We all experience stress at certain times in our lives whether this is work-related or moving house, a relationship breakdown or financial problems. Whatever the cause, stress can make everything feel worse and can cause a variety of problems that impact how you think and feel both emotionally and physically. How stress impacts you, it's a relief when life calms down and goes ‘back to normal’ again.
But what about chronic stress, when it doesn’t go away and each day is like the day before it and the day before that? This is a common feature amongst parents of children with disabilities and is one of the most frequent topics that clients bring to my counselling sessions.
The additional pressures that parents experience when raising children with disabilities are enormous. It comes as no surprise - and I am in no way implying that the child creates those difficulties, not at all. The problems arise from the lack of support and understanding parents and carers encounter on that journey (family, work relationships and friends), the barriers they have to overcome (society) and the systems they have to fight time and time again whether those be health, education social care or in many cases all three. The unrelenting battles just getting through the day can be shattering, leaving parents exhausted. They are left with little emotional reserves than parents who do not have a child with a disability.
Stress impacts the whole family
What about the parents who have one or more children with disabilities, or they have both children with and without a disability? In those circumstances, the non-disabled children often experience stress as they can struggle to understand the needs of their disabled sibling and can feel like they somehow matter less. What if there are two disabled siblings who are struggling with understanding each other's needs and it's causing conflict in the family? How can parents manage in those situations? What can they do to support all of their children without crashing and burning themselves? How do you manage that situation and your own stress responses too?
The impact of stress with inadequate support can be tragic
The impact on the health of parents managing the needs of their family where there is a child(ren) with a disability is well-documented and I have put in some links below for you to take a look if you dare!
- Managing Parental Stress
- Focussing on stress where there is ASD in the family
- Parental stress in families with children with disabilities
- Sibling stress
And as we know, the impact doesn’t stop there. Intolerable stress has, in the past, contributed to parents committing the most horrendous crimes as happened with Tania Clarence, when she took the lives of her disabled children. This is an extreme case for sure, and thankfully very rare. But equally, many parents of children with disabilities who read about the tragedy will have understood the immense pressure she was under before she finally snapped with such dreadful consequences.
This abstract from a study conducted in 1988, which details what families of children with significant developmental delays and disabilities contend with. These include the prejudices and fears of others and it saddens me that we seemed to know then, 30 years ago, what we know now and yet so little has been done to improve the mental health, stress and physical health outcomes for these families.
What can help?
Sadly there is no magic wand that can be waved to make the stress disappear but there are strategies and interventions that can help. If you have been experiencing high levels of stress for an extended period of time then it might feel scary to try different strategies so my advice is to take it one step at a time.
Often there can be barriers to overcome before parents feel able to seek help, especially, in my experience, where the child has a later diagnosis or a more hidden disability. Parents have reported to me that they experience feelings of shame and guilt. That they feel they are responsible for their child’s happiness or to blame for the disability, that they should have realised sooner that their child had a disability. Parents can then find that they do not feel entitled to receive help or support or in some cases have become so isolated that they just don’t know where to start.
So what can you do to and where do you start when dealing with your own stress? The first step is to help yourself – I know this may seem unlikely and in some cases impossible but it really is the first step. Honestly!
- Taking time to focus on what the difficulties are can really help – observe over a period of time (a few days) and take notes. Notice your own responses to situations that are stressful. How do you behave, do you react or do you respond? Where do you notice it in your body, what happens to you and how do you feel when the stress begins to rise.
- Notice things like your breathing, your heart rate, your posture, tension in your muscles or bones, how does your head feel?
- What situations create these responses in you – what is happening around you at this time?
By doing these tasks you will be creating an awareness of your responses to threat and stress is a threat (our brains will see stress as a threat). When you become more self-aware you become much more able to question these responses and change how you respond. But it will take perseverance. It might be that you notice more about the triggers for you so you can look at altering how you respond and this in itself can reduce your stress responses.
