Before counselling I worked as a tutor working with families whose child had been diagnosed as being on the autism spectrum. It was an honour to be welcomed into families that tirelessly worked to get every possible resource for their child. Particularly in Ireland this is not an easy task, reams of paperwork, endless phone calls,meetings and assessments and having to talk about your child in their worst possible terms in order to be deemed worthy of help. It’s exhausting physically and mentally. Often it is only when supports are in place that parents have a moment to actually sit down and reflect on how their lives have changed and how different things are going to be to compared to the dreams they had when they first held that little baby.
It occurred to me when I qualified that I was in a unique position to help these parents, I had a background that would allow parents to talk about their lives without having to stop and explain things every five minutes and I had the skills to support them in their work as parents of a special needs child. So I set up CSN Parental Support, a counselling service specifically aimed at helping parents of special needs children through one on one counselling. This blog is based on my conversations with parents and the kind of issues that repeatedly came up.
Grief is something that gets talked about a lot when it comes to parents of children with special needs. Grief typically comes in stages – denial, anger, hopelessness, bargaining, until finally coming to acceptance – it does not however always follow this set order, and for some, not all of these stages are experienced. Reaching a point of acceptance doesn’t guarantee that you will never feel anger or hopelessness again in the future but somehow knowing that you have got through it before gives you have the strength to cope when your hopes and dreams need to be readjusted yet again.
For our parents acceptance doesn’t mean that you accept autism or that you are giving up, it means accepting the reality of you and your child’s situation. What I noticed in the counselling room is that, often, that acceptance came in the form of a parent realising they didn’t need to force their child to fit into the world, instead they came away with ways to make the world better fit their child. That it was OK for their kids to need headphones to go to the supermarket or that mainstream schooling was not the best way to help them learn. It’s an acceptance that there are other ways of doing things.
Fears about what other people think is another issue that parents of children on the spectrum often struggle to cope with. For example, the stress of your child having a meltdown in public might be compounded by the concern that you are being judged by those who witness it. Because children with autism don’t look any different, parents worry that others will assume their child is bold or that they are bad parents. Two things I advise parents struggling with these concerns; Firstly, test the reality of that thought and second, consider why the opinion of that stranger matters to you. In terms of testing the reality – you may assume that people are judging when they may in fact be sympathetic, they could want to help but have no idea how to. They could know someone on the spectrum so know exactly what is happening. They may be just glad that it’s not them!
Or they may well be judging. If they are then why should this persons opinion matter to you? They don’t have all the information and have no idea of what your life is like. So their opinion is not relevant and should not influence you.
Family and Friends
Of course the people whose opinions you’re worried about may not be strangers, they could be family and friends, what then? Again test the reality, don’t assume they are judging or lacking in compassion or understanding. People who are not around your child all the time may need to be educated about autism and your child specifically. They may be scared to say anything or to ask as they just don’t understand what’s happening. Luckily there are plenty of other sources of information out there now that you can direct people to.
Embracing support can make all the difference. If people offer to help, don’t instinctively dismiss it, instead think about ways they can help. Perhaps it’s just by letting you talk, or perhaps they could get to know your children so that at some point in the future you would feel comfortable with them minding them for an hour while you had some time for yourself?
There will always be people who just can’t get their heads around it and with them you have a choice too, you can decide you don’t have room for them in your life or they can part of that bit of your life that is Autism free! A night out or a coffee when you talk about politics, celebrity gossip, football, anything but autism.
Nurturing the Nurturer
Part of coping is creating the space to look after yourself. It’s impossible to have the strength for the fight if you don’t find time for self care, we all need to recharge. So it’s time to think of self care as essential rather than a luxury.
So reach out, there is someone waiting to help.