Unfortunatley, Austin, Lawrence, Heidi and Natasha’s stories are not unusual or unique. So many families suffer from the effects of stress and anxiety in children. We would like to share one particular story, Dylan’s story, with you. His brave, loving family want you to know that no matter how dark times may seem, ther is a light at the end of the tunnel.
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Thank you for caring and thank you for sharing. Together we can help children deal with anxiety and lead full, exciting lives.
Our story starts in December 2015. Dylan, our fun-loving, extrovert and infectiously cheeky middle son, didn’t feel well enough to go to school one day. He had been suffering from severe headaches, and doctor’s orders suggested bed rest and time away from school would do the trick. This was unusual for Dylan, as he was always confident and raring to go. He’s the sort of person that makes you feel better when you are with him. Actually, there’s not really a word to describe how he makes you feel when you are in his company. I guess it’s just a warm glow kind and contented kind of feeling.
But in the winter of 2015, Dylan stopped glowing. Something didn’t seem right. His headaches were constant and we couldn’t get him out of bed in the mornings. Christmas came and went, and Dylan had made it back into school in the meantime, but in February 2016 the headaches returned. During this time, we were told by the various doctors and nurses that Dylan had a ‘virus’ and that he should return to school after more rest at home. A period of time followed where he had a few days away from school at a time, and eventually he returned. But so did the headaches, just before Easter in the middle of March. At this stage we were starting to get very worried, so we took matters into our own hands and booked an appointment for him to see a specialist.
Dylan underwent numerous tests, which was a frightening time for all of us. You never want to believe that anything sinister will show up following these sorts of examinations, and you daren’t think about it in case you tempt fate. It’s impossible to not fear the worst, so you can imagine our relief when all tests for serious medical conditions came back clear. However, our relief soon turned into despair.
The headaches continued. The days away from school continued. Even the hospital visits continued. One day Dylan was admitted to hospital for yet even more tests, and he stayed in overnight. This was a very difficult time for all of us for more reasons than one. The doctor eventually sent us away, with all tests coming back clear. He suggested that to get him better we should get him to play with his brothers. We knew this would be impossible, as Dylan couldn’t even sit up unaided. We took him home with no plan and not knowing what to do next. Despair. More headaches and more sleepless nights. Dylan’s insomnia was getting worse, which seemed to be fuelling his illness.
During the Spring of 2016, we saw Dylan disappear bit by bit every day. He stopped engaging, talking, eating, smiling…….living. He lost so much weight it was scary to see. He had no energy and stopped walking. We had to carry him from room to room and do everything for him. Every-day noises were too much for him; they made his headache even worse. He didn’t like daylight. His whole body ached. The only way to explain what we were seeing is that he had put himself on Standby mode, waiting for a better day.
We didn’t know where to turn, or who to speak to. Dylan wouldn’t speak to us, let alone anybody else. Then the break-through came. We remember it well, as we had booked to go on a short-break to see if it would help Dylan ‘snap out of it’ (he had missed a football tour to the Isle of Wight over the Easter weekend and stayed with his grandparents). We took him to a local physiotherapist to see if we could get him help with his aches and pains. We plainly remember the physio (who is also a good friend) looking at us with an expression that said it all. Dylan simply led there without any movement, strength or desire to do anything – Lifeless. The look of sorrow on everyone’s faces made us realise we had a massive task ahead to get the real Dylan back. The feeling of despair on that day was at its peak. Who could we possibly talk to that could help us, and who would actually have any idea of what was going on? We got lucky, as our physio referred us to a specialist team that deal with children who suffer from anxiety issues (although at this stage we still didn’t really know or accept that Dylan was suffering from severe anxiety and depression). Who knew that headaches and insomnia was a sign of all of these things? The doctors certainly didn’t.
During our short-break I had arranged to speak to Ali, who ended up being a very important piece in the Get-Dylan-Better jigsaw. She explained that he was likely to be suffering from a form of post traumatic viral illness, or more likely a post traumatic event condition, but that she would need to meet him to carry out a proper assessment.
The day came when we met Ali for the first time. The words she spoke were the most comforting we had heard during the whole saga. She said “I’ve seen this before. Don’t worry. I know we can get him better”. The session with Ali lasted an hour. She talked. She observed. And most importantly, she started to give us some answers. In her opinion, Dylan was frozen with fear. His headaches were real and they were part of his body trying to tell him that something was wrong. His complete lack of energy was real. It was his body’s way of helping to protect him from the big scary World. Ali told us that these sorts of conditions usually end up being diagnosed as ME if they go on for six months or more. We were three months down the line, so we still had time! We want to share Dylan’s fears, as ultimately it’s these fears and his constant sadness that left him suffering from severe anxiety and depression. Here goes…..
In April 2015, I suffered a serious sporting injury, which left me unable to walk for months and also led to me having an operation. I never realised this upset Dylan as much as what it did; His best friend and soul mate moved to Australia; Our family pet, Ozzy the miniature Dachshund, had to be put to sleep because of aggressive behaviour. Dylan and Ozzy has a special bond, and he blamed himself for us losing him (he was very protective of Dylan and bit somebody when he was being over-protective). Unfortunately Dylan never got to say goodbye because he was in hospital; Elderly family members had passed away; It subsequently transpired that he was being bullied at school; “Dylan is so great, he can cope with the pressure of everything” – or so everyone thought; We moved home. Even little events from the time when he was 3 or 4 years old remained in his thoughts. Wow. We had no idea all of this was going on in his wonderful mind. We pride ourselves on being a very open family, but this just goes to show that children are precious and complicated little people.
