In basic terms, Fragile X is a genetic condition which is the cause of most common inherited learning disabilities. Fragile X is also more common in men than in women, affecting 1 in 4000 and 1 in 6000 respectively.
Fragile X has many associated traits, and not everyone who has it will have all of those characteristics.
There are many potential effects associated with Fragile X, and each individual will only have some of them, in some cases almost none. The effects of fragile X appear to manifest differently in males and females, with females generally being less affected.
Some people with Fragile X will suffer from Epilepsy. This is around 15% of boys and 6-8% of girls.
What are the effects of fragile X on the individual?
Strengths of Fragile X
Good imitation skills
Good visual learning skills
Good long term memory
Sensitivity to others’ emotions
Likeable personalities
Good sense of humour
Different Effects by Gender
Males
More significant intellectual disability
Moderate to more severe learning disabilities
ADD
ADHD
Autism & Autistic Behaviours
Social Anxiety
Hand-Biting
Hand-Flapping
Poor Eye Contact
Sensory Disorders
Aggression
Females
milder intellectual disability
Moderate to mild learning disabilities, if at all
Emotional Health Issues
Mental Health Issues
Social Anxiety
General Anxiety
How Can We Support These Individuals?
One of the most obvious is to notice and encourage the use of some of the previously mentioned, or other, strengths.
Give them plenty of warning before transitions, like 5 or 10 minute prompts before moving betweenclassrooms.
From this, it is also a good idea to have a consistent routine so they know what to expect and when.
Don’t try to force eye-contact, some individuals with Fragile X find this uncomfortable.
Allow them frequent breaks to keep their attention focused on learning, this should include the opportunity to move around the room a little.
Provide visual cues to assist them in following instructions and sequential activities.
Some people with Fragile X are prone to hyper-arousal (high nervous system activation), so it is worth knowing what environmental factors cause it in an individual and to try to minimise this. Examples include sound, light, textures, taste, and smell.
Try not to put too much pressure on them to perform, i.e. not giving a strict time limit for tasks, as it can be difficult for them to cope with.
I came across this article in the news and I couldn’t help but post about it. Essentially, this English school attempted to bring in a policy whereby children who did not bring in their lunch money would not be given lunch that day and would be given bread and butter instead. While I admit this is better than simply not feeding them, it is still a horrific policy.
The problem I have is that it singles these children out. It may be that they had the money and simply forgot it, and that one day of not having a proper lunch would not do a huge amount of harm, though I can imagine it would be very embarrassing. The worry I have is for those children whose families struggle to pay for these meals.
At £2.10 per child per day, I can see that it adds up – £10.50 a week, and that’s just for one child! For these children, not being included with their peers could become a regular occurrence and other than being a humiliating experience, it could be worse for their health. Surely it is better for a child to have a substantial meal in the day than this proposed alternative, a meal with the proper nutrition and enough to fuel them for the rest of the day. I also think that it should be pointed out that for some children their school meal is the main or only source of healthy food and understanding of good choices, to remove this could be disastrous!
Luckily, I am not the only one who sees this in the same was as I do, after complaints from parents, the school had about-turned and agreed not to introduce this policy! However, I still find it worrying that they ever thought it was sensible, fair and inclusive in the first place. Essentially it would be punishing children for something usually out with their control!
If you would like to read it, then please see below:
Nearly every time I log into Facebook nowadays, I am faced with yet another post about the Named Person Act. Somebody always has a problem with it, often people who are not children and do not have children themselves! The same thing happened last night, a good friend of mine bemoaning the legislation, and now I am going to put my own opinion across!
To be fair on some people, simply being told that your child has a ‘Named Person’ surely sets off alarm bells. I don’t have children myself, but I can completely understand how a parent may feel, it does sound like there is someone who is in charge of a child over the parent, so I can see why they may panic. I asked my mum recently and she said “No one has my child’s best interests at heart more than me”. The problem comes when people stop there and don’t put any effort into finding out.
First, I’m going to try to explain what exactly the Named Person Act is and what it offers us. The role of the named person is to support children through the various trials and difficulties of their childhoods, be that moving school, bereavement, disabilities or something more serious. They are a point of contact for the children and families they work with. Before starting school, the named person is a child’s health visitor, and once they start school it will usually be the head teacher at their school, or possibly their guidance teacher.
