Accessing Services: The View From a Parent

Alison Thompson

Alison Thompson

Alison Thompson is an author, speaker and mum to Daniel, who was diagnosed with ADHD when he was six. This is her heartfelt account of the troubles she has faced when trying to access services for Daniel.
My son Daniel was diagnosed with Attention Deficit Hyperactivity Disorder 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 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 behind 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 to “Shut up, you tart!” I was mortified.

Daniel Thompson

Daniel Thompson

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 despite his sister being at the same school and an A* pupil!

The final straw came 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 went back to my doctor and begged for a referral back to the paediatrician, and dan age 13 resizedeventually we were seen and Daniel was diagnosed with Attention Deficit Hyperactivity Disorder, Oppositional Defiant Disorder and autistic traits. 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 also leads to hyperactivity and impulsiveness, and the combination of hyperactivity, impulsivity and inattentiveness can be an explosive mix – as I was discovering! 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, 1 in 4 will have had some involvement with the police before the age of 12 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 disorder, dyslexia and dyspraxia, so it’s a difficult condition to diagnose and even more difficult to manage.

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!

2009 aged 12 resizedThe following year we moved house, moved counties and Daniel had a fresh start at a small village school. As I had 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 permanently excluded, with immediate effect, and the school were also advised to report it to the police. I had to take Daniel to our local police station where he sat in an interview room for forty minutes, being questioned on an assault charge. He was just ten years old. No charges were made but 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.

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 ADHD 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. Last summer Daniel suffered two enormous losses in his life – his favourite family resizedteacher left the school, and his father died very suddenly. Daniel claimed he was okay but over several weeks his behaviour deteriorated 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 bad 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, and he now has friends and even a girlfriend! I’m incredibly proud of my son and everything he’s achieved despite the challenges life has set him.

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.

2012 London resizedIt 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.

And that is the message of my story, I guess. All too often, children with special needs, and their families, are set up to fail, and support is 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.

We are very grateful to Alison for sharing her story at our Annual Research Conference.