Talk for Etihad event

One cold January afternoon I had to take my son to our local police station. When we arrived we were told it was a voluntary visit, but that if we'd refused to go Daniel would have been arrested and taken to the big city station, where he would have been fingerprinted and photographed and treated as a criminal. For fifty minutes we sat in a police interview room while Daniel answered questions relating to an assault charge.

He was just ten years old.

Now that might sound extraordinary, but actually for families with a child with ADHD it's not that uncommon. In fact, research suggests that one in four kids with ADHD have some contact with the police before the age of 12.

ADHD is a genetic, biological condition where the parts of the brain that control executive functions like memory, concentration and focus don’t get enough stimulation so there’s a deficit in those areas. ADHD can also lead to hyperactivity and impulsiveness, and the combination of hyperactivity, impulsivity and inattentiveness can be an explosive mix. ADHD affects 5% of children - that’s around 500,000 kids in the UK - and it can leads to all sorts of problems. Children with ADHD

are more likely to fail academically, and around 70% of kids with ADHD still have problems in adult life. It’s also common for ADHD kids to have other difficulties such as autistic spectrum disorders, anxiety, depression, oppositional defiant disorder, dyslexia and dyspraxia, so it’s a difficult condition to diagnose and even more difficult to manage.

My son Daniel was diagnosed with ADHD when he was six, but I’d known there was something wrong long before that. He was a fretful and anxious baby who rarely slept, and as a toddler he was constantly on the go. We went to a local parent and toddler group and he was the child you’ve all seen, running round the room knocking over the other children’s Lego towers, climbing the shelves to get what he wanted from the top, throwing paint on the floor and generally causing chaos. At story time I had to wrestle him to the floor to get him to sit still, and even then he’d be calling things out and distracting the

rest of the group.

Daniel was a caring, funny, quirky little boy, with a charming smile and a wicked sense of humour - though he had some strange obsessions. He had a purple teddy bear called Strum who went everywhere with him, and Daniel could not get to sleep if Strum wasn’t there. One day we left Strum at a motorway service station and I did a sixty mile round trip to retrieve him, because I knew what a nightmare bedtime would be without him! For a while Daniel was also obsessed with Only Fools and Horses. He could recite some of the episodes word for word - which was fine until the day he told a friend of mine to “Shut up, you tart!” I was mortified...

But there was a darker side to Daniel too. He couldn’t concentrate on anything for very long and he seemed to drift off into his own little world at times. At meal times I’d have to remind him he was meant to be eating as his fork would stop halfway between the plate and his mouth, and in the mornings I’d leave him to get dressed and come back to find him in his room, one leg in and one leg out of his trousers because some toy or game had caught his attention. But the worst thing was the tantrums. Like Jekyll and Hyde, the smallest thing would set him off and he would turn into a mini Incredible Hulk, lashing out at anyone or anything that got in his way. He’d have several meltdowns a day and they could last for hours. Our home was full of holes in the walls and my daughter and I were constantly covered in bruises.

Daniel started at nursery but he didn’t seem to fit in with the other children, somehow he wasn’t in sync with them, and his domineering personality caused problems. At the end of the year, the teacher recommended I see my doctor because she felt there was more going on than normal toddler tantrums, and I agreed. The GP referred us to a paediatrician who said Daniel was “borderline ADHD” - which meant nothing really.

Daniel moved up to reception class in school and there were problems straight away. He couldn’t sit still, he couldn’t concentrate on the work and he couldn’t resist telling the teacher when he thought she was wrong, which was pretty much all the time. The school put him on the School Action level of support but didn’t actually offer him any extra help. He started to fall behind the other children and the meltdowns worsened as a result of his frustration. They moved him to School Action

Plus and called in the Behaviour Support team to give him some one to one anger management training, and that seemed to help a lot - but after six weeks the extra support was withdrawn and Daniel’s behaviour deteriorated rapidly. The school’s response was to send him home - 16 times in 20 days at one time - and when I asked the head teacher if they could provide more support for Daniel, perhaps through a statement of educational needs, she laughed at me and said he would never get a statement, there was nothing wrong with him except bad parenting .... This was despite his sister, who was at the same school as him, being a straight A student!

