Bringing up kids is no walk in the park. From toddler tantrums to, well, teenage ones, it takes supernatural reserves of love and patience to raise happy, well-adjusted children. Throw a chronic medical condition into the mix, and the task becomes even more daunting – it’s hard enough getting a child to eat vegetables, without having to worry about them taking their meds, too!
Hardly surprising then that a study by scientists in Italy found parents of children with MS felt less confident in their parenting skills than other mums and dads. The fact is, having a child with MS affects the whole family, from sibling relationships to your bond with your partner, and even your confidence in yourself.
If this sounds all too familiar, then rest assured you’re not alone. Yes, MS typically strikes between the ages of 20 and 40, but we now know that up to 10.5% of cases occur before the age of 16. Unfortunately, the fact that childhood cases occur less frequently than adult ones means there can be a bewildering lack of information about the disease for parents.
Arm yourself with the facts
That study we mentioned earlier? The researchers concluded that a lack of information affected the whole family, and even impacted on couples’ happiness levels. So knowledge is power. You’ll find plenty of helpful info on this website, from the basics to the very latest research breakthroughs. It’s also a good idea to contact national organisations such as the National Multiple Sclerosis Society, while online networks can be a great source of company and practical advice. Arming yourself with the facts will help you to navigate any symptoms that arise, and enable you to answer all your child’s questions.
Because there will be plenty of questions. From ‘what is MS?’ to ‘why me?’, your child will look to you for all the answers, so it’s important to be honest from the outset. Obviously the language you use will be dependent on your child’s age. For little ones keep it simple, but giving them the basic facts will help them to accept their condition from an early age, rather than it coming as a total shock when they’re older. And if you don’t know the answers, be honest about that, too – you can work them out together.
Work on your listening skills
The main thing is that your child knows they can come to you with any concerns, whether physical or emotional. The symptoms of MS are so variable, both from person to person and over time; this is challenging enough for adults, but for children it can be hard to deal with physical and mental changes, not to mention communicate any issues to their parents. Your child’s school will play an integral role in helping them adjust to everyday life, and should be able to provide additional learning/emotional support if need be. Likewise, your doctor will be able to refer you to the relevant services to support the whole family, so don’t be afraid to make use of those valuable resources.
Children are children
Of course, working out which issues are caused by your child’s medical condition, and what is simply down to their age can be tricky. Children with MS exhibit a range of emotions and behaviors such as aggression, depression and anxiety as a reaction to the diagnosis, while the condition itself can cause changes in mood and energy levels. That said, it’s important not to make too many allowances – siblings can feel jealous or resentful if they think the child with MS gets special attention. Firm boundaries (bedtime is bedtime, whether you have MS or not…) and good communication will help you navigate any given situation as a team.
Know when to let go
No matter how strong the urge to wrap your little one in cotton wool, it’s important to instil a sense of independence in them. If your child understands the importance of taking their meds, for example, they’ll be far more likely to do it for themselves, rather than just to keep Mum or Dad happy. Trusting them with certain responsibilities will also empower them, and help them make good health choices as an adult.
Finally, don’t forget to look after yourself! Running yourself ragged and worrying yourself sick won’t do anybody any favours. Yes, your child has been dealt a curveball, but there’s no reason it should stop you being a happy family. In fact, with a little teamwork, you may find it brings you all closer together. Take that, MS!