I was not able to attend the NCSE (National Council for Special Education) Annual Conference this year (November, 2015).

Anne Lawlor from 22q Ireland was able to attend, and has since been in contact with one of the speakers, Gina Grant.

Gina has been very generous and has sent us the text of the talk.  Whilst not 22q specific, it serves to remind us that the issues we all face are the same.

It is presented here:


Good afternoon everyone.

My name is Gina Grant. I am a mother of 6 children ranging in age from 24 to 6.  I know – far too young looking to have a 24 year-old!

The reason I was asked to speak at this conference is because I am in the unusual position of having three children that have specific learning difficulties.

The range of these difficulties is as you will find out extremely wide and varied.  As a mother I feel I could tell you many interesting things about any one of my children, but as today’s gathering is looking at Assistive Technology, I’ll tell you about three of them.

I’m going to be talking to you about my son Edward, who is 14 – he has dyslexia.  My son Christopher, who is 7 – he has Down syndrome, and also my youngest, Francis who is 6 – with a dual diagnosis of mitochondrial disease and autism.

I’m going to start with Francis.  To the outside world, his symptoms are by far the most severe.  Mitochondrial is a condition that affects the body’s energy supplies.  Francis wouldn?t have the ability to carry out physical tasks.  Francis can’t stand, walk, or feed himself as his body can’t produce the required energy.  This means he is totally dependent.

He also is autistic.  Francis does not engage with the outside world.  He does not talk.  He is locked in a bubble, although a very content and happy bubble.  Francis has recently started mainstream school, which has been quite a journey in itself.  But the specific area of this journey that I will be talking about today is the use of Assistive Technology.

It may seem a very small thing if a parent tells you that their child can point at something they want, but in the case of Francis, getting him to do this has taken massive effort.  This would not have been possible without the use of Assistive Technology.  Things as simple as lights with specially adapted switches.  Not an expensive light, a small Minions light with a large green button attached.  If touched the light switches on and if touched again the light goes off – sounds very simple doesn’t it – except that at six years of age this was the first interaction with the outside world, which had so many connotations that at the time it was quite mind-boggling because in that action Francis was displaying awareness, desires, and ability. He knew what the light was, he wanted the light on and he was able to carry out the action, which to me meant that behind the silence Francis was there.

Now with the use of his iPad, we are trying, and in some cases, succeeding to get Francis to point to the things that make a noise or action in the hope that he would eventually show us his preference like orange juice / milk, beans, or spaghetti – simple decisions that we all take for granted.

How far into Francis’ world we will get to is anyone’s guess, how far he is prepared to let us go, no one knows.  But that journey could not even be contemplated without the use of Assistive Technology.

That brings us to my Christopher – he is 7 years of age and he has Down syndrome.  Christopher is a happy, charming very witty little man, who if asked to give the speech would most definitely have you all wrapped around his little finger.

Although as his mother I know that Christopher will face many difficulties in his life.  Christopher has a specific learning profile.  The extra chromosome is associated with impairments in language, cognition, learning, and memory.  So, this leads to strengths and weakness in the way he learns. This is true for everyone.  We know through massive research by Prof. Sue Buckley and others that, without any assessment, it is true for those who have Down syndrome.  So preparation for school should be straight-forward.

AT doesn’t take away the teacher – nor should it replace the teaching.  It is a tool used to encourage the learner and assist where ability may be lesser than their peers.  In Christopher’s case we have applied for Assistive Technology.  One of the request is thst he needs the visiting teacher to VISIT.  He, like all children with Down syndrome, has fluctuations in his hearing.  This could be helped by using sound-field amplification.  This technology allows the child’s hearing to fluctuate without being at risk of missing valuable learning.  Another is (preferably) Laptop rather than an iPad.

Christopher is a “visual learner”.  He learns best when information is presented visually and finds learning from listening more difficult.  IT is particularly well suited to this learning style.  The computer never gets impatient or frustrated by repeated errors, feedback is non-threatening and non-judgemental (not saying a teacher is threatening but busy classroom restrictions on time are a big issue).  There is immediate feedback.

He gets rewarded for his success immediately – e.g., with pictures, sound effects or music, or prompted if they need to try again.

Christopher would benefit greatly from assistive technology. As his Mum it is truly beyond me that so much of this technology exists.  But for some reasons, the “powers that be” feel it necessary to have children and parents perform acts of emotional, financial, and political gymnastics in order for our children to access the equipment.

The last one I’m going to talk you about is Edward.  He is 14 years of age.  Out of the three, he is possibly the least complicated.  He has dyslexia.  All through National School I had concerns about Edward.  I even approached his preschool teachers about his dislike of colouring-in and drawing, but at all stages from there to third class in primary school, I was reassured that Edward was reaching all targets –  that he was a great boy.

He just maybe had some concentration / attention problems and was a loner by choice.  So, I am a proactive parent.  I took these reassurances and worked to get Edward to pay more attention and to concentrate more, forced him into a lot of after school activities do a to encourage his social interactions.

In fourth class Edward started to have more and more trouble with homework until eventually it actually reached the point where Edward had no time for anything else but homework.  He would arrive home have his dinner, then what would follow was an emotional rollercoaster of tears, tantrums, and self-doubt.  Once again I started off on the road to the school to voice my concerns and confusion.  At home – an obviously bright boy – having so much trouble with homework.  I was told that Edward was reading above his level, that he was hitting all the markers that the school had set.