The Scottish Government’s Website explains:
“What will a Named Person do?
The Named Person will be available to listen, advise and help a child or young person and their family, providing direct support or helping them to access other services. They can help families address their concerns early and prevent them becoming more serious.
They can also respond to requests for assistance from other services in situations where this may support the child’s or young person’s wellbeing.”
Does it say that the named person will take over from parents? Does it say that they will have children removed from their families? Does it say that the named person is in charge of the child in any way?
The answer is definitely no to all of these questions.
Now, my own understanding of a ‘named person’ is that the named person is the individual whom anyone who is concerned about a child can go to to share their concern. This means that concerns are shared with the appointed professional, who then has a full and more rounded picture of the life of the child in question.
For example, say a child’s teacher notices something in a child’s behaviour changes, then the school nurse notices something that causes them to have a concern, a social worker involved with the family is made aware of a change in the family’s circumstances, and finally then the child tells their scout leader something that raises their concern. If this information is not shared, the circumstances could become worse and cause something significantly more serious to happen. The Named Person’s role is to receive this information and build up a picture of the life of the child and inform the relevant professionals, deal with the problem themselves, or simply keep the information on record for future use.
To find out what people think of the legislation, I asked a few people I know for their opinions, here are some of their responses:
“Good idea for vulnerable children to give them neutral support if there are other professionals involved with the child. Not necessary for all children”
There are countless services out their like social workers, Childline which do similar things & I think improving those services would be much more beneficial”.
“I can’t see it being that effective compared to other services”
“a total waste of time”
“it undermines the parents and from what I can tell grants the person access to confidential information about the family and they have no say in the selection “
“I don’t see how this will actually help identify vulnerable individuals when everyone has a state guardian”
“affront to the freedoms of both parent & child”
“we shouldn’t operate on the presumption that all parents need monitoring”
“I guess they are a good thing but if people didn’t understand what level of involvement they would have then I could see why they’d be against them.”
This clearly shows that, while not everyone is in complete opposition to it, most people are not open to the legislation at all. I think that it is essential now to educate people, specifically parents in what this legislation is all about and what it means to them. The GIRFEC documentation refers to the role of the named person, saying:
“The Named Person also needs to help children and families feel confident they can raise concerns and talk about their worries to people who will listen and respect their point of view and work with them to sort things out”
This means that parents need to be informed that the named person is there for them and is not just a faceless professional who’s going to turn on them when things become difficult.
Ultimately, you and your families will probably never need to use your child’s entitlement to their named person, but who are you to deny that right to others, people who need the support or in extreme cases – intervention. To me it is essential the children have as many professionals looking out for them and their wellbeing as possible, and it is equally important that they understand this right and know that they are entitled to all the support they need. As I have already said, the ‘Named Person’ is not there to make parental decisions on behalf of children, but to co-ordinate people and resources, if the Scottish Government are guilty of anything when bringing in this legislation, it’s a poor choice of name for it!
Before I start, I would like to make a few points. First, I am not attempting to write a scathing report on the UK Independence Party, nor am I even planning to demonstrate my opinion on any matter than education. Also, this is not an attempt to convince anyone to vote in a certain way, simply, it is my own reflections on the policies of the party, both positive and negative, and anyone is completely welcome to disagree with anything I say! I know that education is devolved to Scotland, so is unlikely to affect my education or my future career, but I do believe that my reflections are worth making.
I have copied some of the main points from UKIP’s manifesto from their website:
Ease teachers’ workloads by cutting down on assessments, data collection and appraisals
Scrap teachers’ performance-related pay
End sex education for primary school children
Bring back grammar schools and support a range of secondary schools including vocational, technical and specialist schools
Waive tuition fees for science, technology, engineering, mathematics and medicine (STEMM) subjects at university
Make First Aid training part of the national curriculum
“Ease teachers’ workloads by cutting down on assessments, data collection and appraisals”
I can see the point that they are trying to make, which is to reduce the bureaucracy and allow teachers to spend their time planning and teaching. However, I believe that assessments, data collection and appraisals can all be of value. For teachers, these things can be used to set targets and improve practice. I think that they key is in how individual schools and individual teachers use these things so that they are not aimless uses of time, but rather it is extremely meaningful. Assessments are not the be all and end all within education, but I can see that they can be beneficial if used correctly, so they should not be cut down. Ultimately, I can understand what this policy was attempting to do, but I cannot agree with it.
