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Its Joshua’s 3rd Christmas this year. The first Christmas Josh was too young to understand what was going on, a little like his sister Amelia. The 2nd Christmas josh was more aware but to be honest he would have been happy with a big card board box.

This is the first year Joshua has had an advent calendar. The problem we found was that the numbers on the calendar are far too small for Joshua to read, this wasn’t helped by the busy background. Josh loves to get involved with games reading and counting numbers, especially games that involve opening doors to find chocolate

When we purchased Joshua’s calendar it didn’t cross our minds to think about the size of the numbers on the doors (thinking back it should have been obvious), however  we know now and hopefully this post will help others

Next year I will make sure I hunt around and choose an advent calendar more appropriate. I’m sure the RNIB or such organisations produce there own calendars more suitable, or alternatively write on the doors in a clear visible pen.

We were leaving the in-laws the other night and I was surprised to see that Joshua had pointed out the Moon and stars (he knew what they were). This is probably the first time I think he has noticed them, the sky was clear and the mood was full and shining. During the day Joshua cannot normally look at the sky especially when it is bright and the sun is shining, it was good to see that he was able look out into the night sky.

I thought I would write a quick post about a product that I think is fantastic for all toddlers. At the age of 2 ½ Joshua is walking and running about all the time, which is great when in a safe and secure environment. However when we are out and about we take Joshua’s day sack, a backpack for toddlers with strap for the parents to hold. This is a fantastic idea as it enables you as the parents to keep control of your toddler’s movements when out in busy places like towns. They are nice and small, toddler size back packs which can hold toys, nappies, wipes etc. An alternative to toddler straps.

When it comes to Joshua’s Nystagmus this offers other benefits, it has saved josh from falling head first and tripping over on many occasions.  It’s in new environments that Josh could potentially hurt himself and this is a great asset to help prevent such accidents.

Take a look:

http://www.littlelife.co.uk/html/toddler_daysacks/index.html

These are the main things Joshua has struggled with due to his Nystagmus so far.

Uneven sufaces

Joshua often misses steps and trips when walking on an uneven suface’s. This is usually only a problem in an unfamiliar surrounding as he quickly remembers the hazards in our home or places he visits reguarly.

Sunlight

He seems to be very sensitive to light and always wears a hat when going outside if it is bright. Even a bright cloudy day can cause problems as the sun reflects off the clouds and bounces up after hitting the pavement. At the moment Joshua refuses to wear sunglasses. We were also told that wearing sunglasses a lot in childhood can make your eyes more light sensitve. We purchased a shade for the pushchair which was brilliant. (Shade a babe) When the light does glare Joshua finds getting about much more difficult and can miss obsticals in his way, such as toys/objects on the floor.  Moving objects he may also miss, such as he may bump into playing children.

Change in enviroment

Joshua when on the move misses changes in the enviroment around him. for example if his is running and somebody opens a door to walk through his vision is not quick enough to see it and he would run straight into the side of the door. The same goes for a running child he often will bump into them causing injury. This is why we look like mad over protective parents at the park etc as we are constantly running around and following him. Obviously there is a limit to that and we must also ensure he has his independance.

Joshua always seems very unhappy for the first 30 minutes after a nap. I am sure this is down to him being disorientated due to his Nystagmus which always seems worse when he first wakes.

He stands almost on top of the television to watch his programmes. After speaking to other parents this is very comon for them to do.

Judging distance

Judging distance his difficult for him, for example last week he went to kiss his baby sister and head butted her as he thought she was further away.

Books and puzzles must be clear and not have busy backrounds.

Tiredness

Joshua will get tired much more easily if there is a lot going on. It takes alot more effort for him to see when he is in a busy enviroment and he is having to work hard. I was told by a visual impairment teacher to try and keep things simple so he isnt having to work so hard to see. For example give his dinner to him on a plain plate that contrasts to the food. if he is given his dinner on a pictured colourful plate it is much harder for him to distinguish the different types of food.

