Welcome to the third in our SEND blogger spotlights! Today we feature two more bloggers, Helen, who blogs about life with her autistic son (and the rest of the family) and their ups and downs.
Then we have a very new blogger, Lorna, who has started her online life to boost her campaigning for Changing Places, the charity with a mission to make Britain's loos accessible to all.
Life and ASC
Hi, I’m Helen. Mum to two (aged four & seven), living in Buckinghamshire and working as a project manager in London.
For two years, I have been on a rapid learning curve after my son was diagnosed with autism at the age of five, when his behaviour suddenly became challenging after starting Reception. Life had taken an unexpected turn and with little in the way of support or guidance, I was frustrated by my lack of knowing what to do, my inability to bring about a change for my son and the feeling that I had no voice.
Since then we have experienced so many things, both amazing and challenging. We have learnt about the parents we need to be for our son, and our approach to many things has definitely changed. There have been lightbulb moments when we have managed to unravel why our son struggles in particular situatations, frustrating moments as we battled with challenging behaviour, disheartened moments as we lost the battle with not one but two schools, and joyful monuments when we saw our son reach a milestone (like writing) after battling for years.
My blog has been my way of finding my voice and capturing what I learnt along the way. I blog about our experiences as I find out more about autism, my son’s needs, dealing with demand avoidant behaviour, getting an EHCP and more recently my own challenges with anxiety.
If my magical wand was fully charged and granting SEND wishes, I would create SEND assessment centres where families like ours could meet with all the different professionals in one place when being assessed for a diagnosis and/ or an EHCP.
The paediatrician, Child Psychologist, Child Psychiatrist, Speech and Language Therapist, Occupational Therapist, Educational Psychologist and other relevant professionals all working together in one place to make a full assessment in collaboration with each other.
Parents providing insights into their child’s developmental history and other important information once. The professionals sharing their views and insights as a team, and case workers liaising with families through each step of the assessment process to support and guide them each step of the way.
With less form filling, more collaboration and combined assessments this could mean a less stressful experience for families and less time waiting for a diagnosis. Now that would be magical!
I'm Lorna Fillingham and I'm a very new blogger! I had been thinking for a while about starting a blog, but had held off. What would my kids think when they read it in a few years was one of my concerns (and to address this I've renamed them, Flossie and Ben ?!). However, I believe that ours is a story to be told.
We go out ALL the time, partly for my sanity, partly because I've always loved gaining new experiences, and felt that it was good for our family to do so too. However, Flossie is seven and she has severe learning and physical disabilities. The world is slowly closing to us as she gets bigger and older. I am trying to fight the tide and trying to improve accessibility in the places we go.
I've been campaigning for increased provision of Changing Places toilets for a couple of years now (my petition can be found at http://bit.ly/toilets4all ) and I've also advised local museums and childrens centres on ways to improve accessibility.
My blog so far has taken a diary-type direction, I'm hoping that it will appeal to everyone and show that we are a "normal" family, just with a few extra needs in terms of access. I'm hoping that it will make businesses rethink the services they are providing, and at the very least I hope to raise awareness of the obstacles we can face on a daily basis. I am aware that different familes face very different obstacles, but this is our story, our adventure, come and join us for the ride.
Founder of Special Needs Jungle. Parent of two young adults with autism. Tania is a member of the Whole School SEND Expert Reference Group for SEND Leadership, the Ofsted SEND Inspections Stakeholders Group, and sits on the Advisory Board of the Royal Holloway, University of London Centre of Gene and Cell Therapy. She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
Founder of Special Needs Jungle. Parent of two young adults with autism. Tania is a member of the Whole School SEND Expert Reference Group for SEND Leadership, the Ofsted SEND Inspections Stakeholders Group, and sits on the Advisory Board of the Royal Holloway, University of London Centre of Gene and Cell Therapy.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.