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Respite – for a special needs parent

In my last blog I talked about the personal difficulties I have faced and the emotional strain that has been brought upon us from raising our special needs daughter Olivia. I am not some superior being, who can cope with all the difficulties life throws my way, quite the opposite – I have hit rock bottom so often I know it too well.

Since Olivia’s birth 18 years ago, her special needs have produced untold extra work, stress and worry for both my husband and I. As a result of this and coupled with sleepless nights this can bring you to breaking point more easily, than if your life was less demanding initially.

We all have our own physical and emotional limits and there is no shame in admitting you have reached them and to be honest, I would still prefer to battle on without asking for help rather than admitting to myself that I am not coping. I have always been a person that copes with most things that life throws my way – a ‘get on & deal with it’ kind of person. However with the support of my husband and the parental experience I have gained, my low patches are more short lived but sometimes though, there appears to be no relief in sight.

The difficulties we face on a daily basis can cause physical and emotional tiredness which can cloud your judgement, making everything an effort and easily transforming molehills into mountains. We all need some time out or just a bit of breathing space from time to time, it allows you to re-evaluate your life, so you can think more clearly. We all know when we are physically tired but you may not realise straight away that you are emotionally tired. I know I didn’t at first and signs to watch out for, you may cry more easily, be more inclined to lose your patience at the drop of a hat or just lose the will to carry on.

I have realised there is no shame in admitting you need some respite, it doesn’t make you an inadequate parent, just one facing demands which are too great. Respite for Olivia and us does make enough difference for us to be able to cope again.

This week Olivia went to her respite centre for a week’s holiday, the first time she has been away from us for more than three nights in a very long time. I think we were all ready to have a short period of respite, it is all too easy to think about how we feel as parents, however it is Olivia who faces the greatest difficulties each day and the short holiday allows her the freedom to express herself, without parental judgement.

Despite the difficulties, I still find it upsetting whilst packing a case of clothes and cuddly toys for my only child, in the knowledge that due to her disabilities you need to have a short break away from each other. Olivia has had respite for a number of years, previously being included within a small family, however as she is now in her early adult years, she attends an adult respite centre only a few miles from home.

The decision for Olivia to attend this centre took many months of discussions between my husband and I – were they the right surroundings, how would she fit in with much older adults some with much more profound difficulties and also would she be able to thrive. Olivia had a number of tea visits, to allow her to make her own choice and so that we could be safe in the knowledge she would be happy and be able to express herself freely.

We have realised that there is a pattern of events when Olivia goes to respite, the week leading up to it, we hear nothing else other than is “is it tomorrow I go to Respite” and for the first 24 hours of her being there, we receive untold number of text messages “Love you” “Love xxx to you” “Love ok” and as she has limited reading and writing abilities, the text messages are generally the same. We both love receiving these messages and find ourselves constantly checking the mobile phone, as we know she is still thinking of us but just going through the initial settling in period.

However by day two the messages stop as her daily routine takes a different turn and consumes her attention. Now you would think we would use this time to reflect on our own lives but somehow we become consumed with the loss of Olivia, the sound of her voice, the lack of cuddles and her constant desire to know what the day holds for her and we find she is at the centre of most of our thoughts and discussions. There is a massive void in our life when she is not with us as our lives revolve around her and it has taken many years for us to try and fill it.

We have realised we should not feel guilty for having this time of respite it allows us to re-charge our batteries, regain our physical and mental strength and to allow my husband and I to spend time together. However it does make us realise what an impact Olivia has had on our lives and how much of our time is spent caring for her.

We cannot imagine life without her, but as she develops in her adulthood, we realise our path through life will take many different turns and the next step will be loosening the apron strings and allowing her to develop and grow into the beautiful, loving and caring young adult that she is becoming and by trying to minimise the risk of society judging her on her unique qualities and disabilities.

For our next holiday, I will be purchasing a policy with Free Spirit travel insurance to ensure all of my daughters serious medical conditions are covered, just for that extra peace of mind.

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