Isaac has gone through a lot, all of it with the consent and agreement by us as parents.
If memory serves me right, the first ‘consent form’ we signed was when his ENT surgeon came out of theatre and asked if we would consent to him undertaking a tracheostomy when he was 8 weeks old. Isaac had needed emergency resuscitation 3 times before this, including about an hour prior to this. Of course we consented, it was consent to safeguard his life.
Moving from then there’s been a flurry of consent forms for surgery (around 15 at least) including ones that have consented to him having all his food through a PEG feed for the last 5 years, consenting to him having botox injected in just about every painful place you could put botox, and consent to him having his saliva glands clipped (the thought of which makes me wince, let alone how it must be for him). We’ve consented to an infinitesimal number of medication changes – some of which have brought horrible side effects -, to dye being injected into him for brain scans, to him having to have a ph monitor placed into his oesophagus for a 24 hour period, to him having an elemental diet which in effect means that food has no meaning to him.
We’ve consented to an endless train of devices and equipment, standing frames, head rests, arm rests, foot plates, head ‘pods’, neck braces, AFO’s for his feet, splints for his arms, thumb braces and a ‘sleep system’ which holds his posture with his legs apart as he sleeps.
All we can do IS consent. In doing so we hope that the people asking for that consent know more than we do, and knowing that despite the discomfort and pain it may cause Isaac in the short term it will give positive outcomes medium term.
It is fine to be a mum or dad and do your parental duty to do things that are ‘for their own good’ for your kids we all expect that as parents. We expect there to be occasions , even with a child who has not got any disability, occasions where they have to go through some discomfort and pain – vaccinations, dental procedures etc – and that whilst it’s bloody horrible to be the parent trying to comfort the recently vaccinated 1 yr old it’s par for the course. It will always sit there in your mind as a ‘not particularly happy’ memory of when you knowingly did something ‘for their own good’ that they really didn’t want to happen.
With Isaac we have done this DOZENS of times. Consent, agree, bow down to ‘better informed’ people.
On the dozens of occasions where we have had to do something ‘to’ Isaac, or allow someone else to do something to him, we have always had to think in the bigger picture terms. We carry a lot of responsibility – a of a lot of either convincing of ourselves that ‘long term he wont mind’ or a hell of a lot of ‘we’ll put aside the fact he’s going to be unhappy, for long term positives’. The guilt that creates, over years, on me is weighty.
When he was little, a lot of the procedures, surgeries were life saving or life extending. They were not so much us having to make assessments of whether it would provide a ‘better quality of life’ for him. I am no more qualified to assert what Isaac’s quality of life now, or in the future, is or may be than anyone reading this is so I struggle with the concept. Isaac knows his quality of life, but as he’s been silent since birth and is only now just starting to unlock the padlocks on his communication that cerebral palsy has placed upon him, it’s only over the coming years that we’ll know what the little voice inside is saying.
So, yesterday Isaac went for his latest wrist splints. The process around them being molded, fitted etc has taken a long time but that’s another tale. Anyhow, he’s got these splints. They’re huge.
They’re cumbersome and for a little boy whose arm movement is already very impaired, they must feel like blocks of concrete. ‘He should wear them 8 hours out of every 24 hrs to prevent (further) contractures of his wrists and hands’ we’re told. So that would be overnight then, as he won’t be able to wear them at school as it will massively impact on how he can play or interact with his Big Mack switch. Wearing them overnight will be uncomfortable – imagine it yourself- and, in effect because he’s in a narrow cot bed will prevent him moving his arms.
So, I think what i’m coming to is the point where you start to think “is it worth it?”. Is the medium / long term benefit worth the obvious discomfort and annoyance that these wrist splints will possibly bring. And I use the word possibly with purpose. Because much as there is a medical model and rationale for having them ; i.e. it will stop contractures, the end point for Isaac HAS to be that he can then use his wrists and arms purposefully, or at least more purposefully than he would if he’d never worn the splints. Can that be guaranteed, when the reason Isaac has the development of contractures is his neuromuscular disability – no. Can we sit here in 5 years time and say ‘oh well he’s worn the splints 8 hours per day for 5 years and he’s in a better position now than it he hadn’t worn them’ – no doubt we will and his OT and physio will because THATS WHAT WE ALL WANT TO THINK. What does Isaac want and think? Nobody knows.
I’m sorry because I think this blog is a borne of frustration to a point and you might think i’m ranting a bit, but where it’s coming from within me is that I need to be at peace with why we put Isaac through things. The older he gets, the more the list of ‘things’ grows. Splints, mouldings, standing frames, injections.
The ‘be a good parent’ shaming if you kick back and say no to professionals is the result of them feeling that you’re challenging them by saying no. For 4 years we’ve been being asked by one of Isaac’s team of professionals to have a manual handling assessment for when we lift and carry Isaac. I’ve tried saying ‘no point, there’s nothing we can do except lift and handle Isaac as we currently do’ or ‘you know what, no thanks, we’re good as we are’ but no, there is a checklist somewhere with ‘do a moving and handling assessment’ on it and woe betide the professional that doesn’t get it done when it comes to audit time. It perhaps says something like the family ‘won’t engage’ with assessment in their case notes, or if it gives a full explanation (i.e. print off this blog!) then i’d be amazed. Not engaging with an offer of support…….why would any sane person do such a thing……?
Its not that we don’t want support, we just want that little modicum of control of when we get it and to get asked if it’s right for us, for Isaac. If we as parents struggle to get our consent recorded without it being a ‘non-engagement with services’ then how can a silent little boy, vulnerable to everyone, be expected to. Consent, I thought I knew what it meant, but now the more I think about it the muddier the water is, especially when i’m giving it for someone else.