The Special Needs Jungle Story Selection

The Special Needs Jungle weekly news review is back! It was supposed to be away for just a week while I was in Sweden but last Friday I was just too tired to even think about it. The conference was fantastic - so good to connect so many people from across Europe who are all affected by limb deficiency and who are all trying to improve the lives of other people with similar conditions.
This past week, I've been working hard on our Family Voice Surrey response to the Education Select Committee's call for responses to the draft SEN bill. Having seen a number of other responses, there is a wide range of opinion for the committee to consider and I hope it takes note of everything.
This week's stories that I've found include an array of great blog articles - if I've missed yours, just leave it in the comments.

One of the comments we hear a lot at Netbuddy is ‘Why does everything for people with special needs cost so much?’ Everything from toys to adaptations – it all seems to come with a hefty price tag. In these strap-cashed days, it’s even more galling for parents to have to fork out more.

Today is the deadline for the Education Select Committee’s call  for responses to the draft SEN bill.

Following the evidence of home educators in September, the Committee will hear the views of local authorities and from the newly-appointed Parliamentary Under Secretary at the Department of Education, Elizabeth Truss MP, who has taken over the home education brief.

Today I’m feeling a little sad. Son2 is off school again with joint pains in his legs. We’ve just been for a blood test and he is awaiting an appointment later this month with a specialist in London

Emma's story of Fetal anti-convulsant Syndrome

“Why do you bother speaking out/attending meetings/creating surveys (delete as appropriate), nothing ever changes”. I hear this all the time, not from practitioners but from other parents.  Some parents know me well enough to know I am not the type of person who can just accept things and some know that I am in my element when facing a challenge.

I am grateful for ..I was very excited to see this prompt because I like being able to sit and think about the good points on life.  It is very easy to see the negatives in things, especially when you have incidents occur like we did this week.  It is easy to let frustration drain you.  To make you question your faith in fairness.

Today I attended the “Managing Difficult situations” training workshop provided free for Parent Forums via Contact a Family.

A few days ago I fell asleep on the landing. I was waiting for my son to go to sleep.  He is not 1, he is 11, but he tells me that he is too afraid to go to sleep on his own.  That's Asperger's for you.

In the largest study yet examining proposed changes to the autism diagnosis, researchers say far fewer people would be cut from the spectrum than previous studies have suggested.

 

Tania Tirraoro
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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two sons with Asperger Syndrome.
Journalist & author of two novels and a guide to SEN statementing. PR & social media expert. Rare Disease & chronic pain patient advocate.
Tania Tirraoro
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