Welcome to my very first blog!!
It’s very fitting that my first featured blog is with the marvellous Claire and her blog Life with the A word.
I met Claire 4 years ago now and we didn’t get off to the best of starts, it’s a long story but our “friendship” has been in quotation marks ever since.
Claire is one of the most passionate, annoying collegues I know, and when she told me that “Moo bag” Madison was diagnosed with ASD I was lost for words but at the same time I knew Claire would face every obstacle that was coming her way with zeal and google docs full of notes and research.
Claire’s most recent blog Media and the A word discusses Autism and the media. Like Claire mentions I’ve also noticed all the recent shows and the celebrities that have opened up about their battles and experiences with ASD. I would never pretend that I’m an expert but I do understand that ever diagnosis is different no two people’s journey will be the same.
I would love to see a society that acknowledges this and also a labour market that is open to accepting and inclusion for people of all abilities.
Claire was kind enough to answer a few questions I had:
- I’m sure there are parents out there who are at the beginning of their journey. Where do you start if you feel your child may be on the spectrum. How do you begin to have the conversation?
Depends on the age of your child, however, If you feel your child is on the spectrum and it hasn’t been brought to your attention by school or any other healthcare professional, the first place I would go to is your GP. Express your concerns to them and they should be able to put you in for a referral. If you are still seeing your health visitor then bring your concerns up with them, if that doesn’t amount to much, see your GP. I won’t lie to you, it is a very long drawn out process and prepare yourself for a lengthy wait (This all depends on where your postcode is as well to how long the waiting time is).
We were lucky in the sense that the school brought this to our attention and they could refer Madison to speech and language to be assessed who then referred Madison onto a Paediatrician.
- Did you find your Dr/ health visitor was helpful with early milestones?
I always brought Madison’s milestones to the attention of health visitors, especially that she didn’t walk until she was around 19 months old and her speech wasn’t full sentences, they just told me it would come with time and don’t be concerned. It was only when Madison started school and it was such a huge transition for her that Autism was mentioned.
- Lastly how do you find time to just be yourself/couple when you have to fight so much for the support you need.
We do find we do a lot for Madison, we are the only ones that can advocate for her, she can’t do this for herself, so a lot of time and energy goes into this. We do our own things every now and then, most of my time is revolved around rum and Chris’s time is spent training the dogs, however, we do date nights every now and then and catch a film and a meal out. We love spending time with Moo she is such a character. We are lucky that we have a good network to look after Madison and they know her quirks and she knows them, so all is good with the world!
Thanks very much Claire for sharing your story with me…
Please subscribe and share her blog https://lifewiththeaword.wordpress.com/2018/05/27/media-and-the-a-word/