Although parents are best placed to coordinate medical treatment, education, social services, benefits, grants, charities, etc, they need good support to do this more effectively.
Parents and carers of children with CHARGE need to have the fullest picture possible of their child's condition so they can be empowered to make the decisions that are right for them, and their child.
Appropriate support from relatives, friends, and professionals can make a very big difference.
Children with CHARGE cover a very broad spectrum of ability and disability. They must be treated as individuals not as a syndrome.
Having a child is tiring, sometimes exhausting. Having a child with CHARGE is always exhausting and, for some, unmanageable. Multiple disability means multiple heartache. Being told your child is deaf can be devastating. Being told your child is blind can be devastating. Being told your child is both deaf and blind enters a new dimension. Add to this all the other anomalies and it can become a marathon with no end in sight. Yet despite this people still come through. We all have resources within us to cope in times of hardship but we can still use support if it is offered at the right time in the right way.
It always comes as a shock to any parent to discover that their baby has a problem. With CHARGE this is made even harder because the problems are multiple and complex. Finding out about these problems usually takes weeks, sometimes even months and years.
For example, one boy with CHARGE had been regularly seen by eye specialists for over 5 years before his mother overheard that, as well as having the characteristic CHARGE anomaly of bi-lateral coloboma, he also had an astigmatism. His mother was very upset because she felt deceived. She'd been told that her son's sight in his less damaged eye would be near perfect with glasses. Now after all these years she'd discovered that his eyes were actually worse than she'd thought.
This failure to disclose information only causes upset and creates distrust. Professionals who think they are being kind or responsible by not 'overloading' the parents can be doing a great disservice. Unfortunately this happens on a much larger scale with CHARGE because there is so much more to disclose than with other conditions, and so many more professionals are involved.
Although it can be very overwhelming, parents do want to know as much as possible about their child's condition. They need as much information as possible to help them in the difficult decisions that every carer of someone with CHARGE faces.
The following points are worth taking into consideration when giving information to parents and carers about their child:
With CHARGE the number of different professionals involved at any one time is staggering. (See also 'CHARGE -- working together')
It's usually the parents who are the coordinators of their child's treatment and care. No one else has the same overview as a parent or carer. No one else is in a position to coordinate medical treatment, social services, benefits, grants, charities, education, etc. This is a far from ideal situation but sadly it is the harsh reality that parents must face.
This role of coordinator would be a difficult job for anyone. Bringing up a child with CHARGE is also difficult. Therefore, doing both jobs together means that parents must be kept up to date and fully informed from all sources, so that they can get on with these very important tasks.
The information that parents need must be accurate and contain all of the options, and possibilities, available. Disclosure of this information, if done in a sensitive and understanding way, can be very helpful. By giving a parent the full range of possibilities and explaining that there are many factors that determine how any of us will turn out, a professional is allowing parents to keep an open mind on their child's future. For example, blunt statements such as 'your child will never be able to read' when there is a possibility that they might, can be very damaging and even become a self-fulfilling prophecy. Saying that 'although your child's eyesight is in poor condition now there are some children in a similar condition who have improved', allows parents to realise the gravity of the situation but to have hope and encouragement to seek ways of maximising their child's potential. If a parent feels positive towards their child, and the future of their child, then the outcome has more chance to be positive.
Due to the complex nature of CHARGE, children often spend long periods in hospitals. There is support available, such as the CHARGE Family Support Group and Sense. They can offer support and advice when it is most needed. Parents need to feel they are not alone in this situation. They also want to help their baby as much as possible and feel that they are contributing in some way.
Both the CHARGE Family Support Group, and Sense can help to empower parents and carers. They can be involved from the moment CHARGE is identified. There is no need to wait (See CHARGE - Information sheet 5, 'CHARGE working together'). Experience has shown that there is great benefit in early intervention. It does not interfere in any way with the medical side of things, on the contrary, it can be good for the child, and offer support for the carers.
Many parents of a child with CHARGE are under immense strain, so please be sensitive and practical with any help or support you offer.