Joen

Joen was four years, 8 months old and had met all of his milestones as he grew up. He was proud that he did what we asked of him and enjoyed stories, being outside in nature and interacting with his family and friends. As he was the youngest, he would often ask if he could run after his sisters on the pavements. We would answer, “Yes, but be sure to stop at the end of the pavement.” Joen would do just that: run till the end of the pavement and stop before stepping out onto the road. He would then wait for us to get there before continuing his walk with us. He was inquisitive and always asking questions. 

When he was slightly younger, Ellie tested him by leaving a sweet on the table and asking him not to touch it till she returned to the room. Joen looked at the sweet and kept looking for his mum to return but did not touch it. He waited about two minutes till mum returned and said he could have it: then he enjoyed his sweet.

When COVID hit, Ellie decided she wanted to move closer to her family, as her grandparents were getting old and the distance created by the lockdown had intensified her wanting to be closer to them. We moved to a tiny village, closer to her parents, but still close enough for me to commute to the school where I worked.

Shortly after this Joen was unusually quiet. Due to COVID and the house move, we put this down to too many changes and decided we needed to give him some time to adjust. We took him to see his new school which he would be starting in September. He enjoyed seeing the school and seemed to look forward to his start there. A couple of weeks before school started, and his fifth birthday, on 3rd September, he woke up, shaking his arm in front of his face while repeating a single phrase, “I win; you lose!” He seemed anxious and kept wanting to be close to his parents, never wanting to leave their side. When we went to the shop to get him a new pair of school shoes, the repetition of, “I win; you lose!” became faster and more manic. He shook his fist as he did this and, having worked with special needs children, I recognised the autistic-type stimming of his behaviours. I know autistic people do this to mitigate their anxiety and assumed Joen was doing it for the same reasons: something was making him anxious and he didn’t know how else to cope!

He rapidly lost his ability to identity colours and would say blue for everything. He could no longer identify animals that he knew and loved. He no longer recognised Spiderman which only days previously was his favourite super hero! When asked his sisters names he couldn't find the words. 

When he started school, we told the teacher that Joen had recently changed and that we didn’t know what was wrong. We found out later that they believed Joen was severely autistic and that we were deluded in believing he had ever been able to speak! He was given a one to one Teaching Assistant to support him in class and we were invited to after school meetings to try and support Joen at home as well as at school. When we showed staff videos of Joen at home before his regression, they were astounded and grew tearful. They could not believe the difference between his before and after and they became Joen’s biggest advocates in trying to support us to navigate through this time.

As time passed, Joen stopped being so clingy and instead showed much more ADHD tendencies, running around the house, climbing up on furniture and jumping from one object to another. The only times he seemed to calm were when he was being pushed hard on the swing or in long drives in the car. He would also be able to watch television, as long as either me or his mum were sitting with him.

We found out about a condition called PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) and went straight to the GP in order to try and see if he could be treated for this. The GP referred us to a paediatrician who promptly told us that this was not PANDAS. When asked what else it could be, the paediatrician told us that Joen was already waiting for an autism and ADHD assessment and we would have to wait for this before anything else: the waiting list was two years!

As the year ended, Joen’s sense of self-preservation disappeared. His wanting to run overrode his ability to look for danger and we would often find him climbing out of a window and running across the road. He would try to escape from the car windows if they weren't on lock. On the positive side, his repetition of, “I win; you lose!” had ceased, and he was able to use a limited vocabulary (usually single words) to try and communicate. Most often he would use echolalia of single words he'd heard on TV and repeat them obssesivly. If he tried to say more than two words they would become jumbled and he would panic and pace in circles. He would also put anything in his mouth and we often found him chewing on a snail. Crayons, play dough, stones, flowers. Anything went in the mouth. During this time he went from eating sensibly with a knife and fork, to manically shuffling in fistfuls of food with his hands, while running back and forwards from the table. Everything was done with huge amounts of nervous energy.

As time passed his behaviours became more intense. He was no longer happy just being pushed on the swing and it became harder to get him into clothes. He would become incredibly angry and rip them off. School no longer thought that he could manage full days and he started going in only for the morning session. He would run into other classrooms naked and urinate on the floor and in bins. He would squat down and deficate on the floor wherever he was standing. After being potty trained at 2, all inhibitions were suddenly lost. He would spend a lot of his time bouncing on a trampoline we had out in the garden for him and kept bouncing and laughing manically even through the winter during storms while just in boxers or shorts, or more and more frequently, naked. 

