The importance of working together in a collaborative and cooperative way is key. I make no excuse for wearing my heart on my sleeve and am not ashamed that my emotions and feelings are often laid bare. I do however believe, that no one individual has all the answers, and though a Father, and parent carer, I recognise that I have a perspective built upon what I see and feel every day, together with that which I learn through reading, studying and networking. That, I realise is only one part of the story and I need to bring it together with other, more qualified people, who can (and are willing) take my input into account, and work with us to determine the next steps.
Any parent will argue that they know their children best and what is best for them. I have had to learn that this is not always the case and that we do need other learned professionals to help us. We have tracked our sons condition, by the hour, by the day, recorded those times when he is low, the times he is happy, what is happening at that time that may have had a bearing on it. We track his headaches and migraines, we track his seizures and absences, we track his meltdowns, his habits, what he does to comfort himself, what excites him, what scares him. With everything we have discovered and understood, we have researched and read up on – boy have we researched – and formed a ‘parental opinion’.
We have developed a very good relationship with all Marc’s consultants and doctor’s, nurses and care support and through these dedicated people, we have learned to understand, we are no alone, and we are not the first – nor will we be the last, going through these challenges. This, is an important understanding for anyone caring for a child or family member, others do have similar challenges and though nobody is exactly the same, what we describe, comes as no surprise to these professionals.
This week, we sat with our sons Epilepsy consultant and talked through his seizures over the last 6 months. Marc has had some horrors within that period, but I asked him to listen to a wider picture covering the last 18 months. I was able to show how seizures and migraines related to medicine changes, how meltdowns took hold of Marc at various times, his overall low esteem, and how brighter changes have been seen when we understood more about Autism and added some interventions to support this condition, and the impact of what is called a non-epileptic attack disorder (NEAD).
I dared to suggest that we should withdraw a certain medicine as we believed that particular medicine was contribution to an increase in our sons Anxiety and Depression – my tracking supported this claim – and it was agreed this was an unfortunate, but known side effect in around 1 in 100 people.
Our consultant listened, discussed our findings and was happy to support a withdrawal of this particular medicine and gave us some contacts in respect of Autism to assist with mindfulness and cognitive behavioural therapy. He concluded by saying, the underlying aspect of the Autism is likely to be that aspect preventing him controlling the seizures fully and that we had put across our understanding superbly that he was happy to support our view.
I think my message in this blog, is that our professionals probably don’t know all the answers themselves and we should not expect them too, but we do need to work with them to help them understand exactly what is happening. My professional background may have allowed me to be far more detailed in the tracking and research, but I would urge anyone who is in a similar situation to ourselves, to build a positive and productive relationship with your professionals, talk with them, explain what you have experienced, help them help you (or the person you care for). They do have time for you, as we have found out and we do need them and their wisdom and experience. They need our cooperation and contribution to help arrive at appropriate diagnosis and treatment.
I would urge as well, do nothing different unless your doctor or consultant gives their blessing, you must have their support. That is why we did our homework, we believed, but we didn’t know, we shared that belief, and on this occasion, it was supported.
We now also believe, we have taken a major step to helping remove some of the causes for the mind terrors that Marc has been experiencing and with support from other professionals we can build upon a brighter outlook.
We all stand together 🙂