“Scrap teachers’ performance-related pay”
I am aware that we do not have performnce-related pay, but I think this point is worth consideration. Basically, it is saying teachers should not be paid based on their performance as teachers. A survey on the opinions of teachers in Wales about performance-related pay, it was found that “it would be problematic to isolate the performance of individual teachers and deleterious to collegiality and teamwork in schools” I agree with these points, I wonder how teacher would be assessed. Would it be based on attainment within their class? The problem with this is that children develop at different rates, so children who take longer to develop would bring a class average down. This could potentially result in a teachers trying to avoid having certain children in their class. I also wonder if teachers who are low on the pay scale would perhaps give up, and not put in as much effort. Of course, the counter-argument is that performance-related pay could be highly motivating to some teachers who would strive to be the best, but that begs the question: would they simply do it for the increased money, or would they do it because they loved it and they enhanced pay be a bonus? While I can understand this argument, I do not agree. I can see that performance-related pay could become a negative tool and therefore this policy is a sensible one.
“End sex education for primary school children”
This one speaks for itself, it means that many children will reach 12 years old with no understanding of sex education. I believe that it is essential that children know about sex and relationships, but also about their bodies. For me, the aim of sex education is to promote healthy habits in the future, not teaching children to do things that they are too young for.
“Bring back grammar schools and support a range of secondary schools including vocational, technical and specialist schools”
This is an interesting concept to consider. They are advocating the use of grammar schools, which are “the only state schools… that are allowed by law to select all their pupils on the grounds of high academic ability”. This means that children can be put on a completely different track based on whether they do well in the admissions test. To me, this is wrong as it limits the opportunities offered to children, and I think it could be detrimental to their confidence if they fail to gain entry. “The specialist schools programme is a UK government initiative that encourages secondary schools in England to specialise in certain areas of the curriculum in order to boost achievement.” I also have a problem with this, it is all very well to join a specialist school but I do not feel that it gives children enough opportunity to change their minds. They may want to be a dancer or performer when they are aged 11 or 12, and then decided they want something entirely different from their lives by the time they’re 16 By then it would be too late to change their minds.
“Waive tuition fees for science, technology, engineering, mathematics and medicine (STEMM) subjects at university”
This could seem like a positive move, but to me, I see strong bias in favour of people who are more academic who would be most likely to study a STEMM subject. This would mean any creative subject would require the payment of tuition fees, such as: Art, Music, English Literature or Performing Arts. These people on lower incomes may feel pushed to apply for STEMM subjects just because they would not have to pay for them and go on to struggle with the course content. This means that creative or arts subjects would only be accessible to those who could afford tuition fees, limiting the choices for those from lower income families
“Make First Aid training part of the national curriculum”
I do not see any problems with this policy. The number of people I know my own age who have no first aid skills is very high. St John’s Ambulance’s research says that two-thirds (59%) wouldn’t feel confident trying to save a life. This is a huge number of people with no skills in this area, and that does not account for the number of people with out-of-date skills. If every child had this as a mandatory part of their education it would allow them to build up a highly useful skill set which they will be able to use throughout their lives. Also, I believe that it may be something that children who struggle with academics may find they are good at and could be a means of building up confidence in some children. It goes without saying that any training would have to be age appropriate.
My final point comes as a result of a group activity. We had to get into groups and research a political party and I was in the UKIP group. Something that I became aware of was that some people did not even try to be impartial and talk about their party without also giving their opinion. While this was in a peer setting, as opposed to a teaching one, I have become aware that there will almost definitely come a point in our careers where we have to teach about the political parties. It will be essential at that time to be completely impartial. On 1PP1 last year, I taught a bit about politics around the time of the 2015 General Election. I had to be very careful, even not to agree with anything children said. This is something that I think will be very important to remember throughout our teaching careers.
