Relief and sadness

I’ve been a bit quiet recently both here and on twitter…mostly because when the day was done I have been doing my marking & planning and falling swiftly into bed. Sleep is a commodity in short supply in this house at the moment; between anxiety, coughs, asthma and stress levels no-one has been getting enough. I hope things will improve and soon…

But to the point of today’s post…our precious Boyo finally has a diagnosis.

Although there is more to the story than that simple statement gives. We saw a paediatrician yesterday who was Boyo’s paediatrician at birth and for the following 3 1/2 years. She referred us onto a more local team when there was a need for more intensive input from other services (physiotherapy, occupational therapy) which made sense at the time. However the paediatrician we were referred to hasn’t got the immense knowledge of the other one; and raised an issue and said ‘you are going to have to go and see Dr X ‘. For those local to us who know this specific paediatrician, you will be glad to know that she was only running 20mins late, however we were the first appointment of the day!

We sat, we talked, we raised issues. She understood, she acknowledged and she helped. She knows birth family, she knows some of his siblings. She agrees with us that there is a reasonable chance of FASD, because she knows the back story there was no awkward explanations. She also said that she won’t diagnosis FASD until she has ruled other things out.

We talked about the issues. We talked about what we were doing. We talked genetics. We talked about foster carers and adequate care. She knows the FC’s and said something very eye opening about them…not in a bad way, but the first time a professional has actually said something we have said to each other before. She also knows Jelly’s FC’s and is incredibly positive about them…which we are too.

We discussed attachment issues, we talked about learning difficulties. And she understood. And she listened and heard and then she responded. She understood why we needed something to say to people when they ask what is wrong. She understood that we are being limited in accessing support because there was nothing concrete…she also thinks that, that is wrong, but knows it is what happens.

So she gave us a diagnosis…which is vague enough that it will cover all issues; and sounds complicated enough that people may just listen. Boyo now has ‘complex neurological trauma and associated difficulties’ and we will have a letter soon (as will school) to prove it.

When we started down this path of acknowledging Boyo needed additional help I didn’t want a label for him. Labels are limiting and people hear them and think they know what needs doing. I have come to understand that the system requires a label, and so am grateful that we finally have one.

So I feel relief, that someone listened and heard us and has actually helped us. But sadness because it also acknowledges that there is something wrong. We love that boy (& his brother) beyond measure; and I would change the world for them if I could. But this is the world we are living in and as such; we have to find ways to help him/them cope.