Not much to ask really is it?
Parents generally know their children well. When things aren’t ‘right’ parents can be pretty good at noticing.
When children have difficulties, disabilities and/or medical issues their parents are a gold mine of information about those issues.
Last year, by about 6 months into his placement at a specialist residential school, Peter’s health started to decline again. He had severe exhaustion, was profusely sweating at times, his heart was racing and he was very rapidly gaining weight. He was 11 years old, at a school 2 hours from home (his first residential school) and it was impossible to assess what was going on; how much was a physical problem, how much a mental health problem, how much developmental, how much distress and how much was the diabolical ‘food’ that he had no choice other than to consume? He is a bright autistic child and 18 months earlier gone into a prolonged regressed and dissociated state that had required a long inpatient stay and from which he was still recovering.
My guts were screaming ‘this just isn’t right’. Not a single professional at his school did anything about it.
So I brought him home especially to visit his GP. We rarely visit the GP. Peter needed his GP to take a step back and look at the whole messy picture. Shouldn’t be a problem. That the role of the GP isn’t it?
Peter sat in front of the GP, with his complex history (and previously slim), a 5’8″ 13 stone 11 year old whose voice had broken 6 months earlier when he was 10. The GP was kind and did some blood tests (anaemia and thyroid) which came back borderline. So that was it.
That was it.
Really?! You are just going to leave it??
There was no appetite on behalf of the GP to even try to consider what may be causing these symptoms that were badly affecting his quality of life EVERY DAY.
“Even autistics are entitled to an assessment and a good quality of life” I wanted to scream. Something wasn’t right and I needed someone to care enough to really think it through. Probably for the first time I felt that Peter’s life was worth less (to others) just because he is autistic and at ‘special school’. Boy did it send me reeling. This is something for discussion another time perhaps, as at this time I was more concerned about how unwell he seemed, and how NO ONE seemed willing to actually look at the whole child, and the whole picture, to work out what the issues were, develop a plan – and help him to feel better so that he could carry on recovering and actually enjoy his childhood.
At the time I wrote this:
I wish the professionals knew how scary it is when, as a parent with concerns:
1) I have to recognise problems myself, even when he is in constant or frequent contact with children’s ‘professionals’ who are seemingly incapable of listening to him or noticing for themselves that things aren’t right. For example educational difficulties when I am not a teacher, physical ill-health when I’m not a doctor, mental health decline… and so on. I am expected to do this (as no one else does) even when he doesn’t live with me for most of the year it seems;
2) I have to face the fact that, when I point concerns out to professionals, they don’t want to ‘get it’ and are quietly confident that I am going to be wrong (even though history has shown over and over again this is not the case);
3) I know I’ll be judged for even raising that concern;
4) that having been fobbed off rather than “heard,” I am silently screaming for the professionals to HEAR my concerns – to understand that I WANT TO BE WRONG but I need to know that someone properly informed has checked out my concerns;
4) that I am terrified I am right, terrified I am wrong, but just in case I carrying on asking;
5) that I’ll be judged so heavily and unfairly for being persistent and
6) if my concerns are proven to be justified again… it’ll perpetuate an ever decreasing circle of more fear, less trust in professionals, a more emotional parent – for which we are ever more harshly judged… judged for being concerned, judged for being right, judged for being persistent, judged for becoming more knowledgeable, judged for being exhausted, stressed and worried…
Again I did some research, dug into my savings and this time made a private appointment to see a paediatric endocrinologist. The NHS based professor of paediatric endocrinology was sufficiently concerned that he instantly transferred Peter to be an NHS patient, ordered a number of blood tests and then more tests and an MRI. It turns out that Peter has precocious puberty in addition to everything else. It seems as though he has gone through an almost accelerated puberty whilst severely mentally ill. And no-one noticed. My 11 year old was in the body of a 15+ year old, and this matters. When your profile is ‘very spiky’ adding early puberty into the mix matters. It matters a lot.
When your profile is ‘very spiky’ adding early puberty into the mix matters. It matters a lot.
In the previous few months Peter had been through a lot (see list below) and what he needed, more than anything, was a skilled clinician that could see THE WHOLE PICTURE.
For 18 months from the age of 9 3/4 Peter:
- had experienced a prolonged acute psychiatric illness (due to years of unmet need) requiring a long hospital admission;
- had lost very many of his cognitive, emotional and many developmental skills as part of the regressed and dissociated state and then started to regain them;
- was unaware of how many of his lost skills he would regain;
- had gone through almost complete puberty;
- been told that he would no longer live at home but would now need to live a specialist school;
- had his appendix removed (on the day he was due to start his new school);
- had moved to a school a long way from home that purported to specialise in autism (but most staff lacked knowledge and skills it seems);
- had numerous changes of room at his new school which had failed completely to assess, understand or meet his mental health needs and turned out not to have a suitable peer group.
His new symptoms were a probably due to a combination of distress, depression, chronic fatigue and early puberty, and not one of these, or the list of issues above (aside from the appendicectomy) were to my knowledge factored into his care at this ‘specialist school’ or considered by his GP.
I tried to get the GP to understand via a phone appointment. At one point during the conversation I was sobbing so hard (wailing would be an apt description) that I actually had to let go of the phone for a minute or so whilst I sobbed uncontrollably. At the end of this Peter’s GP gave me advice: as I am a parent of a child with additional needs he recommended that I “don’t stop fighting”.
Thanks, but do I have to fight you as well?
Peter lasted a few more weeks at the ‘specialist’ school.
Fast forward 12 months – the new school is very different. His fatigue was severe and constant for months. It is slowly improving but still significantly affects his quality of life at times; I suspect it is related to the various types of trauma his 12 year old body and mind have been through since Year 1. Now there is time to heal with skilled therapy which is also integrated into the care setting and into the school where his learning is flexible to meet his needs and strengths and individualised to ensure he can manage the demands, recover, progress, develop and flourish.
Thank goodness for that.