In 2021 I wrote this article: https://www.irishtimes.com/life-and-style/health-family/parenting/i-m-a-parent-of-a-child-with-special-needs-as-i-type-this-i-realise-i-am-so-exhausted-1.4718192
Following two years of homeschooling, our youngest began secondary school last year: His own decision. Having been given a place in the ASD unit at his brother’s school over the summer, he started on a reduced timetable and is now doing brilliantly on a mix of unit and mainstream classes. He has dyed his hair blue and discovered Chess. His older brother, however, hasn’t made it back.
18 next month, he has been passed back and forth among children’s services for the past 3 years, yet we still have no real understanding of what caused him to fall apart. School had always been such a happy, safe place for him: a place of predictability, friendships and achievements. He has a voracious appetite for facts and an almost photographic memory. Now, he is unable to get out of the car, let alone into the building, and hides himself under his hood, bent double so no one can see him until we’ve left the car park.
The first two psychologists he saw with CAMHS found him unable to express himself and they dismissed the issue as “just the autism”. One even suggested that it was because he found school too tiring, due to his Dyspraxia. The third, from CNDT, was brilliant: He liked her enormously and was beginning to open up to her when she was instructed to stop the sessions, because there were so many other children on the waiting list.
When we were forced to move house at one point, the new CAMHS team didn’t have a psychologist and the one on the first team refused to continue seeing him, so we agreed that he would try an SSRI, it being the only way to retain any form of support. The prescription that then arrived was actually for Ritalin, intended for another patient and sent to us by mistake. Once that was resolved and the correct medication prescribed, however, he did in fact benefit enormously from the medication and managed to return to school for a brief time. Then a month later he was in A&E, suffering from severe headaches, stomach pain and urine retention. I asked CAMHS if it could be the medication and they said no, so he continued taking it. 5 weeks, another A&E trip and multiple GP visits later, a Google search turned up a case study by a CAMHS team in the UK discussing the (albeit very small) risk of these symptoms occurring in adolescents on the same drug. Within 2 days of coming off the drug, he had largely recovered, though almost 3 years later, he continues to suffer from physical discomfort. Furthermore, watching him withdrawing from the medication was one of the most painful things I've ever experienced. He thought his life had been taken away from him (again).
By the time he lost the third psychologist, he had developed OCD-type symptoms and shortly after that stopped eating. Over a period of 6 weeks, his BMI dropped 6 points. In a meeting with one of the 4 CAMHS psychiatrists he has seen, I asked what CAMHS would do to treat the OCD (which was how the CNDT psychologist had referred to it). His response was to say that my son had not been formally diagnosed with OCD, therefore it couldn’t be treated. When I asked him for an assessment, he said he didn’t do them. Ironically, the most recent psychiatrist has said that a diagnosis isn’t required in order to treat the symptoms (‘though he has also insisted that it’s not OCD, but “the autism”).
The psychotherapist we are now paying for him to see weekly considers our son to be extremely unwell and likely to need therapy for a significant length of time. Several months ago, I took him camping in the hills. He loves nature and walking. On one walk, he found a way to tell me that he had been self-harming for about a year. He is at least 6 feet tall and towers over me, but I’ve lost count of the number of times over the past 3 years when I have held him in my arms whilst he’s wept. His entire body shakes, and the emotion pours out of him until he’s exhausted.
CAMHS is now referring him to the adult mental health team, whilst his friends prepare for the Leaving Cert. He is desperate to be with them. We will keep going, keep on fighting and carrying him until he gets his life back. I have promised him that one day, this will all be in the past.
I began painting 3 years ago, which helps me to cope with the inevitable grief and depression that so many parents in similar situations experience. I particularly love to paint seascapes. Thinking about this recently, I suddenly felt an urge to refer to them as ‘oceans of tears’.
Becca
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