The final straw came towards the end of Year 1 when Daniel threw a chair across the classroom towards the teacher. Luckily it didn’t hit her but the school excluded him to the end of summer term. During the holidays, I went in for a meeting to discuss Daniel’s return to school in the autumn, but it was very obvious the school didn’t want him back. The head teacher said she was going to permanently exclude him as it was the only way he would get the support he needed. Finally an acknowledgement that he did need help, but at what price?

Following the exclusion, I saw my doctor and begged for a referral back to the paediatrician, and eventually we were seen and Daniel was diagnosed with ADHD, Oppositional Defiant Disorder and autistic traits.

Following diagnosis, Daniel’s paediatrician recommended initially that we try Omega 3 supplements and various exclusion diets, but they had no effect and he was eventually prescribed medication - the dreaded Ritalin. It wasn’t a magical cure, but it did make a huge difference. Finally Daniel seemed able to stop and think - not all the time, but the meltdowns and defiance did recede somewhat. However, medication was the only thing we were offered – there were no recommendations of

parenting courses, support groups, behavioural therapy or other help.

Daniel spent the next year at the primary unit of a pupil referral unit (PRU), and while I was concerned about the lack of academic progress he made, he did get some one to one support for his anger and poor social skills. It seemed it had taken things getting as bad as they could get for Daniel to get any sort of help.

Fortunately I was a mature student studying for a degree at the time. I say fortunately, because Daniel only attended the PRU on a very part time basis, and if I’d been working I would have had trouble holding down my job. A good friend of mine stepped in to look after Daniel when I needed to attend lectures, which was amazing. Even more so when she faced danger every day: on one occasion she phoned to tell me that she was locked in the bathroom with Daniel outside, threatening to hit her with a plastic guitar!

The following year we moved house, moved counties and Daniel had a fresh start at a small village school. As I feared, he had fallen behind academically but the school were very supportive and keen to address his needs, and for a while everything went well. Daniel was put on an accelerated learning programme and was soon working at the same level as his peers; in fact, he was on the Able Child Register for maths. He was on the school football team, he had a few friends and life was good ... for a while.

But then the novelty of our new situation began to wear off and the impulsive behaviour, the distractedness and the meltdowns started to increase. One day Daniel dropped a packet of Yu Gi Oh cards in a puddle and for some reason he thought that was my fault. The meltdown that followed was one of the worst I’d ever experienced. At one point he hit me in the face with the metal tin he kept them in, and the corner cut my head open. As he watched the blood pouring down my face he blamed me for it, said I’d made him angry. Once he’d calmed down, of course, he was horrified but it was a scary experience for us both, and I became worried about what the future held for him.

He was starting to struggle more at school, too, and while they did their best to support him, with limited funding available there was only so much they could do. One day I was called into school to assist. Daniel had got into a fight with another boy over a game of tag, and as a result he was locked in an office with three members of staff trying to calm him down. It was like getting into a cage with an angry tiger and poking it with a stick - the more they tried to calm him, the more angry he got.

Eventually he tried to kick his way out of the room but he only succeeded in kicking the teachers ...

He was excluded with immediate effect, and soon after it was made permanent as the headteacher believed Daniel posed a risk to the health and safety of both staff and students. The school were also advised to report the incident to the police, which is why I had to take Daniel to our local station to face assault charges.

As I drove home with my small boy sobbing in the back of the car, I was terrified for Daniel’s future. All I could picture was a life of violence and crime, more police interviews, visits to prison. For the briefest of moments I wondered if I was strong enough to deal with this. Perhaps I should walk away and let someone else deal with my son and his challenging behaviour. However, the thought disappeared as soon as it appeared - after all, this was my son, my pride and joy and I would be there for him whatever, I loved him unconditionally. There's a Swedish phrase "Love me when I least deserve it, for that's when I need it most" and I think that's so true for children with special needs.

