Debby Elley’s account of being a quiet parent.
Those who shout loudest get what they want. It’s a well-worn saying among parents in receipt of social care, sometimes used as a complaint, sometimes as encouragement to be more forceful. Practitioners are well aware of this, and our social care system is based on assessments designed to give help where it’s most needed, rather than simply rewarding ‘loud hailer’ parents.
Yet in my own experience, deserving families are still falling under the radar when it comes to getting social support. There are many reasons for this. In my case, I’m what I call one of the ‘Quiet Parents’. I didn’t shout loudly or cause a fuss. I’m the mother of autistic teenagers and it took an experienced social worker to identify what our family’s needs were and support us in getting them met.
So, why don’t we put our hands up for help when we need it? Through my work with families as well as personal experience, I’ve come across a dozen common reasons.
We don’t know it’s out there
For whatever reason, paths to the right kind of support aren’t always accessible. If you’re working, and the time not spent working is spent caring, researching what you’re entitled to is rather difficult.
My twin sons are both transitioning to adult care. I’ve attended courses, been given pamphlets, and a long list of website links…none of this was tailored to my own situation. I’m a journalist with a tenacious nature, but I still find the constant decision making for both my twins overwhelming at times. It’s not enough just to say ‘the information is out there if you want to find it’ – families with SEN children need more than that.
If help is out there, it needs to be personalised, face to face advice that kicks in by default. Without this, needs will certainly be missed.
We compare ourselves
Whilst those who shout loudest are determined that their son or daughter will shoot to the top of the list when it comes to help, there are others who have the opposite problem. Keenly aware of government cuts and limited budgets, we tend to self- assess whether we are as deserving of help as other families.
For a long time, I self-assessed sufficiently to talk myself out of asking for respite. There were those worse off, we were managing, we are quite a resilient family… We were tired, but others were tired, too… I was unable to be objective about our needs.
We’ve run out of physical energy
In the town where I’m based, there’s a fantastic organisation called Signpost for Carers. The volunteers who work there have immense knowledge and experience. They aren’t called upon nearly enough despite advertising on parent forums and on social media. You’ve got to ask yourself why parents and carers seem so apathetic. To be proactive requires time, effort and energy. Day calls are hard to make if you work, and by the evening you’re too tired to do much even if an advice centre is open. It’s a Catch 22 – you need respite in order to find out how to seek respite!
We’re tired of explaining
In addition, some of us are quiet because we are tired of going through lengthy explanations. We’ve done it so many times, and sometimes we’ve given organisations great detail on our lives only to find that they haven’t been that helpful. There’s a certain skill required when it comes to reducing your entire history into a nutshell. It can be exhausting. The best professionals are the ones who realise this and ask guided questions, explaining what sort of information is needed and why as they go along.
We’re not used to being negative
In order to ask for help, we have to highlight those aspects of our lives that cause us the most difficulty. Sometimes, we struggle to admit this to ourselves. I’ve forged a career encouraging others to champion their autistic children, and to focus on what they can do rather than what they can’t, to emphasise what’s great about them before the more challenging aspects of their nature. If you view autism in terms of positivity and opportunity, you enable your children to be confident in who they are.
In order to ask for support, parents like me need to entirely switch that thinking. This is something we aren’t used to doing. We’re seen by the outside world as ‘copers’ and our positive energy may well give us great resilience. But there’s a limit – and sometimes we just don’t recognise when we’ve reachedit. And even if we sneakily suspect we have, we just don’t have the inclination to sound like a ‘moaner’.
We’ve adapted to stress
When you have a child, you expect life to be stressful. Once you know they have autism, that extra stress doesn’t really reduce, your system just accommodates it as the ‘new normal’, to coin a topical phrase. It usually takes someone else to point out that you’re constantly on red alert.
Alarmingly, research shows that even when carers aren’t reporting feeling stressed, they still have increased levels of the stress hormone cortisol, which has been linked to heart disease.
We’ve given up on the system
By the time your child has moved through junior school, you have sat through a lot of meetings and been in contact with many professionals. Inevitably some will be more effective than others and if you’ve drawn the short end of the straw and have had bad experiences, it erodes your trust in the system as a whole. Professionals would do well to identify this disillusionment and approach it head on, rather than listen to acerbic responses without asking a carer why they aren’t on board with what’s being offered.
We’ve got guilt
Whilst some parents are happy to request all the help they can get, others feel that it is their duty to provide an upbringing without outside help. Added to that, if you’re feeling in some way responsible for your child’s condition, then you may also feel that since this is your ‘fault’ it’s up to you to deal with everything that comes of it.
I’ve experienced this. One of my autistic sons had an accident that left him with brain damage when he was nearly two. The lasting guilt that I’d allowed this accident to happen is something that I’ll probably never get over. Without realising it, when my son became aggressive towards me, there was a small part of me that felt I deserved it. No matter how many people told me his situation wasn’t my fault, I could only think that it certainly wasn’t anyone else’s.
We’re not singing from the same song sheet
One half of a parenting partnership may want support; another may not. In my experience, and I’m sorry to generalise so clumsily – men tend to be more private in general about their difficulties. It is after all rather unusual to let strangers observe your private battles.
It’s a good idea to try and support both parents. If one carer isn’t present, ask what the other’s reaction would be to the various options you’re discussing. Try not to assume that the more visible partner in a parenting couple will translate complex information and acquire the agreement of the other party.
Even if partners are in agreement, the wider family may not be. Here is where cultural differences can play a part. Having a professional from a similar background is sometimes helpful, but not always possible.
We don’t understand the system
We really don’t. People assume we’ve read the law relating to disability. We do if we have to, if we suspect something is lacking that’s a legal requirement. Entitlements are not always clear. Sometimes we suspect this obscurity is deliberate, and it makes us cynical. Is it because if everyone asked for the help they were entitled to, the system couldn’t sustain it? There’s a large number of people out there not asking for help because they aren’t sure of their entitlements. That’s masking a huge social care need and it needs to be addressed.
We don’t want to get emotional
Dwelling on difficulties can make us feel really upset. If our method of coping has been to distract ourselves from unwelcome thoughts, then we have to be really careful that once these upsetting experiences have been shared, they can be dealt with swiftly and healthily rather than becoming like an evil genie who can’t return to its bottle. They don’t call it ‘bottling up your problems’ for nothing!
Ideally, we need to be in the right mood to tell you. Paradoxically, that right mood tends to be when we’re coping brilliantly, and don’t feel deserving of additional support. So it’s up to insightful professionals to be able to understand what the worst looks like when parents are at their best.
We fear being judged
When it comes to understanding your child’s needs, we’re all on a learning curve. The usual parenting strategies need to be ‘tweaked’ for SEN youngsters. It’s something that parents have to learn, and sometimes the only way of learning is to hit a difficulty first. But too many parents see their lack of knowledge as a failure. They hide behind shame. It takes work to help them acknowledge that they’re deserving of help.
There’s no magic solution to these difficulties, but simply having an awareness of them will help practitioners to delve a little deeper when a family announces that ‘they’re fine’.
Mother to autistic teenage twins, Debby Elley is co-founder and co-editor of AuKids magazine together with Tori Houghton. She is the author of 15 Things They Forgot to Tell You About Autism and co-author of a new children’s book, The Ice Cream Sundae Guide to Autism.
Web : aukids.co.uk
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