Yorkshire Grandma gave Joshua a birthday card with a badge on which really tickled me – it shows an L Plate and says ” Caution – New Adult”. So I pinned it proudly to Joshua’s cardigan yesterday for him to wear to school. I thought that way he can maybe squeeze out some more attention this week if he meets anyone who did not know that it has been his birthday and might trigger a conversation. I also loved the idea that people might make allowances for a new adult, like we do recently qualified or learner drivers, and that people would be more tolerant of his mistakes as he is still learning.
The reality is that I need a badge too : Learner : Caution New Special Needs Mum . Although we were thrown into this world of disability 18 years ago now, I still feel as though I am a beginner as there is so much to learn and take in. This world is full of jargon that is unfamiliar , like EHCP, Personal Independence Payment, orthotics….. let alone the unpronounceable names of Joshua’s anti -epileptic drugs . I am sure that I have mentioned before, when Joshua’s nursery school teacher recognised that he was going to need help in mainstream school and she told me that we needed to get him ” statemented”. I had no idea what she was talking about and I heard that he was going to be “sectioned”, so I hesitated and then asked ” Is there really any need for that?” imagining him being locked away in some assylum for the rest of his life!
It is like any foreign language, you only learn it by using it and by asking questions and soon they become familiar phrases that you can use with confidence. At the outset you need a helpful interpreter, and we had one of those in our lovely health visitor and then more recently, our social workers have acted in that capacity too. Luckily I am not afraid to ask when I do not know something, rather than pretending than I am bilingual. Sometimes it is easier to ask other parents what something means and that is another benefit of our parent coffee mornings as we will often share , asking ” Does anybody know what…..is/mean/involves?” and more often than not, somebody there knows the answer .
As we have now stepped into the adult world of disability from the more familiar children’s world, we have already encountered new jargon, such as DOL – Deprivation of Liberty- and Decision Support Tool! I hope for our last year at school ,and through this blog perhaps, I might be able to de-mystify some of the jargon so that entering this foreign country is less daunting for others.