Fortunately no charges were brought but once again it was the case that support appeared when things hit rock bottom. I was offered a place on a parenting course (though as it wasn’t aimed specifically at children with DHD it wasn’t much use),

and Daniel was finally assessed for a statement of needs and given a place in special school, and it’s been the making of him. Finally he was in a place where the teachers understood him and the way he worked, and could deliver education in a way he could access. For five years he thrived. He did well in his lessons, he took a few GCSEs early, he was a keen sportsman and he had some amazing experiences through the school, like going deep sea fishing and to Barcelona. He also learned

strategies to manage his behaviour – to the extent that he no longer needs medication. The school’s motto at the time was “giving children a second chance” and indeed that’s what Daniel got there - though in fact it was a third chance for him.

It wasn’t all plain sailing though. In summer 2013 Daniel suffered two enormous losses in his life - his favourite teacher left the school, and his father died very suddenly. Daniel claimed he was okay but his behaviour deteriorated rapidly and he started to fail academically - and this in his final year of GCSEs. I was really concerned but the school said he had a bad attitude and they wouldn’t offer any additional support. Once again it took things getting almost as bad as they could get before any help was given. One day Daniel told a teacher his life was so miserable he might as well kill himself ... Cue panic stations! We had an emergency referral to our paediatrician, leading to an offer of anti depressants (which Daniel turned down), an additional diagnosis of Asperger’s Syndrome and the intervention of a specialist counsellor, who made a huge difference to Daniel. But it took that threat of suicide before anything happened...

While it hasn’t always been easy, Daniel has come away from school with enough GCSEs to get him onto an IT course and now, at nearly 17, he’s doing okay. He’s enjoying college, and over the last few months he’s been brave enough to get out there and discover his tribe, the people who understand him and his quirky ways. I’m incredibly proud of my son and everything he’s achieved despite the challenges life has set him.

So what can you - as teachers, TAs, SENCOs - do to help children like my Daniel? First let's look at how ADHD manifests in the classroom, and what specific difficulties these children have.

ADHD presents many challenges, and managing them is never easy. Kids with ADHD have huge problems with working memory and this can mean they have difficulty processing, storing and retrieving information. They also struggle with information overload - they're trying to focus on the lesson, but the distractions of the children around them, the sights and sounds outside and their own thoughts all collide in their head and prioritising what needs dealing with first over all the white noise can leave them feeling frustrated and they either explode or retreat into their own world. Often children with ADHD are over sensitive to the environment so the ticking clock or playground noise that you can hear in the background is deafeningly loud to them, and stops them concentrating. When you take all this into consideration you begin to understand why maintaining attention is such an issue.

Kids with ADHD often lose track of time and if they're given a complex task with many steps they find it hard to allocate time to the most important parts, or to follow through the steps in order, or often to even remember what the next step is. They have a high error rate but often aim for perfection and become despondent at their efforts and frustrated when they make the same mistake over and over. Retaining sequences is difficult, as is retaining and recalling instructions. Ask a child with ADHD to remember a list of three items and they'll probably get the first ... But the second is unlikely and if they remember the third it's a miracle! Of course these inabilities to retain and manage information mean they have poor planning and organisation skills, which impacts on every subject.

ADHD kids, along with kids on the autistic spectrum, have great difficulty shifting their focus from one topic to another. If they find something that grabs their attention they have a tendency to hyper focus to the exclusion of anything else, and asking them to stop one thing and start another without warning can lead to meltdown. Often countdowns are needed to help them prepare for a transition.

Kids like these often have issues with fine motor skills, meaning copying off the board can take longer, and even holding a pencil well enough to write can be intensely frustrating.

