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Friday, 11 November 2016

SEND STARS 1

I'm happy to announce the start of a whole new regular feature called 'SEND STARS', where I'll be introducing you to some amazing bloggers and giving you a little insight into their lives.

SEND stands for Special Educational Needs and Disabilities and you'll notice that all the writers in weeks to come have SEND in common. They are STARS because they are parents or carers of, or work with, children with SEND, and they are sharing their personal stories or campaigning for change in the form of a blog.

The blogs lead to a greater understanding of challenges faced by these children but I love the fact that the amazing personality of each individual child is being highlighted along the way too. Those with SEND in their lives tend to be very busy - extra appointments, letters to write, meetings to attend, law to learn and the rest, so it's a wonder any of them find time to write at all. I do hope you'll pop over to their blogs or leave them a comment of support below (or do both!) to thank them for being brave and sharing their stories.

So here we go with week 1... and a lady whose fab words you will probably have already seen before as she's written for The Huff Post, Family Fund, The Mighty, Autism Awareness.com, Break the Parenting Mould, Firefly, A Plus and For Every Mom!

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Who are you and how old are you? 
I am Miriam Gwynne and I am far too close to forty for comfort!

Who else is in your family and what are their ages? 
I am married to Nigel and we have eight year old twins called Isaac and Naomi.


Which members of your family have SEND (Special Educational Needs and Disabilities) or additional needs, and what are those needs? 
Both of the twins have additional support needs. Isaac has a genetic condition called Neurofibromatosis type 1. He also has severe non verbal autism, global developmental delay, significant learning difficulties and is vision impaired. He has seizures and has a tumour on his optic nerve called an optic glioma which is a form of brain tumour. Naomi has autism with anxiety and an eating disorder. She also has selective mutism. My husband has depression and also NF1 too.

Is there an official diagnosis and if so, what is it, at what age was it given and by who?
Isaac was diagnosed at aged 3 years nine months with severe autism and global delay. He was diagnosed with NF1 six months later as well as seizures. We found out about his brain tumour this summer.

Can you list the job roles of everyone you've been involved with on your SEND journey so far?
Over the journey so far we have seen so many specialists and professionals. These have included medical specialists like neurologists which Isaac still sees every few months. Both children see community paediatricians every few months, Isaac sees the eye clinic every 8 weeks and both have separate CAMHS teams. Neither is able to get speech and language on the NHS so we pay for this privately.

Are your children in school (if so, what type of school) or home educated? 
Isaac attends a special needs school where he receives 1-1 support and Naomi attends mainstream where she is thriving. Both children are still in nappies.

What would you like others outside the SEND community to know about your child's condition? 
I would like people to know that whatever diagnosis my children have they are still so alike their children in many ways and they deserve respect and inclusion. They are not a burden to society and in fact they make so many people smile. They are worth investing in and getting to know!

My children should not be here. I struggled with infertility for ten years and finally I was offered IVF. Due to also living with a life threatening condition (which I have never mentioned in my blog to date) I was given a less than 1% chance of falling pregnant or being able to carry a baby. In fact I fell pregnant with the twins first time and worked throughout my pregnancy. They were born perfect at almost 38 weeks and I even breast fed them both (how I ever did that escapes my memory lol)

Tell us a fact or funny story about you or your life which is totally unrelated to SEND.....
A funny story that happened to me recently was in a supermarket. I had my son with me and needed to heed the call of nature. I took him with me and squeezed us both into the cubicle together. He can not speak but loves hand dryers. As soon as he heard the dryer he somehow managed to unlock the door and run to the dryer to flap leaving me sitting on the throne, knickers on my ankles while everyone looked at me! I was so embarrassed but my son found the entire thing so hilarious and proceeded to laugh so much the entire bathroom full of ladies were all laughing too.
For some reason though I have started shopping elsewhere now!


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Miriam's blog is at www.faithmummy.wordpress.comHer Facebook page is faithmummy, she tweets at @gwynnemiriam and she is also on YouTube as Miriam Gwynne. Please go show her some blog and social media love!


There's still chance to vote for your favourite blogger in the BAPS Awards - you can nominate here before 18th November! Read more about what and who these Awards are for in my post Baps Blogging Awards- maybe you could be a BRA?!


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