, I know, but sitting back and just hoping is never going to achieve much.
I may well have to fight for him to have an assistant to aid him in the first few months. To help him learn the layout of the school. To educate the children into why sticking their foot out to trip him up will not be tolerated. To make sure their resources for him are suitable. It's always a fight though.
Readers of my other blog will know how hard and how much I have to (as well as many other parents do too) fight for (sometimes) even basic things. This is another battle I have had to undertake, and although it is stressful and tiring, I know that I am doing it for the well being of my children , and that is always a good thing.
Saturday 21 April 2012
An excellent (but sad for me) video of what a person with Nystagmus sees. Please watch.
Please please watch this video.
It is applicable for my W from the 2min 55sec mark right to the end.
Please read each part and look at the examples depicted.
It it quite saddening for me to watch as my boy is just so precious to me, and no matter how much I try to understand about his wobbly world, it still makes me sad that he will have to live like this for life.
The part depicting the steps is very true.
I have to guide him when outdoors as he can not distinguish where a step starts as it merges into the floor.
The video link is safe. It is not spam. It is uploaded onto YouTube.
Watch from 2min 55 seconds....
http://www.youtube.com/watch?feature=player_embedded&v=RrqdFKs2Hzw
And if you want to see an amazing woman that has nystagmus, watch this YouTube video.
She is eloqent and really easy to understand.
http://www.youtube.com/watch?v=jsOLLBcwxcY&context=C4ed9be3ADvjVQa1PpcFPxYy0-_KfxR2MVcaX4Q-JkIa_wdPimbVg=
It is applicable for my W from the 2min 55sec mark right to the end.
Please read each part and look at the examples depicted.
It it quite saddening for me to watch as my boy is just so precious to me, and no matter how much I try to understand about his wobbly world, it still makes me sad that he will have to live like this for life.
The part depicting the steps is very true.
I have to guide him when outdoors as he can not distinguish where a step starts as it merges into the floor.
The video link is safe. It is not spam. It is uploaded onto YouTube.
Watch from 2min 55 seconds....
http://www.youtube.com/watch?feature=player_embedded&v=RrqdFKs2Hzw
And if you want to see an amazing woman that has nystagmus, watch this YouTube video.
She is eloqent and really easy to understand.
http://www.youtube.com/watch?v=jsOLLBcwxcY&context=C4ed9be3ADvjVQa1PpcFPxYy0-_KfxR2MVcaX4Q-JkIa_wdPimbVg=
Friday 20 April 2012
The MRI scan and learning to play
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.
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.
Thursday 19 April 2012
Welcome to W's Wobbly World!
Hello!
I am a seasoned blogger and have taken the step of writing another blog, this time dedicated to my youngest son, W, who was born in Feb 2010.
He has wobbly eyes.
The medical terminology is 'Nystagmus'.
As he was born with it, and they have ruled out any explanation for why he has it, the full label is 'Congenital Idiopathic Nystagmus'.
He also has low vision, which I must say has improved since he was last seen by the eye specialist, which is going back to August 2011.
Even before he was born I sensed he was going to be poorly at birth. That mothers instinct. I had never felt it before with my other two sons, but had done when carrying my third child, who I sadly lost in my second trimester. I had a feeling that that baby and I were not destined to meet and I lost her on my middle son's 3rd birthday.
I fell very quickly for my youngest son W, very soon after my loss. I had several early scans to keep an eye on him, but towards the end of pregnancy I just felt odd. I felt that he needed to be with me, now, as inside my tummy I could not hold him and nuture him in my arms.
I had a four day failed induction. It was agony. The pessaries that are designed to soften the cervix
to encourage the breaking of the waters did not do anything. Nada. Not one milimeter of change - over four days and 7 pessaries. It did however render me incapacitated in walking normally and every step hurt.
The medical team however suddenly decided that I should go home for a week or so and come back. I argued that they had wanted him to be delivered, as I developed gestational diabetes during the pregnancy and they wanted me not to go overdue. This in part was because my middle son was born, naturally, weighing 10lbs 8oz, and he was not even classed as over due.
I found out that there were no slots available for a cesarian section as they had had an influx of emergenices and booked sections. This was why they wanted me to go home.
I stood my ground. They had forced chemicals into my body to make it start labour, stressed my body out with it all (and goodness knows what it did to W) and then shrugged and said 'go away'.
So after many, many conversations with the team (never the actual consultant himself, just his minions who do his dirty work and take the flak for his decisions), I was booked for a semi emergency section.