Finally, many children with the hyperactive/impulsive type of ADHD simply don't have the ability to regulate their behaviour and stop themselves from behaving inappropriately, and their working and short term memory issues mean they often find it impossible to predict the outcome of their action. That's why kids with ADHD tend to do the same things over and over again - and yes it's frustrating for you as teachers, and frustrating for us as parents, but believe me, it's frustrating for the kids too when they are simply unable to change the path they're headed on.

As I said before, ADHD is the type of condition that presents in many different ways so there is no one size fits all solution. Often managing it is a case of trial and error, and often what works one day won't work the next! However, there are lots of simple things that teachers can try and while they won't work for everyone, they can make a big difference. Many of these are strategies used by the staff at my sons special school, but there's nothing here that can't be done in mainstream schools too.

One of the easiest things to put in action is having the child with ADHD sitting at the front of the class, near the teacher and away from the windows. The more distractions you can cut out, the better. In fact, while group seating works well for most kids, the more traditional two-to-a-desk layout suits ADHD kids. Sit them with a "buddy", a child who is sensible and supportive and not likely to deliberately taunt them or distract them. Kids with ADHD often fidget or wriggle around and it's important to understand that this isn't deliberate - it's as if they have energy in them that has to be released somehow. Try giving the child a stress ball or tangle toy they can fiddle with without distracting the rest of the class, or at story time let them listen while they tidy the library, for example, rather than insisting on them sitting still.

Giving a child a task to do with no breakdown of the steps involved, or expecting them to remember them, is asking for trouble. Break down everything into micro tasks and give the child a copy of it- either on the board or better still on a hand out so they can cross off each step as they complete it. That way they always know where they are in the task and are less Iikely to lose focus or get distracted or frustrated. Using timers is great - kids are more Iikely to be able to sustain concentration for 10 minutes if they can physically see the time. Likewise timed brain breaks are a good idea - giving a child 5 minutes when they don't have to focus helps them get back on track when they do.

When giving verbal instructions make sure you have eye contact with the child and ask them to repeat back what you said. This means you know they've heard and understood and it also helps cement it in the child's mind. Be aware that kids with ADHD often take things very literally. I once asked my son to get his PE bag and he returned with the empty bag, having tipped his PE kit onto the floor. His explanation? I hadn't asked for the kit, just the bag. How could I argue with that?! Keep your language simple and clear, to avoid misunderstandings.

Set expectations at the start of a lesson and review them with the child throughout - waiting till the end of the lesson to find out the child got stuck at the second hurdle isn't in anyone's best interests.

Kids with ADHD thrive on routine and times like Christmas, when the regular timetable goes out of the window, can be traumatic. Try not to throw in changes spontaneously, give kids as much notice as you can that something different is going on so they have time to adjust.

Children like these can be very visual so use concrete aids like blocks and letter tiles rather than expecting them to work conceptually. Computer technology is hugely popular with ADHD kids and can be used in all sorts of ways in the classroom, from illustrating projects to helping them get their thoughts down on paper. And don't forget the simple things either - a pencil grip can make a big difference to a child with poor fine motor skills.

Finally, meltdowns are often the biggest issue facing teachers. I've heard so often that my son's meltdown "came from nowhere" but when I've talked to him it's become apparent that actually it was a series of small events over a few hours that made him more and more angry until he exploded. Ok in a special school with a high staff to pupil ratio, it's easy to look out for the signs. Not so easy in a class of 25, but being aware of the child's mood and watching for increasing frustration levels can mean you can step in before the meltdown happens - before the point of no return. A traffic light system can work well for both teacher and child - Amber as a warning and red for a time out. Try not to make it a punishment though - sending the child on an errand to the school office gives you both time to calm down.

Perhaps my best advice is to understand that the child isn't being deliberately naughty or rude or disruptive and they are probably just as frustrated about their behaviour as you are. They need a lot of support, so praising everything that goes right, offering instant rewards for good behaviour and making punishments relevant to the situation is really important to maintain their trust and help them improve their behaviour.