On one occasion, he cut his lip on a razor he found in the bathroom. He came up to us and said, “Cut myself. Razor. Stuck!” This was the most he had said in two years! He sat calmly and waited for me to unstick the razor from his lip. He then waited while I put something on it and sat with me while he calmed down. Then, he was off again. Only when he really hurt himself did he seem to be able to calm and find words.  

There were a few occasions when he managed to get out of the garden by climbing over the wall and getting lost. The first time this happened I searched around the village calling his name. He had been found by a neighbour who was very sympathetic, commenting on how he could not speak and wondering why he was covered in mud. He had taken his clothes off but didn't seem to feel the cold. On another occasion, he took the opportunity of his mother being distracted for a few seconds to start running down the road. We eventually found him a few miles down the road in someone’s pond. Thank goodness it was shallow, as the consequences don't bear thinking about. 

By the time three years had passed since Joen’s regression, he was getting extremely angry. He started biting himself and throwing things. He never wanted to hurt anyone: you could see in his face that he was sorry any time something he threw hit someone. However, if you tried to stop him from biting himself, he would then try and bite you. This became worse and biting himself or others became normal for him. He started pulling his hair out at this time and for a while had a noticeable bald patch. At this time the spitting also started and he would spit in people's faces constantly. It was hard to do anything to help him stay calm and the only time he was calm was when he was being driven around in a car. Myself and Ellie spent hours taking it in turns to drive him so that he wouldn’t be trying to hurt himself or his sisters. He would also try to bite himself and us while we were driving, but this was the best we could do for him.

By this time, school had managed to supply us with a social worker, though it had also reduced Joen’s school day to one hour with a couple of staff in a room separate from other children. There was also a third member of staff always on call. We were struggling to get clothes on Joen at all now and the school made the decision that they could no longer support him. We searched in vain for a special school but not one could meet his needs. 

Ellie had stopped working completely during the first year and I had left the job I had originally taken to be closer to home and supportive. The social worker could see that we were not coping, and after Joen smashed his bedroom window, cutting his wrist so badly that he tore through the ligament, she pushed for us to have carers come into the home to take some of the pressure off us.

It took about three weeks to have a carer come in who would stay with him as most of them found him too difficult to cope with and were shocked by his behaviours. We would have conversations about which new carers were good and which we thought wouldn’t return. The second carer who would eventually stay took a few months to arrive. 

During this phase of his regression Joen started displaying behaviours that seemed like he was reacting to hallucinations. He would be terrified and would scream and tear at his skin. He would cover his eyes and scream “get away!”. He would repeatedly smack his head into his hands and tip heavy items of furniture over in rage and despair. His strength is remarkable during these episodes. 

After loads of medical tests, including blood tests, brain scans and a lumbar puncture, nothing had been found and Joen has been diagnosed with Autism (initially), ADHD, Tourette's (due to his ticks) and then CDD due to evidence of his being “normal” with a catastrophic regression just before age 5.

A psychiatrist tested him on Methyphenadate (ADHD meds which made his behaviours more intense), Risperidone (Antiphychotic meds which increased his anxiety more each day we gave it to him) and then Sertraline which didn’t seem to make much of a difference. She then started Clonidine (to reduce sympathetic nervous system activity). This one made a difference and he seemed calmer and happier, and though his behaviours didn’t change, they lessened somewhat.

Understanding that the carers at home was a temporary relief, the social worker tried to get us to accept that the way we were living was unsustainable and that Joen needed to live in a residential school and tried her best to find a place where he would be happy, well looked after and interact with children in his age range. It was five years to the day since Joen regressed that he started living in a specialist residential school. He seems slightly calmer now at the age of 10, although developed seizures just before his birthday. This has been put down to a recognised complication of childhood distintergrative disorder. His medications are constantly being monitored. He still has episodes of intense fear daily and will scream and run. He is happiest outside hitting bushes and trees with sticks he finds. His vocabulary has remained extremely limited, mainly using yes and no when asked questions. Even this isn't reliable as he will often say no to answer anything. It's just a word he is comfortable saying! Sometimes he will answer us if we ask him what he had for breakfast etc, but it will be a random answer such as “nuggets”. He doesn't have these for breakfast!  

Even through all of this Joen has maintained a sense of fun and cheekiness. He will laugh and just adores affection. He gives the best bear hugs and when the mood takes him will plant the biggest kisses right on your lips! He loves to be read to, even if he has to jump up and down while listening. Although he cannot use functional language he seems to understand deeply when we speak to him. He has never lost his beautiful eye contact and will look so intently into peoples eyes as if searching for something there. We know, without a shadow of a doubt that he is still in there, waiting to be set free.