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After Wesley had had a number of fits, we went to the doctor and he was referred to a consultant paediatrician, who neither diagnosed RAS, nor explained the cause of the fits, stating only that the seizures were not dangerous and that Wes would probably ‘grow out of it’ (whatever ‘it’ was!). Six weeks later we ended up at hospital one Saturday, when Wes had what appeared to be two huge and prolonged convulsions, followed by long periods of unconsciousness. These fits were much more extreme than previously, and we thought that something qualitatively different from the previous episodes had taken place – it was extremely anxiety provoking. Wes stayed in hospital overnight and was diagnosed as having RAS by another consultant. A STARS leaflet was handed to us and this was the start of a process of understanding better what RAS involved and what Wesley was experiencing. We had received little in the way of support from either consultant, though, other than the increasingly familiar ‘reassurance’ that Wes was ‘not in danger and would probably grow out of it’.
Wesley having RAS has not really changed either of our outlooks on life, though we have greater awareness of and empathy for parents of disabled children. However it has had a big impact on us as a family and on how we have experienced life.
Of course, life with two young children is demanding, but RAS has added significantly to the stresses, strains and fatigue of everyday life within our household – at times we have been desperate and not coped. Of course we have enjoyment and fun too – but over the last year its been a big challenge at times to be relaxed enough to experience this. We have tried to make the point in the STARS leaflet about not ‘wrapping up in cotton wool’ central to how we do things with Wesley. But we have gradually come to accept – through difficult experience - that sometimes we could not go to the places, nor undertake the activities that we would usually have done in case Wes had a fit in a situation that was very difficult to manage and so, too stressful. Wes can have fit after fit after fit, in situations where he is not able to recover properly by having a sleep. This sleep recovery usually means being in a calm, quiet place, being held by one of us. When he has multiple fits it is highly stressful and distressing and one of our goals is to try to avoid this happening. At times it has felt nerve-wracking, almost like trying to monitor and micro-manage Wesley’s every movement. RAS arrived at a time when Jasmine was about to start school – a process that has placed considerable demands on her. She has required a lot of support, which at times has proved difficult to provide because of RAS. Jasmine becoming distressed at the school door, not wanting to be left, and Wesley having a fit at the same time has happened several times. At times Jasmine’s life at home is significantly disrupted. When one of us is with both children and Wes has a fit, she has to fit in completely with the demands of the situation – not easy for a 4-5 year old. Jasmine is pretty accepting of Wesley’s fits and has a balanced understanding of what is going on – she has been involved all the way through. But we often struggle not to be reminding her all the time to ‘be careful’ with her brother. Though she appears pretty relaxed about Wes’s fits at home, it may be that she feels a high degree of responsibility and high anxiety, when Wes has a fit in a situation where another adult is looking after them. It may also be that our stress and anxiety, heightened by RAS and its impact, have contributed to her anger/distress outbursts – not at the time of Wes’s fits. Finding someone to provide some child-care has not been easy. We have found that not all child carers (not surprisingly) are equipped or willing to deal with RAS and its consequences, even when reasonably well informed. We had planned to start some child-care 6 months ago to fit in with our work arrangements and commitments, but it is only now (August 05) that we have some child-care in place, and it is starting to provide some relief. We are also just starting to support ourselves a bit more by getting better at asking other people (friends and family) to look after Wes occasionally. Not being able to do this over the past year has felt incredibly pressured and we have experienced a very high sense of ‘over demand’ on our personal, practical and emotional resources. But we are just starting to emerge from what has sometimes felt like an unbearable and unsustainable experience, which at times has been on the edge of desperation.
Receiving the various STARS information leaflets and the Frequently Asked Questions (and answers) information were particularly useful, because these enabled us to start understanding RAS better, including some of the background to the condition and the experiences of others. On becoming a member of STARS, it was also very useful to be able to have information about RAS sent automatically to Wesley’s doctor – a great system, and to have information to give to the organisers of the parent-toddler groups and toy library that we go to. We also contacted the helpline and spoke to Trudie, which was very reassuring, but also practically very useful. Trudie gave us the name of a consultant paediatrician in London who is a specialist in RAS and who we have now seen. We have also recently begun to use the newsletters and the links to other sites and articles as well as to post a message asking for contact with other parents and families on the e-bulletin.
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