Null point
The null point is the position in the eyes that he can keep his eyes more still. This for joshua is the top right, Joshua has a head tilt when adopting this position. The worst postion for Joshua to see is looking down.

Parks
parks,playgrounds and play areas seem to pose problems for Joshua as it is these sorts of enviroments that seem to have the most hazards.
There are many uneven sufaces, drops and holes in play equipment (firemans pole etc).
swings – Joshua will often run behind them
running children – including Joshua
There is so much going on that he finds it difficult to focus, although does cope well.
Has mad parents running around after him, to ensure less injurys.

these are a few that spring to mind. I will update if i think of anymore.

Very young childrenBlind and partially sighted children lack the visual stimulation necessary for learning about the world around them and for developing communication and social skills. They will therefore require more active stimulation and attention than a fully sighted child.

Communication and social skills
Blind and partially sighted children require much more physical and verbal contact to compensate for sight loss. For example, simple forms of communication like smiling may not be possible, and this in turn will affect social skills and bonding. Therefore a blind or partially sighted child will need far more touching, cuddling and verbal reassurance than a fully sighted child. According to the RNIB survey ‘Blind and partially sighted children in Britain: the RNIB survey 1992’, it is stated that 26% of blind and partially sighted children have speech difficulties and there has been no significant change to this figure. Therefore a blind or partially sighted child may also need extra help to develop speech and language skills. This extra attention could consist of formal speech therapy as well as more intensive verbal communication by parents.

Development of daily living skills
Although children do not all develop physical skills in exactly the same way, it is possible to identify ages by which most children develop particular skills. Since visual impairment affects mobility, spatial orientation, depth perception, balance, co-ordination and manipulation; a child may well take longer to develop life skills. For example, the RNIB survey ‘Blind and partially sighted children in Britain: the RNIB survey 2004’, showed that whereas most non-disabled children could walk by 18 months, 13% of the blind and partially sighted children were still not walking by two years of age. The following guide gives an idea of the average ages by which most children have acquired specific skills. Any help required with a particular task beyond the relevant age band should be counted as attention for DLA purposes.  6-10 months: sits up without support, crawls, pulls him/herself up to stand,
passes objects from hand to hand  8-12 months: picks up and eats food  10-16 months: walks unaided, drinks from a cup 14-24 months: uses a spoon to pick up and eat food, plays with building bricks, removes easy clothing, throws a ball  18-24 months: scribbles with a pencil or crayon, kicks a ball  2-3 years: pedals a tricycle, draws straight lines 4
3-5 years: uses a knife and fork  4-5 years: hops on one leg.

Development through play
Blind and partially sighted children will require much more active attention to assist and encourage them to play. Specially adapted or tactile toys alone do not solve the problem. A blind or partially sighted child may need help locating toys and picking them up after dropping them. Difficulties with locating or manipulating toys will inevitably frustrate a child. They may need assistance and coaxing so that they persevere with particular activities like drawing or painting. In CSDLA/655/2002 the Commissioner said: “I consider that carrying a child around to introduce her to the world by tactile means, and what was involved to enable the claimant to sit up unsupported, could properly be regarded as ‘attention’ in connection with the bodily function of sight.”

Supervision
Most young children are continually supervised. However, a ‘safe’ play area for a sighted child can be a hazardous obstacle course for a blind or partially sighted child. There will be an increased risk of tripping over toys or bumping into furniture. This may require a much more direct form of supervision. The ‘Disability Handbook’ recognises potential problems that blind and partially sighted children have. In paragraph 3.1 of chapter 39, it advises that: “If the child is to overcome the disability by being trained to develop effective means of communication, considerable attention must be given by others to this task. In addition, a child who is severely blind or severely deaf initially requires substantially more attention and supervision throughout the day than that required by a child of the same age to protect the child from danger.” School age children Children above the age of five will encounter new problems when they start to attend school. Poor visual acuity will inevitably hamper educational progress. Poor mobility and orientation will make a school environment much more dangerous. A blind or partially sighted child may therefore require a sighted person to provide help with the following in relation to schooling:

