Published on 12, July, 2020
Another emotional day on the waiting list has left me needing to vent, any advice is most welcome!
My son R is just 12, he has always been referred to as 'sensitive' he is very loving and very emotional, at 4 he wanted to learn ballet, and he loved this. When he was 4 his father left the home and has had no further contact with him or his brother (fathers choice). When R started primary school he was frequently wetting during the day, and was increasingly emotional in the evenings after school, he struggled to sleep and didn't make friends, and frequently 'collected' items from places. The GP said it was a result of father leaving and starting school.
The meltdowns in the evenings increased and R began collecting rubbish - broken glass, sticks, stones etc and hiding them under his pillow. R was wet at night and most days, he was also soiled in the day. R was sent to a child psychologist at 6 because he could write his name and draw a picture of mummy I was told he was just emotional advanced for his age and his peers when 'catch up'.I was told not to worry about the wetting and soiling until he was 7.
When he was 7 I raised the concerns again, in school he is average ability although his writing is poor. This time I was told it was just the transition from KS1 to KS2, the bedwetting was fine until 10. He was referred to a bladder and bowel specialist for the wetting and soiling. His meltdowns continued mainly at home and mainly directed at himself, he would hit himself, scratch at his eczema until it bled and bang his head on his hands or the wall. He started to lash out at home particularly towards his brother who was a year younger. I was concerned when he began talking about wanting to be dead, throwing himself off the bunkbeds to stop the pain in his head and being a waste of life. I was growing increasingly concerned about his mental wellbeing and he was referred to CAMHS at 8, despite his self harming behaviours they felt that he was likely to be on the ASD spectrum, they could therefore do nothing until he had an ASD assessment. We were told it would be approx. 2 years.
R had Thrive support at primary school and was given a safe space in the classroom, he retreated into books and used them to manage how he felt. He fell to pieces when supply teachers covered his class, toys at home were regularly found with seams pulled apart, wings/legs/heads cut off with scissors, he started taking the blades out of sharpeners. The bladder and bowel investigations continued, when he was in year 4 the soiling reduced although we continued to have faecal play where he would rub it under the bed/ mattress/ behind the wardrobe/ in his hands/ anywhere really, In year 5 the wetting became less frequent in the day and we started to have issues with food, R has always been a picky eater but his food preferences narrowed although food started to go missing from home, wrappers and food were found under his pillow daily. The bladder and bowel specialist couldn't identify a reason for the toileting delay but identified that the wetting could be due to low fluid intake. In Year 6 understandably he became more wobbly as the pressure of SATs (although he was comfortable academically) leaving school etc and there was another increase in headless toys, missing food, 'collecting' and faecal play and meltdowns becoming increasingly more aggressive specifically at home, although they did happen at school he would usually leave the location. He still had no friends although he was dry and clean through the day before leaving primary we were told the diagnosis was likely to happen during year7.
R has always had a wise head on his shoulders although he just can't get his head around what people mean and their actions. He prefers adults or being in a looking after role for younger children, although he finds them hard when they don't do as he asks. We had explained to him that the doctors suspected that he may have ASD, and he had helped at work with me and knows lots of adults and children on the spectrum. He transitioned to secondary school in Sept 2017, his best friend at school is the pastoral support TA, at Christmas 2017 he finally was dry in the night no magic lead up just one day decided although this was the same time he told me he had a crush on a boy, and then had his first boyfriend. R is a Scout and still dances although both of these activities present difficulties with joining in, social skills and the pressure of 'performing' to the 'normal' standard of his age.
Earlier this year the social struggles really started to take their toll on him and he is opting out of lessons at school frequently and often sits out of scouts and dance, he has become more sensitive to white noise and won't eat breakfast if the kettle is on, sits as far from the fridge as he can, wont walk around the fridge and freezer isles in the supermarket. He asked me to find out how long it would be until the diagnosis would be done, I enquired with the SENCO, she came back with at least another 12 months. This has knocked R sideways and he has had several emotional breakdowns since this. He just wants to know if he has ASD because as he says 'if its not that I must be mad' it is so hard after all this time and this journey to not be able to help him and as a parent it is painful to see him cry and ask why he's not like other kids his age, he doesn't understand why they do what they do, say what they do or why people don't say what they mean. He has poor sleep, is a fussy eater particularly with textures, 'collects' items which has also presented as stealing, he forgets what he is supposed to be doing, never brings letters or notes home, has messy school books, poor personal hygiene and poor organisational skills. Being a LQBTQ teenager is hard enough to navigate without feeling like he is mad.
I know that a diagnosis won't change how he feels but at least he will know why he has these behaviours and struggles that he knows 'normal' kids don't have, I feel that as he gets older the expectation of others is higher and people won't tolerate his differences, at least with a diagnosis people would hopefully understand why he does or says some of the stuff he does. I just want to help him to be happy, at the moment he feels like he isn't worth anything, he has no redeeming features and he is a drain on everyone around him. He doesn't see the kid I see, he is loving and caring with his family, fascinated by dragons and fantasy, an avid book reader, loves doodling and I'm so proud of him for keeping going, for pushing out of his comfort zone and leaving his safe world of books to try and be part of an unforgiving society. I just wish he could see just a tiny part of what I see in him.