Being a parent-carer and why I think more recognition is needed

As a parent I sometimes find it difficult admitting that I am also a carer.  It feels an uncomfortable fit mainly because I don’t feel I meet the stereotypical image of someone who looks after a spouse or elderly parent.  To refer to yourself as a carer against this perception is difficult and often provokes raised  eyebrows from others.  Even amongst other parents my dual role is questioned.  At our local parents forum, another parent didn’t think  I had a right to call myself a carer because in his view isn’t that what all parents do – care?

Of course caring is intrinsic to good parenting but looking after disabled children requires an even greater intensity of care that is beyond what is normally expected when you become a parent.  It can become so intense that our lives can be totally consumed by the needs of our children.   Of course I realise that ordinary parents experience that too from time to time but usually as our children grow up and become more independent a parent’s life becomes easier and freer.

For autism parents such as myself our lives take a very different course and we can find ourselves stuck in what feels like a permanent phase of early childhood or even toddlerhood.  For me I find it hard watching my son’s peers mature into confident teenagers whilst my son struggles with the combination of hormones and autism.  I find it hard to see the mums of my children’s friends move on with their lives whilst I struggle to get through a developmental stage that my friend’s children passed through years ago.

Of course there is no question of me looking after my son.  I love him and I am happy to do all I can for him.  I am also grateful that we are not in that difficult position of having to consider residential care.  I am pleased, or rather relieved, that as a family we are managing but still we have huge worries about the future and whether our son will manage his life independently.  Comments from professionals suggest he may not manage without any support and my instinct agrees with them but for the time being I try not to dwell on this.  My son is still young and there is time for him to recoup his missing education and to develop into a confident and happy young man.  This is what I hope for and what I am working towards though I accept that because my son has a developmental disability it may take him longer to get there.  How long I don’t know.  How long is a piece of string.

So for now my life is full and busy in ways I never expected when I first became a mother. With an aspergers daughter to also care for, I cannot easily return to work and my skills and experience lay dormant and forgotten by a society that is largely ignorant of the plight of parents like me.  Some people cannot understand why I don’t work and why I am at home with two school refusing children.  They assume that because my children look ‘normal’ that they don’t require any more care than other children but looks are deceiving when it comes to hidden disabilities like autism and aspergers. What appears to be an outwardly calm child can mask acute internal distress that can easily bubble over into aggressive behaviour.  Being on guard, being aware of the environment around my children and responding to the slightest signs of anxiety has become my norm.  If I relax or slip into normal parental mode then I guarantee we will have issues as one or both of my children fight or flight the situation they are in.

But it isn’t just practical support that defines me as a carer but also the advocacy that I have been forced to do.  I am ashamed to say that in this advanced country of ours, getting support for our children is not easy.  Even getting an education is a fraught process as many special needs parents will testify.  We may have an educational structure but in practice too many children are failed by it and in cases like mine end up out of it, mentally unwell with their confidence smashed to smithereens.

And for families like mine, we are forced to pick up the pieces, to restructure our lives and to put our fighting gloves on as we fight the system  for support.  Days become filled with phone calling, form filling, appointments and meetings as well as the day-to-day caring of our children.  And whilst there is no question of me doing all I can for my children, the constant demands of caring for them day in, day out and fighting for their rights can lead to stress, exhaustion and ill health.

Yet many people, it seems, do not recognise this caring role of parents like me, even parents themselves.  They imagine that a carer is someone who is looking after an elderly person or a young person who is looking after their parent.  Few people recognise that parents can also be carers of their children and not surprisingly there appears to be little out there to support us.   When I reached a low point the other week I clicked on my local carers website but there was nothing for parents like me.  There were resources for young carers and for elderly people but nothing that specifically targeted the needs of mums and dads like me.  I felt that as a parent-carer I didn’t exist.

Of course I know that many mums and dads get support from the organisations that deal with their child’s specific disability but my local autism group is too overwhelming for me.  It is a big group that offers structured meetings on specific issues which is great for those who need that information but for me I’ve moved on from this.  I’m not new to autism anymore and whilst I have a need for specific information from time to time I am in more need of enjoying a informal chat over a cup of coffee.

Unfortunately opportunities to do this are hard to come by particularly for someone like me who struggles to get out of the house.  However I am lucky in that I have found online support which helps me to connect with people outside my home but for parent-carers who don’t have this access, I often wonder how they are getting on.  I also wonder whether enough is being done to support them.  If my local carer’s group is anything to go by, I have to ask whether parent-carers are recognised at all.

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2 Responses to Being a parent-carer and why I think more recognition is needed

  1. JuliesMum says:

    I agree, I really held out against the carers label for a long time, and it was only when I realised my role was completely different from most parents’ that I accepted it. In fact now Julie is sixteen it has become slightly easier to say because she is nominally an adult – so having a carer is shorthand to indicate that her life is not the same as other teenagers. I’ve also found it much easier to say I was her carer to explain why she had to come with me to the dentist!

    Completely agree with the advocacy taking up such a lot of time and energy. I quite often have to use up my vacation days from work just to wade through writing letters and making phonecalls, not to mention endless appointments and meetings. When I was struggling to make our way to the top of one unbelievably long waiting list I almost wept when someone told me the only way to get further was to write to my MP. How could I ever find time to write to my MP as well as everything else!

  2. Even with two children with special needs, I resisted calling myself a carer until I could no longer pretend that my daughter was an overgrown toddler, when I could no longer lift her and my house filled up with hoists and giant-sized wheelchairs and my car was exchanged for a van.

    I’m not sure how many other special needs parents call themselves carers, perhaps it depends on the level of care involved? Certainly the trajectory of my life compared with my friends who do not have special needs children is very different: while our older children were in primary school they all mixed, despite differences. Now my friends’ children are off doing their own thing and their parents main complaint is being treated as a taxi driver and ATM!

    Now my children are older my role is more intense and more house bound. I’m making the best of it, but’s not QUITE the life I’d planned!

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