This week on my coffee break series I am chatting to the lovely Jodie who writes a blog called Autism With Lots of Love and Affection about her children particularly her daughter Lola and how autism affects them as a family. As it is still April and Autism awareness month I thought it would be great to feature an autism blogger after sharing my own experiences of autism here.
|Jodie and her lovely family|
First things first we cant have a chat without a cuppa, are you a tea of coffee drinker? How do you have it? What about biscuits what are your favourites?
Definitely not, I’m a tea drinker and my favourite cup of the day is my morning brew, two sugars, with a fair bit of milk but properly brewed. I’m really chuffed just recently because my eldest has just learned how make one properly!
I came across your blog recently and have read loads of it but for my readers can you give them a little intro as to what your blog is about please?
I am so honoured you’ve been reading my blog, thank you so much. My blog is primarily about My daughter Lola, she is diagnosed with autism and it’s called Autism With Lots Of Love & Affection as a play on her name. I write about other disabilities too, as Lola is overall undiagnosed and we are a part of a genetics study called 100,000 genomes project, she has a multitude of diagnoses.
Can you tell us a bit more about you and your family?
My name is Jodie, and I am 31, engaged to Kenny and we have three children, Stanley – 9, Lola – 7, and Connie Mai – 4 (going on 34) Lola and Stanley both have diagnoses of ASD, and ADHD.
Lola is also diagnosed with microcephaly (which basically means she has a small head) and global underdevelopment of white matter on the brain. She suffers with severe anxiety. Sensory Processing Disorder, and has hypermobility and flat feet. She is an obligate carrier of a rare disease called X – linked adrenoleukodystrophy which she was passed down from dad, who suffers with the disease himself – a full explanation of X LInked ALD –
What made you decide to start blogging about your families journeys through diagnosis’ and the day to day life of autism etc?
I started telling my journey from birth to diagnosis in a Facebook group for friends and family that were interested in learning about us, which progressed to a public page and then eventually writing more and more into blog posts and having a website fully designed to upload them all to. When I started the group I was in a bad place fighting for my daughters education and getting her the services and assessments she was rightly entitled too. She masks her difficulties really well and so slipped through the nets because it was actually quite hard to believe but now she’s getting older and her peers are progressing and she isn’t it’s much more obvious. I think I just used the group as a place to vent, and it all progressed from there.
I love reading blogs about autism as my son Ben has autism amongst other issues however I choose to not really write much about it. Do you think your children will mind you having written about them in the future? This is one thing you see which has put me off writing much about Ben as he is very able in some ways and I worry what he would think about reading into his difficulties etc.
All three of mine know now that I write about them, Stanley and Lola have each done live videos for me for my blog, since Lola has been doing these she’s really gained in confidence and even though I have to script it out for her she really gets involved and makes sure it’s just perfect before I’m allowed to post it. I’m not sure she fully understands the exact ins and outs of face book, for example – quite how many people read about her. But for now I share things that she feels comfortable with and I use my platform to help others, sharing our experiences and achievements have helped so many other people. When we were first going through the beginning of our journey I would have loved to have found a page like mine. When I get my camera out now she goes into automatic posing mode like she knows where the photos are going. I always ask her if I can share this photo or that photo.
How do you find time to write so much on your blog? I mostly blog whilst my son is at school but also do housework etc in that time too, are you some kind of superwoman!?
Ha I wish! I always said if I can have any superpower it would be to fly, then I could at least have 10 minutes feeling free. I do spend a LOT of time on social media, I don’t just have a Facebook page and blog, I have a support group for parents of children with disabilities here. I am founder of the support group 100,000 genome project, which is the only one around and could potentially have 70,000 members if everyone finds us here. I also recently set up a bloggers support group, which I am using to help people buddy up and find friends through the blogging world. Oh and I am writing children’s books, the main character Loola, is based on my daughter and I’m aiming at an audience of children without disabilities to understand children like Lola. The character is a gorgeous little bunny, and I am in love with her, and cannot wait to launch my new books. You can find that here
When I first started I was on my own and reached out to a few autism and disabilities pages and was basically ignored. I think that the bigger pages don’t really seem to want to know the little pages which I feel is quite sad. There is of course a couple of exceptions to that and one of them is a lovely lady from America and of you of course! So thank you for having me.
As it is autism awareness month (I wrote a post earlier in the month about my feelings of awareness and what I hope for etc) what are your hopes for awareness as your children grow? What would you like to see change?
Good question this – if i’d have been asked this yesterday I’d have probably said that I want other people to give kids a break more, there’s such an expectation on kids nowadays and I think it’s too much, it puts pressure on parents when children aren’t conforming to societies rules and for parents of children who are able to mask their symptoms means a bigger backlash for us at home because of this.
Today I would like more people who have experience of disabilities – and who are living with physical disabilities that are quite obvious – to have more understanding and awareness of people who have children with invisible disabilities. Just today I had an experience when I was waiting for a disabled toilet. A family of 4 entered who just wanted to bypass the queue of the other toilets and so I just patiently waited and as I waiting someone behind me asked if the queue was for the disabled toilets I said “yes we’re in it” her reply was “well it’s a toilet for disabled” I replied yes my daughter is and that’s why I’m waiting for it.
She had a young child in a disabled buggy who was visibly distressed, and even though she was ignorant to my child I still offered her the toilet first because she really needed it. She declined.
I don’t always opt for the disabled toilets, it depends what the communal ones are like, if they’re overcrowded, small, smelly, loud, etc ill wait for the disabled ones. It also depends on Lola’s mood, and whether she desperately needs to go or not. There are a number of things that I need to factor in to determine which ones we will use and I need to make that decision in a split second sometime
Is there any aspect of writing your blog that you don’t enjoy or that you find difficult?
No, I absolutely love it all! Haha
My readers may not know much about autism can you point us in the direction of some of your posts you would recommend about how autism affects your family?
Of course, I have a few which are my most popular, that I’d like to share if that’s okay? This one is called The forgotten Carer. I wrote it after having a particularly bad spell, and feeling let down by all services here. When I speak of being a carer, I do not mean the normal things that each and every parent does day in and day out. I mean duties above and beyond those.
The next one is called – Autism: Don’t Force Me Into You’re World Before You’ve Experienced mine here.
I also have some blog posts on Sensory Processing Disorder here, Evie is a sensory seeker and avoider. I have a handbag full of chews and tanglers. She’s a destructive chewer so we choose toys based on the chew durability.
If any one would like to follow my journey from Birth to diagnosis i have a dedicated page on my blog called Lots Of Love Actually which can be found here.
If you would like to follow Jodie on social media here are her links, Facebook, Twitter, and Instagram.
I hope you have enjoyed reading this weeks coffee break chat, to read my previous coffee break chats click here. I chat to a new blogger, inspiring person or just someone different every week to bring you something different to read on my website and hopefully if you are following my website as you are trying to lose weight then it is an extra distraction from boredom eating too.
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