Carers – coping with stress

As much as I love my children and the joyous moments they bring I can’t deny that caring for them can be stressful at times.  Not only are there the everyday motherly duties to do but there are also the additional demands as a result of their special needs.

On a daily basis I have to think about how I communicate with them, whether they have understood what I’ve said, what they will eat as well as helping them with their personal appearance and hygiene.  Going out requires another set of considerations such as helping our children cope with a new place and a change of routine and any sensory difficulties they may have.  And whatever we do, wherever we go, we have to be aware of any signs of an overload which we can respond to to prevent a full-scale crash.  For my son this comes out in the form of the more classically known meltdown but for my daughter this causes her debilitating exhaustion and a low mood.  There are probably loads more things that we do that has so become our norm that it is hard to recount what we do.

I don’t resent motherhood and the additional demands of special needs but there have been times when my children’s needs have been so intense that it has ended up affecting my health.

One of the most difficult times for me was when my son became agoraphobic.  This seemed to happen almost overnight, triggered by a series of badly handled situations at his old school.  I was deeply upset to see how withdrawn and frightened he had become and angry that his school was so unsupportive of him yet I was also determined that my son would get the help he needed.

We sought psychiatric help and a course of anxiety medication was prescribed.  This was not an easy thing to agree to and I spent a lot of time tormenting myself about whether it was right to give medication to my son.  In the end I felt we had no choice; our son was so unwell that it was clear to us that he would not recover without some sort of medical treatment.  However whilst the medication lifted some of the anxiety it was not an immediate solution.  We also had to spend huge amounts of time gently encouraging our son out of the house.  Sometimes he made progress, sometimes he didn’t, sometimes he got worse and many a time I wondered if he would ever recover.

It was difficult.  Being stuck in the house caring for someone who could hardly get up in the morning and who struggled to hold a conversation, was isolating.  I barely left the house and sometimes went many hours without talking to anyone.  Instead my days were spent encouraging my son to re-engage with life; to get up, to eat, to get dressed, to talk and to attempt to go on short trips out of the house.

Very slowly he started to recover but as he recovered, I found myself succumbing to exhaustion and horrible anxiety that seemed to come out of nowhere.  What was worse were the night-time anxiety attacks that would wake me up in a frenzy of panic. These attacks never lasted long and with breathing exercises my body would soon calm itself but they were horrible experiences nonetheless.

I didn’t go to the doctors.  I didn’t want to end up on medication as I had had difficulties coming of the medication that I had been prescribed when I had post-natal depression years earlier.  But neither was it easy to get to the doctors.  As a full time carer I struggled to get out of the house to do anything for ’me’ as I was too busy looking after my son.  Neither could I get anyone to sit with my son as he was so frightened of other people that he was physically unable to leave my side for many months.

So I tried to take more care of myself; eating healthily, doing some exercise and taking time to switch off from the situation I was in.  It wasn’t easy but it was the start of learning a new way of coping with the challenges of my son’s autism and mental health difficulties.  Slowly I started to feel better, as did my son.  My anxiety attacks became less and my son recovered enough to start at a special school for autistic children.  For a year we were  hopeful that our son would have a better quality of life.

Unfortunately in the autumn  of 2011, his anxiety returned, triggered by the long summer break and a return to school.  He couldn’t manage the transition and no matter how hard we, his teachers and other professionals have tried, we have not been able to get him back to school since.  For the time being he has a tutor that comes to our home but it remains uncertain where we are heading with regards to his education.

As for my aspergers daughter, she has followed a similar path to my son and is now out of school as she can no longer cope with the demands of a mainstream school without any support.  We are now about to start the assessment process in the hope that she will get a statement of SEN which we hope will lead to better support for her.  I am slightly more hopeful for my daughter as her difficulties are not as pronounced as my son though this isn’t to say that her problems are not real and substantial.