When W was delivered he needed oxygen (quite normal for section babies I was told, due to the sudden emergence from the womb). He was not given to me for around five minutes and I was becoming really anxious to have him.
When finally he was given to me - swaddled tightly and helped propped up against me by a midwife - he had the most grumpiest face I have ever seen. Scrunched up eyes and such a frown.
But then, his eyes opened and we saw each other for the first time, reflected in each others eyes.
He was beautiful.
And then he started rooting ( looking for breast milk). My other two babies had never done that and it was funny to see this natural instinct kick in with him.
Sadly, because of the section my milk took four days to 'come in'.
W had very low blood sugars and was heel prick tested every three hours. His feet turned black from the bruising of the constant needle punctures. He was also cold and needed to sleep on a heat mattress and swaddled up like baby eskimo.
I requested to see the placenta (I am interested in the amazing way our bodies support growing babies in utero) soon after birth, and the midwife wheeled it in on a trolley.
She did her assessment of it with me watching as she saw how interested I was with it all.
What was apparent was the colour. It was grey. Not pink or red. My other two had been pinky red. The time lapse from delivery was not the cause as it was not hours since then.
The midwife commented that my boy was lucky to be outside and not inside with what appeared to be a poorly placenta.
That gut feeling. I knew he needed to be born. I still linger over the what ifs. What if I had just accepted being told to go home and wait another week? What could have happened?
As for getting him well again, well the second my milk came in, W latched on (clever boy!) and it did the trick. His sugars rose almost immediatly and he settled down so much better.
Around the age of four weeks I sensed his eyes had a problem. I thought he was blind. But I told no-one. I was scared. I thought I was being over the top with paranoia.
I asked two friends of mine who had had babies within a week of me about their babies eyes. I noticed W's pupils did'nt react to light. He did'nt squint at sunlight. I tested him by standing at the window, curtain closed on a sunny day, and then opening them, and he did'nt react. They said their babies did.
At six weeks I mentioned it to my husband and he replied instantly that he thought the same but had'nt wanted to tell me.
We had a health visitor review at my house and I told her my worry. When W latched on for a breast feed his eyes wobbled and she came and stood over my shoulder to watch. She agreed it was not right..
To have someone agree with you makes it all real. Not just your imagination. Not just a newborn quirk - eye muscles can be weak at birth as baby has not really had to look too far in the womb!)
The health visitor said she would book a referal that afternoon to the eye clinic.
But she called and told me that in our area babies are not refered until at least nine months old (!) and that there was also a ten month waiting list on top of that. So my baby son with an eye problem was not going to be seen by someone until at least 19months old? I don't think so. In fact I knew so. I was'nt going to let them dismiss him or me.
I spoke to my cousin, K, who was (back then) a 2nd year medical student. I mentioned his eye movement and my fear he was blind, and she said she thought it was nystagmus. As we spoke on the phone I googled it on the laptop, and as she spoke I read and I concurred with her that it did indeed sound like nystagmus.
The next week I spent my life on Google. Bad bad bad. I was in a state.
The following week we had our six week postnantal check up at the doctors. I went first and everything was healing as it should apart from one area, but I did'nt care, I just wanted to get onto W.
I explained to the female doctor about my worry and what I thought it was.
She laughed. She told me it was very rare and could not possibly be that. She mocked me for getting way too ahead of myself.
And then she looked at him. She ummed a little. She got her stethoscope out and dangled it over his face and moved it side to side. She ummed again. She then started counting out loud."One,two,three"
She backtracked and said she too thought his eyes were not behaving as they should and that he was not able to follow the stethoscope as she moved it (babies at six weeks should follow an object held close to their face hence it being a part of the general six week check up).
But then she told me to give it a few weeks. It would probably settle down. His eyes only moved 3 beats at a time, side to side and then stopped for a few seconds, so it might settle down.
It did'nt. In fact it got worse. More beats side to side. And then up and down. And then corner to corner. It was so bad I could'nt look into his eyes like you would a new born. It made me so upset.
I took him back for a second opinion and had done some research into private investigation.
This doctor too was sceptical at the start, but she then agreed that his eyes did need attention. But again she told me what the health visitor had told me - no referal till he was 9 months old.
I then mentioned I would pay for a referal and to see the specialists at the hospital. She said we could see someone the following week then! Money talks it seems.