• Reading books and text where enlargement is not practical, reading for long periods of time, reading from boards, reading notice boards and identifying coins and notes.
• Describing pictures, maps, diagrams, charts, scientific experiments, computer graphics – it may be impossible to represent these in tactile or non-picture forms. Blind and partially sighted children may require verbal assistance to recognise other people at a distance.
• Guiding to and from school should count as ‘attention’. Blind and partially sighted children will also need more assistance to enable them to find their
  way around their school, operate in the playground, and avoid bumping into obstacles or other children and take part in physical education. School age children with a visual impairment may still have poor mobility skills. According to the RNIB survey ‘Blind and partially sighted children in Britain: the RNIB survey 2004’, only 16% of blind and partially sighted children under 12, and 36% of those over 12, have had mobility training. The need for guiding on unfamiliar routes will count towards the mobility component. Older children who undertake journeys on their own may still require guidance to enable them to follow directions along the route.
• Additional help maybe required by blind and partially sighted school children in locating and cutting up food at mealtimes, ensuring they are clean after eating, ensuring they are clean after using paints and ensuring they are dressed and groomed properly after physical education. Blind and partially sighted children may take longer to master certain dressing skills such as tying shoelaces or ties. Any assistance with homework, in the form of reading or describing texts or diagrams, should also count as attention.

source: www.actionforblindpeople.org.uk

Over the last few days Joshua hasn’t been well at all. I thought I would write about some of my observations about how being ill affects Joshua’s Nystagmus.

He’s had a really bad cough and cold in which I have noticed he’s Nystagmus is far more obvious with he’s eyes moving side to side at a more noticeable rapid rate. This is probably the worst I have seen he’s eyes move in a while. Joshua is normally such a fun happy child, and although I know he has a cold and cough (this in itself will make him grumpy and not himself) but with his increased eye movement it is really affecting him. He has been falling over a lot more and getting extremely frustrated with himself, us and things in general. His balance has noticeably changed falling over, bumping into things (more than usual) which only adds to his frustration, although he does pick himself  up and gets on with it. I’m sure he his getting used to all this and learning to cope the best he can.

Josh is also going through the potty training stage. Up until this week has been doing very well slowly but surely moving towards the ultimate goal of ditching those nappies, however this week has been a total setback.

I’ve been checking on Joshua during the night, more so than usual, to make sure he is ok. Each time I checked I kept finding him on the floor, asleep, it seems to disorientate him sum what more. So if you have a child that’s with Nystagmus, depending on what stage they are, i.e. recently moved from cot to cot-bed its worth checking them more often. It is possible that this is unique to josh but none the less something to watch out for as know body likes sleeping on a hard floor.

I hope he gets better soon.

Note: (Joshua is currently 2 years and 4 months old)

Jen and I will be attending the Nystagmus open day Saturday 3rd. This will be our first time at the open day and as such will be interesting to see what Nystagmus research and development is out there. Personally I’m not really sure what to expect but I’m looking forward to going.

I hope to take some photos of he event and maybe some of London (perhaps I might see some famous people), depends what the atmosphere is like when we get there. I don’t want to be the only person snapping away like some strange weird person.

I will also update on the event itself so watch this space.

Welcome to Nystagmusblog, created by Ashley and Jennifer Bacon.

Our 2 year old son Joshua has been diagnosed with Idiopathic Congenital Nystagmus (early onset Nystagmus). I want to create a place where as parents we can blog our experiences of Josh growing up. I hope this will be a useful source for other parents that have children and have been diagnosed or perhaps know someone with Nystagmus.

I thought of the idea of creating such a site after coming across the theshiftyeyesblog.com. If you have any suggestions, questions or areas that as parents we might be able to answer please comment or if you would prefer to remain private please contact us.