As for me, I find myself once again at home.  It is not easy being stuck inside all the time but I have acquired a resilience and am more able to cope this time round.  This isn’t to say that every day is a good day; I would be lying if I said such a thing.  Some days are tough where difficult behaviour, demands from professionals and worries for my children simply overwhelm me.  But I accept these lows, I let them pass and wait for the better days when I can take time to enjoy things at home.  I have learnt that as much as I would like to escape my house from time to time, I don’t have to leave my home to find ‘me’.  There are plenty of things I can enjoy doing alongside my children or during moments when my children are occupied or contented with a particular interest.  In  this way I can manage the stress that inevitably comes from being a mother and a carer.

~v~

This post is for Special Saturday, an online ‘global’ campaign that aims to raise awareness of children with special needs.   Every Saturday a prompt is given to encourage people to write or tweet about something in order to help raise awareness of special needs.  This week’s theme is on carers and how we deal with stress.

If you would like to learn more about Special Saturday then you can do so though the following ways:

Facebook – http://www.facebook.com/SpecialSaturday

Twitter – follow @Specialsat and use the hashtag #specialsaturday

The Blog – http://specialsaturday.org/

Wendy at the Savette Gazette – http://www.savette.com/category/special-saturday/

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11 Responses to Carers – coping with stress

  1. Blue Sky says:

    I have so much admiration for you and how you cope, I have some of the anxiety and exhaustion right now that you describe, along with a feeling of being trapped – I guess that’s because when it’s 24/7 there is no escape. I hope I can grow into an attitude like yours eventually x

    • Aspie in the family says:

      Thanks Blue Sky. I understand how you feel; I get that sense of entrapment at times and I still get bouts of anxiety but it is not as bad as it used to be. It seems a strange thing to say that I have to work really hard to manage these issues but I do. The blog helps. Deb xx

  2. Tania says:

    It must be very hard with both of them out of school. We have faced some of the same issues as you and I know how, when everyone thinks you’re coping, you feel like you could just go into a padded room and scream until you have no voice left.
    Adding to the stress is the need to think ahead for potential problems – you are constantly on the alert because you know that the second you relax, something will go wrong and then you’ll berate yourself for taking your eye off the ball.
    Thinking of you.
    Tania

    • Aspie in the family says:

      Hi Tania. I know what you mean about being on alert. This is such an insightful comment because I’ve found the moment I relax then my children’s difficulties worsen and I feel terrible as a result. The work to maintain my children’s behaviours can’t be underestimated but how I describe what I do to other people is very hard. Its a total change in how I am with my children that is key to helping them manage their lives. Deb xx

  3. JuliesMum says:

    It’s amazing what you can adapt to, isn’t it? It sounds to me as if you are coping really well – and that you probably know when the stress gets to you. But it is a very hard slog. I do hope you can have a bit of a breakthrough some day eventually.

    • Aspie in the family says:

      Hi Juliesmum – you are right, it is amazing what we adapt to. We never know what we’re capable of until we’re in a particular situation but I think most parents would do what we’re doing for our children. It is a hard slog though and it would be nice if my children had a better time of it. Deb xx

  4. jontybabe says:

    A brilliant & honest post. It must be so difficult being isolated this way. Yet you face it with courage & unfailing love for yr children. I am in awe of how u cope. Hope that things improve for u all soon. X

    • Aspie in the family says:

      Thanks for the lovely message Jontybabe. I can’t deny its not easy but I try and find ways of easing the stress otherwise I shall just end up ill which is no good for my kids. Fingers crossed things will improve. Deb x

  5. Ann Beck says:

    A brilliant post, written from the heart – I totally empathise with you and also am learning to deal with my days of despair and overcome them. It’s a long journey accepting that your child or children is ‘different’ and their troubles and anxieties are magnified tenfold for us Mums and Dads. The love for our children will keep us going but we must love ourselves too if we are to survive :)
    xx

    • Aspie in the family says:

      Thanks for your lovely comment Ann. This is very true, loving ourselves besides our children. Its not easy to do when we are so driven to help our children but we have to learn to look after ourselves as well. Its a long journey we’re on. Deb x

  6. Pingback: Carers- Coping with illness #specialsaturday – The Aspie Side of Life

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