When you become the parent of a child with disabilities you also become an often unwilling passenger on an emotional roller coaster which - especially in the early months - is likely to bring considerably more lows than highs while you struggle to adjust to the situation. You might find yourself questioning your reactions - does feeling uncertain about your child make you a bad parent, are you the only one who feels like this or do other parents feel the same, does being scared of the future mean you are weak, will you always feel like this or will it pass?
The important thing to realise is that there is no right or wrong way to feel. There are no rules and nobody has the right to judge you. We are all individuals and will all react in our own particular way. You might feel that other parents in a similar situation have handled it better but they may, in fact, be experiencing the same emotional turmoil as you and are just managing to hide it. Undoubtedly you will experience lows of sadness and despair that are almost unbearable but these will be counteracted by almost unimaginable highs when your child achieves things that were predicted to be impossible.
Try to recognise this roller coaster for what it is - simply a ride that although longer than most will gradually slow down, and may even eventually come to a halt. It is guaranteed that everything you are feeling or have felt has at some point been felt by others, negative thoughts do not make you a bad or failing parent, self doubt doesn’t mean you are weak, ecstatic reactions to small achievements aren’t over the top and you aren’t being unrealistic if you hope the doctors have got it all wrong. You are human, and these fluctuations of emotion are perfectly natural at what is after all a very difficult stage in your life - and as you get to know the special little person that is your child you will start to feel more in control of the ride.
Margaret Barrett qualified as a teacher of mentally disabled children and went on to teach children with multiple handicaps at specialist units at schools in Manchester. She trained in developmental education in the USA at the Institutes for the Achievement of Human Potential, Philadelphia, for brain-injured children, returning to the UK to work for a number of charities concerned with brain injured children. During her career she has helped families in several countries including Switzerland, Australia, Finland, Sri Lanka and Japan. She is based in South Wales and currently makes twice yearly visits to Japan to work with children there.