If you or someone you know has a baby or child with disabilities, then our March release, Parenting Your Disabled Child, is for you. Whether the problem is picked up in pregnancy or after birth, or is a result of an accident or sudden illness, Margaret Barrett takes you through the emotional roller coaster of diagnosis and on to coping strategies for babies and toddlers with developmental delay, sensory impairment or learning difficulties.
Below is an edited extract from the introduction:
The very fact that you are taking the time to look at this book suggests you or somebody close to you has been touched by the possibility of something being wrong with their child. If that is the case, you are probably at the beginning of a long journey aimed at finding out what you can do, where you can go for help. Whether this is your first or fifth baby, whether you are a novice parent or an experienced grandparent, that path is likely to be long and you will experience difficulties along the way.
The cause of the disability might be brain damage, a genetic or chromosomal disorder, metabolic disease or traumatic injury. The symptoms can include such things as cerebral palsy, developmental delay, sensory impairment, movement disorder and learning difficulties. Whatever the cause and symptoms, one thing all of you who find yourselves in this situation will have in common is the feeling of devastation, helplessness and uncertainty.
Some of you will have known from very soon after the birth – or even the later stages of pregnancy – that something has been discovered about your baby. For some this is seen as beneficial, in that they feel they can quickly get to grips with the situation and be directed towards agencies offering help, but for others the shock is overwhelming and can delay or even halt the bonding process as they try to come to terms with the fact that they will not have the normal healthy baby they were expecting. Generally speaking, though, finding out so quickly means that you might immediately lower your expectations with respect to your child’s development and adopt the attitude that any progress, however slight, will be welcome.
Some of you will have endured – and indeed may still be enduring – months of feeling instinctively that things are not right before obtaining confirmation of your suspicions. It might be argued that this scenario is easier to cope with, in that you will already have bonded with your baby before having to face up to the difficulties ahead. This can be counterbalanced, however, by an increasing lack of confidence and feelings of inadequacy if people fail to take your concerns seriously. While you will most probably have started out with normal expectations for your child, your introduction to disability will have been via a continued failure to reach milestones, which might result in a ‘He’ll never be able to achieve anything’ frame of mind.
Then there are those of you who, in what seems like an instant – a squeal of brakes, a sudden illness, a bang on the head – will have had to come to terms with the loss of the energetic outgoing child you knew and, instead, care for one who is as helpless and dependent as a newborn. As well as having to learn how to physically care for your child, you might also have had to replace the likelihood of university and a career with the hope that there might be some advances in regaining mobility and learning to communicate again. In some cases, there might be the additional agony of overwhelming feelings of guilt – you should have held on to him to prevent him running into the road, you should have noticed her high fever sooner, you should have stopped your child from climbing or whatever it was.
Too often, parents and close family members become so bogged down by the idea of disability, so wrapped up in hospital appointments, so bound by times of administering medication, so afraid that they will not be able to cope with or cater for their child’s needs, that they end up seeing the child as a problem and fail to recognize what is very often a dear little personality within. To me this is nothing less than a tragedy, since childhood is precious, whatever the situation, and something that can never be relived or recaptured. If I have one hope for this book, it is that it will help at least a few parents to find ways to cope with the prospect of raising a child with disabilities and enable them to experience the pleasures and pride which should be theirs by right.
The [book] contains some points that you should try to bear in mind as you are caring for your disabled baby. None of them is intended as a magic formula that will suddenly remove the problems associated with being the parents of a baby with a disability, but it is hoped that at least some of them may help you put things into perspective and make it a little easier to cope with the situation on a day-to-day basis. . .
Whether you read [it] from cover to cover, dip into chapters as you feel them to be relevant or come back to it time and time again for reassurance, I hope somewhere within these pages you will find guidance and support that enables you to become the relaxed and confident parent your disabled child is going to need.