Finding all of these things out was the beginning of the toughest part of all. Now we knew the problem, we had to find a way to get him better. Our next stroke of luck was Dylan’s school deciding to get a school dog. This had been on the cards for a while, and the timing was perfect. When Kizzy the Double-Doodle arrived at school as a bouncing puppy, it gave Dylan a reason to be brave enough to go to back. After all Kizzy was scared and nervous too, so they were both in the same boat. So little by little, Dylan went into school. At first it was just for 15 minutes, but over the course of a few weeks it built up; 30 minutes, an hour, up to snack play time. During this time Dylan wasn’t ready to go back into the classroom, but it meant he had invaluable time with the wonderful Mrs Draisey. His best friends would pop into the room where he was working and give him encouragement and support. Every day Dylan’s confidence grew, although it took another 5-6 weeks before he was walking again. Of course, Kizzy needed somebody to walk her at school, so Dylan had to hold on to her lead and be responsible for looking after her! Puppy steps rather than baby steps! He then went to her puppy training, which was a big deal for him, as he would be in a space with the general public. But he had to be brave for Kizzy.
All the while we were working with Ali. She set us little tasks for each week. They may seem insignificant to outsiders, but to us, every single one was a big deal. Building some Lego; a hair-cut (it hadn’t been cut for 3 months!); Colouring in a picture; Walking from his bed to the bathroom; Writing a sentence; Reading a sentence; Going back to school for 15 minutes; Smiling. She even asked him to name her new business venture, which involved helping others the way in which she had helped Dylan – in the swimming pool. He named it Fizzy Fish (Fizzy instead of Physio). The imagination was starting to work again!
Alongside this, we did seek alternate treatments, such as homeopathy and hypnotism. They all carried a similar message and played an important role. Everyone we met was passionate about getting Dylan better. They gave him confidence in his own being. His recurring message was “I am different to everyone else”. Rather than being asked “what’s wrong with you”, he was being told what was right with him. Gradually, and we mean very gradually, Dylan started to power himself up. He resisted many times, and there were days where we all suffered. But by talking to him and introducing an amazing support network around him, we got Dylan back. There were some days where only tough love would work, and we look back now and laugh at some of the situations we found ourselves in. For instance, he was tasked by Ali to walk from the end of the garden to the house. Put it this way, it was dark by the time he managed to do it, as he refused to stand up! But we didn’t mind as the anger Dylan was suffering from meant he was getting better. Another occasion we took him to watch Southampton play football. There were over 30,000 people there and as you can imagine it’s very noisy. He was sat next to meet, shaking and petrified, but he made it to half-time and we left the game knowing he had taken another massive step towards full recovery.
He started horse-riding again, and this was amazing therapy for him. He stood on a football pitch at Leicester City’s stadium and managed to play 3 minutes of football (aided by a friend) in front of a crowd of 5,000 people. He continued to train Kizzy every week. He smiled. He got mad at times. And he did get better!
From a parental point of view, these words sum up how we felt during this time:
Desperate; Overwhelmed; Lost; Guilty; Scared; Helpless; Confused; Numb. We never said to ourselves “Why us?”. It was a case of “Why not us”? We knew we had an amazing family to help us through it, so maybe that’s why we were chosen to endure it.
Dylan was fearful and scared of life. The World was too much for him and things just weren’t fair. He’s had to learn to deal with his anxieties. They all still exist, but he controls them (not the other way around). He knows it’s fine to leave a little space in his mind for these things. He understands he can’t always achieve 100% performance levels. He realises some of his anxieties aren’t a big deal. He knows that talking about his feelings is a great thing to do. His hypnotherapy sessions taught him to switch off and to go to a special place in his mind when he could feel his anxiety levels building up. When he was getting better, his radio silence turned into bursts of anger and outrage. He would shout at us and his brothers, and at times he would punch his pillow and scream at the top of his voice. We let it happen, as these were all signs of him getting better.
We continue to teach him about life as best we can, and we find it better to be open with him about all of the things that are going on in our World. Terrorism and plane crashes and all of the other bad things he can so easily read or hear about. But we talk about the amazing things too. We are trying to teach him that he can’t control other people’s actions and he can’t stop life’s tragedies from happening, but that he can control how he feels about them. I undertook a charity trek in Iceland in July 2016 for Childline, to show Dylan that even after suffering a terrible injury I could take on a big challenge. And we really do now have Dylan back. Although this Dylan is an upgraded version with bigger ideas and with the power to take on everything life throws at him!!
Our story ends with a wag in its tail, as Kizzy’s mum and dad had more puppies, and our very own wonderful Double-Doodle, Buzz, has now been with us for almost a year. Buzz isn’t a replacement for Ozzy, but he’s our wonderful new family member and his love and affection helps all of us on those days when you need a bit of a pick-me-up! For that, we thank Dylan.
To any parents reading this, Ali’s words are true. We’ve seen it before. Don’t worry. We know your son or daughter will get better.
To any children reading this – you are amazing and the World left a little space for you to help make it a better place.
Be brave, and be better, or even be a Happy Spud if that makes you feel better!!