I was still Googling away and found evidence of brain tumours being linked to up and down nystagmus. It's very rare that it would be a tumour, but it was still a risk. I knew an MRI scan would be needed, long before I spoke to the eye doctor.
Our appointment was where the NHS patients were, but we were treated with a red carpet - all because we were paying for it.
The first person we saw conducted simple light tests. We held him in front of a fan so that the cool air made him open his eyes and then she held a light up wand thing and waved it slowly around him, moving it.
He turned his head! I exclaimed out loud " he can see, he can see" and started crying. I really really thought he was totally blind. He turned his head to wherever she moved the wand to. The distance was only probably 50cm away, but still, he could see!
His eyes did not follow as you would expect, but his head did, and that proved he was aware of the light.
I think my reaction brought it home to the woman conducting the test, that these were real emotions and built up worries, and she gave me the wand to keep!
We then saw the main man. The eye man. He looked at his eyes. Read the basic results. And then mentioned softly about the brain tumour risk, as he was concerned about the rotation of his eyes. As I had already read this it was not a shock and I was actually relieved he was taking me seriously.
W would need a general anesthetic as the MRI would take around 45 minutes and a baby can not be expected to lay perfectly still all that time.
The main eye doctor escorted us personally to the lifts and was so courteous to us. It is amazing what paying for private treatment does really.
I then had a letter come through the mail with the date of the scan.
I will continue this in my next blog entry.
I am a seasoned blogger and have taken the step of writing another blog, this time dedicated to my youngest son, W, who was born in Feb 2010.
He has wobbly eyes.
The medical terminology is 'Nystagmus'.
As he was born with it, and they have ruled out any explanation for why he has it, the full label is 'Congenital Idiopathic Nystagmus'.
He also has low vision, which I must say has improved since he was last seen by the eye specialist, which is going back to August 2011.
Even before he was born I sensed he was going to be poorly at birth. That mothers instinct. I had never felt it before with my other two sons, but had done when carrying my third child, who I sadly lost in my second trimester. I had a feeling that that baby and I were not destined to meet and I lost her on my middle son's 3rd birthday.
I fell very quickly for my youngest son W, very soon after my loss. I had several early scans to keep an eye on him, but towards the end of pregnancy I just felt odd. I felt that he needed to be with me, now, as inside my tummy I could not hold him and nuture him in my arms.
I had a four day failed induction. It was agony. The pessaries that are designed to soften the cervix
to encourage the breaking of the waters did not do anything. Nada. Not one milimeter of change - over four days and 7 pessaries. It did however render me incapacitated in walking normally and every step hurt.
The medical team however suddenly decided that I should go home for a week or so and come back. I argued that they had wanted him to be delivered, as I developed gestational diabetes during the pregnancy and they wanted me not to go overdue. This in part was because my middle son was born, naturally, weighing 10lbs 8oz, and he was not even classed as over due.
I found out that there were no slots available for a cesarian section as they had had an influx of emergenices and booked sections. This was why they wanted me to go home.
I stood my ground. They had forced chemicals into my body to make it start labour, stressed my body out with it all (and goodness knows what it did to W) and then shrugged and said 'go away'.
So after many, many conversations with the team (never the actual consultant himself, just his minions who do his dirty work and take the flak for his decisions), I was booked for a semi emergency section.
When W was delivered he needed oxygen (quite normal for section babies I was told, due to the sudden emergence from the womb). He was not given to me for around five minutes and I was becoming really anxious to have him.
When finally he was given to me - swaddled tightly and helped propped up against me by a midwife - he had the most grumpiest face I have ever seen. Scrunched up eyes and such a frown.
But then, his eyes opened and we saw each other for the first time, reflected in each others eyes.
He was beautiful.
And then he started rooting ( looking for breast milk). My other two babies had never done that and it was funny to see this natural instinct kick in with him.
Sadly, because of the section my milk took four days to 'come in'.
W had very low blood sugars and was heel prick tested every three hours. His feet turned black from the bruising of the constant needle punctures. He was also cold and needed to sleep on a heat mattress and swaddled up like baby eskimo.
I requested to see the placenta (I am interested in the amazing way our bodies support growing babies in utero) soon after birth, and the midwife wheeled it in on a trolley.
She did her assessment of it with me watching as she saw how interested I was with it all.
What was apparent was the colour. It was grey. Not pink or red. My other two had been pinky red. The time lapse from delivery was not the cause as it was not hours since then.
The midwife commented that my boy was lucky to be outside and not inside with what appeared to be a poorly placenta.
