Having a sick child may mean that you have to accept many bitter pills concerning your child. One of such bitter pills is your child’s development. Every parent who has a child knows that one of the joys of parenthood is witnessing the attainment of various milestones by their child. It seems like the most natural thing to expect from a growing child. The beauty of beholding the newborn and watching them blossom as the months go by creates lasting memories that parents capture, share and treasure.
Unfortunately, the incidence of sickness means that some families are robbed of this . It is a devastating blow for all parents in this category. From new parents who never get to experience these emotions to experienced parents who experience a certain kind of grief for their child. The existence of other children earlier born in the home means that there is a constant unconscious tendency to compare the inabilities of the sick child against the abilities of other existing siblings. Though not deliberate, this mental exercise can leave the carer in a state of grief and helplessness. For the new parent, this blissful ignorance is taken for granted.
One of the impacts of lots of hospitalisation early in a child’s life is that the child misses the opportunity to experience the freedom of trial and error offered to them by being able to roam freely in their natural habitat- home. Children in hospital find themselves confined to beds, cots, playrooms and generally- four walls. This affects all children in different ways irrespective of their physical abilities. Even where physically able to explore, the restrictions imposed on them may be the only way to safely administer all that they require to be nursed back to health. For the more delicate and less able children, these restrictionss and their physical inability to explore their surroundings further compound the issues affecting their development.
Thankfully not all children with life long illnesses have to remain hospitalised. Some recover as they grow while others are managed at home with medication, care and experience. Irrespective of the category Sick children later fall into, the long stays in hospital take their toll on early development. Some escape with mild delays that leave them playing catch up with their peers while others remain severely delayed. Speech delays, movement delays, feeding delays, social and communication delays are not uncommon.
It is therefore important as a parent carer to be prepared in terms of your expectation from your sick child. While parent carers seldom admit that they set high expectations for their sick children, their sadness at their children’s inabilities can be interpreted as such. Here are a few strategies that a Parent carer might find useful in helping them deal with their feelings of sadness and helplessness concerning their child’s development;
- Give your child time : As highlighted earlier, children require time to recover from the effects of frequent hospitalisation early in life. Even older children who become unwell and needing frequent hospitalisation also suffer from these same effects. They deal with feelings of shock and uncertainty about the future. They also have little understanding about the effects of the new diagnosis on their lives. Parent carers need to give enough time for things to settle after their sick children are discharged for some of the effects of hospital long stays to wear off. For example A recuperating child who may be finding it difficult to settle back into routines at home may be seen as becoming difficult. Parents and carers also need to give themselves time to understand the full implications of the prognosis for their child’s future health, development and general well being. The dust always settles in the end and every family always finds a way that will work for them as long as they stay calm and patient through the whole process.
- Try to avoid comparison : The growth and development of a child can sometimes feel like a race. Children appear to constantly face comparisons because their levels of development seem to be constantly measured based on scales and milestones. In reality, these scales and milestones should only be guides as they are derived from averages and do not reflect the differences inherent in the vast population of children’s statistics from which they are derived. More importantly, when a child is sick or recovering, these scales should not apply. Every child is different. Even two children with the same condition may be affected differently by the illness. Therefore to cope better with the possibilities regarding a child’s development, it may be a good idea to view your child individually and measure their progress based on what they were previously able to achieve so that even the most infinitesimal progress can be celebrated. If comparisons are necessary, then they have to be fair and be from a category that the sick-child actually falls under.
- Do not be too hard on yourself : It is quite common as a parent to beat yourself up about everything relating to your child. This is usually more on parent carers or any parent under any form of stress as a result of the pressure imposed on them by virtue of their position as parent carers. Parent carers may experience sadness because they feel like they are constantly comparing their child one minute and not comparing them enough the next minute. These feelings are very normal. Every parent wants the best for their child. It is quite normal and natural to look up and see how we are faring against others and just because you are a parent carer, you are not exempted from this feeling. What is really not normal is for a child to be unwell and so this is why your child is falling behind. You have to come to terms with this in your own time and at your own pace. While getting to the point of understanding your child, try not to spend most of the time beating yourself up about wishing your child could do better.
- Try to stay informed : Knowledge they say is power. You may be enjoying some bliss by choosing to stay ignorant about your child’s condition but that same ignorance may be the real reason for all the apprehension you experience concerning your child’s development. By remaining in the dark you are left with only blank spaces which you may unfortunately be making bigger than they really are. When you feel ready, it will be a good idea to start asking these questions. Find out as much information as you can concerning what to expect the impact of your illness to be on their development. Confronting these answers means that you start to find solutions. Solutions may lead you to finding support for you, your child and even for the rest of the family to help you deal better with the challenges that lie ahead. Some developmental delays are easily managed when detected early as well as when the child is young. In addition to the information you get from health professionals, here are some websites I found useful. NHS choices, Rare disease UK and GOSH (Great Ormond Street Hospital) websites.
- Connect with other Parent carers : One of the ways to reduce the anxiety associated with worrying about your child’s development is by connecting with other parent carers. Networking has never been easier for parents during this information and technology age. Parent carers can link up face to face by meeting one another. Local carer groups, schools, hospital wards, outpatient appointments etc provide these opportunities for parent carers to form these connections. They can also to link up with other parents remotely through the internet and social media. Parents can connect with others whose children suffer from similar conditions and illnesses as their children. Sometimes this may not be possible especially when the illness is very rare. However the good news is that irrespective of the condition that a child has, all parents share the common bond of “caring” for their children in the best way possible, This means that they all have different experiences and have learnt many lessons and ways of coping with the stresses which the illnesses pose. This experiences when shared can help reduce the alienation that worrying about your child’s health can create. another. There are many organisations in the UK that provide the platform for parents to connect with one another. Some of them include Carers UK, Contact a family and local carers unions. Also depending on what condition your child suffers from, there are also many groups on social media.
So no matter how your child is faring developmentally try not to stay stuck, Remember that there is always help out there, All you have to do is reach out!
Thank you for reading.
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