Tuesday 25 September 2012

Reflections on My Year in the Nursery with a Visually Impaired Boy

Zoe (look back at post on February 1st 2012) worked with one of my VI children for one year to support him during his time in the nursery. While there she made a big difference to his quality of life and education. She created a wide range of resources and was totally dedicated to ensuring Mark made good progress which he did. I asked Zoe if she would kindly sum up her year with Mark and suggest how she felt it went. The following is a brilliant account of her thoughts on that year. I hope the reader enjoys it and will glean what they can from her experiences. Zoe is now pursuing her chosen career path of being a psychologist, where I am sure she will make her Mark (no pun intended). 

It has been a truly amazing year for me and I have learned so much more than I had anticipated when I accepted the post as Mark’s LSA. In fact, it has taken me while to write this article because I have been struggling to put into words quite how privileged I feel to have been accepted into Mark’s world. It’s hard to understand unless you have been lucky enough to spend time with him. He is truly brilliant. I have mentioned in my previous articles how in his element he is when he is thrown into a role-play situation, but I have not explained quite how limitless and wonderful his invisible, magical world really is.

Most of the children in the nursery play ‘mummies and daddies’ and ‘cops and robbers’ as you might expect. But Mark’s imagination is in a league of its own. In our most recent adventure we were Prince Phillip and Princess Margaret (I realize this is an odd couple but I don’t make the rules) caring for our sick dogs. Next, we were off to a royal ball which was promptly over-run with pirates who were looking for a magical ball which possesses the power to destroy the world. Luck was on our side though as the ever-reliable Fireman Sam happened to be close by and was able to single-handedly save us all. Unfortunately Fireman Sam then fell ill with Chicken Pox after a nasty encounter with a particularly vicious chicken on his way home.

I have thought about this a lot and I wonder if one possible reason for Mark’s highly developed imaginative play is that it is one of the few things on which visual impairment has no bearing.

Having said this, he hardly lets his limited vision get in the way of completing his everyday tasks. In fact, Mark has progressed so much that it is almost as though my original article was about a different child. The majority of the issues he had when we first met have since been dealt with and overcome.

He now recognizes most of his classmates and all of his teachers and will refer to them by name. He is less tactile defensive these days and will regularly take part in cookery class where he will happily stir batter and kneed dough (albeit a little more gingerly than his peers). He still won’t touch glue but can be persuaded to paint his hand when making prints as long as he can wash them the moment he has finished.

 He is on target with his alphabet and his numbers (in fact I would say he is a little pro).

Working on the computer is probably his favourite thing to do at nursery. With an enlarged cursor he is amongst the most highly skilled and has excellent mouse control. However, he would certainly benefit from a larger monitor, which I am hoping will be provided for him as he moves up the school.

Mark also has a great mobility teacher who has been teaching him to be more considerate of others (e.g. not to push people out of his way) and how to navigate safely and thoughtfully though his environment. This has been extremely beneficial to Mark and I have seen some real improvements in his behaviour. He is far more considerate of his friends now and will help them up if they fall over and will say ‘sorry’ and ‘excuse me’ without being prompted by an adult. He is also getting used to taking turns during activities - something that had been a problem originally.

Mark and I have also worked really hard on improving his cutting skills. This is an ability I have always taken for granted, not appreciating how difficult it is when your depth perception is less than perfect.  I was faced with a lot of resistance from Mark at first, but we persevered. I cut out narrow strips of brightly coloured card and held them taught in front of Mark. These were fish that were going to be eaten by the hungry crocodile (scissors). This fine-motor movement of opening and closing scissors using just one hand has become much easier for him although it definitely still needs work to catch up to some of his classmates.

 Another breakthrough, which I really cannot take any credit for as it took even me by surprise, is his new desire to hold a pencil. Never before would he voluntarily draw a picture, but in the last month he has started drawing pictures for his friends to take home. I think this is incredibly promising and reflects how much more refined his fine motor skills are becoming.

Maurice asked me to include some photos of recent resources I have made for Mark for use in nursery. I’m afraid I don’t have many things to show as I have been working on just a couple of quite time-consuming bits. The first is a mini-beasts textured counting book which I was able to finish just in time as mini-beasts became the theme for the nursery. It only goes up to 5 but we use this as a platform for simple addition. For example, ‘if two snails have a play-date with five dragonflies how many will there be?’ All the bugs are detachable and Mark loves arranging them into different groups and comparing the sensations of all the different textures. I used coarse, silky and fuzzy fabrics.