That gut feeling. I knew he needed to be born. I still linger over the what ifs. What if I had just accepted being told to go home and wait another week? What could have happened?
As for getting him well again, well the second my milk came in, W latched on (clever boy!) and it did the trick. His sugars rose almost immediatly and he settled down so much better.
Around the age of four weeks I sensed his eyes had a problem. I thought he was blind. But I told no-one. I was scared. I thought I was being over the top with paranoia.
I asked two friends of mine who had had babies within a week of me about their babies eyes. I noticed W's pupils did'nt react to light. He did'nt squint at sunlight. I tested him by standing at the window, curtain closed on a sunny day, and then opening them, and he did'nt react. They said their babies did.
At six weeks I mentioned it to my husband and he replied instantly that he thought the same but had'nt wanted to tell me.
We had a health visitor review at my house and I told her my worry. When W latched on for a breast feed his eyes wobbled and she came and stood over my shoulder to watch. She agreed it was not right..
To have someone agree with you makes it all real. Not just your imagination. Not just a newborn quirk - eye muscles can be weak at birth as baby has not really had to look too far in the womb!)
The health visitor said she would book a referal that afternoon to the eye clinic.
But she called and told me that in our area babies are not refered until at least nine months old (!) and that there was also a ten month waiting list on top of that. So my baby son with an eye problem was not going to be seen by someone until at least 19months old? I don't think so. In fact I knew so. I was'nt going to let them dismiss him or me.
I spoke to my cousin, K, who was (back then) a 2nd year medical student. I mentioned his eye movement and my fear he was blind, and she said she thought it was nystagmus. As we spoke on the phone I googled it on the laptop, and as she spoke I read and I concurred with her that it did indeed sound like nystagmus.
The next week I spent my life on Google. Bad bad bad. I was in a state.
The following week we had our six week postnantal check up at the doctors. I went first and everything was healing as it should apart from one area, but I did'nt care, I just wanted to get onto W.
I explained to the female doctor about my worry and what I thought it was.
She laughed. She told me it was very rare and could not possibly be that. She mocked me for getting way too ahead of myself.
And then she looked at him. She ummed a little. She got her stethoscope out and dangled it over his face and moved it side to side. She ummed again. She then started counting out loud."One,two,three"
She backtracked and said she too thought his eyes were not behaving as they should and that he was not able to follow the stethoscope as she moved it (babies at six weeks should follow an object held close to their face hence it being a part of the general six week check up).
But then she told me to give it a few weeks. It would probably settle down. His eyes only moved 3 beats at a time, side to side and then stopped for a few seconds, so it might settle down.
It did'nt. In fact it got worse. More beats side to side. And then up and down. And then corner to corner. It was so bad I could'nt look into his eyes like you would a new born. It made me so upset.
I took him back for a second opinion and had done some research into private investigation.
This doctor too was sceptical at the start, but she then agreed that his eyes did need attention. But again she told me what the health visitor had told me - no referal till he was 9 months old.
I then mentioned I would pay for a referal and to see the specialists at the hospital. She said we could see someone the following week then! Money talks it seems.
I was still Googling away and found evidence of brain tumours being linked to up and down nystagmus. It's very rare that it would be a tumour, but it was still a risk. I knew an MRI scan would be needed, long before I spoke to the eye doctor.
Our appointment was where the NHS patients were, but we were treated with a red carpet - all because we were paying for it.
The first person we saw conducted simple light tests. We held him in front of a fan so that the cool air made him open his eyes and then she held a light up wand thing and waved it slowly around him, moving it.
He turned his head! I exclaimed out loud " he can see, he can see" and started crying. I really really thought he was totally blind. He turned his head to wherever she moved the wand to. The distance was only probably 50cm away, but still, he could see!
His eyes did not follow as you would expect, but his head did, and that proved he was aware of the light.
I think my reaction brought it home to the woman conducting the test, that these were real emotions and built up worries, and she gave me the wand to keep!
We then saw the main man. The eye man. He looked at his eyes. Read the basic results. And then mentioned softly about the brain tumour risk, as he was concerned about the rotation of his eyes. As I had already read this it was not a shock and I was actually relieved he was taking me seriously.
W would need a general anesthetic as the MRI would take around 45 minutes and a baby can not be expected to lay perfectly still all that time.
The main eye doctor escorted us personally to the lifts and was so courteous to us. It is amazing what paying for private treatment does really.
I then had a letter come through the mail with the date of the scan.
I will continue this in my next blog entry.
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