April is Autism Awareness month and it just happens to be the month of birth for my first-born who is 12 tomorrow. Back then I kept a diary, which proved to be useful when trying to remember things specialists kept asking me about once we hit that stage in his life. I wished I'd kept it up, especially when, as happened the other day, I realised that Long Legs had stopped doing something and I couldn't remember when it had happened. Funniest thing is, I can't remember what that thing is! For those who have never read my blog, I have two boys both on the spectrum. They are what is referred to as 'highly functioning'. This, however, is not to be confused with 'less challenging'. We have our daily challenges and our daily triumphs.
So in the spirit of all things autism awareness-y (not a word I know) I had a crazy idea to document every single day of our lives for the next year before Long Legs becomes a teenager and the Short One reaches double digits. It's a bit of a crazy experiment but documenting our days so I can look back and see how both of my boys change over the next year may prevent further incidents of 'when did he stop/start doing that?!' My other objectives are to not just raise awareness that ASD exists, but to raise awareness about exactly how it manifests itself and therapies which are backed by research to improve the difficulties associated with ASD. I hope to encourage any parent struggling to be heard, as I was myself many years ago, that they can be their child's strongest advocate and, by adequately educating themselves about the characteristics of ASD, they will feel empowered to do so. On the topic of the name, I much prefer ASC - Autism Spectrum Condition, my boys are different, not less. But for the sake of not confusing everyone who knows it as ASD, that's the way we'll go from here on.
One thing that is of particular interest to me, having seen various articles, is just how much it costs to raise a child (or two) on the autism spectrum. Us ASD parents all seem to spend money left, right and centre on things for our children but what are we actually spending? I'm not going to record lost earnings, although the reality is a lot of parents don't work or have to give up jobs due to needing to be around for their child with ASD. But you may be surprised by what I do include, you may wrinkle your face and think 'what is she on?', that cost is a luxury.
Having gone back to Uni last year to do my postgraduate course on Autism, I learned all about evidence based practices (EBPs). These are therapies and practices that have a proven benefit via extensive research that lead to positive outcomes for individuals on the spectrum. There is lots out there claiming to be of benefit but not wanting to suffer the wrath of my Uni lecturer :), who incidentally is in the process of writing a book on parent empowerment, I will only talk about EBP's when I endeavour to rationalise every single thing I class as an expense that is related to my boys' condition. As you will discover, not every attempt to provide therapy for our children comes in the form of a specialist therapy session.
It's going to be interesting experiment for me but I hope for anyone who reads this, they do manage to take something from it too and I can declare my autism awareness-y experiment a success! I apologise in advance for typos, random garble and sentences that are far too long but if I am going to attempt to write something every day, I can anticipate them already. In the meantime, I have a birthday cake to make :D Til tomorrow x
No comments:
Post a Comment