I have also been working on a general activities mat which is geared towards developing fine-motor skills. On this mat I have sewn a few different pockets. I knitted one for a bumpy texture and added a button and buttonhole for closure. It is Mark’s job to open and close this pocket carefully. Another pocket also has a button to fasten it but instead of a buttonhole it has a fine loop sewn onto it.  This one is trickier to get open and is intended for Mark once has mastered opening the first pocket. I have also attached an old purse with a zip which Mark can practice carefully opening and closing. The little beads add a nice texture for him I think. Small toys can be placed in these pockets as an extra incentive to get them open. I also sewed on some ribbon so he can eventually practice tying a bow. I had also planned to sew on a picture of a shoe and add some laces so he can practice lacing but unfortunately I ran out of time.

Overall, I would say that Mark has conquered nursery and is ready for reception. I am sure that this will come with its own set of new challenges and obstacles but this will no doubt be the case for all of his classmates.

So now I leave him in the very enthusiastic and capable hands of his new LSA who will see him through this exciting transition.

I would really like to thank Maurice and all the nursery team who have helped make my job such a joy and have taught me so much. I hope they all know how much their help has meant to me over this past year. I will miss them all and Mark very much.

Saturday 22 September 2012

Ocular Albinism, Light-sensitivity & Dancing Eyes

Peter is just starting secondary or high school. He has finished his primary education. Peter is an able young man who happens to have an eye condition which he finds quite disabling. It is a condition which many people do not understand and is not too easy to explain. Children with an eye condition often have features that are unique to them. For this reason to have the students explain for themselves is so helpful since I as the VI teacher can only talk in certain generalities. Peter helpfully explains how he sees and what needs to be done to help him in his schooling to access the subject content to the same level as the other pupils. 

Nystagmus almost always seems to be associated with albinism or ocular albinism. Nystagmus reduces vision, causes fatigue, and often results in an unusual head turn, which is as automatic to the sufferer as blinking. He just automatically finds the best position to see. The time of day affects visual clarity in a way that non-sufferers cannot fully appreciate. Peter is at his best visually in the morning when he is fully rested, but as soon as tiredness kicks in his eyes lose their focus. Stray light coming from the side windows can also affect him in quite substantial ways, in that he appears to be unable to control his eyes and stop them turning to the light. 

There are various ways of adapting to the symptoms of ocular albinism. Wearing a cap or tinted photochromic spectacles are two ways. Young people often do not like to wear glasses because other children can tease them. This is especially so if the glasses are different from the normal glasses. Tinted glass can draw attention and cause embarrassments. So it is no wonder that youngsters like Peter prefer not to wear coloured glass, even if it could make a difference to him. No one likes to be different, however much you explain to them that no two people are the same. We all like to be the same and to feel accepted by the group. That is very natural. Albinism and its ocular variant do tend to emphasise difference and children fight hard to avoid the negative implications of their visual difficulties. 

Nystagmus is not always that obvious. Even close up the eye movements are subtle. But it is one more reminder that the dancing eyes can be more pronounced at some times than others. Albinism sufferers in addition usually have an imbalance in their eyes. Both eyes do not work perfectly together. One eye is weaker than the other. Peter's left eye is most affected and this leaves him with some of the usual difficulties of balance and depth perception. Catching a small ball can be a challenge especially if it is white and not brightly coloured. 

Summary of how to adapt materials for Peter

Interactive Whiteboard
1.     use large letters at least 3-4 inches tall
2.     use a simple font like Arial
3.     avoid BLACK, use colours that give good contrast
4.     turn off the ceiling lights to avoid glare
5.     printed letters are easier to see than handwritten text
6.     always talk down what you have written , i.e. read out at least once what is on the board

1.     use text that is 28 point. 18 point is barely accessible, but anything smaller is not accessible.
2.     In handouts use clear fonts with good spacing
3.     Enlarge diagrams and avoid poor copies / poor quality images. Colour is much more accessible than black and white.
4.     Use yellow paper where possible; ensure the contrast between text and paper is good. Blue text on yellow paper is ideal. Black on yellow is acceptable.
5.     Avoid writing over pictures.

