Introducing boy number two and me
Is it self indulgent to be reflecting on my experiences when actually it is about him and his experiences??
I feel it’s better to be a reflective rather than reactive parent, so I guess it’s ok….
So here goes, this is me- a mum of three boys, a wife, a business owner, a brownie leader and a lover of all things chocolate and many things wine. The list of ‘what I am’ could go on and on, however, the point is that as parents we often wear many hats and take on many roles, but however many hats I wear, the first one of the list is without question my favourite, my most important, my most challenging and my most rewarding job.
So who is ‘him’ that I am writing about? He is my middle son (and I use ‘my’ as the term as, yes he has a dad too, and we do share many viewpoints and feelings, but I am writing from my personal viewpoint, so ‘my’ it is!). He has a diagnosis of episodic ataxia type 1 and verbal dyspraxia. In short, his muscles don’t always do what he wants them to, he often has periods of immobility and cannot form correct speech and finds it difficult to verbally communicate. He has some associated learning difficulties and needs a fair bit of support to learn what comes easily to others. He is classed as a person with a disability, and whist on a spectrum of disability, he is does not have as much to deal with as many, he does have more than the average bear to deal with to get through every day.
I am always bursting with pride for all of my children, and number two is no different. Everyday I am proud of him and his efforts and achievements, every day we have laughter with him. Most days I can fully accept his condition and all that comes with it, some days I find it hard to think of his future, some days I am filled with deep sadness about it all and some days I am keenly aware and defensive of others views of him. Most days I don’t care what others think about him and how he appears, but occasionally I really do care. Some days it’s all of the above, and as I write I realise that much of what I say and think about having a child with a disability and additional needs is a contradiction to itself, but, I guess that’s part of the ride we are on.
It’s probably a good point in time to throw an extra spice into the mix. I am a professional in the area of special educational needs and disability as well as being a parent. I am an educational psychologist with a doctoral level qualification in the area. I run a business employing other professionals and provide services to families such as us and provide support to children like my son- and started on this career long before having children, so no, having boy number two was not what motivated my career choice. I do however feel that it has enhanced my professional practise immensely (I will come to that point another time!).
Many folk have said to me that he is so lucky to have a parent who knows so much about ‘these things’, however, my thoughts are this….
Yes I am in a good position to be able to understand what should be happening for him and what the implications of his condition might be for him. But as I said earlier, being a parent is my first and most important job, so it’s never easy to be the professional and have objective professional judgement when your dearest thing in the world is involved. A professional educational psychologist I am, but professional parent I am not! There is no degree for being a parent! Although you could argue that much like any qualification there are lots of tests along the way…
So why write all of this in the first place? A reasonably unique position of being the parent and the professional? Perhaps. The want to share with others my experiences and thoughts from this point of view? Perhaps. Some sort of catharsis? Perhaps. Finding the support of other parents who have children with additional needs and or disabilities? Perhaps.
A combination of all of the above? Probably.
And so I will write about my thoughts and experiences on the whole thing from this possibly unusual viewpoint. I am not seeking sympathy as it is not necessary (plus it makes me emotional!), rather just a thought sharing process. A final thought for beginning on this process of writing it down is that the disability and extra needs are not at the centre of our life, it is something we have to deal with, but we are fortunate to not have to revolve our whole life around it (if you are contradiction spotting- well done there is one more tick for noticing that whilst our life does not revolve around this whole thing, I am spending time writing down my thoughts about it all!).
So here goes, the blog about son number two, parenting disabilities and additional needs and being the parent and professional.