I started this in January and this is already my 12th post. I wondered after those initial flurry of posts and the waking up in the middle of the night with the need to get my thoughts down on paper, it would wear off. I thought there may come a point that I would exhaust all of the hot topics, the blog would die a slow death and it would then enter a resting place high up on an internet cloud. That may still happen but I’m not quite at that place yet and this morning when I heard the gentle humming coming from Joseph’s room at 0600, I was relieved that I would soon finally be able get up and get the macbook out and start typing again.
When I shared my first post via my own Facebook page, I alluded to the fact that it was hard to share the downs as well as the ups. I, like most parents like to sing my child’s praises but would never have dreamed of stating on Facebook “Today has been a shit day, I feel the weight of the world on my shoulders and I wish I had someone else’s life”; the blog allows me to have those moments although I would like to think I skirt around the houses a little better than that.
I was nervous around exposing my feelings and explained that only a close circle of friends and family truly know the struggles we have had, yet even now I have only shown you a glimpse into our lives. In those early days, when I was approached by a number of people who explained that they had been touched by what I had written, I felt a little embarrassed even though I’m not sure why. I suppose it’s because we have that public persona and exposing a side of you that could be considered as weak makes you feel vulnerable. It’s only now that I realise that my weaknesses have actually become my strengths.
I was and still not seeking approval from you as readers as to my parenting style. Neither am I seeking sympathy or praise; what I am searching for is understanding, awareness and acceptance. When reading it back over and over again, I worry more about my punctuation, spelling and grammar as opposed to writing something that could upset or offend someone (and that should not be interpreted as that I do not consider it at all or that I haven’t spotted a mistake or two). The only person I look to seek approval from is my Dad, who never says to his children that he thinks they’ve done anything great. He might tell the rest of his social circle but never his children.
My blogs are based on fact, with a huge injection of opinion, which I believe is my right. It will not be reflective of all parents views and it certainly won’t mirror views of all parents of children with special needs, but it’s mine and I won’t apologise for that. After the initial embarrassment, I felt spurred on to go further and not feel like I should have to hide our experiences or my opinions, hence the dedicated Facebook page.
Through the geeky analytics that are provided through the blog, I can see the obvious as to how many people have read it but also which country the reader is from, the internet browser and the time of day people most like to read (don’t worry it doesn’t show your address!) I’ve become fascinated by the people wanting to know more about us; I suppose a kind of watching me, watching you. I know that there are people who read the blog, through other people’s pages without liking the Facebook page. I also know that there are people who read it via twitter and google and I know that there are people who read it, but don’t like the page, or the post or say anything to me that they have read it; and that is all fine. I can see that some posts have been read more than others and again, that’s fine; I don’t expect people to be interested in everything I have to say. Whilst I have been overwhelmed (overused but don’t have the word in my vocabulary to go one level up) with the private messages, messages left on Facebook or the blog itself and yes they have encouraged me to go on; I don’t need it to justify my need to write. It’s been fantastic knowing that what I write has been informative, supportive, inspiring, funny and humbling and I appreciate the time taken to let me know what you think – even from complete strangers.
And whilst I say it’s fine to not hold your hand up high and say “I’m reading your blog”, it intrigues me that some people do read it privately and don’t acknowledge it either publicly or directly to me. What I do know is that there will always be watchers in life that read articles, blogs and Facebook pages and don’t feel the need to express their feelings. And that there is a small group of people who will just want to have a look round your life because they can. Similar to the people who stalk your Facebook account for traces of the parts you have unknowingly left public. But it’s ok! The blog is public and I am inviting you into our lives and I hope the ones who are secretly reading get as much from it as those who promote, share and talk about my blog; you have no need to be embarrassed that you are reading.
I suppose that leads me to another reason as to why I wanted to write this particular post. By liking my blog or associating with Joseph and I, you will not catch anything. You will not get a diagnosis of autism for your child and neither will you have seven years bad luck. There is no stigma attached to knowing us and you will not be cursed for the remainder of your lives.
A few years ago, we went on holiday with a family and there was concern around what the sleeping arrangements would be and I don’t think they were thinking of keys in a bowl. I am still puzzled to this day as to what the relevance of that comment was and whether sharing a room with Joseph would mean something unfortunate would happen to their children. Equally, I don’t think by me associating with people who are ‘normal’ will make Joseph (or me for that matter) any more normal than we already are. I am blessed to have friends and family who include us in their lives because they like us as people and can see past Joseph’s label and are not intimidated by him. Last year my partner shared a thought in recognition of Autism Awareness Day:
Do not fear people with autism, embrace them,
Do not spite people with autism, unite them,
Do not deny people with Autism accept them for then their abilities will shine.
I first learned about fight or flight mode aged 16 years in a psychology class and believed that I had probably only experienced this a few times in my young life. The heart racing and the wondering as to whether you’ll quietly walk away or whether you’ll stick around for 10 rounds. I might not experience the whole physiological affects each time when confronted with a situation and I may have my doubts as to which way I’ll go, but the outcome is always the same; I’m a fighter.
There is no immunisation you can have to protect yourself from Joseph or myself and if we infiltrate your lives, the only side effects you’ll feel are love, humour, compassion and loyalty for life.
By the way, my Dad’s social circle tell me he thinks the blog is great.
Keep on reading, keep on sharing 🙂