Make sure you get opportunities to take breaks – these do not have to be long, they can be five minutes at a time, they can be locking yourself in the loo if you cannot leave the house or if you can, a quick walk around the block. They can be calling a friend to talk things over with or where more time is available, then going for a longer walk or a drive (if you are in safe enough state to do so), reading a book or surfing the net. Finding something to smile about in your day.
Try not to 'catastrophise' - by this, I mean rolling all the bad things into one big whole, that's so much worse. So break it down and remember to ask yourself ‘Am I having a bad day or am I have a bad half-an-hour in my day’?
Community support - Look for support either in the community or online (although getting out and about can be better for your overall well-being). Check out your local council's Family Information and Local Offer websites for details of help and support in your borough or county
You're not responsible for ANYONE else's happiness - Remember you are not responsible for your children’s happiness, you really aren’t - but parents tell me frequently that they believe they are and talking this through can be life-changing for families. Your responsibilities as a parent are to nurture, love and protect your children. But they do have to be taught, learn and understand things like:
- conflict resolution (allowing them, when safe to do so, to manage conflict with siblings can be a good place to start),
- consequences (yes even if they have a disability),
- how to fail,
- how to manage relationships with you and each other,
- healthy boundaries – this is key to developing healthy relationships all through life so please don’t underestimate the importance of both modelling and teaching boundaries to your children and emotional regulation – children can learn this, but some may take longer or be at different stages of developing this so this is something to be aware in your disabled child.
Some other strategies that can help you and your child manage stress
Here are a few other tried and tested strategies you may want to employ:
- Giving children 'closed' choices as they often feel safer when this approach is used. For example, ‘Do you want to wear shoes or boots?’ rather than, ‘what shoes are you going to wear?’ can help a child feel safer about making a choice.
- Remember to allow your child to calm down fully before debriefing an unacceptable or inappropriate behaviour. It can be difficult to do this especially if a sibling has been impacted but you will almost certainly ignite another outburst if you approach too soon.
- When a child loses control, while it can be highly stressful, it mostly isn’t personal. They are having a hard time, not giving you a hard time. Empathy is key and any knowledge or suggestions you may have on what might make them feel better needs to be saved for another time (believe me I know this one from personal experience)
- Sometimes no answer is the best answer of all. I know you are probably thinking ‘How ridiculous, my child will go on and on and on and on until I respond – and they probably will initially. This may depend upon the question or request (that would be up to you to decide upon). However, over a relatively short period of time, they will begin to understand that you are holding a line. If you are unsure, then set some family rules before embarking on this approach so that the boundaries are clear to everyone. Print them out and put them on a wall or fridge so everyone can refer to them. If needed, you could use PECS or other images to get the point across.
- Remember to nibble the broccoli bit by bit. What this means is that only tackle the stress triggers one bit at a time. To do them all at the same time will be unpalatable and you will almost certainly fail. By picking them off bit by bit, it will be much easier to swallow and have a much higher success rate.
- Don’t fall into the guilt trap – One of the natural things that happens the moment you become a parent is the guilt. The wipes vs cotton wool and water debate, the sleeping in your room vs sleeping in their own, losing your temper and so on and so on, all these things create parental guilt and playback in our minds, add a child who has a disability and the guilt can be fourfold of the average guilt a parent experiences. STOP…Guilt eats away at relationships and makes things feel worse than they need to be. Guilt doesn’t improve anything. Life is what it is and the best we can do is live it to the best we can.
- Believe that you deserve to be happy and to know what happiness means to you – I know this probably sounds bonkers, but sometimes we don’t believe we have a right to be happy, sometimes we don’t realise that we don’t believe this either. This would be a good time to seek professional support and advice.
- And finally, speak to other parents who are experiencing similar lives to you – they are often the best source of information advice and support than anyone as they have been there seen it and done it and know more of what it feels like.
Looking after you means that the family will be better served too, it really is that simple.
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