4. You are the expert in your child so make it your job to keep the professionals fully informed and up to date. The doctors and therapists have undoubtedly got a lot of experience of many children, and they may have seen most things before. But they have never seen your child before and, even when they do, it will be for 15 minutes rather than living with your child 24/7. So always have the confidence to tell them how your child is day to day and how things might have changed since your previous appointment. Hospital appointments can be daunting and overwhelming and so I would recommend that you make notes in advance and list out the questions and issues that you want to cover during the appointment. There is nothing more frustrating than to get home after a long-awaited appointment and to realise that you have forgotten to ask a question and then you have to wait for another 6 months or so, before you get another opportunity.
If you can do, it is helpful if you can keep a diary of events in the run up to the appointment. For example, Joshua has epilepsy and so I try to keep a record of the number of seizures and when he has needed his rescue medication on my kitchen calendar. Otherwise, when the doctor asks how many seizures he has, I always found that I could only recall the last couple of days rather than the whole period between appointments.
I prefer to go to hospital appointments with my husband, so that 2 sets of ears hear what is said. So often, we have both heard different things in the same appointment. obviously we heard the same words, but have interpreted them differently. It is also helpful to have someone else there, so that one person can concentrate on your child and keep them distracted, while the other can focus and listen and speak to the Doctor. Joshua now loves to mess about with Doctor’s computers and I am always anxious that he will delete something critical or cause an NHS network crash!
One of my key frustrations over the years has been that we are sent endless appointments at hospitals, with a range of experts in their own field. But there has been nobody who has been able to consider Joshua as a whole. In particular since his epilepsy became more of a problem, that became the main focus and none of the neurologists wanted to discuss his walking or behaviour for instance. You will only have so much time and energy for all these appointments, so a general paediatrics appointment would have been useful for us. While we were focussed on managing Joshua’s seizures, we all neglected the fact that his walking was deteriorating.
Once your child gets to school, if they have a ‘statement’ which details what level of support your child will receive, then there should be an Annual Review when everyone who is involved with your child is invited to discuss their progress and to suggest what changes need to be made. This is a great opportunity to get everyone around the same table and to focus on your child only, so I would urge you to, if the school do not, invite all of the professionals who impact on your child and to attend yourself. During that process your views as parent are just as valid as those of the professionals but it helps them also to see the child through your eyes and to compare that with their views as professionals. We have Joshua’s Annual Review on Wednesday this week, which I am expecting to be well attended. No doubt I will report later this week on how it goes.