We are all on this earth to make a contribution to society – and that includes children with special needs. We just have to look a little deeper. ADHD is a neurological disability and nobody chooses to have it – yet there are times when my son has been described as stupid, lazy, or just plain naughty. There is an old phrase, “ We become what we hear,” and the self-fulfilling prophecy is alive and well. Instead of criticising, let’s start telling children what’s good about them, not what’s wrong. Be the person you want my child to be, because children become what children see.

And spare a thought for parents of special needs kids too. While struggling with our child’s needs, we’re also attempting to find time for our other children so they don’t feel left out, carving out time for our partners, attempting to create a relaxed home for our families, loving and accepting unconditionally. We parents are occasionally insecure when it comes to our parenting skills. We are not immune to the glaring disapproving eyes, and mumbles of disapproval. We need

support and understanding from you. Just sometimes, please tell us what we do right and offer to lend a hand. It means the world to us to receive a compliment about ourselves or our child. It helps us to never give up hope.

My son has taught me to be more patient. He’s humbled me. He’s taught me to make the most of what is good now and not worry about what may or may not happen ten years down the road. Because of my son, I don’t take things for granted. As a family, we’ve learned the meaning of teamwork. Most of all, Wmy son has taught me to never underestimate what he can do in this world, even though it will be on his terms and not mine. e are climbing to the peak of the mountain. There might be occasional slips, but we’re climbing higher every day – and we will reach the summit.

All too often, children with special needs, and their families, are set up to fail, with support only offered as a way of picking up the pieces. Instead, let’s work together to ensure our kids are supported to succeed ... in education, in society and in life.

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There are a few key things I’ve learned along the way, and I’d like to share them with you. The first is that you have to be your child’s number one fan. Parenting a child with special needs is hard work and you face battles every day, from school, doctors, other parents, the media, society. There are plenty of times when I’ve felt like washing my hands of Daniel and walking away, but as a parent you just can’t do that, can you? After all, if I can’t be there for my son, if I can’t love him and support him even

at his very worst and most difficult, how can I expect anyone else to? I’ve also learned not to blame anyone for my son’s condition. It’s not my fault, or his fault - it’s just one of those things, and as his mum I need to be there for him and do everything I can to support him, however tired or depressed or frustrated I feel.

I’ve learned to get support for myself, and to ask for help when I need it. Parenting a child with special needs can be incredibly lonely and isolating, and finding support for yourself is vital. While I love my son dearly, and I wouldn’t change him for anything, parenting Daniel has affected my health, my career, my relationships and my confidence, and I’ve only survived through having the support of my family and friends, and through meeting other parents in similar situations. In the early days following Daniel’s diagnosis I was an active member of an online forum for mums of children with ADHD, and now I attend a local ADHD support group where I meet other parents every month. Whatever disability or condition you are dealing with, there are support groups out there, whether that’s online or in the real world. Seek out people who are going through the same things as you, because they understand what life is like, and just feeling less alone is a huge source of comfort. And don’t be afraid to ask family and friends for help. Having even an hour to yourself every now and then makes an enormous difference to your personal well-being and makes life easier to cope with.

It might sound strange, but I’ve also learned to remember to have fun! We’ve been through some tough times and it’s all too easy to get caught up in the never-ending routine of medication, meetings, CAMHS and appointments, and to forget that at the heart of it all is your cherished little child. Children don’t stay young for very long, so reminding myself to make the most of my son, especially on the good days, has been really important for the sanity of our family.

Finally, I’d recommend every parent does their research. It’s all too easy for medical and educational professionals to fob you off if they can see you don’t know what you’re talking about. When Daniel had his first permanent school exclusion I went along with it because I didn’t know there was any other option. Of course, when I did my research I discovered there were loads of things the school could have tried, but because I didn’t know about them, I didn’t put up any resistance. Read as

much as you can about your child’s condition, find out what the school should be doing to help, keep up to date with the latest research and educate yourself about what support is available. When you speak from a position of power and knowledge it’s much more difficult for professionals to ignore you, and you’ll have more success getting support

for your children on a regular basis rather than when things reach rock bottom.