Unfortunately at this point I had reached the end of the road.  I stood and demanded that something be done because there was definitely something wrong.  The school, as a way of trying to pacifying me, agreed that they would run a computer test to check Edward.  The results of the test came back stating a high probability of dyslexia.  When I asked the school what help could be given, they said basically they were not in a position to go any further.

So, we had to go private.  At this stage Edward was in 5th class.  We got the name of the local psychologist to assess Edward.  When these results came back they were quite staggering.  Edwards’s dyslexia was one of the more severe cases that the psychologist had come across.  She referred to Edward as being the classic example.  The reason being that not only had Edward got dyslexia, he also had an IQ over 150, which put him in the 99.9th percentile of the population for intelligence.  The relief and peace of mind that this result has given Edward was immeasurable.  We could account for the lack of ability on some areas and his great ability in others.  As he said, everything made sense.

Edward had started down the road of doubting his own capabilities.  The fact that he couldn?t spell words that other people found simple made him feel inadequate and stupid.

Once again, armed with this knowledge, you are still forced to start performing the gymnastics, trying to put in place something that I feel should automatically be put in place.

I mean.  You would not ask a car mechanic to fix your car using a box of tools supplied by a plumber.  He may very well attempt it.  He may even achieve a reasonable outcome, but he can never perform it to the best of his abilities.  This is what’s happening with children in second level and primary.

We are asking them to perform tasks with the wrong tools, that are not fit for their purpose, and by doing so they may reach an acceptable level, but they will never fulfil their true potential.

I’m not trying to say that my children are supreme or that they should be movie stars, Olympic medallists, or Nobel laureates.  What I am saying is they are individuals who are capable.  Should that be Francis simply pointing at an iPad to tell me he wants, Christopher being able to step in the bus going from one town to the next to work or visit his grandparents by himself, do some shopping, or should that be Edward who wants to, in his words “be the best Trinity has seen?”

For him to achieve this goal, firstly he needs to pass his leaving. He would be unable to pass anything without the use of a laptop.  We have been granted a laptop.  All of the assessments he needed to prove he needs it cost us well over 1,000euro and we have more to go through before he can use it in an exam.

One of the most frustrating things for me is the staggering discrepancies between second level and third level.  Our third level institution is in Letterkenny.  In LYIT every student enrolling sits the computerised test to see if there is any underlying problems such as dyslexia.  Then they are given the results and advised on what help there is.  If they need certain software or a laptop it is provided – there is no stigma.

There is no feeling that you must prove to us that you deserve this.  When someone receives a degree, that degree is not marked to show what tools they used to get the award, as is done in the leaving / state exams.  My point of view is that most of the third level institutes seem proactive on these issues, whereas the second level schools seem to have their hands tied by the Department of Education.

I find it disturbing that for someone who is dyslexic (or has any educational needs), and uses Assistive Technology during the leaving cert, it is marked on the leaving cert.  In my head, this belittles their achievement.  It isn’t stated on this qualification that it was got with the assistance of a pen.

It seems astounding that these tests can be put in place, and in third level institutions where to be honest, the ones in most need of help will have already slipped through the net. Why can’t it be put in place in second level?

I would like to pose this question to you:

My son’s will hopefully go on to be productive members of society.  There are many other children out there who will not get this chance because they will slip through the net.  Their parents may not be able to pose the questions or find the finance’s that it takes to gain access to the assistive technology, which when provided is life changing.  They will have given up on reaching their potential.  They will have given up on their dreams.  They will become frustrated with life in some cases – gets turned into a negative.  The percentage of people being held in Irish prisons who have been diagnosed dyslexic is 25% higher than the general population and, personally, as a mum of a young man with dyslexia, I find that hard.  The technology exists.  What is needed is the access to it, and there is no situation that I can think of where you would let somebody try to complete a task using the wrong tools when you know the right tools are available behind a locked door.

The children of any country are the future of that country.  Whatever excuses can be made for past mistakes – we did not know, we did not understand, we did not have facilities.  These excuses no longer exist, and in 30 years time, if Irish prisons are still housing people who fell into that system through a lack of diagnosis or a lack of equipment or a lack of empathy.  The educators of today and the government of today will not have any place to hide.  We have the technology.  We have the knowledge.  We have the examples – as in my son who was a frustrated, angry young boy that couldn’t cope before the use of technology.  He was struggling and was close to giving-up on education and is now a straight “A” student seriously talking about studying theoretical physics at University.

What I keep wondering is why, or who, it is that’s not taking this issue seriously and providing the assistance and technology where and when it’s needed.  How many Francis’ will never make contact?, how many Christophers’ will never gain independence?, how many Edwards’ will never get their shot at changing the world?.  As a parent, I believe that every child born has potential and that this technology can help them to fulfil that.

There are a few things in life that you honestly get one shot at – I believe this is one of them.  Children grow up once.  WE are here today because we know we can improve one major big part of the experience for them.  We can, with some changes in our education, help them to be the people they need to be.



Posted on 27th November, 2015.  Copyright Conor Mc Guckin