In groups
1.     Keep close to him so he can see your face or gestures.
2.     Use as much description and explanation as possible.
3.     Address him at least once in a session so he is ‘positively discriminated’ and feels included.

Working in the classroom
1.     from time to time check him out to see he is on task.
2.     Try to avoid asking ‘can you see?’.
3.     It is better to enlarge handouts BEFORE THE LESSON.

Exams and tests
Modified question papers (in the UK) come generally in
-       unmodified enlarged (A3 size copy);
-       modified enlarged 18 point (B4 size);
-       modified enlarged arial bold 24 point on A3 paper.
It is advisable to ask for MODIFIED ENLARGED PRINT ARIAL BOLD 28 point. Although boards usually only supply modified enlarged print Arial Bold 24 point it is worth asking if this size can be produced as it does happen.

Sunday 16 September 2012

Disability Benefits for Children in the United States

The Paralympics have without doubt raised the public awareness of disability issues in the UK. Hopefully that is true also in other parts of the world. This article concerns disability benefits. Although this blog was primarily designed for the UK it is now accessed globally. I was sent this article this week and I think it deserves an airing as it provides a cross-cultural perspective to the whole area of disability benefits. Moreover some of the parents I have worked with have returned to the USA in the past year and it may be useful for them. So I commend this article and thank the author for taking his time in writing it. 

Social Security Disability (SSD) is a U.S government program administered by the Social Security Administration and designed to provide financial relief to those who are unable to work due to a disability. You can apply for either Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) benefits. SSDI is intended for individuals who are unable to work for at least a year due to their disability and have paid Social Security Taxes (FICA taxes) for 5 out of the last 10 years. SSI, on other hand, is intended for those who do not have the necessary work history.
When most people think about Social Security Disability applications, they imagine applications filed by disabled workers who are no longer able to perform the duties required by their work due to the severity of their disabling condition. The truth is that many of the disability applications that the SSA receives are filed on the behalf of children who are suffering from severely debilitating conditions. The following information will help you understand the disability claim process for a child and how a child can receive Social Security Disability benefits.
Who Qualifies?
Children who are under 18 years of age may qualify for Supplemental Security Income (SSI) benefits. Those who are between the ages of 18 and 22 may qualify for SSDI benefits if their parents have earned enough work credits to qualify for these benefits.
In order to qualify for SSDI or SSI benefits, a child must have a physical or mental condition that has a serious impact on his or her activities and the condition must be expected to last at least one year or result in death.
How to Apply
In order to apply for Social Security Disability benefits for a child, you need to go to the SSA’s website and fill out the Child Disability Report. This is the first step in the application process. If you do not have access to the Internet, you can visit your local Social Security office to obtain the form.
When you file the initial application, be sure that you provide as much medical documentation as possible to support your claim. If you do not provide the information during the initial application process, the examiner in charge of the claim will likely request copies of medical records when the file is assigned to him or her.
The examiner who reviews your child’s claim will determine whether or not your child’s disability prevents him or her from participating in age-appropriate activities. In order to do this, school records will also play a part in determining the eligibility of your child and you will need to provide these records or sign a release allowing the SSA to obtain the records in order to process your child’s claim.
Filing an Appeal
If your child’s initial application is denied by the Social Security Application, you have a right to appeal the decision. This will likely mean a hearing before an administrative law judge. This is where you will plead your case to the judge, who has the power to overturn the SSA’s decision and grant your child the benefits he or she needs. It is highly recommended that you retain the services of a disability attorney when attending a disability hearing as an attorney is familiar with the disability laws and how specific laws can help your child’s Social Security Disability case.
If the hearing results in further denial, there is still hope. You can submit an appeal to the SSA Appeals Council and, if that does not work, further your appeal to the district court. Again, it is crucial that you work with a disability attorney if you are denied benefits during the initial stage of the application process as you will need the help of an attorney to navigate the steps of a disability appeal and increase your chances of a successful appeal outcome.
If you are worried about the cost of a disability attorney, you will be happy to know that these professionals work on a contingency basis. You will not have to come up with any money up front. The attorney only collects a fee if you win your disability case. If the attorney’s services result in the award of disability benefits to your child, that attorney will receive 25 percent of the back pay that is awarded to your child by the SSA.